For The Love Of Mel

Here we go again...

2012-01-27T20:39:00.003-07:00

As many of you already know, Melanie has relapsed. She found a lump in her breast and has been in the process of getting it checked out. In this process, we've learned that her leukemia has raised it's UGLY head again (the lump in her breast is primarily water that will dissolve over time). There have been so many different emotions felt by all of us upon first hearing this news...anger, despair, fear, sorrow, exhaustion, just to name a few. There were lots of tears shed. As the reality of this has settled in, we have also had feelings of hope, faith, and trust. Melanie is ready to do what she has to, in order to give leukemia a good old fashion kick in the butt!

Melanie spent the day in Salt Lake. She underwent a lumbar puncture (with chemo injected), a PET and CT scan, and a bone marrow biopsy. I spoke with my mom tonight and she said Mel's spirits are good, but she is really tired. Sleep will be a welcome friend tonight.

We will have more details on Mon. about what exactly we are facing. The doctors have yet to determine where her leukemia is. It hasn't manifested itself in her blood stream yet, but there are cells somewhere. The doctors will meet with Mel and our parents on Monday at 1:30. Mel will get a new central line that will be hooked back up to Shithead (her pet name for her IV pole). She will be admitted that day as well. She will begin induction next week. This is when she receives high doses of chemo. Mel will receive these treatments for 6 weeks, and will remain in either the hospital, or the Salt Lake area during this time. If she receives any radiation, it will be localized and not the full body radiation she had last time. The doctors are also looking for another stem cell donor. Her first donor has already said that he would be happy to donate again, in fact, there are still more cells of his at the hospital. The doctors told Mel that they will have to try a new donor's cells this time.

My mom will stay by Mel's side like last time. The plan is to have Kaden stay with our dad and visit Mel on the weekends.

When Angie and I talked today, we commented on how it feels like we were just barely here...updating the blog. I have to remind myself that Mel has had 2 awesome years of good health thanks to her first stem cell donor. We have had lots of fun times over these last two years. Blessings!

Melanie would like you to check the blog for information, Angie and I will update it as often as we can (hopefully daily). Visitors are allowed at the LDS Hospital as long as you are healthy :). Melanie loves to get cards and LOVES your prayers. Flowers are not allowed in the bone marrow unit.

Thanks for all of the concern and love for Mel. She is amazing to all of us. We as a family believe in miracles, and the power of prayer and fasting. We have faith in our savior, Jesus Christ. Whatever the outcome is, we believe it is part of our Heavenly Father's plan for Melanie.

GO, FIGHT, WIN Melly-elly!

The Picture On My Wall

2011-11-13T22:37:00.000-07:00

I get a kick out of seeing people look at this picture that is on my living room/kitchen wall. Most people think it is a picture of the Savior with a baby. Well, that "baby" is me. I don't know if my cousin Jen realizes just how special and important this picture is to me. Jen drew the picture and brought it to me at a time when I really, really needed it. We had many laughs the day she and some of my other wonderful family brought the picture and visited when I was living with Angie. The stares from Jaden who didn't know what to think of my bald head, the tantrums Addie threw, bonking of the heads, and many great laughs were wonderful and desperately needed at the time. Most of all, I was feeling a deep sense of gratitude for a family who was aware of my needs; and, I believe, a cousin who listened to the Spirit and brought me a true treasure.

Jen used this photograph as the basis of her drawing. My mom took this picture when I was waiting to go have a lumbar puncture. It was a moment filled with anxiety and fear. The lumbar puncture process was very rough for me. Before and during each procedure I would hold my worry rock given to me by Kaden, my faith rock given to me by the Gladwins, and my Diamondbacks dog tag given to me by the Providence D-Backs team. Doing so helped me control my anxiety, focus my thoughts, and find comfort. How fitting for Jen to use this picture as the "model" for her drawing.

While some may think it odd, I made a very conscious decision to enlarge Jen's drawing and hang it in a very prominent place in my condo. You see, I believe it is extremely important for me to always remember the lessons learned while battling leukemia. This picture serves as a reminder of my experience. Most of all, this picture serves as a reminder of the never-ending love my Savior has for me. It serves as a reminder that my Savior was with me and helping me in my darkest hours. It serves as a reminder that my Savior will succor me in my times of need. What blessings!

Today marks the two-year anniversary of my diagnosis. So much has happened since. Lately, my thoughts seem to center on wanting my life back: wanting my job back, my strength back, my energy back, my body back, my memory back, my mental sharpness back. Yes, I could go on. Yet, I wouldn't want to change my experience.

My perspective is different. My perception is different. My understanding of life and others is different. I know there are very loving and generous people all around me. I know, through the examples of others, what it means to serve. I know the power of the priesthood. I know the power of prayer. I know the power of fasting. I know the power of many praying and fasting for one. I know the feeling of comfort from a higher power. I better understand many things. So many lessons learned!

More than anything, I have learned what an amazing family and what amazing friends I have. I have had so many angels surrounding me. What a blessing!

Yes, I do want my life back, but I am learning to embrace the life I have and to enjoy the blessing of being alive.

Much love,
Melanie

My Health

2011-10-30T01:29:00.009-06:00

It's been so long since I did an update on my health that I don't know where to start. When I went to my 1-year-from-transplant doctor appointment, a plan for the coming year was laid out for me: labs drawn each month, going to LDS Hospital for a clinic visit every 3 months, and bone-marrow biopsies every 3 months. The risk for a relapse is high within the first 2 years of remission. For this reason, Dr. Peterson (primarily) and my other doctors agreed that doing regular biopsies would help them monitor my progress and possibly find problems before they became full-blown leukemia or something else. The plan has stayed the same for my labs, and my labs have been looking great! My numbers still fluctuate a little, but nothing that has concerned my doctors. I had my biopsy in May as planned. Recovery was long!

Usually, after a biopsy I am sore at the site for a couple of days and then notice the bruise for a couple of weeks. Nothing too bad. After my biopsy in May I had a lot of pain. My recovery was not the usual! Worse than the pain was the numbness. My left butt cheek (never one to mince words) was numb for about a month; additionally, I couldn't sit for more than 5 minutes without pain and numbness. Over time the pain has subsided and the numbness has gotten better, but both are still an issue. When my coordinator, LaDee, called to schedule my biopsy for August, I told her about the issues I had after my May biopsy. She discussed the sitution with my doctors and PA's at "tumor board" (a weekly meeting where all medical people at the clinic discuss the patients) and it was decided that my biopsies would not continue as planned. There is not data stating that doing a biopsy every 3 months will "catch" a relapse before it hits full force. I could have a clear biopsy one week and a week later have acute leukemia. Dr. Peterson still wants the biopsies done, but he, and my other doctors agree that the problems the biopsies cause are not worth the "possible" rewards. I hope that all made sense. I am fine with not having biopsies. We just don't mesh!!!

My thyroid is still an issue. I was going to a doctor in Salt Lake, but was not too impressed with him. So, I decided to go to Dr. Wood here in town. I meet with him next week. I know my TSH and FreeT4 are off (for those of you familiar with those labs) and that my meds will have to be adjusted. I do feel a lot better than I did early this year. I am in awe of how much your thyroid controls/affects. When my thyroid was waaayyy low: my hands hurts so bad that I couldn't stand to open and close them, my legs ached, my skin was so dry (especially my face and eyes), my hair was falling out, my eyelashes fell out, and I had absolutely NO energy. This is what my eyes looked like when my TSH was so low:

This picture doesn't do it justice; my eyelids were so red and hurt so bad! I think everyone thought I was crying all the time. No matter where I was or who I saw (other than my family) I was asked, "are you okay?"

I am feeling sooooo much better now!!! I know that I will feel even better when my thyroid is completely regulated (that will happen, won't it?).

The biggest issue I am dealing with is my muscle atrophy/hip/scar tissue/back/??? problems. I discussed these issues at length with Dr. Hoda and LaDee at my appointment in August. This was the breakdown:

1. I have had 13 bone-marrow biopsies in the same location. Can you say scar tissue.?. My biopsy in May was the last straw.

2. I gained so much weight so fast that my back is not happy. Bless Dr. Hoda's heart. He told me that it is not my fault that I gained so much weight - that when your thyroid quits working you have no control. I accept his explanation for the most part; however, I think I probably ate too much pumpkin chocolate chip bread. The remedy for this is to get my thyroid under control and to get my fanny in gear.

3. My nerves have been damaged from the biopsies and lumbar punctures. So, I had an MRI the same day as my appointment in August. The purpose of the MRI was to find out if there was anything visible, like a mass, affecting my nerves. I followed up with a neurologist. He was a quack! Honestly one of the most bizarre appointments I have ever had. Nothing was determined, but I did learn a little bit about looking for a coincidence and doctors not wanting to be sued.

4. Remember my hematoma:

I remember it so well! Another picture that just doesn't do "it" justice. The pain was unbearable. So much so that I went back into the hospital for pain control. I used a walker for awhile and luckily still have it. I have used it a couple of times since May. This particular experience left my left leg much weaker than my right and seems to be all tied up with my nerve issues.

What to do about this muscle/hip/scar tissue/back thing? I don't really know, but I think I am on the right course. I am doing physical therapy, massage, chiropractor, and trying to get stronger. My balance is off, my endurance is poor, my muscles are weak, stairs are still difficult - but, I do recognize that all of these things are better than they were. I have to remind myself that it wasn't too long ago that I could not get out of the bathtub by myself, I could not skip, and I could not get both feet off the ground to jump. I am thinking that numbness is going to be my friend for quite some time. Hopefully, the pain and burning from the numbness will decrease over time.

There you have it! My health is better than it was. Leukemia is still in remission. It's just a matter of dealing with and working through the residual effects from my treatments.

Much love,

Mel

Kaden

2011-08-18T00:49:00.023-06:00

Last school year, Kaden had to do a project for the school's history fair. He chose to do his project on Jackie Robinson and how he changed the face of baseball. He initially wanted to cover his entire board with baseballs that were cut in half. I explained to him that I thought it was a great/creative idea, but that doing so would cost $90. So, he found all the balls he could (15) and my friend Dave cut them in half for him. The final product wasn't what Kaden envisioned, but he seemed to be pleased. I think Kaden did an outstanding job. His teacher must have too - his grade was 200/200.

I can't believe Kaden will be starting 9th grade next week. Today at registration Kaden told one of the secretaries that he is not excited for school to start. I am excited and anxious. Sixth, seventh, and eight grades were a little rough. I know this year is going to be much better! I am hoping that Kaden's desire to play baseball will be a great motivator for being at school and getting assignments turned in. I am really looking forward to having a school routine going again.

Over the last few months a few exciting things happened:

Kaden decided to tackle shaving without any help from his grandpa or uncles. These pics are from his first time shaving his face.

We had a great time on Mother's Day.

Kaden played his last season of city-league baseball. He was fortunate enough to have John Lee as his coach for the last 5 seasons. His Grandpa Balls and Uncle Mike were his coaches a couple of times too.

Kaden's pitching form improved a lot this year. He did a great job pitching and playing 3rd base. Still, his favorite position is 1st base. He got to play it twice this season, and both time he went out with a huge grin on his face. John is a wise coach and was focused on helping Kaden become a more versatile player.

Batting was good. Kaden was frustrated a lot because he kept getting shallow hits, but he always moved the runners. He had some great hits when they were needed.

Can you find Kaden in this picture? He is the one in the SF Giants hat. I didn't realize he switched hats until everyone was done taking pictures. Kaden has played ball with many of these boys since he started with t-ball. A few of his buddies decided not to play this year. Kaden was bummed about their not playing. I just like that he has had such a great group of boys to play baseball with for so many years.

Kaden played Legion ball with the SV Bobcats for his first time. It was an interesting experience. A coaching change was made just before Legion began, so it was not very organized. Kaden did get some good experience and got to know the boys he will be playing ball with over the next few years. Daniel Lee is shortstop in these pictures. Kaden has played ball with him since t-ball.

Kaden was nailed in the foot when at bat one game. I was impressed that he shook it off and kept going. The first picture was taken when we got home after the game. You can see the thread marks from the ball. The second picture was taken after the swelling went down.

My family had a lot of fun making fun of Kaden and his major farmer's tan.

Kaden and I went to Bear Lake with Stefanie, Taylie, and Lindsey a few weeks ago. Kaden changed from a vanilla/chocolate twist . . .

. . . to neapolitan. I think he will listen to me next time I tell him to put on sunscreen. Especially when at Bear Lake. He had a great time while we were at the lake. It wasn't until we were driving home that he started hurting. Thank heavens for ibuprofen!!!

Kaden and I went to our first ReAL game of the season. One Republic was supposed to perform after the game, but ended out rescheduling. We were not amused. We had fun regardless. Our seats were on the front row. We had a great view of this bald man.

Fabian Espindola is one of my favorite players to watch. He is fast, risky, and just awesome!

Then there is my man, Andy Williams.

Now for my favorite man of all.

That's all the blogging I can handle for now. I have more to blog about: family ReAL game, Bear Lake, Colorado, doctors, randomness.

Much love,

Mel

Ramblings

2011-03-08T23:07:00.002-07:00

Rambling #1: Yes, everyone, we successfully moved to our condo! It took us a week (or more) to get moved but, hey, I didn't have any deadlines to meet. I am so grateful for my amazing family and friends who helped us move our stuff from my parent's house and my storage shed. There were times when I was sleeping and others were working. Thanks for the love! Kaden and I are both loving our new place. I'm sure I'll post some pictures eventually.

Rambling #2: Hooray!!! I know why I am still so tired all the time, why my muscles are so weak, why I've gained so much weight so darn fast, and a few other "whys." My thyroid is not working. Apparently, it's a common post-transplant issue. My radiation killed my thyroid. Plus, my vitamin D level is very low. Both issues can be taken care of with some nurturing, time, and meds. Patience will be required.

Rambling #3: My stem-cell donor has a name - Jordan. I do have his last name, phone number, and e-mail address, but that is all I know at the moment. Oh, and he is now 28 years old. I sent him an e-mail and hope to here back from him soon. My emotions are overwhelmingly full when I think about him and what he did for me. A definite tender mercy.

Rambling #4: Kaden will be playing with a super-league baseball team. I am beyond excited for him. He loves baseball! We are hoping he will be able to play with the city league too. There is no such thing as too much baseball. We love it!

Rambling #5: A lot of people ask me about my plans for teaching. I am not teaching at this time, but plan to go back next school year (2011-2012). I don't know that I will be teaching at Providence. I will teach where the District needs me and the grade the District needs me to teach. So exciting!

Much love,
Mel

An Update

2011-03-04T22:24:00.009-07:00

I haven't posted on Mel's blog for awhile now. Mel wanted me to post about her last two visits to the LDS Hospital. On February 11th, Mel had her one year (since transplant) check up. She seemed so calm. I was so nervous for her. She had labs drawn, a chest x-ray, a respiratory work up, a bone scan, and a bone marrow biopsy. I told her how brave she was and she told me that you just do what you have to. I was able to watch the bone marrow biopsy and it was fascinating. They had Melanie pretty much out of it, thank goodness. It looks very painful. I asked the nurse if bones numb and she said that they don't. Here are some pics from the visit on Feb 11th.

*** Warning: If you are faint of heart, or don't like needles or the sight of blood...skip these pics.

Mel was really tired and did lots of waiting around for doctors and such. She was able to catch a little sleep before the biopsy.

Mom and I. There for support and encouragement.

The down side of having Mel's central line removed is the need for IVs and needle pokes. They tried to put the IV in her hand, but they collapsed a vein. This IV was really uncomfortable for Mel and was just in a bad spot.

Can you believe Mel is about to under go a bone marrow biopsy? Look at that smile! She is amazing! Peter is in the background. He is the only Dr. that Mel will allow to do her biopsies. He is so kind, patient, and knowledgeable. He is a very likeable guy.

First, they get Mel comfortable. She was in this position for quite a while. They used pillows and such to get her aligned just right. They prepped the spot on her hip/low back with iodine and injected lidocaine in what seemed like a dozen different spots. This was the only part that made me a bit woozy. It was a long needle !

Once she's numb, and the verset is in her system (anesthesia), Peter put this long needle about the thickness of a knitting needle into her back. The needle has to be into the bone in order for him to get the sample of her bone marrow. He took several tubes of fluid. Once that was done, he used a different instrument to get the bone sample. It is hard to explain how that works. It took a couple of tries, but he finally got a good sample. After they got the samples they needed, they applied ice and pressure to the injection site and had Mel lay down until the anesthesia wore off enough for her to walk.

A lab tech was present in the room during the biopsy. She put different amounts of fluid on these slides which will be analyzed.

We went to Greg's house for a few hours so Mel could sleep off her anesthesia. Charise made us a yummy dinner (thanks Charise) and then we headed back home.

The Results

Today, Mel had a meeting with Dr. Hoda and Ladee. We were really anxious to find out the results of her tests. Dr Hoda had a binder that contained all of the results. The news is beyond miraculous!! Mel's bone marrow is clear. No leukemia! The trans location is gone. This is where her chromosomes 4 and 11 switched places and mutated. Mel's blood levels look good. Her hematocrit is still a little low, but MUCH better. Her bone scanned looked fine, her respiratory function is great and a lot better than it was when last tested. Her percentage of donor cells went down . It appears that the donor cells did exactly what they were supposed to do, but the graft has failed. It isn't necessarily bad news given the rest of the report. We are forever grateful to her donor. Without his cells, Melanie wouldn't be with us today. Mel's iron is high due to all of the blood transfusions she's received. They will be doing a scan of her liver to make sure it isn't in danger. At some point they will have to do blood letting to get rid of the extra iron. They just drain blood from her, which her body will replace.

Because Mel's immune system was wiped out in preparation for the transplant, she started to receive her immunizations again today. She will be getting all of the vaccines that she received as an infant. Her arms were really sore from all of those shots. She got three in each arm. She mentioned that she knows how her kindergartner's felt now when they got all of their school shots.

Ladee talked with Mel about her donor. After a year, you can request information from them. Mel filled out a form and specified what info the donor can receive about her. I would love to meet her donor! Ladee said that she thinks he has already requested Mel's info. It will be exciting to know more about him.

Dr Hoda said that Mel will be at the biggest risk of relapse for the next year. We have faith that Mel will be fine. Melanie has tremendous faith to be healed, it is one of her gifts of the spirit. She is so optimistic!

It was fun to see the staff that cared for Mel on the 8th floor of LDS Hospital They are second to none! They had plenty of hugs and words of encouragement for Mel.

Ladee, Mel, Dr Hoda.

This has been such a journey! It has also been an incredible testimony builder for all of us. We as a family believe in miracles. We know the power of prayer and fasting. Thank you to all of those who have cared so much for Mel. I know that your kindness really lifted Mel's spirits in her darkest hour.

Valentine Time

2011-02-14T22:16:00.006-07:00

We have done a fun activity for many occasions so far, we can't forget Valentine's Day. Our Valentine activity consisted of make cards for Aunt Kim and Aunt Joanie, and making sugar cookies. Cami helped by cutting out some large hearts for the event. The kids enjoyed putting their personal touch on a heart for Kim and Joanie.

Ethan (I love this picture)

Kaden (looking very happy)

Tate (choosing carefully)

Stephanie helping Taylie . . .

and Lindsey (our tornado can never be left out)

I love the process of making sugar cookies; especially when Kaden, my nieces, and my nephews can help. However, I decided that the Valentine cookies were going to be different. I bought the cookies from a bakery. I saved a lot of energy!

Eli was very creative and careful with his decorating.

Taylie just does whatever and licks her fingers a lot.

Tate wanted perfection, with some help from Aunt Mel he was satisfied.

Stephanie and I frosted and decorated most of the cookies.

Can't help but love this taterbug.

Kaden's Birthday

2011-02-09T22:36:00.006-07:00

My boy is 14!!! Time sure does fly. I didn't even talk to Kaden before he went to school, so I was very excited when he walked through the door after school. He said he had a good day at school and that he was sung to several times. I am so blessed to have Kaden in my life. He is a super kid! He is very: loving, thoughtful, kind, witty, generous, good with his cousins, laid back, and on and on. Here are some photos from the afternoon/night.

Pass for four sessions to Hardball, a newer baseball facility in town.

Kaden and Uncle Mike trying to figure this one out. They didn't.

Kaden needs lessons on how to ride this thing. If you know how, please share your wisdom.

Kaden with Lindsey, Eli, and Tate.

Oh Tate, who knows what he was doing. Glad Eli, Cami, and Steph could join in the fun.

Lindsey and "bampa"

Mike and Kaden's guitar that really needs to be cleaned.

Kaden loves playing his guitar!

Tate and our white tornado, Lindsey.

Glad Uncle Andrew could make it.

1 year old and livin it up!

2011-02-06T21:52:00.002-07:00

After 33 years of life, I turned "1" today. I am the biggest one year old I have ever seen, and I have no problem with it! All thanks to a 27-year-old white male from somewhere USA, I am living. All of the prayers and fasting in my behalf, I believe, were answered with what I consider to be a miracle. I was blessed with the miracle of life on February 6, 2010.

I have decided to not continue my story ( . . . continued . . .) on this blog. It's too big of a pain to edit in the blogging world. I will be working on my story in Word once Kaden and I get settled in our new place. When I get enough written to share, or maybe when I am finished writing, I will let the world know.

Oh, and yes, Kaden and I are moving next week. How blessed I have been to have wonderful parents who have embraced us in their home. How wonderful it will be to reestablish Kaden and I as a family in our own place.

Much love,
Melanie

Mom and Dad's 40th Anniversary (January 30)

2011-02-06T00:00:00.007-07:00

Some may argue with me, but I think I pretty much have the best parents in the world. Their love for each other is very apparent in all that they do. My siblings and I are very blessed to have such wonderful examples in our lives. The adults in my family (minus Kim and Joanie) got together for dinner on Saturday, January 29, to celebrate my parent's 40th wedding anniversary which was on Sunday, January 30. We had a great time!

Me with dad and mom

Sister Cami and Bro-in-Law Eric

Sis-in-Law Stephanie and Brother Mike

Bro-in-Law Steve and Sister Angie

Brother Greg and Sis-in-Law Charise

We are such an amazing crew! It takes at least two pictures to get all to look/be in the pic. :)

Let the Baseball Begin!!! (January 14-17)

2011-02-05T22:55:00.017-07:00

Kaden and I are blessed to have so many wonderful people in our lives. We are fortunate enough to know the Triplett family: Jan, Dan, Spenser, Shawn, and Sawyer. When I was in the hospital last December, Jan visited me and told me that the Providence Diamondbacks wanted to make Kaden an honorary member of their baseball team. Kaden was (and is) too old (by 2 months) to play on their super league team; however, he can join them for RMSB's Winter Baseball Camp in Mesquite. A business, or businesses, or people (I can't remember) sponsored Kaden to go with the team last year when I was ill. This year, he was welcomed to join them again and I got to go. Our dear friend Jacqui joined us on our fun excursion.

Getting ready for Day 1 - this was the only pic I took on Day 1

Day 2 baseball game - Kaden is the pitcher

I was very impressed with the camp and how the games took place. To help the players develop as all-around players, each player had to play a different position each inning. The first position Kaden played was shortstop - a position he has never played. He is usually on first base or pitcher. During the game, there are "coaches" out in the field helping the boys. Kaden got a lot of coaching when he was at shortstop. How wonderful! If an error was made that all the boys needed to learn from, the game was stopped so the coaches could explain what needed to happen, or how they could have improved the play. I loved it!

Lunch time - I loved how all the boys sat on top of the dugout one day

Spenser, Kaden, Cody, Shawn

The baseball stud himself!

I was very impressed with Kaden during the camp. He was a great listener! I could tell he was trying to absorb what he was being taught and trying to apply it in practice and drills. I didn't realize the Jensen family from Providence is so involved with baseball. I am learning a lot.

Kaden had an individual pitching and hitting lesson on Day 2. I can't remember the name of his pitching instructor. Kaden really liked him and I really liked how he worked with Kaden. Look how well Kaden was listening!

The hitting instructor was Jed Jensen. He was well liked by both of us too. I took as much video as I could so Kaden can watch and hopefully remember what he was taught.

Day 3 was another great day. Kaden's first station focused on optional field positions. He decided to hit the outfield. The video is of Kaden fielding a ball in the outfield. He is the one running at the back of the video. I was impressed! Kaden is usually an infielder, so I was in awe.

Game improvement time - they were working on quick feet, catching, and throwing

I don't know who that is telling Kaden good job, but I love the smile on Kaden's face.

Here is the Diamondback team after three days of ball camp.

Kaden was all ears and eyes again when Jan and Dan were talking to the team. I love the spirit and encouragement Jan and Dan give. I also love how Dan gives Kaden big "Dan hugs" and kind words. Kaden's face lights up every time.

At this point Kaden came up and asked me if the camp was over. He was disappointed when I told him yes. He said he wanted to keep going. I am glad he has found his love - baseball it is!!!

Time to go home. I look really tired in this picture!

Me and Jacqui - she was such a great help with driving, packing things around, smiling, laughing, and enjoying Mesquite. She was known as my "caddy." I love her! Mesquite was great fun. The weather was wonderful! I did learn that Mesquite is not a very exciting place if you don't gamble and if you can't stand the smell of smoke - even then, I wonder.

2010 Review (January - May)

2011-01-27T23:03:00.006-07:00

The video Cami made for my Celebration of Life party does great job at summing up life during these months. I can't get it to post, so I will have her work on posting it.

Jan - Spent the month at Angie and Steven's house. The month started out real rough, but I got things figured out eventually. I discovered I had three dear angels in my life: Chase, Brooke, and Austin.

Feb - What a hard month! Full-body radiation was horrible and the sores in my mouth were horrible. My Grandma Perkes passed away unexpectedly 4 days before my stem-cell transplant. Kaden's birthday was 3 days after my transplant. I missed all events, but - I was blessed with life thanks to my donor.

Kaden with my dad at grandma Perkes' funeral. I love this picture!

My girl cousins, cousins-in-law, and sisters-in-law

I wish I could have been with you!

March - Still in the hospital for most of the month, but feeling better. My bone marrow biopsy at the end of the month left me with extreme pain.

April - Spent a week in the hospital trying to get my pain under control. The month started out so bad! I was able to come home for good on the last day of April.

May - An amazing fundraiser was planned and held for me. So much money was raised. What a blessing! I am surrounded with love.

Kaden's Birthday
We celebrated when I was at home in January. Cami and grandpa made sure to keep his birthday a special day too.

Reading the card I sent him.

Kaden has been such a trooper through everything. I love him so much!

2010 Review (June)

2011-01-27T22:52:00.004-07:00

June memories:

Having such wonderful help from my cousin Emily. She helped me get my classroom cleaned out. I had help from others too - Thank You All!

Kaden had his 7th-grade-choir concert. I can't get over how excited all the boys were.

And of course . . . Baseball!!!

2010 Review (July)

2011-01-27T22:32:00.007-07:00

July Memories:

Dad flooded the dishwasher when mom was at church.

Logan fireworks

Baseball season ended. Kaden did great this year!

Kaden's Uncle Andrew safely returned home from Afghanistan.

Grandpa Perkes and Grandma Kathy got married.

I got to throw Candy in the Hyde Park Celebration parade!!!

Preparing the posters for the float.

Preparing the candy to throw. My family kept making fun of me for how much candy I bought. I knew I needed more!!! We ran out at the last block. I should have just gotten more candy like I wanted to and told my family to laugh about it inside their minds.

Our parade crew, minus Carmen, Emily, and Stephanie. My friend Stephanie and her daughter began a clothing line focused on being strong. We, my family, decided it was a perfect motto for what we had been dealing with. You can check out Stephanie's goods at www.bestrongnow.com.

My friend Dave was kind enough to let us use his trailer. Mike pulled it with his truck. I think we decked our "float" out real nice.

I loved throwing candy!!!!! Once was enough though. Next year, I will enjoy the parade

from the street.

The end to the lumbar punctures. Major happy day!

Sorry, I posted these pictures in reverse order.

2010 Review (August)

2011-01-27T22:15:00.006-07:00

August Memories:

Kaden's curls and his making his cousins smile

Perkes' Reunion

Kids looking for treasures

Uncle Rolan taking a try at the pinata

Grandpa Perkes giving it a go

Eli demolished the pinata. He hit it until it was off the string.

Cousin Kaye (sp?) taught a line dance. Grandpa Perkes wouldn't stop dancing until he had it figured out. I wonder if grandpa remembers it now . . .

Most of the reunion clan from our family. Some left before we got a pic.

Kaden learned how to play pinochle! He got a double family and a double pinochle in one night.

I was lucky to have him on my team.

My mom and I couldn't resist these dolls at Costco. They have gotten some use, but not enough!!!

I made a bunch of pie cakes. They were good!

Kaden had an excellent 1st day of 8th grade. Things have been going well since. I am so proud of him.

We went to the Bees baseball game for the first time. My nephew Chase's baseball team was the honorary team for the night (or something like that.)

2010 Review (September)

2011-01-27T12:38:00.030-07:00

September Memories:

My birthday is on September 13. I had a nice lunch with my sister Cami and my cousin Emily. Later that night we had cake and ice cream with the family. It was a great day!

On September 17 we had a celebration of life party. It was nice to see some dear friends. I wish more would have come, but who can compete with band and sports. My sister Cami put together a video for the celebration. I will post it shortly.

Eli had the job to keep the chips stocked. He took
his job very seriously!

Kim and fabulous grandma Hill

Me with Grandma Lamb and aunt Tena

Me with dear friends Wanda King and K(C)athy Mace

Chase and Brooke

Dad and Aunt Arlene

Friends watching the video

My dear friend Jacqui. She is a treasure!

Austin and Tate helping to clean up the balloons

Mike helping with clean up

2010 Review (October)

2011-01-27T11:36:00.012-07:00

October memories:

Mom's Birthday

October always starts out with a bang! My mom's birthday is on October 1st. Cami, Tate, Stephanie, Taylie, Lindsey, my mom (Peggy), Kaden, and I went to lunch to celebrate.

We had a birthday party for my mom that night; complete with family, cake, and ice cream.

I love you mom and appreciate you as my mother, caregiver, and my angel.

Pumpkin Walk

I heard nothing but good about Pumpkin Walk 2010. It's a yearly event in North Logan. Very creative people make scenes out of pumpkins and props. Each scene has to go with the year's theme. I don't remember the theme, but I will say that all the scenes were fantastic!!!

Madagascar

Who doesn't love Popeye? (don't answer)

Kaden with the Beatles.

The very cooperative kiddos with Clifford.

Kaden as Jessie, Me as Buzz, and mom as Woody.

Pilot Kaden

Fun Times

My nephew Tate loves to play with cars. He also loves sorting them by color and/or type and arranging them in lines. This was one of his spots, until it was discovered. Another spot was on the living room blinds (Oh how I wish I had a picture of that one).

Tate and my niece Taylie are best friends. She was more than willing to help Tate with his table arrangement.

Have you ever played the game curses? It is fun (in small order). We had a rip-roarin' time one night with Mike, Stephanie, Greg, Charise, Mom, Kaden, and me. Now - suck in your cheeks like a fish so you don't smile, say "bawk, bawk," and then say "that's not funny" before you say anything else. Fun times!!!

Our hunters made it out one weekend this year. Stephanie, Mike, dad, and Kaden. Hopefully dad's back and knees will allow him to do more hunting next year.

Halloween Cookies

I have kept myself busy by planning little events with Tate, Taylie, and Lindsey while the other kids are at school. We had a two-day cookie making event.

Everyone had a turn to help with everything!

Mixing

Sifting

More mixing (Stephanie was able to help for a bit)

Kneading the dough

Preparing the ball of dough to roll out

Sifting flour onto the pastry sheet

Spreading the flour on the pastry sheet (Kaden helped when he got home from school)

Taylie's turn to roll

Tate's turn to roll

Lindsey's turn to roll

Cookie cutter time

Ready to put on the pan - Tate couldn't quite figure out "thumbs up"

Time to go in the oven to cook

We cooked a lot of cookies on day one!

Day Two

Time to frost the cookies . . .

Tate helped me make the frosting. We got started frosting right away. Eventually, Taylie, Stephanie, Mike, Lindsey, and Kaden made it to help us out.

We had some pretty awesome cookies!

Halloween

I love Halloween. I think it is simply fun (I don't care for the scary/horror side of it). I was a bat this year. Kaden didn't go trick-or-treating this year, but did have fun scaring the kids who came by the house to trick-or-treat.

Princess Taylie, Me, and Skunk Lindsey

Goblin Eli, Batman Tate, Me, and Scary Doctor Ethan

Kaden dressed to scare.

2010 in Review (November)

2011-01-26T23:55:00.017-07:00

November Memories:

Thanksgiving Crafts

Two of Tate's creations. He is very linear and organized

Lindsey always participates. The outcomes are usually interesting, but that's what is so fun!

Eric made his way down to help out.

Thanks to Eric, Tate's pumpkin was the only one with a vine.

Taylie, me, and Lindsey showing off our pictures.

Our night ended with some playing of the chimes and Lindsey getting stuck in the lid to the box. I am such a nice aunt. I laughed and hollered at Mike to get my camera. Lindsey was rescued shortly after the picture was taken.

Disneyland

Kaden and I had the opportunity to go to Disneyland with my sister Angie and her family: Stephen, Chase, Brooke, and Austin. I wasn't too excited about Kaden missing a full week of school, but I strongly felt we needed some time together away from our regular surroundings. Our trip was planned for November 14-November 19. Kaden knew we were going on a trip, but he didn't know where (he had his suspicions). Angie's kids had no idea! My parents, Kaden, and I went to Angie's on November 13 to celebrate her birthday. As part of the celebration, the kids: Kaden, Chase, Brooke, and Austin had to help Angie open some gifts. They each got a stuffed Disney character and were told we were going to Disneyland, tomorrow!

They were all very excited.

FYI: The youngest, Austin, had a run in with a cupboard corner just before we got to Angie's house. Austin came home from the hospital with lots of stitches and lots of blood on his clothes. He didn't let this mishap affect his excitement for Disneyland. I know Angie and Steve were a little concerned, but everything turned out great.

My flight gear. Kaden's first time on a plane.

Take off!!! I love Kaden's face!

One of the first things I noticed at Disneyland - a bunch of turkey legs.

Angie, Steve, and Austin on the caterpillar whose name I can't remember.

I loved the Pixar Parade! I want to be in it. So does some Asian girl who was standing by us. She is in every picture I took. I am glad she was having such a wonderful time.

Disneyland was decked out for the holidays. Small World looked incredible!

I loved the inside of Small World too.

See that man sitting on my left . . . I grabbed his arm at the first drop. I laughed the entire time.

Eating at the Blue Bayou

Kaden lounging in Mickey's chair.

Can you believe Mickey has a Cow Bells drawer? So exciting!

We all learned how to draw Mickey and Minnie.

The youngest Santa I have ever seen.

Kaden and Austin ready for the swings to begin.

Entertainment while waiting for World of Color.

Well worth the wait!!! It was amazing!

Kaden and Brooke singing in the Tiki Room.

Me and Kaden and Dumbo

Sleeping Beauty has a beautiful castle.

Me and Kaden in front of the castle. I used a wheelchair most of the time, so yes, I am sitting. Kaden helped take really good care of me.

Build-a-Bear for Boys. Only it's Ridemakerz and you build cars.

Kaden and Chase finally went on Screamin.

Angie, Brooke, Chase, and Kaden

Waiting for the taxi so we could be homeward bound.

Showing off our souvenirs. Kaden and I made some wonderful memories at Disneyland. We both had a blast! Thanks Angie, Steve, Chase, Brooke, and Chase. You made our trip so enjoyable!!!!!

Thanksgiving

Surprise mom and dad! Kim is home for Thanksgiving. YEAH!!! And boy were they surprised.

We celebrated Thanksgiving at Grandpa Perkes and Grandma Kathy's house.

We ate lots of great food. Did a lot of talking. Played some games. Sang Karaoke.

Here is the family, minus our Joanie. What a wonderful bunch.

2010 in Review (December)

2011-01-26T22:21:00.024-07:00

What a wonderful month. Full of great memories!

Pasta and Craft Night

I love my nieces and nephews and I love how Kaden loves to interact with them. So, I decided we would have a Christmas craft and pasta dinner night with Aunt Mel.

So excited!

Eli's wonderful patterning and symmetry on his wreath. It looks great!

Lindsey always has to get in on the action. Ethan was such a good cousin to help her. Kaden helped her too. I loved how they were all working together and helping each other.

Taylie's beautiful wreath.

We did do some other foam crafts, but I couldn't take pictures and help out all the kiddos. They each made an elf with his/her picture for the face. They also made gingerbread girls and boys.

Each of the kids made a card for Aunt Kim and Aunt Joanie. Ethan did such a nice job and put some very thoughtful words in his card.

Tate loved covering the card with stickers, upon stickers, upon stickers, upon stickers. I don't know if we ended out writing anything, but he had so much fun.

Kaden made a nice card. I love what he wrote. I don't know if you can read the words, but if so, you will see that I have a witty boy on my hands.

After we finished the cards for Kim and Joanie and cleaned up the mess, we had our pasta dinner. The Christmas and snowman shaped noodles were not as exciting to the kids as they were to me, but I am amused by simple things. Garlic bread is always tasty! I was so happy when my mom came home around this time. It was wonderful having here there to help.

Ethan and Taylie

Tate and Kaden

Lindsey and Eli

After pasta was candy necklace making time . . .

Then dipping pretzels in chocolate time . . .

Tate had so much fun with this activity! It took me a bit to realize he was dipping the pretzels in the chocolate and then gobbling them up. Just like dipping chips in salsa. Whatever works bud!

Eli (above) was very meticulous. He really took his time. On the other hand, Ethan and Kaden mixed the colors together and made a fun and yummy mess.

Lindsey couldn't be left out, so I gave her a couple of pretzels. My favorite thing about this picture is Ethan and Eli behind me, eating the chocolate

Lindsey didn't enjoy her chocolate covered cookie as much as the rest of us did. She did make the biggest mess though.

Time to end the night. I was wiped out!

Grandma Lamb's Christmas Party

The one and only Grandma Lamb

Eli's lunch: slice of ham, pickle, cookie, brownie(?)

Ethan's lunch: slice of ham, 4 mini eclairs

Cracks me up!

Cousin April with her husband Eddie (I remember painting

his fingernails during math class in high school).

The kids played hide-n-seek. Ethan found a great hiding place while

Tate was counting to who knows what number.

Me and Cousin Cody

Eli was beyond excited when he won a dollar playing BINGO. He loves to go to the dollar store.

Me and Cousin Jerry (less than cooperative)

What a great family! We play together and clean up together.

The Perkes' Christmas Party

I missed this family party last year, but was lucky enough to talk to most of my family through Skype. No way was I going to miss it this year! I wish I had taken more pictures; especially of the decorations and my extended family. Aunt Eva's family planned a great time for all - thank you!

Miss Lindsey

Kaden is loved by his cousins. They frequently crowd around Kaden and watch him use his iTouch. Great learning times!!!

I can't help but laugh about this picture. My uncle Kevin has become one of Hailey's favorite people (Hailey is the my cousin Julie's daughter). So, I ended out with a blurry shot. No worries, I love the interactions these two have.

Some of Aunt Pam's beautiful family.

Some of my younger cousins, and Kaden. Kason looks a bit . . . off.

At home with the munchkins after the party. All in their new jammies watching Ethan (this time) messing around on the iTouch. Fun bonding time!!!

Christmas Eve and Day

I have never seen so many presents under our tree.

The kid's dining table.

The only picture I got of the grown-up table. Thanks Greg and Charise!

My favorite guest of the evening, Grandma Hill. I love this woman so much!

One of my gifts from Kaden. He is helping me get healthy.

My mom got this lovely beauty doll for the grandboys. Greg thought it would be funny to put it on my mom's side of the bed. He disguised it well!

See - can't even tell the doll thing is there. I was the only up when my mom made her find. She started and laughing and crossing her legs. Good job Greg. You got her good!

Kaden always goes to his stocking first on Christmas morning. I love the stocking that Santa found. It has 4 short compartments instead of one long compartment.

Kaden and I on Christmas morning. I think we all went back to bed after taking this pictures.

New Year's Eve

Our evening started out with our usual pizza dinner. Angie and her family joined us for our feast and then headed back to her in-law's house. After pizza, we enjoyed playing Kinnect. For those of you not family with Kinnect, you are missing out. Our game of choice was mostly Dance Central.

Kaden doing some move.

"Poker Face" with sidekick Lindsey

After enjoying Kinnect for awhile, we played Farkle and Spicy Farkel.

Me and Cami

We eventually made our way downstairs to watch the ball drop on TV. Tate came and sat in my lap. Such a treat! I don't know what Lindsey is doing, but I'm sure it involved talking in her language.

I ended my night with my favorite boy in the world!!! We are both looking forward to a new year full of change, opportunities, and lots of new memories.

Much Love,

Mel

2010 is over?

2011-01-26T00:38:00.004-07:00

Wow how time flies! I am doing well!!! My blood work (labs) have been looking good and I don't throw up every day. Fatigue will most likely be my companion for a bit - could be worse.

I have every intention of getting a close to 2010 and beginning to 2011 posted. Just not right now. :)

Much love,
Mel

. . . continured . . .

2010-11-13T08:55:00.008-07:00

One year ago today, on Friday the 13th, I was diagnosed with leukemia. Very rough times lead up to the event. I had felt a little better when I was on the steroid prescribed by Dr. Bennion. However, I was still extremely fatigued. I don't know how to adequately describe how tired I was. I couldn't do anything! I took a bath each day (I was too tired to shower). When I was done bathing I would wrap my hair in a towel, wrap my body in a towel, and head straight for bed. It took 2 hours to recover from my bath. I couldn't clean, do laundry, or prepare food. My mom, dad, siblings, visiting teachers, friends, and neighbors helped me so much. My mom did a lot of cleaning and came up each night to make sure Kaden and I had dinner. She and my dad helped with getting Kaden to bed each night and to school each morning. I did a lot of sleeping.

One night I was very concerned, my forearms went numb and some other things were going on (I don't remember what). I called the on-call ENT, Gordon Wood, and talked to him about what my thyroid issue would and would not cause. I hung up knowing that something other than my thyroid was causing my problems. Back to Dr. Clark I went. Dr. Clark had instacare come and draw my labs. The results showed my hematocrit (HCT) was 20, my platelets were around 15, and my white cells were normal. Finally, the reason for my extreme tiredness! I was running on a 1/2 tank of blood. By this point, Kaden had pointed out to me that I had bruises all over my legs. Platelets around 15 (normal is 150+) explained the problem. So, I knew what was causing my problems, but didn't know what the problem was. Each day, for several days, I went in for blood work to see if my counts changed. Some days my HCT had gone up a little and some days my platelets had gone up, but they were always extremely low. My white blood count was always normal. I recall talking to Dr. Clark about my concerns that I had leukemia or lymphoma on several occasions. He listened to my concerns and I could see him thinking, but my white count was always fine. It's the white count that sets the alarm for leukemia.

I think my concerns got Dr. Clark thinking, so he had a hematologist look at my blood slides. The hematologist said he thought my blood was being "attacked" by a virus and that he didn't think it was leukemia. At this time, H1N1 was a big concern and also a virus that doctors were still learning about. Each day, for 2 weeks I either went in to Dr. Clark's office or called him on the phone. Actually, his nurses usually called me each morning. One night when I was having some problems I called the number Dr. Clark gave me so I could get a hold of him after hours. It was the hospital number you call for on-call doctors. The receptionist was not too nice and was adamant that she needed to call the on-call doctor and that Dr. Clark would not answer. I told her to try Dr. Clark, that I knew he would answer a call from me, and if he didn't she could call the on-call doctor. After much persuasion she finally paged Dr. Clark, of course, he answered. He made sure he was always available for me.

Days came and went and still no improvement. My labs stayed the same and I started feeling worse. Dr. Clark talked to me a lot about having a blood transfusion, but I wanted to wait. My grandma had one many years back and contracted Hepatitis C. That fact made me hesitant. One day I had a horrible headache. I couldn't stand to open my eyes or hear sounds. I imagine it's what a migraine would be like. I remember my dad was home from work or had been calling me from work to check on me. He knew how horrible I was feeling and that I needed help getting some lunch and getting into the doctor. He got in touch with Cami and she brought me some lunch. She also took me into the doctor. He thought I had a migraine and prescribed me some pain medicine - that I never did fill. Labs were drawn and my HCT and platelets were still low, white cells were normal. I remember Cami asking a lot of questions, but I don't remember what. We talked about a blood transfusion again, I declined. I finished my steroid and continued taking my synthroid.

One night I went and played volleyball. It was region-playoff time. When it was my turn to serve, I would have to take a break between each serve. I would sit on the floor during any little break we had. My friend Marie wasn't sure I should be playing, but by golly I was determined to play. I did finish the games. The next night, Thursday, November 12, my visiting teacher brought dinner and movie for me and Kaden. It was a good dinner. My mom came up and helped get things straightened up. Kaden and I went to bed without watching a movie. I woke up around midnight feeling horrible. I went in to use the bathroom and could not sit on the toilet for long. I sat there and cried and moaned and ended up laying on the floor hollering for Kaden. He never heard me, and I was not being quiet. Somehow, I made it to my cell phone, went back into the bathroom and ended up on the floor again. I called my mom and she and my dad came up. I was not in good shape. My dad went and got Mike so they could give me a blessing. The only thing I remember was being blessed that the doctors would be able to find out what was wrong. I tried to sleep in my bed, but got too cold. I turned up the heat, to 76, and went and laid on the living room floor with my blanket over the heater. I was convulsing uncontrollably and asking my mom to turn up the heat. She called Dr. Clark and he thought my issue with not being able to stay on the toilet may be related to my blood pressure. He told my mom that the ER was an option and that we had to decide what to do. My mom told me that it was time to go get a transfusion. My mom, dad, and I headed to the hospital. Kaden was still home in bed with Mike or Cami aware that we were gone (I think).

We made it to the hospital and my dad pushed me in on a wheelchair. I could not stand to walk or stand or sit up. I was not a pleasant patient. I snipped at the nurse when we were in the waiting. Something like "I can't sit here anymore. What is taking so long. Just get me into the dang bed." I actually probably swore at her. I don't remember for sure. Once I was settled, my dad went home to be with Kaden. My nurse and I were not good friends, until she found out what my blood tests were showing and she had to help me with a portable toilet because I kept exploding blood (that's the nicest way I can put it). The doctor came in and talked to me several times. The last time was to tell me and my mom that per Dr. Ben-Jacobs (the oncologist in Logan) orders, I needed to be transferred to LDS Hospital. I remember my mom asking what they thought the problem was, and the doctor saying leukemia. I remember the look on his face. I already knew that was the issue. The options were for my parents to drive me down, to take an ambulance down, or to be life flighted. Because of my exploding blood issues, we were advised to go by ambulance or air. The doctor didn't want my parents to get in a situation where I was getting worse and they didn't know what to do. So, my mom and I loaded on the ambulance. Actually, they don't usually let others travel with the patient, but they let my mom. She rode up front and I rode in the back with an EMT name Mike I think.

The ride down was not wonderful. The ambulance was not very clean. I was actually surprised and disgusted by how dirty it was. At one point I told the EMT that I thought we were going to get asphyxiated by exhaust. I also really wanted to ask them to stop at Chevron so I could empty my bladder, but I knew they wouldn't and so settled for a bedpan. While we were on the ambulance, my dad had checked Kaden out of school, gathered some things for my mom, and headed down. They were not too far behind the ambulance. Once my mom and I got to the hospital, everything was a rush. The EMTs had to take me to the bone marrow clinic on the 8th floor. I couldn't believe how large hospital was. It felt huge! They were ready for me on East 8. Carrie was the contact person and she was right there showing the EMTs where to take me. They wished me well, left, and Carrie took over. My mom was told that I would spend most of the day getting tests done, and I did. I had my tri-fusion line put in at angio. I had a colonoscopy to find out why I was exploding blood. I had a bone-marrow biopsy. I had an MRI. I had a cat-scan. I was tested for CNS disease (leukemia in my spinal fluid). I had lots of blood work done. It was a big blur of a day. I knew I had leukemia, probably burkitt's, and that it was very aggressive. My blood was 75% leukemia cells. They started me on chemo right away.

It was Friday, November 13th. What a fitting date! It was also my sister Angie's birthday. My niece, Brooke, told Angie something like, "I am sorry you had to find out Melanie is going to go bald on your birthday." (Ignore the misplaced modifier on that one, it's a quote.)

. . . to be continued . . .

Much love,
Mel

Life is Good

2010-11-02T21:51:00.011-06:00

I had my labs drawn on October 25. Everything went up! With the exception of my platelets, everything was in the low-normal range. My platelets were 120; they are slowly making their way to the norm of 150. It will be interesting to see what my labs show on Nov. 10. There seems to be a pattern of my numbers being higher when I get my labs done at Logan Regional as opposed to LDS.

Overall, I am feeling well. I do tire easily; however, I push myself through it so I don't stay in bed too much. My energy has improved. I have issues with nausea frequently, but not as much as I used to. Every month or two I have an episode of being really sick to my stomach for @ 3 days. My latest episode was last week. I am always thrilled when it ends! My latest joy has been working on getting back into a regular exercise routine. I know my doctors were excited that I gained some weight, but I was not! I know a lack of consistent exercise is my biggest problem.

I have had a very difficult time getting back into a good exercise routine for a couple of reasons. The biggest reason is that my dear friend and running/walking/workout buddy Anna moved. She moved to Colorado while I was in the hospital and I have missed her terribly! Actually, when my mom and I drove around the corner at Maverik on our way home for good, my first thought was "Anna is gone!" I cried a little bit then and have a few times since. Anyway, exercising is much easier when you have a buddy. How lucky I am to have my friend Carmen. She has been a good friend of mine for years and has been helping me get back into gear. I am so grateful for her encouragement, motivation, support, understanding, and everything else. I just love her guts!

Volleyball once or twice a week has also been helpful and so much fun! My first couple of weeks were rough: I couldn't serve the ball over the net overhand or underhand, my balance was really bad so I had a difficult time following the ball, my body didn't move when and where I wanted it to, my timing was poor, and I couldn't really jump to hit the ball when at the net. Oh how frustrated I was! Luckily, I have been able to work through the frustration and realize the progress being made. I finally served the ball over the net, overhand!, on the short court. Eventually, I served the ball over the net, underhand, on the long court. Now, or at least last time I played, I could serve the ball overhand on the long court. Such a victory! Everyone cheered and it made me feel great. My balance and timing have improved as well. I can even jump a little and hit at the net. I recently went to a doctor to have my knee looked at (I will explain in a moment) and he told me I was fine to play volleyball. Today I went to physical therapy for my knee. My therapist told me I shouldn't play volleyball. I am choosing to listen to my doctor.

Now for my lovely knee. I remember my knee hurting a little before my leukemia. It hasn't bothered me for the last year. Possibly because I have been bedridden! As I have worked around the house, gone running (very little), gone up and down stairs more, and tried lunges at aerobics I have noticed an intense pain in my knee. It doesn't throb after, it doesn't swell, and it doesn't hurt to touch - but, oh how it hurts when I have any forward-pressure motion (for lack of a better explanation). I got an appointment with Dr. King last week. My x-rays looked good - spacing was fine. My range of motion was okay and I didn't have pain or tenderness when he did his exam. Dr. King feels that the issue is related to muscle atrophy. Makes sense to me. The cure is to strengthen the muscles that support my knee. Physical therapy it is!

My first physical-therapy appointment was today. My physical therapist (PT) is a nice enough guy. Not very personable, but nice. His exam left me feeling like a wimp, a little discouraged, but hopeful and full of insight. He watched me walk and said I favor my right leg. He felt my knee caps as I moved my knee. He checked my flexibility and took some measurements. He checked my strength and I realized how much stronger my right leg is than my left. Weird! In my soccer days I played left wing and kicked with my left foot. My PT had me do some motions on a small stepper - holy ouch! The verdict: my quad muscles are not supporting my knee (atrophy), especially my inner quad muscle, resulting in my knee cap shifting (intense pain). Also, my left hip is very weak. *** Light Bulb On *** Ding, ding, ding! Can you say hematoma; i.e., the abnormal buildup of blood in an organ or other tissue of the body, caused by a break in a blood vessel. Hello!!! Remember those days? Oh how well I do! Massive bleed in my left hip, horrible swelling in my legs and feet, bruised from left hip to left toes, walker, pain, pain, pain, morphine, pain pump, pain, etc. I completely get my current problems: stairs are still a little tough, balance is still off, my right leg supports me better, my left leg gets fatigued and sore faster than my right. I am glad I get it now and for once will be sticking with my physical therapy. ***sigh***

Really, life is good. Not too long ago: I couldn't walk up or down the stairs alternating feet. I couldn't get out of the bathtub by myself and actually fell several times. I had to use the electric cart at the store. Wherever I went I had to wear a mask that covers most of my face. I couldn't wear my contacts. I slept a lot. I ate around 900 calories a day because I couldn't handle anymore. I hated chocolate and anything sweet (I wouldn't mind that one now). I couldn't live at home. I had to go to clinic in SLC at least once, often more, every week. Yup, life is definitely good.

Much love,
Mel

. . . continued . . .

2010-10-30T08:36:00.014-06:00

The weekend of the 16th was when it all began. As I said, I started with a stomach bug on Friday that did subside by Sunday. I was in charge of copying our kindergarten homework for the week, so headed to the school on Sunday. I remember being sooo tired. I headed to the work room with all my papers and got busy. Once I got going, I knew there was no way I could complete the task. Many times during the process I had to go sit/lay down on the hall floor. Theo was there doing some work too. I talk to her as she worked and tried to regain some energy to trek back up the hall full of ramps (okay, so there are 2 ramps but it felt like a lot at this moment). At this point I determined there was no way I could teach the next day. Now I had a sub to find and sub plans to get ready, not to mention the homework packets to make and my own students' homework folders to stuff. For those of you unfamiliar with the life of a teacher, most teachers would rather go to work sick than prep for a sub. Getting ready for a sub is a lot of work! It is so much easier to teach. Anyway, I don't remember who I got a hold of to sub, but I knew they were left with a mess. Not only was my room a disaster, but my plans were not too thorough and the homework didn't get done. I simply couldn't do it. Luckily, I worked with some amazing ladies who stepped up and helped to get things done. The next day (Oct. 19) is when the fevers, cough, etc. began. I determined that for the first time in my life I had the actual flu.

I am not one to run to the doctor's office when I am sick. I try to manage my illnesses on my own, until I know I can't. This time around I lasted about 5 days and decided I needed some help. My cough was so bad that I wasn't getting any sleep and I was gagging/throwing up from coughing so hard. Not to mention all the other things that were going on (see last post). My mom took me to Dr. Clark and he told me I most likely had H1N1. No testing was done and there was a good reason, I just don't remember it. He gave me a pamphlet about how to care for and prevent the spread of H1N1. He also gave me some cough medicine with codeine so I could get some rest. That night, Kaden and I slept at my parents house. I remember the cough medicine helping some. Most of all, I remember waking up in the middle of the night with my sheets, blankets, and pajamas drenched in a cold sweat. I had never had such an experience. I found it odd and disturbing. I determined that having the flu was the pits!

Once my cough and fevers settled down a little (@ 2 day after my doctor appointment), I realized that the whooshing sound in my ears was changing. Not only did I have a little bit of whooshing, I had the Jumanji drum pounding in my ears. You know, the sound the game makes on the movie "Jumanji." Keep in mind, I was still a kindergarten teacher to 46 students.

For me, and most teachers, teaching is a 24/7 job. When you are not at school teaching, your students are on your mind: so are thoughts about how to meet district demands, school demands, students' needs, lessons to prepare, etc. Plus, teachers either stay late to school, go really early to school, or take school home. Personally, I took my job teaching seriously. I love my students (once my student, always my student) and want what is best for them. I also love the families of my students. Some of my best friends and favorite people in the world are families of my students. Last year was no different.

My morning class was particularly challenging in the classroom-management department. As always, each student was unique and added to the dynamics of the class. I had free spirits, disagreeable spirits, bubbly spirits, stubborn spirits, talkative spirits, ready-to-please kids, kids who knew little to kids who knew everything, sensitive kids, they were all loving, some cared about learning more that others did - you know, a regular classroom of kids. The dynamics of this group were simply challenging to manage. I knew that in order for the class to be most successful, structure and routine were extremely essential. We worked really hard at getting our class to run smooth and I felt that we were all making great progress. October was the month to work on earning jack-o-lanterns (paper) each day and many of the kids were motivated by doing so. I do not remember if there were rewards possible or if the number of jack-o-lanterns was the reward. Either way, progress was slow but sure. I also had my afternoon class. They were pretty mild. Again, each student was unique and added to the dynamics of the class; however, aside from lots of gigglers and a few talkers, behavior was not a big concern. Academics and meeting some individual learning needs was my challenge. Everything was feeling good with both groups when I got sick.

My teacher friends will especially understand my anxieties and frustrations at this point last year. Each day I would hope to go into work. Tomorrow was always going to be the day. I did my best to keep a consistent sub (Mrs. Keith), but it's not always possible as good subs generally have prior commitments. I knew my morning class was especially struggling and it was always on my mind. I was so grateful for those who were constants (Marla, Julie, Kim, Kim) in the classroom, especially for my students who had behavior plans, academic plans, and who thrived on structure. Still, it was not the same as being there myself. I knew my classroom was a mess. Book orders had arrived and needed to be sorted (a huge undertaking). I was e-mailing lesson plans from home but had been gone so long (2 weeks) that I didn't know what was going on, what had been accomplished, and how the pacing of district programs were going. My afternoon class was even getting a bit lively. I knew things were a bit chaotic - I heard about it. All of this was not how I worked! Still, each day I planned to go in, but couldn't.

Finally, I was feeling a little better, just very tired. I decided to try going back to work (I think it was Thursday, Oct. 29th). I knew I would have to sleep between my two classes and would have to rely on extra help, but by golly I was going back! My students were so happy to see me and I was so happy to see them. I recall being a little teary and thinking about how much I love teaching and how I had missed my kids. I received some nice welcome-back notes and little treats. It was just nice. Unfortunately, once there 2 hours I knew I couldn't do it. Luckily I had several parents there for Thursday groups. Once my aides came in at 11:00 I had to leave. I went down to the teacher's lounge, sat on the couch, and cried a little. I felt so sick! My head was pounding, I felt dizzy, and I now I had grown a pounding heart in my ear. I knew I had to go home. I called Chris at the office and told her I needed a sub for the afternoon and she helped get everything arranged. I did make it back to the morning class to help get them out the door for home. I then worked on sub plans for the sub coming in the afternoon, and tried like mad to get out before my afternoon students arrived. I didn't want them to be disappointed when I left. Well, I didn't make it out before they arrived. Once again I was greeted by excited students with cards and treats to welcome me back, then I had to tell them I was going home. I felt really sad, but I couldn't stay.

At this point I figured I had a middle-ear infection or a sinus infection. I called my doctor's office yet again and got an appointment for the next day, Friday, Oct. 30. Dr. Clark wasn't in that day so I saw Dr. Mortensen. He determined I probably had a secondary or tertiary infection from the flu. I discussed my extreme fatigue with him. After feeling my thyroid, and having all the other doctors (3 total) check out my thyroid, he also determined that my thyroid was mildly prominent and that we should look into it further when my flu/infection was under control. I left the office with an antibiotic prescription and the knowledge that my thyroid may be causing some issues. I started my antibiotics that afternoon, took a nap, and went to school so Kaden could fill his obligation of volunteering at the Halloween Carnival from 5-7.

I figured it was a good opportunity to work on my room and get the calendar switched over to November. I worked a little, and then I laid down on the yellow-group table to rest, worked a little more, laid down, talked to Curt (principal) about a couple of things, laid down. At one point a student, his sister, and dad peeked in to say hello. Mac seemed surprised to see me laying on the table. It was nice to see him, and a few other people. I didn't accomplish too much. I did get the calendar switched over, I looked through homework, picked up a little, and that was about it. The next day was Halloween.

Halloween was a not too eventful Saturday. I don't remember what went on during the day. That night, Kaden went out with Eric, Eli, Tate, and Taylie. Cami was sick (I think). I watched TV and listened for the door. I did have a few kids come to trick-or-treat. I remember having to sit in the doorway once I opened the door. I didn't have the energy to stand and hold a bowl of candy. I was glad I wasn't visited often. Sunday came and went without much improvement. I was sure that by Monday I would feel a bit better - I didn't. So, I did the next best thing and called my ENT, Dr. Bennion, so I could get a specialist's opinion.

I drove myself to his office at the Specialty Hospital and made my way in. I was in tears by the time I got to his office. I was so exhausted! The nurse took me back to my room and I apologized for crying. I was possibly sobbing at this point and all I could say was I was so tired and that I was sure I grew a heart in my ear. Dr. Bennion checked my ears and there was no sign of infection, just fluid. I always have fluid in my ears so neither one of us were surprised. The audiologist did some test and my pressure was off a little. Dr. Bennion determined that Eustachian tube was having some issues due to some inflammation. Fair enough, it's a common problem for me. He prescribed me a steroid. He also sent me to get some blood work done to check my thyroid. I ran into to my friend and colleague, Jan, as I left Dr. Bennion's office. I could hear the concern in her voice and see the concern on her face - a bit unnerving. I started my steroid that afternoon. I remember picking up my steroid at the pharmacy. My old classmate Tasha Bowen (I forgot her married name) was the one who helped me. I had to put my head on the counter because I was so tired. The next afternoon I got my thyroid results and it was a little bit low. Well, the count they checked was high which meant that my thyroid was low. Now I needed to get synthroid. I was a little perplexed by the fact that I was so exhausted, but my thyroid was just barely off. I followed doctor's orders and took the steroid and synthroid. I did start feeling a little better; at least my Jumanji drum/heart quit pounding in my ear thanks to the steroid.

To be continued . . .

Much love,
Mel

*I apologize to those who know the rules for lie, lay, lying, laying, etc. I don't remember them and am too lazy to look them up. :)

What a difference a year makes!

2010-10-16T23:20:00.005-06:00

One year ago today, October 16, was such an exciting day. Kaden was going on his first trip to City of Rocks. He was beyond excited! I taught my morning kindergarten class and had a sub come for my afternoon class so I could help get Kaden to the church on time and with all of his gear. After getting him to the church, I had to go to the District office for a lovely math meeting. I felt very pleased that Kaden had everything together and was on his way to the rocks.

I was really looking forward to a weekend without a son at home. Our apartment and my classroom needed some major cleaning! Kaden did not enjoy helping out in my classroom, ever. So, what a perfect time to work hard without a whining 12-year-old. While at my lovely math meeting, I received a phone call from Kaden's scout leader telling me that Kaden threw up in the truck. He made it as far as Maverik - just down the road. His leader dropped him off at grandma and grandpa's house. So much for my weekend to get things in order.

After my meeting I collected Kaden and we got settled at home. About 1 hour later I began feeling sick. I hate stomach bugs! The only saving grace is that there is usually only one day of misery. The next day, Saturday, Kaden felt better and so did my dad (he was sick as well); however, I was still not feeling too great. This is when it all began . . .

I never did get better. My sickness just changed. I went from throwing up, to being really tired, fevers, chills, cough, earaches, sinus pain, pounding and swishing in my ears, horrible night sweats, very swollen lymph nodes in my neck and head - you know, H1N1. I was so sick!!!

And the story will continue later . . .

Much love,
Mel

Shower Time

2010-09-26T22:22:00.004-06:00

Today was a fabulous day! For the first time in 10 1/2 months I did not have to worry about protecting my central line/incision from water. My tri-fusion line was removed 10 days ago; i.e., central line. The incision site is completely healed over!!! Yippee!!! No more Glad Press n' Seal!!! No more changing the dressing daily!!! No more bandages!!! I can enjoy showers again!!! I love celebrating the simple things in life.

Much love,
Mel

Appendage Removed

2010-09-20T12:59:00.025-06:00

Howdy ya'll! I went to clinic last Thursday, September 16. My labs were great:

* hematocrit went up to 33.1 from 29.7

* platelets went up to 109 from 105

* white cells went up to 3.6 from 2.5

* neutrophils went up to 2.2 from 1.3

All my other numbers looked great too; e.g., electrolytes, proteins, etc.

The weeks before my clinic visit were spent contemplating having a donor lymphocyte infusion (DLI). At first, I felt very unsure about what to do. I was left with the responsibility to make a decision about a process that could or could not be of benefit. Knowing my doctors had no clear data to guide me in the process was a bit of a let down. I asked many questions and talked to family and friends about the situation. To top it off, I have been feeling really well; still tired and weak, but my energy and strength continue to improve. A DLI could make me very sick. I came to the conclusion that the situation was out of my hands. I needed to focus on living now and seeking guidance from the one who knows all, my Heavenly Father.

I did a lot of reflecting on my previous experiences in the hospital, the priesthood blessings I have had, and personal revelation I have received through prayer. I thought about the many people praying for my health and for me to know what to do. I thought about the many temples where my name has been submitted. I realize not all of you following this blog are LDS and, therefore, may not completely understand what I am referring to. All I can say is that my testimony in my faith has grown immensely. I have been blessed with many miracles and tender mercies that come from my Heavenly Father. I cannot deny the spiritual journey I have been on throughout my illness. Contemplating all these things led me to decide to not have a DLI. I feel peace in my decision.

Since I decided to not have a DLI, my counts have been staying up, and I haven't had to have any transfusions since May - I decided it was time to have what has been known as my "appendage" removed.

On November 13, 2009 I had a tri-fusion line put in. On September 16, 2010 (2 months shy of 1 year) I had a tri-fusion line removed. Yippee!!! The line removal process took place in Angio, so I got to see my old friends Dan, Chris, Kent, and Shawna again. This is the crew who did my lumbar punctures. Getting my line removed reminded me of being in labor. Like I had this foreign object in my body that my body wanted out. The pictures and video taught me what I look like when I am in pain; I have had more attractive moments.

And the prep begins.

All ready to go.

Chris explaining what he is going to do: Pull on the line and see if it will come out with some strong pulls. If it doesn't come out, get Dr. Johns to come give it a try. I was nervous.

Chris gave it some good tugs, but the darn thing wouldn't budge. Dr. Johns was called and got there very fast.

Dr. Johns gave the line some very good tugs (harder than Chris), but to no avail. Now it was time for a shot. Man how that shot hurt!

One shot was not good enough. I never numb well! It really hurt when Dr. Johns started cutting. He gave me another painful shot, and then . . .

. . . numbness. I had some fibrous tissues that attached to my line - my scars are always lovely - so Dr. Johns had to do some cutting. He told me some jokes and talked to me about stuff. I learned that boys between the ages of 17 and 25 are the biggest wimps. If you watch the video, you will here me call them pansies. Dr. Johns distraction did help me focus elsewhere until he pulled that line out.

And here it is. I couldn't believe how long it was. The catheter was up in a vein that crosses over my collar bone. You can see where the line was attached to my body. You know, that big red thing; it had to be cut out.

The tools of the trade.

And this is what was left. My cousin said it looked like I was shot by a gun. Dan pushed on the vein in my neck/collar bone for a good 5-10 minutes. I finally told him I was getting a bit "off" because he was pushing so hard.

My cousin Jen took video of part of the process. You can't see much - mostly me reacting to pain.

When the procedure was finished Chris went to put gauze and a big piece of tape over my incision. Not good! I am allergic to tape/adhesive. Chris asked me how I wanted him to keep the incision covered. I determined, with the help of Dan and Chris, that I had to have the gauze and tape. So, Dan found some tape that didn't have a terribly strong adhesive. I had a very itchy, uncomfortable night. I was very sore and sad to miss volleyball. The next day, Friday, my mom and I worked on getting the tape and gauze off. Not an easy process! Some blood from my incision was stuck to the gauze. No wonder I got sharp pains when I moved! This is what we saw when everything was finally removed.

I have tried using a band-aid, gauze and paper tape, and a different brand of band-aid. It doesn't matter what I use. My skin burns and itches. If you look toward the top of the picture, you can see the scar where the catheter from my tri-fusion line was at my neck/collar bone.

This is my shot from today, Monday. The incision is scabbed over. Yeah!!! Now I can see bruising too. I figured it would show up eventually.

My incision is feeling better each day. I can't wait to take a shower without having to worry about covering a big tri-fusion line with Glad Press 'n Seal: That's how you protect "things" when they can't get wet and you're allergic to adhesives.

Thank you Jen (Jenny ;0) for going with me! I'm glad you got to see the procedure. I am glad Kaden got to come with too. Once he found out I was probably going to get my line out, he was determined to go to clinic with me. Hopefully the visit brought him a little bit of closure with everything.

Decision Time

2010-09-09T23:59:00.009-06:00

My personal disclaimer: My spelling and typing are not the best these days. Please forgive my errors if you are one who reads this before Cami and Angie fix all the mistakes they find. :)

I had a clinic visit last Friday, September 3. The visit included lab tests, a pentamadine treatment, a visit with the new doctor on the team, and a visit with Dr. Peterson who has been on the team since I was diagnosed. It was a long day! Luckily, there is always somewhere to plant my head to rest and plenty of heated blankets to keep me warm. My lab results look good. My hematocrit is holding steady around 30 - so my tank isn't full yet. My platelets went up. My white cells and neutrophils went down - probably due to allergies or a minor cold I have.

This is the new doctor on the team, Birgitta Mitchell. She had been working with in-patient, so this was my first visit with her. I really like her. She was thorough and easy to talk to. I often make goofy remarks (right Kim!) and she could handle it. My check up by Dr. Mitchell went well. My check ups are generally focused on looking for signs of graft vs. host disease (GVHD). I haven't had to deal with GVHD on a large scale, maybe not even on a small scale. Who knows . . .

Dr. Mitchell did give me and my mom great news. The results regarding the translocated chromosomes 4 and 11 came back negative. The pathologists no longer see the translocation. This is wonderful, fabulous, exciting news!

My pentamadine treatment went as usual. It is a breathing treatment I get once each month. I first do a treatment of albuterol to open up my airways, then I do a treatment of pentamadine. I spend most of the time gagging and dry heaving because the pentamadine is disgusting. I would much rather do the pentamadine once a month than get a horrible fungal pneumonia. Just one of the few preventative medicines I take.

My visit with Dr. Finn Peterson was fine. I was glad to finally get a picture with him. He is a great doctor from Denmark. I love his accent; it reminds me a bit of my Grandma Hill. As I said the meeting with Dr. P was fine, but a let down at the same time. This was the time I was supposed to be told what the next step is going to be. Unfortunately, there are no clear-cut answers. Remember, the options are to do a DLI (donor lymphocyte infusion) or to do nothing. Dr. P had spent the week or so before my visit conversing with doctors from around the world and with the other doctors on the team at LDS. This is the info my mom and I were told during our visit with Dr. P:

There is no data supporting one option (see above) being better than the other. I do have donor cells in a freezer at U of U and, because of this, some doctors think I should have them infused since they are available. The doctors have discussed the fact that infusing the cells can result in severe GVHD, where the donor cells attach my body. GVHD can be manifested in many ways: skin rashes, scleroderma, problems with the liver, heart, eyes, teeth, mouth, lips, etc. It's overwhelming to think of all the possibilities. Oftentimes, GVHD is just as bad, if not worse, than leukemia itself. Infusing the cells can also result in my donor cell increasing resulting in a better engraftment. There is no guarantee of not relapsing if I go this route. Now, the flip side.

Do nothing regarding an infusion of cells and continue to monitor my progress. My counts have been going up. The main counts my doctors look at are my platelets and my neutrophils. My platelets have been on a steady climb up, and I have not had to have platelets infused since May (I think). My neutrophils are not high, but they are not low enough for concern. A lot of things can affect the neutrophil count (allergies!). There is no sign of leukemia in my blood, bone marrow, or spinal fluid. The translocation is gone. I am feeling well. Because of these things, some doctors feel that monitoring my progress is the way to go. They feel that my transplant may have already accomplished its task and that my body may be working on correcting it's errors on it's own. If an infusion is completed, the positive process my body is (?)doing(?) may be destroyed, leaving me worse off.

Dr. P explained that the doctors he has conversed with around the world and on the team are split. That you could literally split them in half with a knife: 1/2 supporting DLI, 1/2 supporting monitoring. The decision is left to me. I have had many thoughts going through my mind that I don't have the energy or brain power to type about at this time. The one thing I know for certain is that there is one Being who knows what I should do, my Heavenly Father.

Much love,
Mel

Results are In

2010-08-29T21:48:00.019-06:00

Actually, I have known my bone-marrow results since August 19. I am just a little slow with posting. More of that later.

I will be thrilled if this is what I see every day when Kaden gets home from school. His first day of 8th grade was great. Actually, he said it was awesome! The 2nd day was welcomed the same way. I am thrilled and hope it lasts! Beginning jitters are gone (for Kaden)!

I tried to get a shot with my hair, I do have some. Between the stairs, the backpack, me, and Kaden we just couldn't get it to work.

Back to the results. My coordinator, LaDee, called a passed along the percentages of my chimerism tests and educated me on a couple of things that were confusing me. Here is what I found out:

1. No leukemic cells are visible in my peripheral blood, my bone marrow, or my spinal fluid. Good!!! Still in remission, technically, and no CNS disease.

2. My T-cell chimerism showed 43% donor cells, down from June's 62%. This is the peripheral (blood flowing through my veins) blood sort focused on T-cells only. Of course, the higher the % of donor cells the better. T-cells play a large role in the immune system.

3. My bone-marrow chimerism showed 17% donor cells, down from June's 21%. The bone-marrow chimerism represents the total number of all cells in my bone marrow, not just T-cells (this is where I have been confused). The higher the % of donor cells the better.

4. My doctors would like to see 100% donor cells in my peripheral blood and my bone marrow.

5. I am awaiting results regarding the translocation of chromosomes 4 and 11. If the translocation is still present there will be greater concern regarding relapse leukemia. I should know the results after my clinic visit on Friday.

To sum up the situation, my doctors are not certain what will be the best course of action. Dr. Peterson, the doctor with the most knowledge pertaining to my situation, has been and will be discussing my case with doctors from around the country. He wants to get some feedback from clinics that see more patients. That way he has info based on a larger population. Here are the options I know of, and you will understand why my team of doctors are questioning what the best course of action is:

1. Do nothing. My engraftment (% of donor cells in my body) will probably continue to decrease or will "peter out" all together. This may be fine. I may not have a relapse, or I many have a relapse. I can live with a mixed chimerism (my cells and donor cells sharing house). Many patients live long wonderful lives, and some do not.

2. Do a donor lymphocyte infusion (DLI), increasing the number of donor cells in my body and hoping for a solid engraftment; causing little graft vs. host disease (GVHD) and relapse in the future.

3. Do a DLI, increasing the number of donor cells in my body, causing little GVHD and relapse in the future.

4. Do a DLI, increasing the number of donor cells in my body, causing severe GVHD and no relapse in the future.

5. Do a DLI, increasing the number of donor cells in my body, causing severe GVHD and relapsing in the future.

6. Then there is the issue of a preparatory regimen before doing anything.

Ideally, I would have a DLI, the cells would maintain their engraftment, I would get a little GVHD, and I would not relapse in the future. As you can see from the scenarios presented above, there is no way to guarantee that outcome. I trust my doctors. I know they keep up on current research, they communicate with doctors across the country, and the communicate with their team at LDS hospital. Please pray for them. I pray their minds will be open to learning and understanding protocols developed by others. I pray that my doctors will listen to the Spirit and will allow themselves to be open to his whisperings. I pray my doctors will be directed in determining the best course of action for me, personally. Friday, September 3, is the day I go to clinic to meet with Dr. Peterson and to find out what he feels will be the best next step. I am anxiously waiting to hear what he has determined.

Back to a fun note. My family (minus Kim, Joanie, Taylie, and Lindsay) went to the Bee's baseball game on August 21. My nephew Chase's baseball team was recognized at the game. Very exciting!

Here is our crew of kids: Chase, Austin, Brooke, Kaden, Ethan, Eli, and Tate in the front. The Bee's lost, but we still had fun. The fireworks after the game were nice too.

Much Love,

Mel

#9 Bone Marrow Biopsy Complete

2010-08-13T10:07:00.005-06:00

I had my ninth biopsy yesterday. Everything went fine. A little happy medicine and pain medicine make the process close to painless. The biopsy is taken from my hip - around the area where the top of the back pocket on a pair of jeans sits. My biopsy has been taken from the same darn spot the last 5 times. I guess it is a good spot. I hope that my chiropractor and massage therapists will be able to work out all the scar tissue that is sure to be in the area.

My labs look good. My platelet count stayed the same, but everything else went up. Yeah! My white cells and neutrophils are both in the low-normal range. My red blood is 6.5 points from low normal. My magnesium is now in the high-normal range. No more Maggie!!! For those of you not familiar with Maggie, it is the name given to the pack I've had to carry around for 1-4 hours each day since leaving the hospital. The pack housed the pump that was hooked to my magnesium/saline bag, that was hooked to my red tri-fusion line, that went into my body to keep my body hydrated and my magnesium count around normal. It will be nice to give Maggie a rest. :)

While at the clinic I did get bad news from my friend Liz. Her transplant didn't work - she has 0 donor cells. Plus, her leukemia is back. She was diagnosed just before I was. I had my transplant in Feb and she didn't have her transplant until June. The hold up was caused by Medicaid. They didn't want to pay for the procedure. Question 1: Would her transplant have been more successful if she had it sooner? Liz could have another transplant but, again, Medicaid doesn't want to pay for it. Liz's words were "what, they just give you a death sentence?" Question 2: Isn't the life of a young woman worth the fight to save? Question 3: Why does insurance have so much say in a person's opportunity to live? Question 4: Considering her insurance is Medicaid, why on earth would I want a government-run healthcare program? I really have no desire to have a healthcare debate on this blog, so please don't start. These are just questions that I have been thinking about. I am simply bothered by the situation.

All that said, please keep Liz and her son in your prayers. They are both having a very difficult time; especially her son. Liz and I have never discussed her beliefs in a higher power, but I know that the power of prayer is real. I know that she and her son can find peace through our Savior. I also know that the prayers of many truly bring blessings of peace and comfort.

Coming up: Just waiting to see what my bone marrow shows. It takes 10-14 days to get results back.

Much love,
Mel

The End of the Lumbar Puncture

2010-07-30T08:56:00.007-06:00

Warning: Pictures of medical stuff, including needles and catheters are included. Angie and Stephen, good luck!

I had what is supposed to be my last lumber puncture on July 28. Since it was my last LP, we decided we needed to get some pictures of the process. The doctor would not let my mom come in, but agreed that one of the techs, Kent, could be our photographer. I always had my face in a pillow and happy drugs running through my veins (for most LPs); so, the pics allow me to see the process from a different angle. An angle that makes me understand some things a bit better.

Before I got an LP, I would have to get at least one liter of fluid infused. My first few lumbar punctures were horrible experiences because of the lack of fluid in my spine, amongst other "issues." The liter of fluid resulted in my spinal fluid being juicy enough that a sample could be drawn.

This is one of the techs, Chris. I always saw him with his gear on: hat, mask, gloves, etc. I was really surprised to see him in the hall one day. He has long hair! I never knew.

This spot in the hall was "my spot" each time I had a LP. One of the hospital transporters would get me from where I was before LP and bring me to this spot. I was not amused the first time this happened. It was my first day at the hospital, I was having numerous tests and such done. Some dude I didn't know brought me to this spot and left me. That's protocol, but I didn't know it then and, yes, I cried. I did learn that it was my spot until angio was ready for me. Once the pharmacist, Brenda (pictured here) or Bruce, passed me with the bag of methotrexate, I knew I would go in soon.

Here is the doc and nurse, Shawnna, doing some prep. The doc (or Chris) would cover my back with very cold iodine and would cover the areas surrounding the puncture point with something. I think tape is involved, but we will have to see further down. I don't know this doctor's name. Overall, I had 3 or 4 doctors who did my LPs. One girl and 3 boys. Can't tell you one name. :) Shawnna was giving me some happy drugs.

Still prepping. You can see the x-ray of my back on the computer screen (the previous pic shows it too). The x-ray helped the doctor become familiar with the anatomy of my back - extra lower vertebrae and all.

Doctor man (again, I don't know his name) is putting the needle in my back.

If you enlarge the picture, you can see the needle in my back. Look, there is that stuff they put around the puncture point.

No wonder I feel pain! That lovey tube is simply dangling out of my back. I didn't know this happened with each LP.

Doctor man is taking spinal fluid out of my back. This served 2 purposes: 1) It's like a biopsy of my spinal fluid. The fluid is checked for leukemic cells. 2) Fluid had to be removed from my spine so that fluid (chemo) could be added to my spine.

My spinal fluid ready to go to the lab.

Shawnna is holding the bag of methotrexate that was to go in my back. We call it Mt. Dew because it looks just like Mt. Dew.

Doctor man in putting the Mt. Dew into my spine. It always felt like a lot of pressure.

Still putting in the Mt. Dew. The doc would inject it slowly to help maintain balance in my spine.

Finished!!! I look so happy. I suppose the meds worked really well. I have absolutely no recollection of Kent taking this picture.

My goodness! I always love the pics my mom takes - I look, interesting. This fine man is Dan. He was usually my nurse for LPs. He was doing other things this day, but he made sure to come in to recovery for a pic. He calmed my nerves many times and was a great med pusher.

I believe I had a total of 13 lumbar punctures. I will update that number if my mom tells me different. All I know is that a) lumbar punctures are really yucky, b) I don't like people to mess with my back, c) I love the nurses and techs who were always there, and d) I won't have to have one again.

After each outpatient LP, mom and I would head to Greg and Charise's house. I would sleep for a good 2-3 hours. When Charise got home from work she would make a wonderful meal and someone took a picture if a camera was around. We would eat and then laugh at Greg's antics. I am very appreciative of the number of times we have been welcomed into Greg and Charise's home. I am blessed with a wonderful family!

THINGS TO COME: Bone marrow biopsy next Thursday. Chimerism tests. Pentostatin. DLI.

Much love,

Mel

Leukemia Joys :)

2010-07-22T22:27:00.029-06:00

Leukemia is one of those illnesses that is so unpredictable. Leukemics have to take a day at a time and can't do a lot of predicting of the future. Prognosis, procedures, treatment plans, and everything else that comes with the territory can change at the drop of a hat; so, whenever anyone asks about any of those things I am left wanting for words. All I know is what the plan is for now, and every plan is subject to change.

I did have my lumbar puncture on July 13. Everything went fine and leukemia is still absent from my spinal fluid. My back has been pretty tender since then, but who knows why. Most of you know my back (SI joint, hips, sacrum) has been messed up for some time. Could be all of that resurfacing. I am glad Dr. Garvert (my chiropractor) is still around. I knew that he has been missing me! One visit down and many more to come.

I have had 2 clinic visits since the 13th - the last visit was yesterday, July 21. My counts are still just hanging out. Once I figure out how to edit the sidebar on this blog I will post the norms for each lab test we watch; for now, I will just put it in the post.

*My hematocrit (Hct) was 26.1, up from 26. My body is still low on blood: A normal Hct is 36.0-46.0.

*My platelets (PLTS) were 97, up from 91. A step in the right direction, but short of the normal PLTS of 150-400.

*My white-blood-cell (WBC) count was 2.7, up from 2.4. Another step in the right direction, but short of the normal WBC of 3.6-10.6. I am almost normal!

* My absolute neutrophil (Neut, Abs) count was 1.4, down from 1.8. My doctors always tell me to not worry about the count going down a bit. The normal count is 1.8-6.8.

I have a bunch of other labs done, but I don't really know what they are or what they mean. My mom relies on my sister-in-law Charise to explain the other counts. I don't remember what I've been told about them. :)

All in all, I look pretty good on paper (that's what my docs say). However, my engraftment of donor cells has been lost a bit (that's what my coordinator says). Hence the tacro taper (explained in last post) that my mom and I messed up. So, we're behind schedule by about 4 days. The hope is that going off my immunosuppressant will kick the donor cells into action. I will get to have another bone-marrow biopsy and peripheral chimerism test two weeks after I finish my tacro. Those labs take 10-14 days to come back, at which point my team of docs, plus a few others, will decide if I need a donor-lymphocyte infusion (DLI). If I need a DLI, I will have one dose of some drug, a day of rest, and then the infusion. So, there is everything I know for now. Remember, everything is subject to change.

I did make it to a movie with mom, Kim, and Kaden. We went to the big iMax theater in Salt Lake and saw Toy Story 3D. I took my big frog blanket to cover the seat and arm rests and went at a time when the theater was essentially empty. It worked out very well. It was also so nice to have Kim with us again. What a fabulous big sister!

I about died when I saw this picture. Wouldn't you be scared if you saw me coming toward you? It really just cracks me up. No wonder I got some strange looks from some kids (and probably adults too).

I told you about my grandpa's wedding a couple of weeks ago. I did get some pics that Cami took.

Here is the happy couple.

I am actually in this picture. Look at that bald looking, masked person in the back. Not Eric - he is bald. Look way back.

My dear Kaden. He is 13, what more do I need to say.

We had a great party with my dad's side of the family. We went to aunt Lenie and uncle Kohn's house. (Arlene, is that how you spell Lenie? I just don't remember.) We get together once or twice a year and have a fabulous time! My grandma Hill is so loving to all. She's my Norwegian grandma who has the biggest heart, the most wonderful smile, heartiest laugh, and best attitude. I absolutely adore her! Another extended family who I love, with only a few missing!

FYI Family: I stole this pic from uncle Ron's Facebook page. I know that he loves me so I am thinking it's okay.

One of the most exciting recent events was the return of Kaden's uncle Andrew from Afghanistan. Kaden has missed seeing him at his games and having him around as a camping buddy. We were fortunate enough to see him fly himself in to the Logan Airport. Kaden was very, very excited!

Kaden got ready for the day without any hassle from me. I love his hair and wish someone could convince him that he is so handsome without that darn hat of his. I like him with his at too, but just look at that curly hair! (sorry, I digress)

Andrew just landed and parked the plane. His family had a beautiful "welcome home" poster for him and lots of hugs and loves. It was nice to see him, his wife Elisha, and son Johnathan reunite.

Kaden can rest easy knowing that Andrew is on American soil. Hopefully Andrew won't have to go back on tour too soon. We are all so grateful for his service in the army! He is a wonderful example to Kaden and is completely loved by Kaden. I am so glad he is a part of Kaden's life! What a great example of love and support in a difficult situation!

Cami will post about the fabulous Hyde Park parade later. She has all the pics.

Much love - Melanie

Warning - It's a long one! Very, very long!

2010-07-10T09:35:00.023-06:00

Hello my wonderful family and friends. I decided I really need to do an update on my own. Everything is chronologically backwards. Enjoy!

I go to LDS hospital for a clinic visit at least once each week. A clinic visit is when I get my labs drawn; I talk with a PA and report any concerns or new problems, review my meds list, and get a quick check over; last, I talk to one of my doctors (I have 4 of them and was informed that a 5th just joined the team) about my current condition and any concerns brought up at tumor board.

The last two weeks have been filled with lots of sick time: nausea and everything that comes with it. I spent three consecutive days throwing up everything I tried to eat resulting in not being able to take my meds. The vomiting stopped and changed to dry heaves. I could at least keep my meds down. I've also had diarrhea (lovely, I know). Needless to say I have been very dehydrated and exhausted over the last 2 weeks. Dr. Peterson told me I would most likely need to be admitted so they could figure out what was going on (all labs were negative for obvious concerns). I went to my clinic visit yesterday (Fri. 9) fully expecting to be admitted, and am pleased to note that I was not. I have been running IV fluids and magnesium for the last couple of days. I believe doing so has helped my body heal a bit and have more energy. I'm still not 100%, but my guts are finally going in that direction. I think I am on an upward swing in this area.

Dr. Peterson informed me of my chimerism sorts on Tuesday (July 6). They were not the best. My bone marrow (results from biopsy) had 79% recipient cells (my cells) and 21% donor cells . The best scenario would be for my marrow to show 100% donor cells. My peripheral blood (the blood cruising around in my body) showed 64% donor cells and 36% recipient cells. Dr. Peterson said they would be discussing my case at tumor board on Wednesday; i.e., tumor board is when all the doctors and coordinators get together and discuss what needs to happen with each individual patient.

Yesterday (July 9) I talked with Dr. Asche to get a better understanding of what is going on and to find out what was decided at tumor board. Apparently, it is okay for the 2 chimerism test to show different totals; i.e., my bone marrow is mostly my cells and my peripheral is mostly donor cells. Dr. Asche said the main number they look at is the peripheral sort and that it is best for it to be 100% donor cells. The current concern is that I will have relapse leukemia because I have so many of my own cells cruising around inside. As of now I am cancer free! We just don't want it to come back so some treatments continue. It was decided at tumor board that I would do a quick tacro taper. Tacro is an immunosuppresent drug that helps keep graft-vs-host disease at bay. I will do a 2-week taper off of the drug. After the taper, they will start me on a new drug to prepare my body to receive more donor cells. I don't remember the name of the drug, but it is supposed to be MUCH milder than radiation and ATG (a.k.a. rabbit blood). I don't know how much of the new drug I will have to get. After I get the new drug (I don't know how much) they will transplant more donor cells through my central line. The focus is on getting the donor's T-lymphocytes into my body. None of this can take place until my counts go up. It appears that the virus or whatever I've had has caused my counts to drop. The only lab I remember is my hematocrit. It is now 24.5 with normal being @40. My platelets were okay. My neutrophils dropped. I don't remember my white cell count. If my counts don't recover, they will do another bone-marrow biopsy to determine what is going on. For now, I go in for a lumbar puncture with methotrexate next Tuesday (July 13). Labs will be drawn and hopefully some final decisions will be made.

I have been home from Salt Lake since @ April 30. I must say that it has been fabulous! Sure, I do go to SLC a lot and sometimes spend a few days with Greg and Charise, but for the most part I am home. I've added some pictures of some of our activities this summer.

I don't have any pictures of my grandpa and now grandma Kathy's wedding. They were married on July 8. What a beautiful day and ceremony. Grandpa had been sick so I said hi and blew kisses from a distance. He and Kathy both understood. It was just great to see my family whom I have not seen for so long. I love my extended family!

Oh my dear daddy. We had some good laughs together one Sunday while my mom was at church. The conversation went something like this:

Me: "Dad, there isn't any dishwasher soap and I don't think you should put that soap in the dishwasher."

Dad: "This is what I put in when you guys were gone. Mom told me to put the liquid soap in."

Me: "The liquid soap was probably liquid dishwasher soap. I really don't think you should put that soap in."

Dad: "I'm pretty sure it was this (as he holds up the Dawn regular dish soap)."

Me: "Okay, but I still don't think you should put that in the dishwasher. It might ruin it too."

Dad: Pours the soap into the holes and turns on the dishwasher.

Soon after I heard my dad in the kitchen. I don't remember what he said. I remember him chuckling a bit and calling for me. I walked in to find bubbles all over the outside of the dishwasher and on the floor (unfortunately I didn't have my camera at this time).

Me: "You should really start listening to me dad."

Dad: Continues laughing and begins clean up. "Don't tell your mother about this at church. You let me tell her on our way home."

Me: "I want to announce it in Relief Society." After some strong looks and words from my dad I promised him I would not say a word. He got to do the telling on the way home.

Each year my family has a 4th of July barbecue. We have it whenever we can get most of our family here. This year we had our family celebration on July 3.

Dad makes the best burgers! I bought some slider buns this year (small buns) and had a slider burger. It was delicious, but I have a hard time getting my mouth around the top and bottom bun to take a bite. It was simply nice to eat something!

Lindsey is who we call our "little white tornado." She has no fear and does not stop doing. She thought the fence was pretty cool.

Tate and Taylie are best buds. They do tend to get into trouble every now and then, but play very well together over all.

Kaden lounging around with his lovely iPod. I must admit that I want to throw it in the canal once in awhile.

Greg and Charise. Who knows what Greg is doing. He is a man of many abilities.

I love this picture of my dad, LeRoy. He is one of my solid rocks. I love him much.

I wasn't concerned about the container with the orange smoke bomb until Kaden sealed the lid on tight. We all ran to the other side of the lawn. Nothing happened so Kaden finally went and kicked it down the little hill. All was well!

Kaden has discovered fireworks and got himself banned from youTube this year (mother's ban). He was the one in charge of lighting the fireworks. His cousins enjoyed his firework shows for several days.

Grandpa getting after Tate and Taylie. I don't remember what they did, but my brother-in-law, Eric, and I got a pretty good laugh.

This year's valley fireworks were held on Friday, July 2. The date for fireworks seems to be determined by the date of the Cruise-In. We had our festivities at the vet clinic in North Logan. My sister-in-law, Stephanie, worked there for many years and her sister KrissAnn works there now. We have a barbecue and too many treats. Great times!!! I actually ate a hot dog this year. Again, I was just glad to eat food. The best thing was that it was a Nathan's all-beef dog. So good!

Greg's Niel Diamond pose during Coming to America. When he was little he would get on the kitchen counter, use a multi-color pen for his microphone, and sing Coming to America. We loved his pose.

Me and Charise

A small part of our clan.

Taylie and Mike loading up at the trunk spread.

Stephanie and Lindsey

Greg and Lindsey

Kaden and Lindsey - Greg used to take Kaden around on his shoulders when Kaden was little. Kaden would hold onto Greg's ears and have a great time.

I have always considered Kaden to be a natural athlete. He has lots to learn about playing various sports, but he is quick to learn and works hard. One of the best parts of the summer has been going to Kaden's baseball games. He has been blessed with a great coach and great teammates since he began minor's league. He has had either Grandpa Balls, Uncle Mike, or John Lee for his coach. John Lee has coached him the most and Kaden really respects him and looks up to him. This year was the first year for Pony League. The field-size changed and so did some rules. There was a bit to learn. Kaden played his best at each game; his brain fell out only 2 times that I can recall - there's just something about 3rd base. Kaden usually plays 1st or pitch when in the field. He is working on speeding up his pitching delivery, and I look forward to seeing him pitch next year. He is an awesome 1st baseman who doesn't let too many balls pass him by.

This picture cracks me up! It so looks like he is grabbing the 1st baseman's behind. The first baseman has his batting gloves in his back pocket. Kaden's hands w/batting gloves are in front of him - he's ready to run. No butt pinching going on!

Ready to run.

Checking the runner on first before he makes his pitch.

Delivery! He had some good pitches and some bad. That's how it goes.

Taking the pitcher's mound.

Game complete.

Kaden with some of his teammates: Sterling, Trevor, Raleigh, Austin, Kaden, Bryson, Nathan, and Daniel trying to get out of the shot (you bum).

After final game. Didn't take first in their league, but did take second.

Back row: Coach Hillyard. Derek Drake, Wyatt Christensen, Daniel Lee, Bryson Hillyard, Nathan Lusk, Kade Sorensen, Daniel Osbourne, Coach Lee, Coach Holden

Front row: Kaden Balls, Brock ?, Raleigh Robinson, Austin Jeppson, Trevor Holden, Sterling ?

Missing: Robert Erkenbrach (I have no clue how to spell that last name)

Thanks to my cousin's father-in-law, we had the opportunity to go to the ReAL vs. San Jose Earthquakes game on June 28. We got to enjoy a suite with some great family and new friends.

Mike and Stephanie came with me and Kaden. It was their first game.

We could see right down into the team tunnel. Awesome!

We got to see the MLS cup won by ReAL last season. Awesome!

Kaden, Dave Checketts, and me.

Dave Checketts is one of the owner's of ReAL. We got to enjoy the game from his personal suite. --Now, please do not start sending requests to Dave seeking tickets. He is a very kind person, but his suite is filled with friends and family.-- This fun event was arranged for me and Kaden by a common acquantance. One of Dave's old friends. Thank you, thank you, thank you! We loved every minute of our time and it was wonderful to spend some time with Kaden without feeling like I had to worry about protecting myself from everyone arround me.

Our next fun time is next weekend. We have our great Hyde Park celebration on the 16th and 17th. Most of the family will be on a thank you float throwing candy to good ole' Hyde Parkers. Who new the thought of throwing candy could be so exciting!

Feeling Yucky

2010-06-29T23:57:00.005-06:00

Mel has been really sick today. She can't keep anything down. I feel so bad. Her and mom went down to Salt Lake today since she has a lumbar puncture bright and early tomorrow morning. They took her to the clinic at the LDS Hospital when they got to Salt Lake and they have her hooked up to fluids and anti-nausea medicine. We'll have to wait and see if they'll be able to do her LP tomorrow. Hopefully the fluids and meds will help her feel better.

Biopsy Day

2010-06-24T22:49:00.007-06:00

Melanie had her bone marrow biopsy at 11:45 am today. She wasn't put completely under like she wanted, but they sedated her and gave her plenty of pain medication. She had a male doctor perform the procedure at her request. He was excellent! He was able to get the fluid in one try and the piece of bone in one try as well. The procedure took 25 minutes. When I talked to Mel, she was sore but able to walk (sigh of relief). Mel is really glad to have this behind her after all of the nervousness leading up to it.

Mel's blood levels look great. Everything is up with the exception of her platelets, although they didn't go down by much. Her doctor said that everything looks good on paper and the Chimerism test will tell us if things look good on the inside too.

We got the results of Mel's spinal fluid test from last week and it showed that her spinal fluid if free of cancer!!! That is some great news!

We will get the results of her Chimerism test in a couple of weeks. This test will tell us what percentage of cells in her body are donor cells. We are hoping for a high number.

Melanie and Kaden will be going to a ReAL Salt Lake soccer game tomorrow. They are so excited!! I'll be sure to post pictures.

Thanks for the continued prayers on Mel's behalf. Your support is so much appreciated.

One Lumbar Puncture Down!

2010-06-16T11:34:00.002-06:00

Melanie had her first of four lumbar punctures yesterday. It went well. She was sedated so she didn't have any pain. Afterward she had to remain flat on her back to prevent a spinal headache. She was really tired after the procedure and for the remainder of the day.

This morning she was nauseated, but thankfully it subsided. She went back to the hospital to have her Methotrexate (chemo that was injected into her spine) level checked. The doctors said that the chemo that is injected into the spine doesn't cross the blood/brain barrier. Mel's blood work suggests otherwise. Her levels were high enough that she has to take some medication. So the chemo does end out in the blood stream.

Mel also had a treatment that prevents pneumonia. She has had it before and it is nasty stuff! Last time she was alone in the room, but this time someone stayed with her. The staff that stayed with her had to wear a mask so they wouldn't breathe in the toxic stuff.

As far as blood levels go, all of Mel's levels were down. Dr. Peterson said that they aren't concerned until her levels start to go down every week. Having blood levels that go up and down is normal for everyone. Mel will need to continue to be careful about germs, dust, molds and sick people. We are all working hard to keep her healthy.

Mel came back home today in time for Kaden's baseball game. She will have her Methotrexate level checked tomorrow at Logan Regional.

Next Thursday is Biopsy day. Mel is really nervous about it considering her last experience. Please keep her in your prayers.

Stay strong Melly! We love you!

Hi Again!

2010-06-11T23:20:00.003-06:00

Things are looking good for Mel. She had some blood work done at Logan Regional Hospital and her numbers were all up! She is optimistic and happy. She is enjoying spending time with family. Her nephews and nieces love to play with her "new" toys that have been in her classroom for years.

On a more somber note, one of Melanie's neighbors in the LDS hospital has passed away. He was in pretty bad shape. It serves as a reminder of how unpredictable leukemia can be. It was some tough news for Mel and our mom to receive.

Melanie will be heading down to Salt Lake on Monday night. She has a lumbar puncture scheduled for Tuesday morning. I asked Mel if these make her sick and she doesn't honestly know because she has always been in the hospital on so many other medications. I guess we'll know soon enough. Keep her in your prayers. She will stay in Salt Lake over night to be close to the hospital should anything go wrong. I know she is hoping to be back for Kaden's game on Wed.

We love you Mel!

No Lumbar Puncture Today

2010-06-03T22:15:00.002-06:00

Melanie was scheduled to have her first of four lumbar punctures today. She and my mom headed down to Greg's on Wednesday evening, ready to stay Wednesday and Thursday night there. They woke up and drove to the hospital for her early clinic today. Her blood draw was great! All of her counts were up from last week. YEAH! Her platelets were the same, but we will take that over dropping. The other thing that was high was the Cumadin in her blood. This is the medicine to help thin her blood. Because it was too high, they could not do the lumbar puncture today. Melanie will stop taking the Cumadin and they will check her levels in Logan next week. Depending on were they are, they will schedule her next clinic and an LP.

Since there was no need to stay over night tonight, they just went back up to Cache Valley. Of course, they did a little shopping (Costco) before leaving the Salt Lake Valley.

I feel a bit out of the loop these days. Without Melanie being down here, I don't get to see her much at all. I am so glad she is home and doing well though! Love you, Melanie. Hopefully I will get to see you soon!

Giving Up Control

2010-05-29T21:41:00.003-06:00

Melanie had a clinic visit yesterday which ended out being an all day affair much to her chagrin. Her hematocrit was really low and so she needed a transfusion. They waited for 3 hours for the blood. It was really frustrating for her and our mom to just sit there and wait. Kaden had a baseball game that Mel wanted to be there for. She said, "I don't miss baseball". She made it to a few minutes of the game, but missed seeing Kaden up to bat.

I remember sitting in Mel's pre- transplant meeting and Dr. Ash telling her that the hardest part about post transplant life is giving up control. It's hard no doubt about it. Mel has so much that she wants to do each day, but her body just won't let her. She tires so easily, yet she keeps going and works hard to live life as normally as possible. The clinic visits are an inconvenience most of the time, but so necessary as Mel continues her battle.

Next week Mel will receive the first of four spinal taps which will include chemo being injected into her spine. We were really concerned about the chemo killing her hard-at-work donor cells. The Dr. explained that it won't affect them, they are just hoping to kill any lingering leukemia cells in her spinal fluid. She will have another bone marrow biopsy the following week. Mel has requested to be put completely under for this one. I hope they grant her wish! Her last biopsy was horrific.

Melanie has still been working on getting her classroom packed up. She isn't able to lift anything or handle the dust covered items, so she directs everyone on where to put things. Our cousins have been such a huge help to her! Emily has donated many hours in helping Mel. It is so neat to see everyone helping out in their own way, when and where they can. Thanks to everyone!

An Update

2010-05-19T23:42:00.003-06:00

Sorry about the lack of updates. There hasn't been much to report which is sometimes a good thing. Mel is doing really good! She has been spending a couple of hours a day working on getting her classroom packed up. I know there are a lot of emotions about not being able to teach next year. Mel loves being a teacher. Our cousin Emily has been helping Melanie with this huge task of packing up her room, thank you so much Em. Mel tires really easily and Emily's help has been immense.

Mel has been to two ball games this week. Kaden's baseball season is in full swing and his biggest cheerleader is and always has been his mom. Mel hates to miss a single game. She has kept the teams stats for the last few years and she isn't able to do that this year because of her tremor. At least she gets to just watch the game and not be asked every few minutes what the score is.

We thought it was going to be overcast for the game tonight, but it ended out being really sunny. We had to be sure to keep Mel out of the sun. Thanks to George Lusk for being a lifesaver and letting us use his umbrella. It was funny to see the looks that some of the kids were giving Mel at the game. She lowered her mask a couple of times to show the kids that it was just her under there. She has a good sense of humor about it and doesn't get at all offended.

Cami and Mel at the ball game today.

Melanie will be going to Salt Lake on Friday for a clinic visit. They will be doing her usual blood work along with a test on her tears. They trap some of the tears from her eyes and test them for signs of Graph vs. Host disease. Mel still has a lot of things ahead...a bone marrow biopsy and some spinal chemo injections to name a couple. She is staying strong and taking it a day at a time. We are all so happy to have her doing as well as she is. She is a miracle!

We love you sweet Melly!

Clinic Day

2010-05-12T23:54:00.003-06:00

Mom and Mel went to Salt Lake today for a clinic visit. Mel's blood levels are looking good. Everything was up with the exception of her hematocrit. It wasn't low enough for a transfusion though which was nice, when she requires a transfusion it adds hours to the visit. Mel found out that her central line is coming out on its own. This isn't a welcome thing because if it does fall out then Mel will have to be poked whenever they need blood. Having her central line is so much easier! It allows the nurses to give her anything she needs intravenously, quickly and without needles. We hope her line will stay put for a little while longer. The site of her line entry looks so sore and a little infected...ouch! They have decided to start weaning Mel off of the magnesium drip and start giving it to her in pill form. It is really hard on the stomach so they are doing it slowly to see how she tolerates it. Mel also received a breathing treatment today that is pretty nasty. It helps kill fungi and prevents pneumonia. Mel has to be in a room all by herself as she breathes it because it is pretty toxic. I can't remember the name of the treatment, it has a weird name. Anyway, we hope it does its job in keeping Mel pneumonia free.

Mel was able to come back home after her clinic visit! It is such a treat to have her home! I love to sit on her bed and talk or watch TV with her. I missed the simple things while she was gone that will never be taken for granted again.

I love you Mel!!

Happy Mother's Day Mel

2010-05-09T23:27:00.004-06:00

Melanie has often said that the hardest thing about being sick for the last few months has been the time spent away from Kaden. They have really stuck together through the ups and downs of Leukemia. I think they have both learned to appreciate each other more and have learned to cherish the time they get to spend together.

Being a single mom has been really challenging and I think Mel has done a terrific job in providing for the needs of Kaden. She has worked hard to get her education despite the demands of being a teacher and single mother. Mel loves being a mother! I think she is raising a great young man! Kaden is so blessed to have a mother who loves him unconditional, with all of her heart!

Happy Mother's Day Mel!

As far as an update goes, Her labs looked good on Sat. She goes to Salt lake on Wed. for a clinic visit. She is feeling tired, is always cold, and has a tremor, but is happy, fun and smiley despite it all! It is nice to have Mel home.

Wax On, Wax Off

2010-05-07T21:47:00.002-06:00

Today Melanie had her first experience with eyebrow waxing. Before she and Kim headed back up to Hyde Park, we headed to her friend Suzy's new salon.

Melanie has always been nervous to have her eyebrows waxed, but I think she learned that it is not that bad! Suzy also trimmed the hair around the edges of Mel's head. Believe it or not, something so simple made a big difference!

Suzy couldn't resist teasing Melanie a bit. No, she has not grown hair in her ears!

Austin has been a trooper going shopping, eating, and visiting salon's. It has been a great couple of days.

Thank you, Suzy for helping Melanie to feel more beautiful!

Origami Birds

2010-05-06T21:02:00.002-06:00

We have been having a grand time these last few days. Kim and Melanie arrived yesterday morning. Melanie was a little subdued. She had learned that morning that one of her good friends, Janine Ward past away. Melanie and Janine have been friends for years. It was shocking and sad for Melanie.

Melanie spent some of the afternoon working on paying bills. She hasn't been in the mind set or availability of her bills for a long time. It felt good to get some of them checked off the list. As she is started to get some of the medical bills paid, she is even more grateful for all the donations!

Melanie is still required to have her magnesium IV every day. As long as she is on the Tacro medication, it will be a must. Some people are able to take a magnesium pill, which would allow Melanie to have her central line taken out. She isn't too quick to do that, because it makes transfusions and blood draws so much easier!

Having aunt Melanie here wouldn't be the same without some DSi download. Austin LOVES it!

A few side effects of Melanie's medicine and treatments makes clipping her fingernails a challenge. First, is her constant shaking from Tacro. We were laughing that she couldn't hold still enough to clip them. Secondly, her fingernails are peeling. She has a new layer growing, so the layer on the top is peeling off. However, she still managed to give herself a nice manicure today!

Today we had some adventures. We went for lunch at a yummy place here called Flour Girls and Dough Boys. They have great sandwiches and delicious desserts. We arrived at a great time. It was pretty empty, so Melanie could take her mask off and eat in peace. After lunch we went to Target and then Costco. By the time we made it to Costco, Melanie was pretty tired, so she rode on a moving cart. When we were starting to leave the store, this cute old man with a cart asked Melanie when she would be done using the "scooter". She told him we were done and that we could move her stuff to his cart and then he could use the one she had. After we were done transferring items, the man pulls a yellow piece of paper out of his pocket and proceeds to fold it into an origami bird. It was so cute of him! It made us all smile.

Melanie and Kim are heading back up to Hyde Park tomorrow afternoon. Melanie has a good friend, Laura, visiting from Wisconsin she wants to see. She will be able to get some blood work done on Saturday at Logan Regional, so she doesn't have to come back down that day, and she will be able to attend Janine's funeral on Tuesday.

Our thoughts and prayers are with the Ward family at this time.

Back to Clinic

2010-05-04T21:20:00.003-06:00

Melanie had a clinic visit today in Salt Lake. She and Kim came down this morning and will stay in the area for the rest of the week. Her appointment went well. They drew labs and met with one of the PA's. Her pulmonary function (lungs) went down a bit from where she was before the transplant, but they said that is normal. They are happy to see how well Melanie is doing. The nurses also commented to Kim that they are so glad she was able to go home for a bit! Along with normal labs, they also drew her 100 days post transplant labs. They probably won't have the results from that for a couple of weeks. Melanie was pretty tired when they were done, and was resting when I talked with Kim. Her red blood was down a bit, so that definitely affects her energy. She has another clinic visit next Tuesday, and several other post transplant test in the near future.

Kim and Melanie are coming to stay with us for a few days, so I will try to take some fun pictures of our adventures!

The Fundraiser Event

2010-05-02T22:18:00.005-06:00

Saturday was the big fundraiser event. Mother nature kept it cool and wet at times, but that didn't stop the wonderful supporters! It was amazing to see the outpouring of love and support for Melanie. The event raised just over $26,000.00!!! Melanie was in awe and wonder at that number. She is so grateful for all who gave so graciously! This will really help to relieve the medical burden of now and in the future. THANK YOU, THANK YOU!! There were so many donations made and money given. It was humbling to see someone walk up with just a book at the garage sale, and then write a check for $50.00! We live and grew up in such a wonderful community! Cami knows the list of volunteers better than I do, so she will add some personal "thank you" on here. Cami and her volunteers did such a great job planning and organizing the event. They spent so much time! You ladies are all outstanding!! I wanted to put a few of the pictures I took from the event. Mike was the one running around clicking photos, when it was hopping busy! We will be updating and adding to this post over the next few days!

Enjoy the pictures!

Loving Every Minute Of Mom And Mel

2010-04-28T23:17:00.003-06:00

We have sure enjoyed having Melanie and mom home! Mel looks really good and feels pretty good too. She tires very easily, but that's to be expected. It has been so nice to sit and talk to her, I've missed her a lot. I went over to my parent's home last night to see Mel and the electricity went out shortly after I got there. We sat around the table laughing and talking by the light of a lantern. Mike and Steph came over with their little girls. Lindsey kept pointing at Mel and saying something in baby talk. Taylie was especially glad to have grandma back. They read stories together and played with the paper dolls. You can tell Taylie has missed her grandma.

Here are some picture from last night.

Kaden and Mel.

Mom and Taylie reading a story.

Today, Melanie had her first driving experience since November 2009. I asked her if it was like riding a bike, she said it sort of was. She went and picked up Kaden from school and went to the eye doctor. I can't imagine how much she has missed her freedom! We take for granted just being able to hop in the car and go wherever we want, whenever we want. Mel being able to drive on her own is another small victory.

I went over again tonight and we watched a little of the jazz game. Mel had her magnesium pump hooked up to her and it was making her pretty cold. She just snuggled up in her covers and tried to get warm. She was pretty worn out by the time I left.

Mike gave Mel this tile tonight...

It was given to Mike by the father of a 5 year old girl who has been where Mel is. She is from Richmond. Mel was quite touched by it. It will be in her room. Thanks Abbot family!

Welcome Home!

2010-04-28T07:23:00.004-06:00

Last night Melanie headed home to Cache Valley! She went home amongst mixed feelings from the doctors. One doctor (Dr. Ash) was all for it. Dr. Peterson is the doctor she met with yesterday, and he was a bit apprehensive. He didn't have any problem with her going up for the fundraiser for an overnighter, but was not on board with longer. At 100 days post transplant (May 17th), they perform a bunch of tests to see if there is any graft vs. host. The doctor really wants her to be close until they know this information. His concern is that complications can come on fast, and Logan Regional is not equipped and experienced enough. Melanie has an appointment on Tuesday, and they are going to try and start the testing process as soon as they can. Melanie is ready to be home! Dr. Ash is all for it, because she thinks it will do great things for Mel's spirits!

All of Melanie's counts were down a little yesterday. It wasn't a drastic difference. The doctor said if we checked our blood they would fluctuate a bit from day to day a well. So, everything is still going well! She won't be able to be at the fundraiser the entire day, but she will pop in. It is going to be such a great event, and she doesn't want to miss out!

I have been trying to coax Melanie into posting on the blog, but it is still too hard and frustrating for her. The Tacro medicine she takes makes her hands shake. She can do quick notes on Facebook, even though that is even difficult. However, it just frustrates her to have to hit the wrong key, backspace, delete, etc. Some day she will get on here.

Welcome Home, Melanie!

See you all on Saturday! Hopefully Mother Nature will be kind!

We're Still Alive!

2010-04-25T22:12:00.008-06:00

Hi Everyone,
It's Mom (Peggy) again. We've had a pretty uneventful week. Melanie couldn't get her pictures to work so no photos again. Thursday we had visitors come. My dad, Doral and his good friend Kathy Heaps. They are planning to get married on July 8th!
It has been a short time since mom's death but my dad isn't sitting around feeling sorry for himself. Life goes on. We're happy if he's happy. We are not meant to be alone. We wish them the best! Friday we made a very short visit to the clinic. Melanie's white blood count has been the same for the last three visits (3.1). It's almost normal. Yeh! Her hematocrit was up from 30.2 to 31.3. Her platelets jumped from 60,000 to 65,000. Her neutrophils were the only thing that went down. From 2.5to 2.0. Sharon, the RN told us things looked good and Mel didn't need any transfusions. Happy Day! We decided to go visit my Aunt Ronda Hyde in South Jordan. She had a back surgery on March 3rd. There were complications with the surgery and she ended out going deaf in both ears. The surgery hasn't seemed to have helped. It's so sad that she can't hear us talk to her. She uses a laptop to read what we're saying. She's been staying with her daughter and son-in-law, Janice and Craig Downs. It was so fun to see them and just get out of the house. We stopped at Arby's on the way home. Saturday we went to Walmart with Kaden and LeRoy to get a few groceries. We stopped at Carl's Junior for lunch. We always go through the drive-thru. We had visitors again today. My brother David, and Cindy, his wife came. Thanks for the visit. Saturday night Kaden stayed with his mom while we went to my dad's 78th birthday party in Salt Lake City. We ate at The Roof. Kaden and Melanie watched Avatar while we were gone. We are thankful Melanie is doing better. Our hopes are that Tuesday we can come home and be with the other part of the family for either a short visit or a long visit. THERE'S NO PLACE LIKE HOME!

Hope to c/ya soon,

Mom (Peggy)

Home Away From Home

2010-04-20T21:04:00.009-06:00

Hi everybody! It's Mom (Peggy),
We were supposed to do the blog yesterday, but we took a break as well as Mel's sisters. Sometimes a break is in order. Melanie did a lot of sleeping yesterday and I did a weeks worth of laundry as well as a bathroom cleaning. We have to be really careful to keep things sanitized and germ-free for Mel. We went to the clinic this morning at 10:40. Melanie had her blood draws, talked to the PA, Charlie, and then had a good talk with Dr. Asch. Melanie's counts have been climbing again. Her white blood count is at 3.1. Her hematocrit is 30.2. Her platelets are 60,000. Her neutrophils are 2.5. These numbers probably don't mean anything to a lot of you, but Dr. Asch was so excited! Melanie talked to her about going home to Hyde Park. Kaden is having a harder time leaving each Sunday night. It's been a long time since he's been with his mom for a long period of time. A thirteen year old needs his mother. Dr. Asch is having the PA check in for a place that can do her blood draws and home healthcare to provide supplies for her central line and any IV supplies she might need. The usual time to leave if there isn't any graft versus host disease is 100 days from transplant. That date would be May 17th. She is on one immunosuppressant, Tacrolimis. This can be tapered off when the time is right. It has to be checked often so this is one of the reasons for staying close. We'll be glad when she can stop some of this drug because it causes BAD tremor in her hands. Her writing is like an old woman. She hasn't been able to write any thank you cards for a long time. SORRY EVERYONE. Just know that all you've done and are doing is so appreciated by Melanie. She just can't reply right now. Tomorrow we go back to the Bone Marrow Clinic to have her Tacro level checked. Friday we go in again to have blood levels checked. Tuesday we go for a clinic visit with the doctor. We're hoping for permission for Melanie to go home for the garage sale on May 1st. She will have to wear her mask and gloves. She won't be able to stay for a long amount of time, but we're hoping she can make an appearance! She tires quickly and has to be careful with large crowds of people. It will be nice to be back in good ole Hyde Park. It might not be for good yet. She has to go to the clinic at least once a week. We just have to play the patience game. We're used to that. Time to go to bed.

Love to all of you,
Peggy

Family Fun

2010-04-18T22:18:00.004-06:00

Melanie is still doing really well. Today She headed to the clinic for a check on her blood levels. Everything was up, except for platelets. They have said all along that platelets would be the last to come up. Things are looking great! She is still sore, but not in the extreme pain. She hasn't even been taking any pain medication. She looked 100 times better than the last time I saw her!

We had a little get together at Greg's house to have a triple birthday celebration.

We put up an umbrella, and Melanie even sat outside for a few minutes. She had to go in, because it was a bit breezy. If she is out in a breeze, she has to wear her mask. She would rather sit inside than wear the mask. She bought some great new hats on a little shopping adventure she took yesterday!

Our birthday kids: Greg (April 15th), Brooke (17th), and Grandpa (21st). My mom feels bad that she won't be with my dad on his birthday, but we had a great party tonight.

Melanie is really starting to get some hair! Greg and I had fun grooming it for her.

It is so nice to see her smiling, talking, walking, and just feeling better!

Quick Update

2010-04-16T23:37:00.003-06:00

Melanie was able to leave the hospital today. She is feeling and doing so much better! She made it through this bump in the road. It will all be uphill from here! She is really hoping to be able to make it up to Cache Valley for the fundraiser. We will keep our fingers crossed.

Thank you for all of your prayers!

Nightmare Comes True

2010-04-15T20:52:00.003-06:00

During Melanie's previous hospital stays, she has always had one concern. She was so nervous that there would be an earthquake, and she would be on the 8th floor of a crumbling building. Well, tonight her fear came true...kind of. They felt the 4.9 earthquake that originated in Randolph. My mom was sitting in the chair, and Melanie was lying in bed. The building definitely wasn't coming down, and there was not much movement. However, it was enough for Melanie's bed to move a little and startle them both. Something they won't forget!

Melanie is doing a lot better. Today, they turned off all the IV's, except for fluids. She is taking her medications by mouth again. Her pain pump is off, and her TPN (moo juice) is done. If she can prove to Dr. Ash that she can eat (she has not been eating enough calories on her own), and her pain is under control, she could possibly leave tomorrow. Either way, she should be leaving soon!

Melanie went walking twice today. She walked around her room without the walker, and then in the hall. She had her walker in the hall, but used it mostly for stability. The physical therapist really had her focus on standing up straight and tall, and just balancing with the walker and not leaning on it. My mom said she is walking so much better! She was a lot more alert today! She didn't have any pain medication, and was doing pretty good. The medication in the pump made her nauseous again. It was a trade off. She could have pain or nausea. This should improve as the medication leaves her system. Her left foot is still more swollen than her right, but hopefully the swelling will go away soon, especially if she can get up and walk around.

Melanie is so looking forward to being out of the hospital once again!

Pain Relief

2010-04-13T21:32:00.003-06:00

I was able to visit Melanie and mom at the hospital today for a bit. Melanie was pretty tired this morning, and slept a lot of the time I was there. I was there when the PA Irma came to see how she was doing and check her out.

Irma said that Melanie looked really good on paper. She is improving as far as pain goes as well. Melanie's blood pressure has been up, so they are watching that. They think it is due to her pain, so hopefully it will go down soon. Her other counts were all really good. She still has the sinus infection, which makes it hard to breathe. That should be clearing up soon!

Just to show you what Melanie's leg looks like. This bruising goes all the way up on the side! Her feet are still really swollen, as you can see. Irma was worried about a clot in Melanie's calf, because her left ankle is more swollen. They did an ultrasound on it, but I don't think they found anything alarming.

Melanie was able to take a shower today, which is a great sign of improvement. The physical therapist did another ultrasound on her leg to help break up the hematoma. He also got Melanie to walk around a bit. She moved so much better than she did before! Her pain is becoming more bearable. Last week her pain was at a 10. Today she often gave it a 5! YEAH!

This is Yvette, my mom's favorite person. She is the diabetic specialist at the hospital. She has helped my mom as needed. Today, my mom's insulin pump broke! She was so nervous, but Yvette came to the rescue. She ordered a new pump that will be in tomorrow morning. She helped my mom know what to do in the meantime, and gave her piece of mind. What a blessing that she is there and aware of my mother!

Here is to more improvements each day!

An All Around Better Day

2010-04-12T22:34:00.003-06:00

Being back in the hospital is just what the doctor ordered (pun intended)! Mel had a better day. She has been able to sleep and has had some relief from her pain. Having the pain med. pump has helped a lot. She had an easier time walking today as well. I'm so happy for Mel! She has been suffering so much.

Mel's blood levels were good today. Her bilirubin is really high and the doctors said that it is a sign that her body is breaking down the bruising, great news! They have changed Mel's platelets level parameters from 13,000 to 75,000...so now she gets a platelet transfusion if she is below 75,000. They did this to help boost her body's ability to clot and stop the bleeding from the nicked vein.

Mel is receiving most of her medication through IV and is still on the TPN (moo juice). She had her first session of physical therapy today. They did some ultrasound on her hip. She was pretty sore afterwards. She will have therapy all week.

We all hope that this is the beginning a many "better" days!

Nicked Vein

2010-04-11T21:06:00.002-06:00

Just a quick update on how Melanie is doing. She is still in a lot of pain. I guess she did not get hardly any sleep last night, because she hurt so bad. They start her pain medication out low and then increase it slowly, so they can find her threshold. They were going to increase it tonight, and also give her something to help her sleep. She is still really out of it as well. My mom was telling me today that during the bone marrow biopsy procedure, they nicked a vein, which is causing the bleeding/bruising, and compressing on some of her nerves. The doctor that did the procedure feels absolutely horrible! We lay no blame. There is always risk with any procedure.

Melanie has received blood and platelets today. Her IV stand is back in use. She is receiving most of her medications through IV. She is also back on TPN (moo juice). This kind of stinks! The doctor said it could take 2-3 weeks for the pain to go away. Hopefully it will at least get into a range they can manage soon!

Thank you for all of your prayers. This is just a little step back, but she will pull through!

Back in the Hospital

2010-04-10T21:58:00.002-06:00

I didn't have a chance to post last night, so I have a lot to say. Melanie was admitted back into the hospital today. Yesterday, she was still so out in another world. My mother and I worked hard to get her dinner pills down. We got 6 down, just in time for her to have to take her night pills. She was still in a lot of pain, shaky, slow, and mentally not all there. My mom called and spoke to one of the doctors. He told my mom to bring Melanie in today, and that they may admit her.

When they arrived at the hospital, they admitted her and started some testing. They took several tubes of blood, swabbed for some cultures, and scheduled some more intense testing. They did a CAT scan of her leg. They discovered that the hematoma is actually getting bigger. Not only does she have a bruise on her hip, but now she has a large bruise on the back of her knee. This is the source of all her extreme pain. The doctors said that her shaking could just be from the pain. They are upping her platelets to try and help stop the bleeding.

They performed an MRI of her head. They wanted to make certain that her altered state and slow responsiveness was in fact due to medication and nothing else. They did not find anything out of the ordinary, but they did discover that she has a sinus infection. This is probably why her white blood count had dropped today. They think maybe that is why her hematoma is not healing, because she is fighting this infection. They have started her on some antibiotics.

Melanie was still slow and altered today, because she was taking Morphine most of the day. This evening, they are starting her on a pain pump. Hopefully this will relieve her pain, without all the sedation affects! She is just in soooo much pain! On a good note, her kidney function looked a lot better today!

Dr. Hoda said they are going to keep her for a couple of days to get things under control. Melanie was not thrilled, but I'm sure she understands it is the best place for her right now.

I took a few pictures yesterday:

Melanie is getting some hair back. It looks pretty dark to me!

Because her kidneys were not doing great, her feet are really swollen right now. It is amazing how huge they are! It doesn't hurt, and hopefully the swelling will go down as her kidney function keeps improving.

She was able to lay next to Kaden yesterday. School will be out soon, and she will be able to spend a lot of quality time with him!

I want to say a few words about our mother. As I watched her patience with Melanie this week, I was amazed. She had some tears and frustration (understandably), but she never faltered on her constant ability to take care of Melanie's every need. She knows her pills inside and out. I am not even sure how to put into words the love I feel for her and the example of Christ like love she shows. If there is a Mother of the Year award, she would win!

Thank you, mom for showing us all how to care for others!

Not the Week of Her Dreams

2010-04-08T22:33:00.003-06:00

Melanie and my mom were set for a break today from clinic, but it didn't end up that way. Last night, Melanie was just soooo out of it, shaky, and it took us 1 hour to get 4 of her 9 pills down. My mom just felt that things were not quite right. She called the clinic this morning, and they headed in at about 11:30 a.m. It was a good thing they went in.

Melanie was dehydrated, her kidney function was not good, and her red blood cells were down as well. So, they spent the day getting fluids, blood, and platelets. They didn't get home until about 9:00 p.m.! Tomorrow she will have to get her levels checked again, but they arranged for her to be able to go to the American Fork Hospital, which is only about 3 min. away. They are still worried about her kidney function (her phosphorous levels are still high), so she will be going to clinic every day next week.

We think maybe Melanie had a bit too much Morphine last night. She was doing a bit better today, but is still slow in her responses. She also often stops mid activity and dazes off. She says weird things, and forgets what she is saying or just said. Watching her is a great example for my children of why not to do drugs!

Melanie is a bit disappointed about this week. She had envisioned this week with Kaden full of playing games, laughing, and even going on some adventures. She has not been able to spend as much time with him as she had hoped. Cami and her boys came down today, and Melanie was bummed that she didn't even get to see them. Hopefully tomorrow we can get her blood drawn quickly, won't need any transfusions, and then she can spend some time quality time with Kaden.

We will try to take more pictures tomorrow!

Less Pain, but...?

2010-04-07T22:13:00.004-06:00

Today Melanie and my mom met with a pain management doctor. He gave them a prescription for Morphine pills. There were two types, long lasting and short acting. It has helped to relieve the pain, but she is OUT! I mean so drugged up she can't leave her eyes open for more than a second. It is kind of funny to try and have a conversation with her. She even fell asleep while trying to drink from her water bottle. The bottle just sat on her lips. Chase said, "Mom, it's kind of scary what Mel is doing." This wouldn't be too bad, but my mom can't get her to take her medicine or drink as much as she is suppose to. We are going to have to find a happy balance between pain and coherence.

Melanie's labs were good today. Her counts were up again! Her phosphorous is up as well, which is not so good. They are worried about her kidney function. They will be watching this closely over the next little bit. Her red blood was down a little, but not enough for a transfusion.

Melanie and my mom will stay here through the week, until Kaden goes back. They will head back to Greg's after that. Melanie is probably still going to be going to the hospital three times a week. This means mom will have to stay down here for awhile longer. Melanie can't come stay with me and let my mom go home, until her clinics are shorter.

Hopefully we can find a happy middle tomorrow and have more of Melanie with us. She is definitely going to sleep soundly tonight!

A Personal Spa

2010-04-06T21:33:00.005-06:00

Yesterday was yet another day at the clinic. All of Melanie's counts were up again!! Such a blessing! They gave her some platelets, even though they weren't down today. Dr. Hoda wanted to do it as a precaution, because of the hematoma. She also received some fluids. We are so glad that her counts just keep climbing!

Today was a day of just hanging out. My kids and I had to venture to Logan for a dentist appointment, so I don't have a ton of pictures from the day.

This is Melanie's new favorite walk. We just take it slow and easy. I feel bad, because I know it hurts a bit. We call it her daily physical therapy. My mom, Melanie, and Kaden were planning to go do a little shopping, but it didn't happen. Melanie has been in quite a bit of pain today. It is hard to see her walk. She grimaces with every step, and is so shaky. We are so hoping that this will go away soon, and Melanie can feel like herself.

Melanie got a nice pedicure today! Carmen and Todd Sorensen and their children came for a visit. My mom said they stayed for awhile and pampered Melanie. She was at her own personal spa! Carmen gave her a foot massage and painted her toenails. Melanie wanted me to take a picture of her pretty toes!

I loved seeing Kaden helping Melanie tonight. He knew just how to lift her legs on the couch. I know they are enjoying spending some time together.

Melanie is in a lot of pain tonight. She has been crying and hurting for about an hour now. We are trying ice, heat, back rubs, and breathing. Oh, how we all wish the pain would go away. Hang in there, Mel! This is a bump in the road that you will be over soon.

Drugs kicked in! Blessing given (thank you, Steve and Dan)! Rest and relaxation finally come!

Easter Sunday

2010-04-04T19:53:00.004-06:00

Yesterday, Melanie and mom spent ALL day at the hospital. They were there from about 10:30 to 5:30! It was a long day for them. Melanie's blood was low, so she had to receive two units of blood. This always takes time. She is still in a lot of pain from the hematoma that is compressing her nerve. It is frustrating for her, because she would probably be feeling really good otherwise!

Easter morning, the crew headed to Pleasant Grove to spend the day with us. Melanie, my mom, and Kaden will stay the week. Melanie gets to be a mom for the entire week! Yeah for spring break!

This is how Melanie gets around these days. It is painful and hard to walk. My dad was helping her a ton. We were worried about her staying here, because of our stairs. She was able to make it down them with help from Steve, so hopefully it will work alright.

Melanie's niece and nephews were excited to have her come. She played Easter bunny, and brought them each a little gift.

They all posed for a picture with their new items. They are lucky to have such a thoughtful aunt!

After dinner, we had an Easter egg hunt.

Melanie was able to hobble out to the deck to see all the action.

The egg hunt was a success! Thank you, aunt Melanie, for bringing some yummy filled eggs for the hunt.

Tomorrow morning, Melanie will call and see if she needs to go into the clinic or not. Right now, she just needs to give the bruise time to heal. Hopefully she can get some relief and be pain free soon. We will have a great week and keep you all posted on our adventures!

Signs Of Engraftment!

2010-04-02T23:36:00.002-06:00

Mel spent yesterday in a lot of pain. Today was her clinic day and getting there wasn't easy. Mel was hurting pretty bad. It was a relief to finally make it up to the clinic. Mel had her usual blood work. Her white blood cells and neutrophils both went up on their own without the help from the neupogen shot. Her platelets were up to 34,000...the highest they have been post transplant. Melanie also has megakaryocytes in her blood, they are baby platelets...a sure sign of engraftment! This is awesome news!!! The doctor told Mel that the bone marrow looks great and there is no sign of Leukemia cells...SUCH good news! With all of the exciting news, there was some bad news too. Her hematocrit went down sharply and the doctor was concerned about bleeding from her biopsy on Wed. He was most concerned about the possibility of a blood clot. He ordered Mel to lay down and not walk while she waited for a CAT scan. The scan revealed that she did not a a blood clot, but a large hematoma. She had quite a bit of bleeding, but it wasn't active anymore. Her body will have to absorb the hematoma, but in the meantime it is pinching Mel's sciatic nerve and causing excruciating pain. It is going to take time and Mel will start some therapy on Monday to help with the pain. While at the clinic, Mel received two units of blood and some fluids to replenish what she lost yesterday being sick from the pain meds. They wanted to keep Melanie overnight to help manage her pain, but Mel kindly turned them down, can't say that I blame her. She will return to the clinic in the morning to have her hematocrit checked to make sure that she isn't actively bleeding.

It was a long day for my mom and Mel, clinic days usually are. We are so happy to have good news, it made the day more bearable. Mel is looking forward to spending a whole week with Kaden. They have sure missed each other! Enjoy being mom, Mel! We love you!

You Take The Good, You Take The Bad...

2010-03-31T23:25:00.003-06:00

Mel had her clinic day and her 6th bone marrow biopsy. Her platelets went up, her hematocrit held steady and her white cells and neutrophils both went down. We are hoping to find out why her white blood counts are staying down through the results of her bone marrow biopsy.

The biopsy today went well. My mom said that Mel was comfortable and numb during the procedure, thank goodness! It took two tries to get the needed blood samples and three tries to get the bone samples. The recovery from the biopsy has been horrible! Mel is in excruciating pain. It hurts to walk especially. She has pain down one of her legs. My mom called the clinic and they told her that with Mel's platelets being down, there could just be lots of bleeding that has pinched a nerve, or the actually needle used in the biopsy could have done some damage. We are hoping it is just bleeding. The PA at the clinic said that Mel could take three pain pills and if that didn't work, she could come into the clinic for IV pain medication. The only problem is that walking is so painful right now. Greg and his father in-law gave Mel a blessing tonight and when I last spoke to my mom Mel was finally asleep. We'll see what tomorrow brings.

Mel meets with the Dr. on Friday and will get the results of her biopsy. We'll keep you all updated!

Hang in there Mel! You have overcome so much and we know that you will make it through this too!

A Low-Key Day

2010-03-30T22:47:00.002-06:00

I talked with my mom tonight and it sounds like her and Mel had a pretty uneventful day, which in the life of a Leukemia patient is a good thing. The plan was to go shopping, but with all of the dust and wind, Mel had to stay inside. So my mom went shopping all by her lonesome.

Mel has been free from nausea the last couple of days...that has been a LONG time coming! What a huge blessing. Mel also has super blond peach fuzz growing on her head. She has been wondering what color her new hair would be.

Mel will be back at the clinic in the morning for blood work and a bone marrow biopsy. We will keep you all updated on the results. :)

We love you Melly!!

Happy Platelets!

2010-03-29T18:55:00.009-06:00

Today we had an early morning trip to the hospital for an appointment at 8:20 a.m. They did Melanie's labs, we visited with the P.A., Ali, then we talked to Dr. Petersen. It was good news in the platelet area! They came up from 20,000 to
25,000. That's a plus! Usually they go down, but they're holding their own. Her red cells (hematocrit) went down from 31.4 to 29.2. That's not so good. Her white blood count went up from 1.3 to 2.7. That's still low but better. Her neutrophils went up from 0.8 to 2.1. Now the test will be to see what her counts and bone marrow look like on Wednesday. It will be five days at that time since she had her last nupogen shot. If things look good we will continue to wait. If things are not improving, Dr. Petersen said they would give her an infusion of half of the leftover stem cells that are frozen. NO CHEMO OR RABBIT/HORSE SERUM! Thank goodness. Melanie didn't want to go through THAT again. We count this as one ot the tender mercies of the Lord. We've been receiving a lot of those tender mercies through this experience. We've received many blessings from Heaven. How thankful and full of gratitude we are for every day out of the hospital, for all of the bad news that has been replaced with good news, for all of the downs that have been turned to ups, for a perfect donor with the same blood type as Mel. Our prayers have been and are being answered. What a loving Heavenly Father we have! Thank you for all of your prayers and your thoughtfulness in putting our family's names on the prayer rolls in the temples in our area. We are so appreciative of your love and concern. You're one blessed daughter Mel! We love you and await GOOD NEWS.

Love,
MOM (Peggy)

Changing of the Guard

2010-03-26T22:30:00.006-06:00

Hi, It's Mom (Peggy). Kim flew back to Boulder, Colorado today. She's been such a great help for Melanie. Thanks Kim, for all of the sacrifice you've given to help us out! We went to the clinic today for labs. Mel's white blood count was down to 1.3 (normal is 3.6-10.6). Her neutrophil count was down to 0.8 (normal is 1.8-6.8). They gave her a neupogen shot to boost both of these counts. Her hematocrit was up to 31.4 (normal is 36-46). Of course the red cells always go up after she has been given a blood transfusion. Her platelets were 20, 000 (normal is 150,000-400,000). They have been going up steadily on their own. Yea! The PA, Steve, was excited to tell us the donor cells are 98% in her peripheral blood. Of course that was old news to us. He told us this was a good sign of engraftment. I was reading in the guidebook for bone and blood marrow transplant. This is what it says about post transplant recovery. " Even though your transplant is officially 'over', your medical recovery is not. It may take several months to years for your blood cells to regenerate to normal levels, and up to two years for your immune system to be fully functional. Until then, you will be at increased risk for infection, bleeding and fatigue. Your reintegration into life can be a long process. Your body has been through a major ordeal, and your immune defenses are down. You may be anxious to resume the family and work roles that you left behind, but be realistic with your expectations for yourself. It's unlikely that you will be able to resume your pre-illness level of activity right away. TAKE TIME AND BE PATIENT WITH YOURSELF."

What a patience tester! Leukemia is not for wimps. Thanks Melanie for being so courageous and dealing with the ups and downs of this disease. We're all waiting patiently with you and putting our trust and faith in God that the miracle we've been praying for will continue to come to pass. We're grateful for all of the support we've been given from friends, family, neighbors, visiting teachers, home teachers, ward members and newly found supporters. It's nice to have a network of Leukemia Kickers!

Love you all,
Peggy

A trek to Target

2010-03-25T22:45:00.011-06:00

So Melanie has been wanting to go to Target and get some Easter stuff for Kaden. It seemed like every time we thought we could, Melanie wasn't feeling up to it. Well, today was they day we ventured out! I think it was really good for her to get out. She got one of the motorized carts and she was off. haha Sorry Angie, I didn't get any pics..... But the mission was accomplished and Melanie got to get out somewhere besides the hospital and get what she wanted for Easter.

While we were in Target, LaDee called with the results from Melanie's T-cell chimerism (I hope I got that right). Last time they did that it was 77% donor cells. The latest test showed 98% donor cells! YES! This is a very good sign. This means that Melanie's cells are not killing the donor cells off. They will have a better idea of exactly how many actual cells (not just t-cells) are the donor vs her cells after her next bone marrow. But this is definitely a positive! We are all very happy about this!

Melanie was able to have a visit with Kaden tonight. Cami brought my mom down here as I am going back to Colorado tomorrow. It was really good for them to be able to see each other. Kaden did not want to leave. But he was a trooper and made the trek back to the valley with Cami. He really misses his mom and Melanie really misses him.

A typical picture of Kaden and Melanie having some time together.

Little Tate loves his aunt Melanie.

Well it is hard believe it has been two weeks! It is always hard to have to go back home and leave Melanie. I feel so far away. I know that she will be alright and will beat this. I have been so lucky that I have been able to come as often as I have. My work has been so understanding. And Joanie has taken care of the everything while I have been away. I am so grateful! Melanie, just know that I will be back soon. I love you so much! It has been great to be able to be here with you. Keep up the strong fight! You are incredible!!

A long day but a better day!

2010-03-24T23:05:00.004-06:00

The good news is Melanie was not sick through the night! Thank goodness! It was a very LONG day at the clinic though. Which we knew it would be. We were there from around 8:40AM till around 3:30PM. They gave her 2 units of blood. They did not have to give her platelets like we thought they might. They went up on their own. From 18,000 to 19,000. LaDee, her transplant coordinator, said that was a good sign that her body made some platelets. Mel's body just seems to like to take its time. Both her nuetraphil and white counts were up some. They did not give her a neupogen shot today. So lets hope that her counts will go up on their own for Fridays visit! Melanie will be having a bone marrow biopsy on the 31st of March. This will give them what they need to make a decision on what to do. Wait for Mel's body to start cooperating, or do the second transplant. We will definately keep you all posted.

Melanie is fighting hard and just trying to spur those donor cells into action! Keep up the great work Melanie! You are incredible!

I Love you!

A tough day

2010-03-23T22:40:00.005-06:00

Well we knew that today might be tough because Mel's blood was low. We did not expect the day that she had. She was pretty much sick all day long. She just couldn't keep anything down. Zofran is an anti nausea drug that she had been taking every morning. Her PA asked her Monday if that was helping. Melanie wasn't quite sure so they decided she would skip today and see if she needed to still take it. Well, the answer seems to be YES! I felt really bad for her. Finally at about 6:00 she called the clinic to see what we should do. We were really concerned that she was getting too dehydrated. Thankfully, they told her to take the Zofran and see if that helped. If things got worse we needed to call them back and go from there. The Zofran seemed to help tremendously! She did not throw up again and was able to sleep a good 2 1/2 hours. When she got up, she was pretty weak and tired. She was able to eat a little soup, some crackers and a little cottage cheese. She had to have something just to take the hand full of pills that she needed to take. It was all she could do to get all those pills down. Jeepers! I am very glad that her nausea seems to have subsided. Let's pray that keeps up throughout the night. :)

Tomorrow will be another long day at the clinic. She will be getting some transfusions (blood & platelets) I am sure. Hopefully they will give her some fluids as well to help replenish all she lost today. We also should find out when they scheduled the bone marrow biopsy. We will keep you all posted.

Melanie, tomorrow will be a better day.... I love you so much!

The clinic and a visit from Grandpa Perkes

2010-03-22T22:13:00.008-06:00

Today started out at the clinic at 8:20 AM. It was another 3 1/2 hour stint at the clinic. Jeepers.........it seems like it takes forever some days.... Mel is always a trooper. They checked her levels and she met with the PA and Dr Ashe today. Her levels were.....okay. Her nuetraphils were 1.3 (up), her white count was 1.8 (up). As for her red blood and platelets, they were both down. Red blood was 24.6 and platelets were 18,000. These levels are both right at the point of getting a transfusion. Melanie decided she would get the transfusion on Wednesday since we had already been there for 3 1/2 hours. Both the doc and the PA were okay with that. They did give her a neupogen shot to help boost her levels. Because her blood is low, she is pretty tired. So it will be another couple of low key days. Dr Ashe said that they will do another bone marrow biopsy next week. They are still just trying to give her body a chance to get things going on its own. We are keeping our fingers crossed that will happen soon. Mel keeps saying that leukemia is a game of waiting and being patient. She is doing her best to be patient.

Melanie had a visitor at Greg's today. Grandpa Perkes. She always loves to see him. We were able to have a nice visit. We both still find it hard to get used to not seeing grandma as well. Melanie was so glad to see him and to be able to give him a big hug!

Thanks for coming by Grandpa! :)

Thanks again for all the support and prayers that you all keep giving! We have the most wonderful family and friends. We can not thank you enough!

I love you Melanie! Your strength is amazing! I am blown away everyday by your courage! Stay strong dear sister!

Package from Tim

2010-03-21T23:31:00.002-06:00

The other day, Melanie received a special package. Her friend Suzanne sent a message to something Tim Mcgraw (I don't know the entire story). Anyhow, Melanie thinks it must be the fan club that sent her some great Tim Mcgraw stuff!

A nice big towel.

There was also, a picture, a mouse pad, the movie Flicka, and a signed CD. Melanie was pretty excited! She is really hoping to be able to go to the concert at the end of July. She usually always attends. It is at the USANA Ampitheater, which will be tricky. She can't be out in the sun a lot now! We are trying to figure out a way she could attend, and still be safe.

We had quite a get together at Greg and Charise's house tonight. My mom and dad, Kaden, Cami and her three boys, and myself and Chase, all headed over. With Melanie, Kim, Greg, and Charise, we had a full house. We did some good visiting, laughing, eating, and playing games.

Melanie was finally able to eat a red velvet cupcake. It was not the same one since the transplant. We brought her a nice, fresh one! YUMMY!

Of course, Melanie was glad to see Kaden and spend some time with him! Tomorrow she heads to clinic to have some more blood work. Our fingers are crossed for some numbers that have gone up!

Good luck tomorrow, Melanie. Love ya!