Day 69 Post Transplant

Blessed to have these 2 mammas!

I keep trying to get Marshall to provide an update here, but he has been super busy helping potty train Kez while I have been at work a lot. He is a super daddy! He's still tired and I am so thankful for all he has been willing to help with so I can help pay some bills and learn a new responsibity at work.

Kez sporting the outfit grandma Lucile got him from Hawaii

Kez has done really well with potty training so far and I hope he keeps it up. I know he's a little young for a boy, but his cognitive skills are getting better and every day he wakes up bigger. I really hope Marshall stays in remission this year for many reasons, but one of them is so that we can attempt to have more children via IVF. I love Kez so much and he makes every day better for our family.

Marshall goes into the hospital on a weekly basis now. He is there now doing a pamidrinate infusion for his bones. He has osteoporosis, so to try to avoid breaking bones, they do this infusion. He can tell you more about it when he finally gets on this blog again. His creatnine levels have been high for a while and doctors and P.A.s say it is very typical after being through not only one, but two bone marrow transplants. 

He still has not needed a blood transfusion through all of the second transplant. For a while, people kept coming up to me and asking, "Why is he so pale/yellow?" His blood levels were low for a while, but not low enough to receive a transfusion. Right now his blood is coming up on his own. Hopefully it will continue to do so because it's quite possible the leukemia would be coming back if it starts going down.

His 30 day bone marrow aspirate came out clean with 100 percent chimerism. This means he is working on his third set of DNA and we know through a slip of the delivery guy that this time his DNA is foreign (it came from a man outside of the United States). So now not only am I married to a younger bone marrow, but a foreign bone marrow. Life is never dull with this guy that's for sure!

Marshall's attitude is a lot like this and Kez's is like this at his appointments. Some weeks I have just been staying home with Kez now that Marshall is doing well. Since it is flu season soon Kezman will not be allowed in the clinic (no kids during this time of year).

 We had a great surprise from Landon Cooper from Miles to Give. Check out his story here: http://miles2give.org/.  He ran for Marshall on my birthday while we were in Texas.

Speaking of birthdays, Marshall turned 29! I always think his birthdays are extra special because if it weren't for a couple young men willing to donate their bone marrow, he would not be alive still today. This year thanks to my friend Jen I was able to take him to a Dave Matthews concert:

He also got a new bed that is supposed to be good for his back, but I think it is too firm for me. I have been doing a lot of things around the house to try to match the new paint and flooring that was put in the house while we were in Texas with Marshall's treatments. Maybe I will make a blog entry about all the steps of sanding, painting, all that if someone wants to know, but for now here are some pics.

Tyrel and Melanie moved out and I just want to give a special thank you to Melanie and Matt Mortensen for allowing us to enjoy our home a little more while Marshall has had to be couped up. We did make a temple trip with them before they left, so that's good!

We have a new sister in the Hunt family! Her name is Vanessa. She is from California and I just love her to pieces. Her and Sam are great for each other! We also found out that Matt and Brielle are having a BOY and I wish they were here for Kez to enjoy his new boy cousin, but they took off to Kansas so Matt could go to chiropractic school for a few years. Brielle's sister Jilisa threw a very fun gender reveal party.

Sorry for the picture overload, but I'm not feeling too wordy today- I'd rather show you what we've been doing. I pray every day that the Leukemia will stay away. In the meantime we try to make every day the best we can. In 30 days Marshall will have another biopsy- his 100 day check-up.  Doctors say there is a seventy-five percent chance that it will come back and we will be back to square 1. I am hoping that Marshall falls in the twenty five percent category like he fell in the twenty five percent category last year when it came back after first transplant. I try to keep myself busy to keep the numbers from nagging at my scientifically-minded mind. If it does, we will continue to fight. Thanks for reading our blog and fighting along with us while you have your own challenges in life. We love you all- to your health!

TRUST

Trusting in a higher power. Proverbs 3:5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." And for dessert, the cherry on top, the extra wisdom: verse 7: "Be not wise in thine own eyes: fear the Lord, and depart from evil."

I have been ignoring the blog for a while. If I was completely honest with you I would say that I have been trying to ignore the fact that we are still at the front lines of this leukemia fight for a while. It gets weary. I am worn and down-trodden.

Church was wonderful today! I think I say that every week. I do not know how people go through life without the strength and power the gospel brings every time I learn more and more about it and about Him. My Beloved Eternal Father who forgives me when I try to do all things by myself. When I say by myself I do not mean without help from others (life would be impossible without that right now!), but I mean without Him. When I am too angry watching my husband suffer to humbly retrieve to my knees and talk to Him about why and how I can help my husband and son all over again.

For a long time now there has been this pioneer story that keeps being repeated over and over in our ward. It is about a tiny 5 foot nothin' pioneer woman. When her husband told her to leave him on the side of the trail to die she screamed, "I will not be a widow in Zion!" and threw him in the hand cart which she carried for who knows how long. A cute couple (the Wrights) even reenacted it on a trek.  At first I resented that I kept hearing the same story over and over. Then I realized He was communicating with me. An answer to my prayer.  Some days I feel that I am that woman. Pulling my little family along and praying that my husband will live through another day. Not wanting to be a widow!

Today finally when a High Councilman spoke I realized He was trying to tell me to get in FRONT of this trial. The Lord will allow a way out if it be His Will. If that is not His will, "And should we die before our journey is through, Happy day! All is well. We then are free from toil and sorrow too; With the just we shall dwell!" I don't want you to think Marshall is dying here (although he was 0.16 away from official kidney failure this week), I do hope he lives on, "But if our lives are spared AGAIN" (again is very important in his case- those of you who know him well know he's lived through some crazy stuff and now he is on transplant 2). "Oh how we'll make this chorus swell! All is well!"

I want you all to know that your prayers for him were and are being answered. He is doing well. In the case that things get worse I wanted to write this down in case I am not strong enough to do it later, but I know that no matter the outcome your and my prayers will be answered according to His plan. [Disclaimer: I may have just written this blog post in order to not eat the last 30 minutes of this 3 day juice fast that Melanie and I have been doing, but it worked! And I am going to eat now!] Just like pioneer journals are read and inspire us today for the trials our ancestors went through I hope someday to print this and have Marshall inspire those who come after us through this trial.

The Contest

It's good to be back in Salt Lake City. We arrived last Sunday afternoon. While we were in Texas my brother and his wife moved into our basement and (with the help of some generous friends) have been making renovations to the house. I felt like I was on one of those home makeover shows. New carpets, wood floor in the dining room, tile in the kitchen, new paint, and new furniture - they've been busy! Pictures to come - they are trying to complete the finishing touches before my transplant.

I start preparatory chemo tomorrow at noon. This time the drug is Fludarabine. According to Wikipedia, "Fludarabine inhibits DNA syntheses by interfering with ribonucleotide reductase and DNA polymerase." I'm not really sure what that means, but my incredibly intelligent wife (biology major) could explain it to you if you'd like.

The good news is that my doctor told me the dose is small enough that I should be able to keep my hair this time! I am scheduled for chemo infusions Mon-Wed. I also have radiation on Wed (a very small dose compared to last year). I get a break for the 4th of July and my transplant is scheduled for the 5th. 

The reason the chemo and radiation isn't as extreme as last year is that my transplant is going to be a little different. We have a new donor - perfect match again - but this time I will undergo a "non-myeloblative" transplant. This means that we are not counting on the chemo and radiation to kill off any cancer cells that may be lurking. The preparatory regiment is only to weaken my immune system so that the transplant can engraft. Basically we are counting on the donor cells to kill any cancer that's hiding or tries to come back. This is called the graft versus leukemia effect. On the other side the transplant can also fight my body, this is called graft versus host disease.

After our family transplant consultation with my doctor my Father-In-Law asked, "Have you been practicing your tight-rope-walking?" 

It's going to be quite a tight rope walk starting next week! I am grateful for the amazing support system that I have. Thank you again to everyone who has been so kind, and charitable to my family. I know that I am not alone in this trial. I understand how busy life can get; often it almost feels like we are in a race or contest. I appreciate the many who have taken time out of their busy schedules to serve me and my family. In closing I'd like to share with you a dream a had a few nights after we arrived home from Houston.

The Contest

6/27/2013

Last night I dreamed a dream. The details of which are now obscure. What I do remember is this.

At the commencement of the dream I was amidst a contest. In front of me was something very desirable. The other contestants were standing in a line with me and they also had an object of great desire before them. The object itself was locked somehow – not necessarily by a key but by some puzzle or riddle. The object and the puzzle seemed to be different for each person. More desirable than the prize before me was to be the first one to crack the code – there was a glory in it. Over a loud speaker a voice was urging everyone to hurry, hurry and be the first – to win the race.

Although I didn’t know what being the first would bring me I really wanted to win! It seemed I used all my mental capacities and physical skill to solve the puzzle or “open the box” before me. My efforts were fruitless and I began to despair.

Soon I noticed a commotion. One contestant had left their station and had began to walk down the line and “open other peoples boxes” – I wondered how one person could be so innovative as to know how to solve so many puzzles that nobody else could? I watched in amazement, and wondered why this individual hadn’t been announced the winner. It was then I realized that their box, their riddle, their dilemma had not been solved.

Epiphany, I left my station and began to “open up boxes” for others with ease. Down the line I went and soon others began to do the same. The voice on the loudspeaker was shouting as if we had broken the rules and would be disqualified. It didn’t matter though, those who had been served were happy and those who served even happier. They had attained the object of desire, not alone but together and for eachother.

Shingles, Surprises, and Sheeshes

Marshall has felt so well- the best I have seen him since he was diagnosed with ALL a year and a half ago. His blood counts have also been superb- his neutrophil number was the same as mine last week! The P.A. and doctor here told us that Marshall could go without his acyclovir and his mask and fly home for a few weeks while he had his mandatory break from the blinatumomab.

Well we took it and ran! We flew home on a Saturday without telling any family or friends. Julie did know I was coming (not Marshall) and I told Kelly because if anything went wrong I wanted someone to know.  We wanted to be able to enjoy time with family and friends while Marshall felt so well because we know from experience as soon as we are back for transplant he probably won't be able to do much. Also. Marshall had some trasplant work up he needed to do while we were in Salt Lake.

On Saturday Cyndi told the Jensen fam that if they wanted to do a video for Miracle for Marshall that was going to happen this was their chance. So after we surprised Tyrel at our house,

we headed to West Valley to surprise Marshall's parents in the middle of their interview with Cyndi. We stayed at a park a block and a half away until Tyrel texted us the code text to come. I wish I had that video, but we do have when we surprised Melanie. The next day we went to Barry and Julie's. Barry said he wasn't surprised because this is totally Marshall's nature. I agree with him wholeheartedly. After Marshall was diagnosed last year I told him I could go the rest of our lives without any more surprises, but Marshall loves to surprise! Let's hope he surprises all the doctors and beats this leukemia even after relapse.

Our next surprise was to drive to Miracle for Marshall in Idaho on Monday that was put on by my marvelous McKee family! YES we are blessed to have such marvelous friends and family. $7,000 was raised and we thank each and everyone that bid on items in the silent auction in Utah and Idaho and who have donated to our fund to help Marshall have a miracle! I wish I had my other computer with pictures and videos Brielle gave me, but you can check out more about Miracle for Marshall here: http://mattandbriellehunt.blogspot.com/2013/05/miracles-for-marshall.html

 

I also got to have some fun while I was in Utah! My wonderful sister in law Julie wrote an essay about our story and I won a Mother's Day makeover called the Beauty of Mom from Lunatic Fringe salon in Sugar House. They darkened and thinned out my hair. I actually wouldn't mind having a fro so I'm still getting used to the lighter feeling. It's nicer in Texas that's for shizzle!

That night we went to Alex's preschool graduation! I remember how small he was when I first met him and I am such a proud aunt for what a smart little boy he is! His teacher will have a challenge challenging him!

 

Kezzy sure loves his aunt Julie and cousins! I'm glad they have a special bond even if it was so hard on us to leave him behind when we first went to Texas.

While we were in Utah and in between Marshall's transplant work ups we also had a small birthday party for Kezman since we won't be able to do that afterward. I was so glad that Grandpa and Grandma Reese were able to join us for the occasion.

 

 

 Special thanks to Brielle for making such a cute Thomas the train cake! Kez loves trains! Marshall couldn't wait and put up the train banner in the morning and when Kezzy saw it when he woke up he was ECSTATIC! Shaking and pointing all day saying Choo Choo mommy choo choo! Also thanks to Sterling who helped Kezman blow out his candles. Kez is my careful boy when it comes to things like eating cake and blowing out fire and I am just fine with that. So glad we were able to celebrate with family and friends there and can't wait to celebrate on an even smaller level again.                

We have amazing neighbors in Woods Cross that helped us with our backyard and plant some tomatoes  and flowers the Saturday we were home. I hope they are alive and well when we get back :)!

 One of my best friends who is living in Wyoming but is in the process of moving to Washington state called me late one night saying she was driving to Primary Children's for her baby girl with her sister in law. We went to visit her while she was there and thanks to the Mortensens she even got some yummy dutch oven food that we brought to her at the hospital. Her little girl is great and I am lucky to have amazing mommies to look up to and hope to be like someday! It was also great to see our wonderful friends Matt and Megan, Teri, the Weilers, the Mortensens, and the Goalens while we were home and everyone else I didn't list we love you all!

Well as if we didn't have enough on our plate Melanie and I decided last minute to run the Woods Cross 5K on Memorial day. I am glad I woke up to do it because our awesome neighbor Styles won an award and was giving his speech at the service AND they were raising funds for our wonderful friends in Moore, Oklahoma who's house was leveled by the tornado! I met Chris Goelz at BYU-Idaho and took a trip with him to California my freshman year to visit the awesome Hunter family in Gridley. 

Tyrel was just trying to get more picture of his lovely wife Melanie and I was photo bombing his photos. Ha! Sorry. On top of all that my amazing sister-in-law Melanie loves interior design and is going to change up the house a bit while we are away for the next month. Love you Melanie!!

Well for better or for worse we are now back in Texas. At the moment I would lean toward the worse. We expected Marshall to be in the hospital for 3 days as he starts his second biotherapy regimen to keep the cancer in remission until transplant. They biopsied him agan as part of the study curriculum and afterward they found a rash growing near his biopsy spot. We found out it is shingles and is most likely from his previous donor's chicken pox when he was little. It has been a year since his first transplant now and Marshall has not yet received the vaccinations he will need.  I was glad Kez and I stayed in a nearby hotel while this was going on.

They released Marshall yesterday, but 2 days after he started the BITE again, he was feeling under the weather. They tested him and he's positive for parainfluenza. Kez also started with similar symptoms just a little while after Marshall had them. So today Marshall went into MD Anderson by himself since Kez is not allowed in or near because he is sick while I stayed home with Kez.  Good thing one of us has a good immune system! We were expecting a bag change and blood count review today as usual. They noticed his shingles have spread on his thigh so they are admitting him to give him IV meds instead of just treating it with pills. As I sit here typing he has been sitting in a waiting room for 3 hours. Oh sheesh!

Happy Transplant Birthday to Me

One Year ago today I underwent my first bone marrow transplant. The procedure was nearly the same as a blood transfusion - they just hooked me up to a bag and drip by drip I received those magical stem cells. If I remember correctly, they gave me a hefty dose of Benadryl and I was pretty well out of it for the rest the afternoon.

Transplant Day 2012

This year my transplant is scheduled for July 5th. Luckily the preparatory regiman (chemo and radiation) is not as intense so hopefully I won't be as sick post transplant. This being the case, I won't have to stay in the hospital unless I spike a fever or have some other unforeseen issue.

I have begun my second cycle of Bite here at MD Anderson. No fevers this time, not yet anyway. My research nurse told me not to expect them because being in remission there are not any lymphoblasts (cancer) for the medicine to help destroy. As long as my condition remains stable I am scheduled for discharge tomorrow afternoon. Then it's back to life with the eternal fanny-pack.

Right now Amanda and Kezman are staying at the hotel across the street. I can see their building from my room - it's the third one on the left in the background (the short one). That gigantic arm on the adjacent building is just my reflection off the window in my room. How cool would it be if everyone outside could see it!

I had a neat experience sharing some of my music yesterday. The patient in the room next to me complained about my incessant guitar playing. Apparently she had a chemo headache and I totally understand - no hard feelings here. Running out of options I suited up and headed for the lobby on 24th floor. There I was able to play in solitude, that is until my new friend Lori showed up with a couple of her friends. They came dancing around the corner and we jammed out for a while and swapped cancer stories.

Strangely the elevator to the 24th floor goes straight from 24 to 22. I asked one hospital worker and they weren't sure what they do on the 23rd floor. I have my own hypothesis though... 

Alien experiments - how else are they finding all these creative new immuno-therapies? I mean come on, "Blinatumomab" - that doesn't sound very human to me!