Relief and Lull


IMG_3001So the transplant happened right?  So what do we do now?  We wait.  We wait for those 150 million stem cells to meander their way into the labyrinth of Allistaire’s bone marrow.  How that happens I really don’t know.  I looked it up and this is what I read:

“Migration of hematopoietic stem cells through the blood, across the endothelial vasculature to different organs and to their bone marrow (BM) niches, requires active navigation, a process termed homing. Homing is a rapid process and is the first and essential step in clinical stem cell transplantation…Homing is thought to be a coordinated, multistep process, which involves signaling by stromal-derived factor 1 (SDF-1) and stem cell factor (SCF), activation of lymphocyte function–associated antigen 1 (LFA-1), very late antigen 4/5 (VLA-4/5) and CD44, cytoskeleton rearrangement, membrane type 1 (MT1)–matrix metalloproteinase (MMP) activation and secretion of MMP2/9. Rolling and firm adhesion of progenitors to endothelial cells in small marrow sinusoids under blood flow is followed by trans-endothelial migration across the physical endothelium/extracellular matrix (ECM) barrier. Stem cells finalize their homing uniquely, by selective access and anchorage to their specialized niches in the extravascular space of the endosteum region and in periarterial sites.”  Blood, Sept. 15, 2005, Vol. 106 No. 6

Always good to have your brain strained and your imagination invigorated right?!  So the basic idea/hope is that the conditioning chemo napalmed Allistaire’s cancerous bone marrow into oblivion and that now, desolate ground awaits a new resident – a new life-giving goo to reside in the niches.  But while we await engraftment, which should take place around day +14, Allistaire is without all that one’s bone marrow normally supplies: red blood cells to escort oxygen around the body, platelets to keep the blood where it needs to be and all those fancy, amazing white blood cells that fight the evil doing bacteria, viruses and fungus that seeks entry.  In the meantime, she has transfusions of red blood cells and platelets once she meets her transfusion thresholds.  They transfuse red blood when her hematocrit reaches 25 and platelets at 10.  So far she has had a transfusion of each.  Perhaps now is a good time to remind you to get out and give blood if you haven’t already done so.  You say you love us, you say you love Allistaire – well, she needs blood, she and whole bunch of other kids fighting cancer can’t keep fighting without blood transfusions to keep them going.  Stop complaining about needles.  Buck up and go donate.

The other two major components of this waiting game are continuing to protect her organs and continuing to protect her from infection.  Daily blood tests monitor the levels of all sorts of things that indicate how her organs are fairing in all of this.  They can add, change or adjust the dose of various medications to ease up on a particular organ or provide it with greater protection.  Between the daily rounds of the doctors and the every four-hour set of vitals, Allistaire is having her lungs and heart checked out regularly.  We examine her skin and her bottom when diaper changes occur and we shine lights in her mouth, push on her tummy, listen to her breath, count her breaths and heart rate and on and on.  So far she is doing great over all.  The biggest issue has been that her blood pressures continue to be high.  She is already on Enalapril, which is primarily used to protect her cardiac function but also has the effect of lowering blood pressures.  However, this has not been enough so the dose has been increased twice now and they have also used Hydralazine as needed.  The Hydralazine does not seem to have been very effective either so the most recent drug we’re hoping will work to bring the pressures down is Labetalol.  The nurses also noticed increased heart rates and respirations a few times, even while she was asleep.  The doctors decided this morning to have a chest x-ray done just to look to see if there are any indications of infections or problems with her lungs.  Fortunately, everything looked really good.  I am told that high blood pressures are extremely common at this point in the transplant process and they are most likely caused by the Tacrolimus (which I’ll get to in a moment).  Increased heart rates and respirations (breaths taken per minute) may be due to pain.

Thankfully Allistaire remains clear of infections as far as we know.  She has not had any fevers and while some suspicious poopy diapers yielded an initial positive test result for C-diff (a nasty bacteria that makes you poop a whole lot), the PCR test, which counts the number of copies of the virus, came back negative.  The second test is more reliable and sensitive.  Thankfully despite a number of poopy diapers, the skin on her little bottom hasn’t broken down which is a huge blessing and protection against infection.  So far there has also been no indication of sores in her mouth, despite the fact that she has not been willing to eat or drink almost anything for the last four to five days.  It seems more likely that her refusal to eat is a result of mucositis in her gut.  She has been in a fair amount of pain and had been having a lot of nausea.  Starting about a day after transplant, she started throwing up about 4-5 times a day.  Her anti-nausea meds were increased by giving Zofran as often as is possible which is every 6 hours and then adding the combination of Benadryl and Reglan, also every 6 hours.  This means that every 3 hours she has anti-nausea medicine which has been incredibly successful in helping her not throw up.  Since we started this regimen, she has only thrown up once.  The mucositis also creates a lot of pain in her tummy.  She will either hold her Piglet stuffed animal up to her tummy, or more commonly, curl up her knees to her chest with her face down to the bed.  We dropped using the Oxycodone, because as soon as it would hit her empty stomach she would throw it up.  She was started on a Dilaudid drip for the pain.  They start the dose extremely low and then give boluses as needed.  Because she has continued to need quite a number of boluses, her dose has been increased nearly every day.  There is a separate Pain Team that comes by to talk with us and determine what Allistaire needs.  With increased pain meds comes the increased risk of constipation and also suppressed respiration.  Whenever Allistaire is asleep now, she wears a Pulse Oximeter to determine “saturation of hemoglobin.”  It looks like a little band-aid on her big toe with a glowing red light.  She used to fight these big time but has settled down and accepted its presence.

The last major component of this waiting period is the necessity of immunosuppression.  Even before Allistaire received her transfusion of new donor stem cells, she began receiving an infusion of Tacrolimus.  Tacrolimus is given at a very low continuous dose 24 hours a day for weeks intravenously and eventually will continue to be given orally.  The purpose of Tacrolimus is to suppress the aggressive action of her new immune system.  Even though her new cells have not begun making their own blood cells, the infusion itself came with a whole lot of the donor’s T-cells.  This means that from the moment the donor cells entered Allistaire, they could start fighting her body.  This phenomenon is known as GVHD or Graft Versus Host Disease.  Right now the major goal is to provide time for the new cells to engraft.  Acute GVHD will more than likely occur around day 30 and onward.  In the long run, Allistaire might also struggle with chronic GVHD.  Dealing with GVHD is a science all its own.  But we’re not there yet.  Right now we are just wanting to protect her against those T-cells that came as part of the donor cells.  On a crazy side note, I just read that Tacrolimus “is a 23-membered macrolide lactone discovered in 1984 from the fermentation broth of a Japanese soil sample that contained the bacteria Streptomyces tsukuaensis.”  Is it just me, or does it seem a bit incredible that someone fermented a broth of soil from Japan and somehow discovered that it interrupted the action of T-cells?  How seriously awesome!  So when I was 9 years old, I just had no idea that someone was fiddling around with Japanese dirt which would one day be used to protect the life of my child!  Imagine what is happening this very moment in some far off location on the planet that decades later might benefit you or the one you love!  Let’s pray for the circumstances and brains of people who bring about such discoveries.  Lastly, Methotrexate is also being used as an immunosuppressant.  You may remember that Allistaire was given Methotrexate along with Decitabine in her last chemo regimen.  In this scenario, Methotrexate, a form of chemotherapy, is being given at extremely low doses on days +1, 3, 6 and 11 to also help prevent or reduce GVHD.

Lots of drugs.  Lots of little details to attend to and look for.  Lots of time waiting for the mysterious to occur.  Allistaire has had almost all of her by-mouth meds moved to IV which has resulted in the great and mighty two-pronged, six IV pump tower.  There are times when all six pumps are going at once with screens bright and active and flashing.  I thought this would result in much more horrific sleep with the significantly increased potential for alarming pumps, but thankfully so far the nurses have been amazing about being on top of it all.  Usually I am very involved in collaborating with the nurses to schedule out all that Allistaire needs in the most optimal way.  Now I leave all the meds to them because at least one or two things are always going.  I just do my part of being attuned to the little lass and the few other duties like diaper changes,getting weighed, and helping with dressing changes and vitals.  Our days are oddly full and yet slow for the most part.  Sten asked how I was feeling now that the transplant has happened.  Relieved.  The massive push to get to transplant has resulted in what we hoped and prayed for.  On day +28, Allistaire will have her bone marrow probed once again to find out how much is donor marrow and how much is still her own cancerous marrow. Hopefully her own marrow will be nowhere to be seen.  For now that seems far off and we dwell in this lull, this calm.  We know that every day with Allistaire is really a day that might not have been.  We should be home right now.  We should be getting acquainted with hospice, rather, we are on our 119th day in the hospital with the gift of having more days to fight, to preserver, to live.

Sten and Solveig flew into Seattle on Friday evening.  The girls had a great time of laughing and being super-dooper silly.  There is literally nothing better in the world than hearing those two sisters delight in being together.  The laughs that came out of Allistaire were spectacular.  Sadly, they only had that one evening together instead of the four days we were planning.  Solveig and I spent Friday night at Ron Don and I awoke multiple times to hearing Solveig cough and moan a bit in her sleep.  I slept nervously and with such great sadness.  I already knew what had to happen.  The morning was bright and beautiful and  brought with it a stuffy nose.  I knew Solveig was sick and would not be allowed on the Unit, much less in Allistaire’s room.  She wouldn’t even be able to say goodbye.  All the time I had so hoped to have with her was taken away.  Thankfully my brother and sister-in-law were able to take her early – they have a camping trip planned for later in the week.  Such a bummer for Allistaire and I though.  I pray that in those few short hours Solveig did not pass her sickness onto Allistaire.

So here we are, five days down.IMG_2981 IMG_2983 IMG_2985 IMG_3007 IMG_3015 IMG_3017IMG_2916 IMG_3022 IMG_3024 IMG_3038 IMG_3040 IMG_3041IMG_3044 IMG_3053 IMG_3057 photo 1 photo 2 photo 3 photo 4 photo 5photo 1-12 photo 3-7

6 responses »

  1. Jai, I am totally amazed at the balance of meds! And the need for transfusions is mind boggling as well. And the science of the engrafting of the donor cells. Wow. I am praying, praying that the Lord will help that engrafting process along and protect our precious Allistaire in the process. Thanks so much for the update. Sending love and hugs…

  2. I am in awe of how you manage to keep track of all these details… You are all being prayed for on a daily basis. Give Allistaire a hug for me and considered your self hugged. Love from Kathy

  3. Blood donation…. check. Just got back from it. Good Luck! Hope the little angel is doing well. Prayers being sent.

  4. You don’t know me…we live in poulsbo. Wanted you to know that we are praying for allistaire daily. My 4 year old and 7 year never forget to pray at our dinner meal. They ask The Lord to heal allistaire and be with your family. Through a bible study I heard of your family. To God be the glory!!!

  5. Not sure if you approved my former posts, as we have never met. I know JoMarie through church and I have been among the army of prayer warriors =). Watching the active and alive hand of God work miracles in Allistaire is awesome. So thankful for answered prayer. She looks healthier to me regardless of the internal physical going-ons.

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