Day + One Hundred and One

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IMG_4982Under ideal circumstances…ideal circumstances being you’ve survived the napalming of chemo and radiation and the attacks of Graft Versus Host with your cancer still no where in sight, you get to start the transition to home come Day + One Hundred and One.  But we all know Allistaire’s wretched cancer peaked its ugly head around Day + 50, showing up as a mere “point zero one percent.”  That’s all it took to cause us to swerve off the desired course down an unknown and often dark road.  But here we are, quite a bit further down this road of unknown distance and today we have ALL good test results.  Yeeha!  Such joy, joy, joy, joy!

The past eight days, like the past three weeks, have been simply bursting with activity.  Friday: Blood draw, clinic visit and bone marrow test.  Saturday and Sunday: round two of Azacitidine chemo.  Monday: early morning lab draw, longest echocardiogram ever and chemo.  Tuesday: Allistaire throwing up seven times in 6 hours starting at 2am, lab draw, chemo, diarrhea, clinic, lunch with grandpa, seven loads of laundry.  Wednesday: more diarrhea, more laundry, informal clinic, chemo, Jai throws up four times in 3 hours.  Thursday: early morning  consumption of contrast in prep for CT scan, wait two hours at hospital for scan while I feel awful and Allistaire plays on iPad, CT scan, chemo, long nap, headache.  Friday: Everyone feels great, chemo, clinic and good news!

It has been quite a week and one I am seriously thankful is behind us!  Today Allistaire wrapped up all of her Day + 80 assessments which primarily look at her level of GVHD, with pictures being taken of her skin and Natalie, the PA, having her demonstrate a variety of positions to look for GVHD in the joints.  While next Friday looks like the day when the doctor will officially go over all results and a sort of summary of where Allistaire stands, I believe I’ve been given all the results so far.  As mentioned before, there is no evidence of GVHD in her eyes or mouth and her flexibility is excellent.  The urinalysis that tests for certain proteins that can evidence decreased kidney function came back perfect.  Her liver function tests are all perfectly within the norm.  Her echocardiogram showed that her heart function is stable since the time it was tested prior to transplant.  At that time of testing it was improved since being given Enalapril and I think it is within the normal parameters, but certainly no additional damage.  The chest x-ray was great with no evidence of infection.  Her CT scan, which she did for the first time without sedation, was excellent.  There is no sign of the two small fungal nodes which were once on her lungs, no evidence of any issue in the lymph node which enlarged significantly with cancer at the time of relapse but which was radiated, and the area on her back was “improved.”  The last CT (prior to transplant) said that the area on her back was decreased in size from the previous scan and at that point the doctor believed the remaining “haziness,” to simply be scar tissue, so all looks good there.  The level of iron build up in her is at 1,000 (not sure of units) whereas the norm is 180.  Because of all the transfusions Allistaire has had, iron builds up, however, apparently this level of 1,000 is really quite good given her circumstances.  The PA said they have kids with levels up to five and eight thousand.  Thankfully, Allistaire has not needed a single transfusion since transplant and because her marrow is producing blood, it draws from the body’s iron stores to produce red blood, thus this number will continue to diminish.  If necessary, they can also do some modern-day blood-letting where they suck off some of her blood (through her Hickman), causing her marrow to be stimulated and pull out more of the iron stores to replenish the red blood.  Her chimerism tests have also improved to completely perfect!  This means that 100% of Allistaire’s peripheral blood is being produced by the donor marrow and 0% by her old marrow.  There are three blood lines tested and about a month ago they were 97%, 100%, 100%.  On Tuesday morning, just as Allistaire’s throwing up was subsiding, Dr. Delaney called to relay the good news that the Flow Cytometry from Allistaire’s bone marrow showed zero percent cancer.  This morning in clinic we received the cytogenetic results which were also perfectly normal, with no evidence of the MLL rearrangement or any other mutation.

This marks Allistaire’s third remission from cancer.  As the nurse put it today, perhaps it should be considered a “fragile remission.”  We know with stinging clarity that remission doesn’t mean the beast has been slain, but it has been severely wounded at the least, and for this we give abundant joyful thanks!  I am just so thankful for all the good news, for all the evidence that shows that Allistaire’s body remains amazingly strong and still able to fight!  I am so humbled by this gift because I know there is absolutely no guarantee of the ability or opportunity to continue the fight, to walk forward.  We know not what any moment holds, wow have I learned that.  Any sense of predictability has been utterly stripped away.  But you know, predictability itself can be a barrier.  It says – this is how things should go and while I have lived much of my life with things going pretty good, lately it’s been pretty rough and for many, many in the world predictability means invariable hardship.  So like statistics, predictability is being tossed on the winds, whipping away from us.  Statistics say Allistaire should basically, never have gotten AML, but she did.  Statistics say she most likely will die from this disease, but she might not.  Who cares what statistics say?  They have no power over our lives.  Yes, the scientist must pay attention to the numbers to evaluate the risks and the benefits and to advise the way forward, but I am the mom who walks with this girl hand in hand, and we will keep living each day asking for more life, partaking in and delighting in and being sustained by the life daily given us.  The Lord directs our path, not numbers, not likelihoods, not probabilities, not the best-in-my-view, but according to the glory of His beauty and goodness.  Good grief I don’t know what He’s up to.  Some days it’s the worst news and sometimes our hearts are so lifted with joy at the tangible life He has extended.  The real battle is to constantly re-orient my heart to Him.  The battle is to constantly yield and say out loud – the goal, the direction, the hope of life is to know the living God.  Physical life and health are wonderful but they are not the end goal.  The battle is to say, by whatever means you deem fit Lord, open my eyes more and more to who You are.  Terrifying.  Exhilarating.  Wide-open-ended possibilities.

“Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.”  Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.  Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”  James 4:13-15IMG_4937 IMG_4938 IMG_4939 IMG_4942 IMG_4947 IMG_4961 IMG_4967 IMG_4968 IMG_4975 IMG_4980

18 responses »

  1. Yipppeeee! So happy for your wonderful news! Just further proof that God is in charge of it all.
    I remember very clearly in school when they told us that not all results are explained by science. People in medicine would like to think so; but it is not so. Prayer and faith in God are two of the most important things in care. There is no research to prove it. There never will be, and that is what makes it an uncomfortable thing for doctors to discuss–but your story proves it to be true. Your story proves it over and over! Praise be to Him!

  2. Precious respite. I pray that God allows it to last a long time. Thank you for your posts. I’ve been following closely and praying with you regularly.

  3. Oh, what an awesome God we have! He tells us that He will do exceeding, abundantly. More than we could even ask or think. What incredible truth! He is faithful, and He is at work in your little Allistaire’s body, but oh, the work He has done in so many hearts and lives who have read your blog Jai. Who knows? Only God knows the true impact that will be revealed in glory of your faithfulness, your witness to all those who’s lives you have touched there while in the hospital and at the Ronald house. You go girl? God bless!

  4. My heart leaps for joy at your news! Tears of gratitude to what God is doing flow. We continue to pray that those numbers will be perfect and that this dreadful dragon will be slain for good! God truly is in control and already knows the outcome….the final outcome. It is our duty to trust Him no matter what. Love you Jai! We rejoice with you over victories- big and little!!!!

  5. We are so joyful with you over this news. Praying daily for your family. Sure wish I had Allistaire back in our children’s BSF class. She is loved and missed.

  6. You are right…being at home is being in the center of God’s will…and there’s no place like home. You are a blessing to me.

  7. Thank you Jai for sharing the wonderful news! God’s mighty hand is in all of this and His blessings always go above and beyond what we expect. Allistaire is a star in so many ways 🙂

  8. Nothing but joy and praise to The God who is the only certainty in a world where certainty is scarce! Thank you for allowing us such a privilege to follow your journey and allow our lives to be touched and changes by it! Much thankfulness in our home today! Many blessings! Love, Cassie

  9. One day at a time, Lord! Thank you for each day we have!! “Courage is fear which
    has said its prayers”. Your life, Jai, is such a great example of that. I care and am
    praising and praying and expecting God. Hug Allistaire for me and save one for
    yourself. Sharon

  10. As the sun shines today I pray it will continue to shine on you and sweet Allistaire. What joy your blog brings to all of us who love you and want God’s total healing for you. Please know you are loved and prayed for continually. Hugs! Liz

  11. Hi Jai, my name is Stephanie and I’m friends with Karen and Anthony St. Martin. (I was actually Nicole’s Wish Granter through Make-A-Wish.) I know you’ve struggled being alone out here with Allistaire, and I just wanted to let you know that I would be more than willing to help out in any way that I can. I can sit and play with her while you rest or take a break, or whatever you need. Nicole and I always have a blast together, and I love younger kiddos, too. My e-mail is stephanie.m.squires@gmail.com. Please, do not hesitate to reach out! Praying for sweet Allistaire and your family.

    Stephanie

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