There are no festive decorations, no plates of cookies or happy parties to attend. And yet, there is anticipation. There is glee and excitement. I whistle down the corridor. I cannot stop smiling. We have at long last arrived at the eve of transplant. The truth is that eleven days ago, I did not know if Allistaire would make it to this day. Her cancer seemed to be popping up in a new place everyday. At so many points, it felt like everything could just come crashing down. Yet, the Lord has opened door after door, and here we are. There continue to be zero blasts and everyday she seems more her vigorous little self. Today marked the last day of radiation and the radiology oncologist remarked how amazing the transformation has been since she first began radiation. So while her lymph node has certainly responded to radiation and is now down to nearly the size of a pea, her greatly improved demeanor and mobility cannot be credited to radiation. Could it be that the chemo, Decitabine, that was really just a stand in until conditioning chemo, really had a significant effect? What I know is that my girl walks again and chats and makes silly eyes and sings and engages staff in her antics and is a joy. I know that the blasts in her marrow are down from 76% to 51% in 16 days and her peripheral blasts are at zero.
Tomorrow conditioning begins, and while conditioning is not the showy, grandiose part of transplant, it is absolutely as essential. I always scoff at the word, “conditioning.” It sounds so gentle and kind. I think of the conditioner for my hair and its long list of healthy ingredients meant to nourish. No, this is an altogether different sort of conditioning. We have at hand a situation in which there is something dwelling inside Allistaire that will most certainly be the death of her if it is not destroyed. It is a formidable foe and requires obliteration. The goal of the two chemos Allistaire will receive is to utterly wipe out her bone marrow. The toxicity of the chemo is so great that her marrow would never recover on its own, hence the need for donor marrow to come in for the rescue.
My goal at the moment, is to give a few basics regarding the timing of things with this whole transplant process, and to give specific drug info in terms of the purpose or each drug and if there are major side effects of long-term consequence warranting mention. Because a bone marrow transplant is an actual process rather than one event, it is defined in large part, by a time line. At the center of the time line is the actual day of transplant, where the donor cells are given in an infusion to Allistaire. This day is known as, “Day Zero.” Anything that precedes the actual transfusion of the donor cells, or Day Zero, is counted backwards. This means that tomorrow, June 12, 2013, is referred to as, “Day -6.” On days -6 through -1, she will receive her conditioning chemos, which is the focus of this post.
On Wednesday, June 12th, Day -6, Allistaire will begin conditioning with one of two main drugs. The primary drug is the study drug in the clinical trial, Clofarabine, which will be given in a one-hour infusion sometime in the afternoon. Because people sometimes have allergic reactions to Clofarabine, Allistaire will be pre-treated with the steroid, Dethamethasone, each of the five days prior to receiving her Clofarabine. The Dethamethasone acts as an immunosuppressant to prevent her body from creating an allergic response to the Clofarabine. Of course there are with Clofarabine, all of the ordinary possible side effects of chemo such as headache, nausea, fatigue etc. The more concerning possible side effects, which occur in less than 10% of patients, are, “seizures, irregular heart beat, fluid around the heart, multi-organ failure, death, inflammation of the pancreas, and capillary leak syndrome, where the small blood vessels fail to contain blood plasma, which then leaks into tissue, causing sudden blood pressure drops and possible fatal complications.”
On Day -5, from 6am through 9am, Allistaire will have an infusion of the chemo, Busulfan. Her blood will be drawn just prior to the infusion and directly afterward, and a few additional times during the day, in order to check the level of concentration of Busulfan in her blood. The doctors know the concentration they are aiming for, therefore, the blood tests will enable them to either increase or decrease the dose the next day to better achieve the goal level. If for some reason the first dose was under the goal, they would not simply increase the next day’s dose to meet the goal, rather they would overshoot the goal in order that the average over all days of receiving Busulfan, would meet the goal. Busulfan carries a risk of seizures and so on days -6 through day zero, she will also be given the anti-seizure medication, Keppra. It seems with Busulfan, the primary risk is that of seizures which is greatly mitigated by the anti-seizure medication. However, with both Clofarbine and Busulfan, the mucus lining of the digestive tract, from the mouth all the way down, is greatly destroyed, which often results in very painful sores. Sores in the mouth often make it too painful for patients to eat and so they will be given TPN which is basically liquid nutrients given intravenously. Additionally, because both chemos will be destroying Allistaire’s bone marrow, they will be utterly destroying her immune system, completely decimating her blood counts and putting her at risk for infection like never before.
While Clofarabine alone is given on the first day, each subsequent day, both Clofarbine and Busulfan will be given for a total of five days of conditioning. On Monday, June 17th, Sten and I will have been married for twelve years and one day, and Allistaire will be given on this Day -1, a “day of rest.” This Day of Rest is essentially a day for the chemos to wash out of her system prior to receiving her new cells. On Day Zero, Tuesday, June 18th, a woman on the other side of the earth will have her blood drawn out of her for hours and her stem cells will be collected. They will then be flown, on ice, to Seattle/Tacoma airport. The cells will then be taken to Seattle Cancer Care Alliance where tests will be done to confirm they are the correct cells and to possibly reduce the volume of cells in accordance with the protocol guidelines. At long last, the cells will be transported to Seattle Children’s Hospital and then infused into Allistaire, much like a blood transfusion. Because the donor cells are coming from Europe and because they will likely have to be reduced, it is very possible that Allistaire will not actually get her cells until the wee morning hours of Wednesday, June 19th, in which case she will actually have two Day Zeros.
So it’s now past midnight and I know that I will be having to get up with Allistaire at 2am to help her take her medication, Allopurinol, which helps counteract the effects of tumor lysis. I love the idea of tumor lysis because it is the image of cancer cells being ripped to shreds. The downside can be all of the caustic goo the destroyed cancer cells can then dump into Allistaire’s blood stream. In anticipation of this, lysis labs are drawn once or twice a day to determine the level of uric acid and she is given the Allopurinol that treats any excess uric acid. I will also stand on the scale cradling her while our cumulative weight is being taken. I’ll get her settled back into bed then get weighed myself, so that the difference can be calculated to determine Allistaire’s weight. Weights are very, very important in transplant because of the many ways in which fluid retention levels can get severely out of balance.
Happy almost anniversary and happy almost day zero!!! Your prayer army is growing (anytime anyone talks about Children’s I tell them to pray for ya’ll)…thank you for continuing to share God’s goodness!
Praise the Lord! My heart is full for all of you as I read this post. I will be praying for The Lord to protect Allistaire as her body is rid of all defenses in preparation for the transplant, and that He keeps you from any form of sickness, in the days and weeks to come. I will especially be praying on Tuesday as the cells are being collected somewhere here in Europe and for safe transportation back to the States. Lord, we thank you for this donor who is willing to save another life; and we pray healing and restoration into Allistaire’s body. Prepare her for the transplant, and we thank you for the smiles, chatter and walking this week–it is music to a Mother’s ears… Let us be still and know You are God….
My heart is full of the joy that Allistaire, you, your husband and Solveig have arrived safely at this point of the process. What an arduous journey you have endured with the help of the Lord. I know that He will be with all of you every moment of Allistaire’s treatment. You will be bathed in the caring prayers of so many – God bless the donor, Allistaire, Sten, Solveig and you, as well as all the wonderful caring people involved in Allistaire’s care. Thanks to God for the increase in medical knowledge that has allowed advances in treatment to evolve to this point. PRAYERS, PRAYERS, PRAYERS . . .
Ty and I are continuing to pray like crazy for a miracle! I am constantly in awe of His amazing grace as you are strengthened, day-by-day, to endure this horrific ordeal.
Thank you for sending your greeting to me through Tasha Oard. It encouraged me so much. You are incredible! (Although I know it is God in you… to Him be all the glory, honor, and praise!)
Hugs and love,
Jai, Thank you for the update. I am so thankful today is here and the process begins. I am praying the Lord will protect Allistaire this week and that God will heal her through this process. I will continue to pray for all of you that God will give you strength and endurance this week.
Thank you, Jesus, for the opportunity to get this far!!!! Oh how we continue to pray !!
And, happy early anniversary Jai and sten! Praying for your marriage!
So thankful that you guys have reached this day! Prayers continually sent up as Day 0 approaches!
we pray for you nearly every day. So thankful to be at this day and that Allistaire is doing well. we will be praying all the -days and onward! Praying, praying!!
Dear Jai, You do not know me but I attend Trinity Church and have kept up with Allistaire’s journey. My heart goes out to you. I, too, had a very sick child at one time. So, I know frustration of not being able to do anything. I will continue to pray that God will heal her through this transplant. I encourage you to stand strong in His Word. I pray that God will nourish with His Word that was hidden away in your heart. That at the very time that you feel you can not go on, He will remind you of His power and strength to carry you. I will pray that you will be equipped for all the work He has for you each day as you support your little one. God is in control. I know that brings comfort but it also brings questions. I know that it is something to wrestle with. I encourage you to rest in the fact that He knows Allistaire far better than any doctor, nurse, or even you. You were created for these days, God knew before the foundations of the earth were laid that you would birth this beautiful child and that you would walk these very hard days. He has promised to equip you for this journey. Go to Him and glean from Him the strength you need. This is probably things you already know and have heard. However, I felt the desire to encourage you with it. Forgive me if I’ve overstepped my bounds. I will continue to pray for you.
Isn’t it glorious to realize…we began this countdown today…but our great sovereign God designed this timeline when he placed His child, Allistaire, in your arms. His timeline…every second, minute and day…His plan…even when we don’t see…even when we doubt…We celebrate with you dear Jai and Sten. we pray and pray and hold you in our arms. Tammy and Kelly
Woohoo! ((hugs)) and continued prayers as you enter the difficulties of conditioning!
Wow what a landmark reached, God is so good, I am praying for zero infections and swift and total healing with this transplant.
Oh am I sooooo happy, happy, happy to read this blog! Thank you Jesus for bringing Allistaire to this day and please continue the healing work! AMEN!!
I love you, Jai, sweet Friend! We are praying almost constantly for Allistaire and you. Strength, grace, peace to her body and to your hearts. God is with you there… Grace grace grace for these days.