While I waited for Allistaire to finish up with her PET/CT on Monday afternoon, Dr. Gardner called saying, “I don’t have PET scan results yet.” I laughed and said I knew that because she was in the PET scan at that very moment. “Well, I wanted to call and tell you, I couldn’t wait, Allistaire has zero percent leukemia by Flow Cytometry!” I was flabbergasted and overjoyed. I just couldn’t believe it.
Later that afternoon she called back to say that there was significant improvement on her PET scan. Out of the six original locations, two had disappeared completely (right arm pit lymph node and right groin lymph node), two had reduced significantly (right arm and right thigh), her left hand looked unchanged but the radiologist wasn’t entirely sure it’s a lesion. The final spot on her left thigh looks brighter on the scan which means larger – a total size of about 1cm. All in all her chloromas have shown great improvement.
This means she is in a great position to move forward with transplant. As I explained previously, she can’t go directly to transplant but must have “bridge chemo,” while we wait for the timing to be worked out with the donor for transplant. At this point, Dr. Bleakley says it could take four to six weeks before full approval from the German and U.S. sides are complete. So one of the considerations with what chemo to give until transplant is timing. The other most significant factor is what is best to keep her disease at bay. Because of the aggressiveness of Allistaire’s disease, Dr. Gardner is concerned that just doing Decitabine alone may not be enough. Because we have the time, Allistaire’s body is still in great condition and it has already worked, it’s been decided we’ll move forward with a second round of the DMEC which she just had. Not only does the timing of this round. which takes 39 days to complete, (7 days of Decitabine, four days off, 28 day cycle of Mitoxantrone, Etoposide and High-dose Cytrabine covering the first five days) work well with the time needed to make arrangements for transplant, but when this course has been given in the clinical trial it has been given in 1 – 3 rounds. The reason for this is in part because the way in which Decitabine works actually progressively becomes more effective. What this means is that in the first, even second round, you may not see the full potential of Decitabine. This is exciting to know that if it has already worked, it could potentially become even more effective against her remaining cancer.
One amazing thing to note is that this combination of chemos was not available when Allistaire relapsed the first time. It was not even an option available to her. What if this protocol had been available a year and a half ago and she could have had the more intense transplant planned for her had she been in remission? Maybe one transplant would have been enough. This illustrates how crucial the need for cancer research is. For we parents, it feels like we just need out kid to hold on long enough – something new may open up, some new discovery that will make another open door for them. There is a thrilling buzz in the air. Things are changing and the hope for radically different, more effective, less damaging treatment is really on its way. I look forward to the day when we can look back at what Allistaire has gone through and see it as archaic and brutish compared the sophistication of the treatment that is coming. Around the hospital there are life-size photos of various researchers at Seattle Children’s. It was fun to have Dr. Gardner’s smiling face great us as we entered the radiology area on Monday.
Tomorrow Allistaire will see a doctor who will check her over primarily to give the go ahead for her to begin chemo. Her ANC must be 750 to start chemo again and since it was 742 on Monday, I’m sure we’re good to go. On Friday she will begin 7 days of Decitabine. This is done outpatient so she’ll just have to go into clinic once a day. By the way, she was discharged on Saturday morning and we are at Ron Don. I guess I didn’t make that very clear before. She will then have four days off and be admitted on January 6th. She will have the other three chemos each day for five days (Jan. 6 – 10th). It will be the same schedule as before where she will be inpatient for at least 28 days until her ANC falls and rises back up to 200
The end of this round should be about February 2nd. By my estimates, she would have about a week off before conditioning begins. Conditioning will probably be 1-2 weeks, and then she has the actual transplant. My guess is that her actual transplant will occur sometime in the last week of February. Once you have the transplant, she would probably remain in the hospital at least a month which means sometime in late March, or April she would be discharged from the hospital. You are required to stay in Seattle for 100 days post transplant assuming there are no complications to require you to stay longer. This puts us at June. If all goes well, we should be able to return home sometime in June. Oh wow that’s daunting. June sounds forever and ever far away. But you know what, if I get to come home in June with my child alive and thriving, that will be miraculous and well worth it! I will have missed the entire long Montana winter. But what a greeting to come home in the green of June.
I really am in elated awe of how well things have gone. It is not important that Christmas be a happy time for us. Last year on Christmas, Allistaire was getting chemo. Three years ago, Allistaire was getting chemo. But wow, is it lovely to be walking forward, knowing she’ll get chemo the day after Christmas, but we have hope! Hope! What a glorious thing – how it changes everything. When I walked in the door of the Unit in early November, all I felt was a thick suffocating blanket of dread, of impending doom. The ray of hope was the smallest sliver. It feels much easier to walk back into battle knowing there looks like there might be a way through. Being gone from home and from Sten and Solveig so very long feels quite sad. But again, we do what we must. Allistaire is worth it.
So this Christmas, I have so very much abundance to praise God for and simply delight in. I’ve got a silly wild cat of a daughter who might just be able to keep walking forward through this battle against cancer. On Christmas morning, Allistaire and I get to go pick Sten and Solveig up at the airport! We have a whole week together and friends of a friend have made their house available so we have much more freedoms to have a great visit all together than when Allistaire is in the hospital. And of course, we celebrate the birth of Jesus Christ. Emmanuel. God with us. Christmas has everything to do with cancer. It is the very truth that God is with me and He is with Allistaire, that we can persevere in joy! Oh how I am in constant need of God with me.
Merry Christmas friends! And WOW – thanks for the prayers! I don’t know how God’s sovereignty and His admonishment for us to pray all works together – it is mystery. But you people, who honor me, you humble me and you honor the Lord with your persistent prayers. Thank you!
By the way – the first picture above is Allistaire with Deb and Carrie – our Financial Counselors who constantly show us love and concern. Turns out Carrie has an in with Santa and arranged an early delivery of a often recounted, very hopeful Christmas wish by Allistaire which was to have a doll with blond hair and a red and gold dress. Wow did Santa get that one right. You’ll also see Allistaire in a sweet belly dancer costume thanks to me dear friend Kai, who I have not seen in well over 10 years. She and her husband are missionaries in Turkey. What a joy to see her today.
Continuing to pray for all of you. Our God shines through with a shining light and blesses with His answers to prayer for Allistaire, oh, what an awesome God! You Jai are a shining light to the world around you. You will never know until glory with Jesus the lives you have touched by your faithful testimony to your Lord during this journey He has asked you to take. You are traveling it well, trusting your Lord with each turn in your path. Giving the glory for each victory to our precious Lord. God is using you for His purpose. Your light is shining through to oh, so many others along the path, hang in there girl. Thankful you will all be together for Christmas, to celebrate JESUS and enjoy each other. God bless
What wonderful news!
I am praying for Allistaire, and your entire family.
Praising God for His Goodness even in the HARDEST OF TIMES!!!!!!!!!!
As I read your post I laugh and I cry, but Jai, you always end up encouraging me.
You are Amazing, and I know that is GOD’S GRACE!!!!
In His LOVE GRACE Regnier……..still praying for a complete healing and more strength for you & family and little Allistaire.
That is such great news! Continued prayers for Gods healing. Your faith and words inspire me. You are such a blessing.
Boy, the title for your blog could not be any more appropriate !!! Joy and fear and pain and HOPE and FAITH….one big conglomeration. Thank you for sharing your journey and praise God for every blessing along the way…
Continuing to keep you all in our prayers !
Thank you for this Christmas update Jai! What glorious news in anticipation of our Savior’s glorious birth! Merry Christmas!
Merry Christmas to you and your family. I learned of you from my cousin Marilyn May in Bozeman. I am a psychologist and behavioral scientist at the Hutch. I have been following your journey and praying for Allistaire and your family. I donated blood at the Hutch last week in Allistaire’s honor. Let me know if there is anything else I can do. Thank you for sharing your story. You write well.
So awesome! Rejoicing with you! Have a wonderful time together as a family this coming week 😀
Merry Christmas, Jai and Allistaire!
“Then rang the bells more loud and deep
God is not dead, nor doth He sleep
The wrong shall fail, the right prevail
With peace on earth, good will to men”
What good news – 0% leukemia!! I’m hanging on that and praying for all to go as best it can from here to the transplant the end of February. Allistaire looks beautiful without hair. She’s grown up even more since I’ve last seen her. So good to hear that you four are together for the Christmas week.
Continuing prayers and love from Bozeman,
Praising The Lord for some good news! We continue to pray for your sweet Allistaire! * We have a girl from our church at Children’s having surgery so Craig thought he’d stop in to see you all but you weren’t there. So hello from the Houston’s. Thank you for your updates!
I want to let you know that I am praising God with you, too. I don’t know you personally, but I am a friend of Gloria. I have been praying with you and now I am rejoicing with you. Hallelujah!
Pray for you all the time Allistaire! 😉