To be honest, Allistaire felt anything but strong against cancer on Thursday after being discharged from the hospital. Nevertheless, it was a glorious day and this was to be our one shot for Allistaire to go to the pumpkin patch. Minutes before I took this picture she was crying hard because of pain in her face. Pain where the leukemia is eating away, eroding the bone. After eating a couple of chips so her stomach wouldn’t be empty, I gave her a dose of oxycodone. There is now a 3 X 3.8 X 3.6 cm mass of leukemia in her right sinus which is pushing her eye forward, and affecting her sinuses. Her nose runs constantly now.
“There is expansion and bony erosion of the right maxillary sinus. The mass extends into the right orbit resulting in mild mass effect on the right globe and minimal right proptosis. The mass extends into the right nasal canal replaces the middle and inferior nasal turbinates. The mass also involves the right ethmoid and right sphenoid sinuses and alveolar ridge.” (Brain MRI report)
There is also a growing mass in her left sinus measuring 2.5 X 2.3 X 1.5 cm. The cancer is pushing its way into the roots of her molars.
It hurts to look at her. It’s hard not to have my attention drawn right to that eye. I wonder what other people see. I feel some strange inward compulsion to tell everyone who sees her, this is not her. You are not really seeing my sweet girl – this weak, crying, deformed child is not her. But this is what childhood cancer looks like.
Originally, Allistaire was going to be discharged from the hospital Wednesday. Her scans that had been rescheduled for Monday had to be changed to Tuesday because her blood sugar level was too low on Monday to make anesthesia safe and the docs couldn’t just replete her glucose because then the PET scan wouldn’t work. So once Monday’s scans were cancelled we disconnected her NG tube from suction and amazingly 21 hours later she still hadn’t thrown up – this despite drinking a full cup of apple juice in relative short time to get her blood sugar level up Tuesday morning just in time for the cut off for the PET scan and anesthesia. Thankfully all went well with the scans and the anesthesiologist said she did great. So just before she woke up, the nurse removed the NG tube from Allistaire. She was quite excited and proud when she woke up to find the tubie gone. I was hopeful that with scans done and the tube gone we could get out of the hospital
Sadly, Allistaire’s potassium has been very low for over a week, so discharge was delayed. The theory is that with all of Allistaire’s stomach contents being suctioned out, her electrolytes have gotten off their normal levels. Low potassium is dangerous because it can cause arrhythmias in her heart. So it would seem like the best course of action would be to give her a potassium supplement to replete her levels. However, Dr. Rosenberg, the attending doc, feared Allistaire might either have or was going to have tumor lysis. Tumor lysis is the breaking up/death of cancer cells in which the contents of the cells go into the blood stream and eventually have to be processed by the kidneys. Extensive tumor lysis can be too much for the kidneys to handle and can actually cause acute or even permanent kidney failure. This is what happened to Allistaire the last time she took the chemo, Mylotarg. Cancer cells can lys as part of their normal life cycle or because of being destroyed by chemo.
Dr. Rosenberg originally suspected tumor lysis because Allistaire’s uric acid level jumped up. I questioned this given that Allistaire had ceased taking Allipurinol, which removes uric acid, due to her ileus. Apparently, however, under normal circumstances, the body doesn’t produce uric acid, though Allistaire’s must because she has required long-term use of Allipurinol. In order to quickly remove uric acid, Allistaire was given one dose of IV rasburicase (which turns out to be about $7,000 a dose). Because tumor lysis can also cause a dangerous jump up in potassium, Dr. Rosenberg wanted to be conservative and only minimally replete her levels. For this reason, a low dose of potassium was added to her fluids which helped keep her level up just enough to mitigate the risk to her heart. However, her level remains too low for her to restart her Digoxin and Lasix at this point.
Allistaire’s face has been getting progressively worse, even in the course of days. The side of her face along her nose is now numb presumably from a nerve being effected by the leukemia. She looks like she’s been beaten. The whole right side of her face is strained and bulging from the relentless march of cancer and its apparent impact on the draining of her sinuses. There is something so wretched about it being in her face. It feels like she’s being stolen away. I look to her left eye to see the Allistaire I know, the one I know is in there, shrouded by this struggle. She’s had pain before, pain her legs, arms, arm pit – so many places these chloromas have showed up – twenty-nine different tumors or “myeloid sarcomas” as her MRI refers to them. But the face?! Not her face Lord! Please spare her pain and deformity there.
I am holding out for Monday. Monday will be her first dose of Mylotarg. Today is day 4 out of 5 for the chemo Decitabine which will be followed by doses of Mylotarg on days 6, 9 and 12. For Decitabine we go to clinic but Monday she will be readmitted to the hospital in anticipation of the much hoped for, yet dangerous, tumor lysis. Dr. Cooper is strategizing how to best prepare her, knowing that due to the limitations of her heart, he cannot simply flood her with fluids to wash out the cancer cell guts we want to break open and spill out into her blood stream. In coordination with cardiology, she will get what fluids she can and he is planning to give her another dose of Rasburicase to completely wipe out the uric acid. However, the phosphorus and potassium can also rise to dangerous levels. Sevelamer can be used to bind-up the phosphorus. She will remain in the hospital at least through Thursday when she gets the second dose of Mylotarg on day 9. Should she have any fevers, she would need to stay in the hospital for at least 48 hours. Around day 21 she may have another brain MRI with the intention of determining what cancer is left in her face and planning radiation for what remains. Our very dear Dr. Ralph Ermoian is the radiology oncologist who is responsible for determining if and when radiation is an option, what are the risks and benefits and what type of radiation will be best given the location. He is an exceptionally kind man and I feel blessed to have him be a part of Allistaire’s care.
On another note, in case you haven’t read “The Emperor of All Maladies,” I will yet again highly recommend it. Something I found so fascinating as I read through the history of cancer was the role of “serendipity” in the progress and advancement of the understanding of cancer and its treatment. The author used this word on a number of occasions to account for circumstances in which unexplained events and even mishaps resulted in progress. Whenever I would read of “serendipity,” my face would light up with a smile. Am I just looking to give God credit where it was really just happenstance, chance? Yes. Yes I am. Because I don’t believe in chance. I believe in a God who orchestrates – down to the details. I believe in a God who works through circumstances to accomplish His will. Please be praying for “serendipity.” AML experts from around the country will be meeting next week as part of the Children’s Oncology Group. As well, my friend Julie Guillot, whose son Zach died of AML, will be in New York meeting with the CEO of the Leukemia and Lymphoma Society to challenge them to substantially increase their financial support of research for pediatric AML in their “Beat AML” campaign. Collaboration of doctors, researchers, funding organizations and parents of kids with AML is imperative to drive us closer and quicker to lasting cures and less toxic treatment options. There really is excitement in the air.
I didn’t realize it until I was saying it, but I told Dr. Cooper the other day, “We parents are your biggest advocates and promoters. We are the biggest believers in cancer research. We are the keepers of the stories and faces that can turn people’s hearts to give to cancer research. You can’t expect us, of all people, to give up hope, to say we are done fighting, to raise the white flag. We CANNOT.” The world of cancer treatment is on the move due to the accomplishments of cancer research. Just around the corner, yet out of sight, might be the thing that will provide Allistaire’s next open door.
Today such a thing is hard to imagine. Today there were blasts (cancer cells) in her peripheral blood. She wants only to sleep. When she is awake she tenderly holds her hand to her right cheek and cries, saying “ouchie” over and over and over. She doesn’t want to eat because it hurts to chew. I will turn to look at her and again see bloody snot running from her nose. She is miserable. The last few days have been the first time I can imagine ever saying yes to hospice. If it were not for the hope of Mylotarg, the hope of something that would work…if this cancer was left to progress…it’s nauseating. It is a magnificent fall sunny day. Families are headed to the pumpkin patch while my child languishes in a dark room, moaning in her sleep. It hurts. It hurts so bad.
I want to sincerely thank Keith & Janet Stocker of Stocker Farms for their compassionate and generous hearts that have chosen to give the proceeds of this year’s Pumpkin Patch to Strong Against Cancer which is a collaboration of doctors, nurses, researchers, hospitals, companies and people like you who are supporting the medical breakthrough of using immunotherapy to treat cancer – much of which is being developed at Seattle Children’s Ben Towne Center for Childhood Cancer Research.
Ohh…Allistaire. She is a Most Beautiful child!
Perfectly created and Held between His Shoulders…her life gives Life to us.
And Jai, you are a Holy Weaver of truth and TRUTH.
You authentically share heart spaces we have no right to see..and STILL you proclaim His Majesty! Even the Angels applaud your Faithfulness!
Do you grasp the Work of His Hand thru YOU to desperate sojourners outside this sacred place where you breathe?
We are with you…we pray, we plead,we hope…we Worship!
O Sovereign LORD, PLEASE give NEW life to this family…Sven, Jai, Solveig, and precious Allistaire!
We continue to petition and plead in Jesus’ name with you for “serendipity”, Jai. Praying, too, you will sense Immanuel-God’s very real presence with you as you step into each new hour, new night, and new day. Our thoughts, our hearts, are with you and our prayers are for you!
I just read Beth’s post…..how true “Jai, you are a Holy Weaver of truth and TRUTH.” Beth must be a “writer” too….every time I read your post I feel your heart💓….your LOVE ….your passion and compassion…..which so touches me to PRAY🙏 for your family on this part of your “LIVE’S JOURNEYS “…..sending this with (((((((HUGS)))))) from GOD and me….HIS LO❤️E & mine, Vanita
We are still praying!
Jai I think of you all of the time when we are doing the regular things kids do….I’m sad for Allistaire to not be doing those things. There truly aren’t words for me to explain how I feel for you friend. Jesus, Jesus…bring your peace, comfort, strength…Remind them that you are so very near the broken-hearted.
We love you!!!
I love Allistaire. I stand in agreement of all your prayers. All i have is reliance on and faith in God. I want to see her make it. Donations. Done that. I want to see her make it. She is loved. Next to Jesus’ love, nothing surpasses a mothers love. Your love for your daughter is felt immensely. I love you too. God’s will. If there is ever anything i can do please let me know.
Pleading to God for strength and rest- for you ALL
I am praying for your precious girl, Allistaire–Forr her comfort and for Gods mighty hand of rest to be in her precious body! I am praying for you, mom and dad- to continue pressing on! To remain strong and hopeful. Thank you for these updates, even though I know they must be hard. It gives us the opportunity to feel these moments with you, to support you in prayer and to give God praise.
Lifting Allistaire and your family in prayer! Praying the medication does its job and brings healing. May God grant you strength and peace during this challenging time. May His grace surround your family!!!
I’m keeping you all close to my heart, Jai. You are never very far from my thoughts. Prayers that this chemo will work and prayers for relief from all of this physical and emotional pain. May you feel peace and hope in your hearts. Love and hugs from Texas.
I don’t really know you, except we were at Master’s at the same time. And I don’t know Allistaire. But I just want to tell you that I see her. I think lots of people see her. The beautiful, funny, sweet, Allistaire. It’s so clear that even with all the pain, the frustration of years in a hospital bed, with all the pokes and prods–she is full of life. Her smile is award winning. I love the pictures of her enjoying something because that beautiful face lights up the entire room. I think I can speak for others and tell you, we see her. We see past the horrific cancer, and see your sweet girl. I pray for you and for her often.
Praying for you, Allistaire and your whole family. Followed you guys for years – and am encouraged and humbled by your example from afar. Praying for grace to sustain and new hope for each day.
My heart aches for all of you! I hope that this wretched cancer has an opponent ready and waiting to take it on and to spare Allistaire. My prayers continue to plead for mercy, healing and hope for Allistaire and all of you!
My heart goes out to you. I love you all and you all are in my prayers, knowing that our Father is right in the midst , experiencing it all with you. Praying for strength and His grace to carry all of you and that you could have a tangible awareness that Father God is carrying you all.