Allistiare is entranced watching a Tinkerbell movie on her iPad as we await the time for her surgery. There are happy little woodland scenes painted on plywood – scenes of hills and trees with sweet birds, deer, little rabbits peeking out everywhere – a place to allow your mind to be transported to. Soon however, it will be time for her to go back to the OR and be sedated for the third time this week. Today the Interventional Radiologist will go in and biopsy her right humerus bone, the marrow and a lymph node in that arm pit. The MRI from yesterday revealed a slightly enlarged lymph node (about 1 1/2 cm) and the view of the bone was inconclusive. According to the radiologist, it looks like it could be a leukemic infiltrate where the bone marrow is pushing through the bone – they call it a lesion, or it could be osteomyelitis which is an infection in the bone.
The bone marrow aspirate taken from her arm will be tested by Flow Cytometry for a percentage of leukemia. If it were to be 10% or greater, this test would qualify her for the Denver trial. I am still unclear on what will happen if it is less than that. She is scheduled for a PET/CT scan next Tuesday morning to check for any other locations in her body that might show the leukemia. I suppose there could be more biopsies taken if something showed up with this scan but that hasn’t been discussed at this point. For now we will have to go through surgery and wait for bone marrow results which we would hopefully get by the end of Friday. One of my biggest questions at this point is what we will do if there are no biopsies yielding a percentage high enough to qualify her for the trial. A part of the confusion lies in the fact that the remission required for transplant is defined as having 5% or less disease. At this point, Allistaire has less than 5%. Of course, who knows how fast her leukemia is moving but for now she is known to have 0.9%. I asked for clarification from Dr. Gardner about my understanding that the necessity of being in remission prior to transplant is to remove “bulk” disease. She affirmed this to be true. Transplant is not good at clearing out large quantities of disease, thus the need for the low percentage identified in remission. So, this leads to the question of why we can’t just condition her now and take her to transplant. These are the strange terms of this world: “condition,” which sounds so gentle and nice is actually the brutal chemo and radiation that obliterates the present marrow. They “take” her to transplant where she is “rescued,” by the infusion of the donor bone marrow or stem cells. I do know that Dr. Gardner has reopened the search for a bone marrow donor – whether this ends of being cord blood or a match with an actual person’s marrow, I don’t know. It will all depend on the details of the transplant they can give her. But the process has begun.
For now then, we wake up each day with the shocking realization that this is all really happening. We must simply walk forward through each step and make the most of it along the way. Today Allistaire has surgery and we lie low for the rest of the day while she recovers. Tomorrow she will have an echocardiogram to check her heart. All of Allistaire’s organs have to be functioning well to endure what is ahead. Thankfully, as of last check in June, her heart was doing excellent. Next Tuesday is the PET/CT scan. I’m sure intermixed in there will be a number of phone calls with docs and perhaps new tests scheduled.
It is sort of mind-blowing to think of life one week ago. I could not have anticipated this wild turn of events and yet, this is exactly how it goes in the world of pediatric cancer. This is actually not one bit surprising. When people have asked me countless times if Allistaire is okay, is she doing well, I have never been able to come up with an answer that seems suitable, or at least that is satisfying to both myself and the one asking. Understandably, we all have wanted to and have rejoiced in seeing a little girl who seems to be thriving, who is bursting with life. But for me there is always an underlying edge of “I just don’t know.” I think the term “NED,” or “No Evidence of Disease,” is best. It sort of sums up the reality – the victory and also the humility of knowing cancer can seem gone forever, when it is merely dormant, lying in wait to raise its ugly head again. I think back over the past year. This day, exactly one year ago, Allistaire and I got in the car and drove home after being exiled to Seattle for eight months. As of September 20, 2013, she was considered in remission. Three or four bone marrow tests since then have shown 0% leukemia. But it’s still there. This cancer has never truly left in these three years. So sometime between her spectacular test results in June to that first evidence of arm pain at the beginning of September, somewhere in that small space of three months, her cancer was on the move, rising up.
Tomorrow is Halloween, a day both Solveig and Allistaire were greatly looking forward to. They were both going to be mermaids. I won’t be there to help Solveig dress up and admire her aquatic beauty. I won’t get the joy of seeing two happy tailed girls skipping down the sidewalk of Main St. in anticipation of more delights. When asked, Allistaire says she will be a mermaid princess named Ariel. There are some activities at Ron Don tomorrow afternoon that she can participate in, but oh, oh, how I remember Halloween a year ago. A year ago was a time of tentative hope. As our nurse said in those days, “perhaps this is a fragile remission.” And really, we’ve had more than we might have had, more than we were told we would likely have. In August of 2013 we were told she has a 5% chance or less and probably won’t make it more than 6 months, her only chance for survival is another transplant. And here we are, fourteen months later, hoping now for a second transplant. We’ve had all this wondrous time with her and all the while her body has been healing and growing stronger. In light of this, we have been given so much, so much more than we might have had. And yet, oh how I want more of her. I want a lifetime with her.
In the farthest corner of my mind is tucked, hidden away, this one most frightening thought. It is a thought, that with stupid superstition, I hate to say out loud. I try never to look at it. I want to pretend it has never been shown to me. But there in my periphery it remains. If Allistaire dies, I will be at long last, standing on the other side of that terrible divide. I will have been cast into a thick darkness unlike any I have yet known. But I know that in this darkness are the faces and hearts of others whose lives have forever crossed into the realm where death has become real. They know, in a way that I can only imagine, the finality of death. I have seen it from still so relatively far away, because it seems, until it cuts into the deepest core of your life, it is still intangible in it’s most severe of qualities. Becca dwells there. She awakes each morning with the gut wrenching reminder that Marleigh is gone, gone, never to return to this life. And Nancy, sweet Nancy, she will never again hear her husband’s voice. April has lost her baby girl Ruby and Kate her teenage Ruby. Janet grieves that Sarah will never dance again. Mario, Jaxon, Pantpreet, Zach, Christian – all gone, but their parents remain. I have seen the Lord and known His comfort in the darkness, in splintering sorrow, but no matter how bad it’s been, I still have my girl. God needs some of His people to walk all the way down that road and to cross over that chasm that in that place they may know His comfort, they may cling to His promises, they may declare that they have seen the goodness of the Lord – in that place, the place where you can never again hold your child’s hand or look into their eyes or hear their laughter. With all that is in me I want to flee from such a place. But I know in my core, that submission to God for me, means yielding to His will, no matter the path, even if it leads there. And I pray this, Father, if you at last bring me into that wilderness of overwhelming sorrow, meet me there, allow me to see your face, to hear your voice, hold me up, bind up my gaping wounds, comfort me with your Holy Spirit and bring me peace that is beyond comprehension. Father enable me to be a comfort to those you put in my path across that traverse. By the power of your Spirit, put words in my mouth to build up and be salve, be refreshing and hope. Make my face radiant, may your light overflow to those around me. Lord I call upon your name – be faithful to your promises, uphold the glory of your name. “God is love,” this is what you claim about yourself. Let your love be so clearly and mysteriously known by those who turn their faces to you.
It’s just after 5pm now and we’ve just gotten home from the hospital. It was a very, long day. A forty minute procedure equated to 7 hours in the hospital. We are well acquainted with waiting. I had plenty of time to check emails and texts and Facebook. I am overwhelmed by the outpouring of love sent our way. Thank you to you countless folk who have called out to God on our behalf and have asked others to do the same. Thank you for your compassionate and generous hearts.
Many of you have asked how you can be of help, to let you know what we may need. Because we are still gathering data about where Allistaire’s cancer stands, we don’t know how long we’ll be here in Seattle so I hope to give more specifics on ways to help in the upcoming week. But I do know two things right now, in addition to praying, you can donate your blood. Have you done that? It is something so tangible and critical you can do to help Allistaire and other children and adults in her situation. Her hematocrit has finally started to drop. Today it was 35.2. It is never that low. The decent has begun. Dr. Gardner actually wanted to put in her Hickman line during today’s surgery. I said no way. I can’t handle seeing those things yet. I know she will need them, and probably soon, but oh they are just the most wretched sign of the reality of this all. “Access.” They call lines, “access.” Some how it is nauseating to me. They are wonderful inventions but I don’t want my child to need to be accessed! Dr. Gardner graciously agreed to wait. Anyway, back to the point. Blood. Let them stick a needle in your vein and draw out your life force. If the thought terrifies you, good, let the fear sink into you and walk forward into it. Face it. Allow yourself one tiny ounce of her pain to be your pain. If you live in Montana, you can connect to the United Blood Services website and set up an appointment in your local area. If you are in the greater Seattle area, connect with Puget Sound Blood Center.
There is something else you can do. If pediatric cancer is foreign to you, if it is a world you cannot imagine, watch the movie, “A Fault In Our Stars.” It will give you an easy taste of Allistaire’s world. If you are yet more courageous, watch the documentary, “A Lion in the House.” This documentary follows the lives of about four or five children with cancer and their families. This is a hard movie to watch, but it is an incredible opportunity to see into this uniquely beautiful and terrifying world. If you’re interested in knowing more about what life is like at Seattle Children’s Hospital for kids with cancer, watch the recently televised program, “Conquering Childhood Cancer.” I have chosen countless times to watch movies that many call hard and too sad. I willfully put myself in the position to feel pain, to get a minute taste of the pain in the characters lives, because stories reflect life and life is full of ache. It is so much more than sorrow, but being acquainted with the sorrow helps me to step one step closer to understanding and thus love. I want to love my fellow-man. Thank you for so abundantly loving us!
Praying for comfort, peace, and a miracle.
How could we survive this process without Hector!!!!!
Thank you for updates. I am planning to give blood once my cold is better. =)
Thank you for posting. The Seattle video was helpful and now able to put a face to your doctor. Praying for strength and healing and hope.
We are on our knees in prayer. I love you dear friend. Heidi Mulliken
I love you and The Lord and I believe he is sovereign…and I know He holds you all tightly in his arms. ..and yet…I want to stand on a mountaintop and yell…”this isn’t fair…this sucks..” But instead, out of respect and love for God, I fall to my knees, crying and begging….”
please Lord, grant healing…please.” I love you Jai. Tammy
Jai- praying fiercely for you and the whole family. Please let us know what you need once things begin to sort out …our family will be praying for strength and peace.
Thank you for allowing us to enter your world and taste the pain you so vividly describe. My head shook “no” as I read your posts. And yet your trust in our God is an incredible example…one I want to model my life after. 1 Thess. 3:7-8 “Therefore, brothers, in all our distress and persecution we were encouraged about you because of your faith. For now we really live, since you are standing firm in the Lord.” I am praying for your dear family
Sending you love and hugs. Donating blood.
Praying, praying, praying for your family. I was inspired last year to become a bone marrow donor because of Allistaire. So unbelievably I was diagnosed with breast cancer last October at the age of 36 (like 3 months after my bone marrow registry ). My first thought was of Allistaire. I thought of her EVERY time I went to a chemo, radiation, imaging appointment. Cancer sucks. My heart aches for you guys, and I know there’s nothing I can say that would make anything better, but I think of you all daily (even though I don’t even know you!). Also, I am in Denver, so if you do end up here, please let me know if there is anything I can do to help you out!
I thought about as I read your writing about our lesson in BSF this week. How that Hur and Aaron helped lift Moses’ arms to the heavens. Know that many are also lifting you and family up-praying for miracles-praying that you feel His presence. For the banner before us is the LORD, we follow Him. Praying that you trust God to go before you and to continue to seek His help in the battle.
I do not know you – but have found your website through Sophia Joy’s facebook page. My thoughts and prayers are with your daughter and all that love her. I can’t imagine what you are going through. I have not donated blood in over a year and they call all the time. I will be calling them to make an appointment. There is no reason I can’t donate blood and it is needed! I live in Washington – so Puget Sound Blood Bank it is.
Allistaire is absolutely beautiful; her warm smile a testament to the absolute courage these babies have. We won’t stop praying for God’s small angel!!!! Wish above all these small children never had to travel this difficult road.
Praying, hoping, weeping, falling on my knees, crying out to our Father in heaven…heal this sweet girl, let your will be done on earth as it is in heaven!
I believe that in Mason’s sweet innocence (a 4 year old praying for his friend) he sees Jesus, meets him at the right hand of God & asks Him face to face for healing for his friend. It delights my heart that Allistaire made such an impression on him that he can pray so fiercely for her. She is a light in this world!
We love you,
Erica & Mas
We are praying for your family and missing sweet Allistaire’s smiling face at school. Tell her that Lydia says “hi”. She is including Allistaire in her prayers every night too. Sending our love and prayers.
Kelly and Lydia
Oh Jai! I think of you daily and just pray for you!! Love you guys!