After a night of waking up numerous times and finally asking for pain meds for Allistaire at 2:15 am, I got dressed this morning in the dark, debating with myself whether or not to ask for Allistaire’s ANC before I went to get ready for the day or when I returned. I had come to the conclusion that I would wait when I saw an unexpected sticky note on the bathroom door, joyously stating in multi-color “ANC: 288.” The shower this morning was not a place to cry in privacy but a place to praise God over and over with two-word prayers. Thank you. Thank you. Thank you.
I light-heartedly walked into Starbucks for my morning bacon gouda breakfast sandwich and grande extra-hot, non-fat, 3 pump, no whip stirred Mocha (yes, I’ve become one of those people.) The day felt short as Allistaire was already incredibly tired at 11 am. By 11:30 I was carrying her back to her room, nearly asleep in my arms. Our nurse confirmed what I had heard from another mom about increased fatigue when counts come up. After getting Allistaire settled in for bed I asked that I be called on my cell phone when they doctors came by for rounds. Today’s rounds were not ones I wanted to miss. We weren’t expecting results back until later this afternoon but I had some pressing questions about the possibility of going home and how I might need to prepare. A friend of mine had mentioned serious cleaning and carpet cleaning of her home before her little man returned. I wondered if I needed to prep our house for Allistaire’s impending return.
On a whim I decided to see if Olivier had an opening today for a massage. Indeed he did and within minutes I was getting my neck and shoulder muscles worked on while we chatted about Olivier’s adventures sailing across the Atlantic in high seas – waves 40-50 feet at times. My phone rang and I disregarded it. I must have been lulled by loosened muscles and tales of danger for when I was done I immediately realized that it might have been the nurse calling me to say they were ready for rounds. I rushed down the elevator and through the double doors just in time to see the doctors about to walk in their office. They were quick to affirm that they did not have results yet, however, the pathologist thought they would be able to have preliminary results by this afternoon. The fact that the pathologist believed this was possible encouraged our doctor, Dr. Jessica Pollard, AML guru, that this was a good sign. She believed that the ability to get a good sample probably indicated a reduction in the fibrosis. By the way, I keep referring to fibrosis but I don’t know that I’ve ever attempted to explain it. From what I’ve been told, the cancer cells not only duplicate themselves endlessly, but they also have proteins on their surfaces that produce secretions that in turn produce threads of collagen that create a sticky web like structure in the marrow. This fibrosis is believed to be largely responsible for the empty nature of the marrow when it was first tested. More about this shortly.
Elated that I didn’t have to figure out how to get my carpets cleaned in the next 24 hours, I only allowed the bit of hopeful news to linger at the edges of my consciousness. I sat at the computer and typed, trying to get into words more of my experiences in this strange world that are being used to shape me. I looked up at the clock over and over. By 3:45 I figured I could not possibly concentrate any longer and decided to succumb to the mind-numbing delight of a chocolate old-fashioned doughnut at Starbucks, my second home here. In the elevator my phone rang with the nurse’s number showing up in bold white numbers. With great trepidation I answered. Our nurse Emily wanted to let me know she was going to give Allistaire some sort of medicine that helps prevent RSV (a respiratory virus common in young children.) She just didn’t want to give it to her without me knowing first she said. Of course, of course, that’s fine I respond; my lower back muscles now absolutely ringing with a tingling nervousness of anticipation, hope and fear. I had just sat down with my doughnut and ice water when the phone rang again. Same number. Same nurse. “They’re ready to meet with you about Allistaire’s treatment plan,” she says. My second concise prayer of the day. Help me God. Help me God. Help me God.
I get up to the SCCA Unit and see the doctors down the hall waiting outside our room. Allistaire was awake so I beckoned them to come to me so that my sweet one wouldn’t see me and insist on my attention. Right now I needed to give all my focus to whatever words they had to speak to me. We went to the brown room. The same little ugly room we sat in as a family just after we learned that Allistaire had AML. This is the same room in which Sten and I usually eat our dinner together after Allistaire goes to sleep and sometime watch a movie on Netflix. In this same wee brown room I was about to hear what only the miraculous inventions of science could tell me.
Sten was on phone on speaker as Dr. Pollard began. These are the results of the tests they are able to complete here in the hospital. The test is a good test here but not the best. For the best, the sample was sent out by FedEx where an even more sensitive Flow Cytometry test is performed by one of the best pathologists in the world. In that place, wherever it is, they are able to use more proteins on the cell to more precisely count the number of each type of cell in the sample. Because of the lovely snow, the sample was delayed in arriving but they believe it should get there by morning and the final conclusive tests completed by tomorrow afternoon. Here at Seattle Children’s hospital they were able to use their Flow Cytometry test to look at the aspirate (the bloody core of the marrow.) When this test was first done on an aspirate of Allistaire’s marrow on December 8th, 2011, no cancer cells were located in the marrow. They were only found in the biopsy. Today, January 18th, 2012, they did not find any cancer cells in the marrow. When Dr. Pollard said this I was unclear how this was helpful or a good sign since it seemed to me to be the same results as before. However, there is a very big difference between this aspirate and the first aspirate. The first time they didn’t find any cancer cells but that was in part because the marrow was nearly empty; empty of all sorts of cells, good and bad. Today’s test revealed an aspirate sample full of cells the way marrow is supposed to be, yet with the complete absence of cancer cells. Dr. Pollard believes that the ability to not only get a good sample but a good sample that shows no leukemia cells is a very positive sign and she is very hopeful that Allistaire is in remission. However, we must wait until tomorrow for the more precise test results. Apparently, I misunderstood that the threshold of remission is considered 5% of less blasts. This was the old parameter when pathologists were only able to rely on the morphology: what they could see under the microscope. Now with the Flow cytometry test they can detect one individual cell in a thousand or down to .001%. The newer, more accurate threshold for remission is .1%. Part of me hates hearing this revised number. Point one percent seems like an absurdly low number and like a far more challenging goal than 5%. Apparently, though, they have learned that anything over .1% still poses a high enough risk for the cancer returning/relapse, that if Allistaire is over this threshold, she will likely have to have a bone marrow transplant.
Do not worry about tomorrow for it already has enough trouble it. Today I will take the delicious news that I long to run over and over in my mind. Today I take joy that my beloved little Allistaire has far less cancer cells in her body than she did a month ago. I take exultant joy that her reality is not what I most feared – that the cancer would not only be reduced but would have grown. At the same time, I wait with held breath for tomorrow and the more conclusive results.
We were told we could go home today if we wanted or we could stay and wait for the results. We decided that we’d prefer to wait for the results and hear them and discuss them in person. And of course, it’ll be nice for Sten to go home tonight and turn on the heat so we can return to a comfortable home. I’ll have to double-check but I think we’ve been here for 40 days. It is the strangest thing to know that tomorrow night at this time I will be walking barefoot on carpet to get into my own bed. I will lay down next to my sweet husband and know that Allistaire is still just feet from me, but on the other side of the wall, in her own room, in her own crib. Tonight she was not hooked up to the IV and tomorrow night no one will even know what her blood pressure is.
Strangely like the disorientation of hearing your child has cancer is the experience of being told that they might be well. Tonight I thank God for all that He has accomplished. I thank Him for the ways He has creatively used destruction to bring about life. I thank Him for the stories and the faces that have become my home and my odd family. I thank Him for His mercy on us. We may still have a long hard road, but this afternoon He has lightened our load. Thanks be to God.
Praising the Lord with you, Jai, and praying that the test results tomorrow bring even better news. I continue to hold you all in prayer.
Thanks for the wonderful update! Thank you God!
As I am snowed in at my house (and Mich is in Haiti) I have had hours and hours of quiet time. Yesterday was filled with prayers for Allistaire, Sten and you and for good results from the tests. I’m so thankful to the Lord for the results you got – I will thank Him today and continue to pray for the road ahead – whatever that may look like. Your posts touch my heart Jai – thank you so much for keeping us updated this way.
Thank you Berna for all of your prayers and especially in the last few days!
Amen! Thank you, thank you, thank you, dear Jesus! I have prayed and prayed incessantly for God’s mercy and encouragement and just look at what God has done! No words can adequately describe the overwhelming gratitude of my heart-just as I felt it would burst from the pain of the sorrow, now it practically feels like my heart will explode from the overwhelming elation of joy! I realize we’re not ‘out of the woods’ yet, but the Lord has flooded the ‘woods’ with a stream of light and I praise Him for that! And I pray and desperately hope that the conclusive test results will bear out a miracle that God has done through modern science. He is able to accomplish that and more than we can think or imagine-may He be praised!
Mucho love to you dear daughter of mine!
Praising GOD with you. Great is our GOD and mighty in POWER!
I sat reading and holding my breath and then crying:). God is so good! So grateful to Him today for this great news!!! Good job relishing in the moment. So glad you can go home for a bit:)
AHhhhhh! Finally, a sigh of relief. Praying, praying that the next few days flow smoothly. All the details and changes and cleaning and preparing. I’ll pray that just the right people will be able to help you make this transition home safely and without stress. Now is the time to ask for help! Lots of people to clean your house, turn on the heat, vacuum floors, scrub surfaces, change all the sheets. Someone to feed you, get groceries, do your laundry, whatever other needs you can think of. And then leave you alone to rest! I realize these are all things you CAN do, but right now you don’t NEED to! I’m sure there are many, anxious to help, friends! Holding you up in lots of prayer, Friend!
PRAISE BE TO JESUS!!!!!!!!!!!!
I just heard the update and couldn’t help responding!!! I am truly weeping with joy and thanksgiving right now. I feel so very blessed to have had the chance to meet and interact with darling Allistaire and your beautiful family. You all touched me and inspired me so deeply. As always, I will continue my many prayers.
Emily – thank you so much for your love and care for us. From that early Saturday night when you told me you would be in HemOnc the next week and that you hoped you wouldn’t see us there and I responded that well if we were, I knew we would be blessed with a kind face. Thank you for all the ways your love for people has shone and in that late night in our room when you stopped by and said you were praying for us – we were not surprised to see your love for the Lord as well. Emily, I have no doubt that you have the single most important quality a doctor should have – compassion. Thank you for your sweetness, your concern and interest in Allistaire and our family and for the other fun parts of who you are – sassy shoes and easy blushing – lots to love! Thank you for aspiring to be a doctor and be a tangible means of blessing to the sick.
AMEN!!! Healthy cells! May they increase as the Lord touches your baby girl’s body. So incredibly happy for you.
“Tonight she was not hooked up to the IV and tomorrow night no one will even know what her blood pressure is.”
Great update and I’m thanking God that He’s giving you a reprieve and you’re receiving it with such grace & gratitude… I feel like this says it all, so far…
“Tonight I thank God for all that He has accomplished. I thank Him for the ways He has creatively used destruction to bring about life. I thank Him for the stories and the faces that have become my home and my odd family. I thank Him for His mercy on us. We may still have a long hard road, but this afternoon He has lightened our load. Thanks be to God.”
Praise God! Such wonderful news. Prayers will continue for her health to improve on it’s own, away from the hospital. Isn’t Childrens wonderful! My family has experienced their caring nature as well when David (my grandson) was 4 days old and received his first open heart surgery to repair his undeveloped heart. The second surgery 6 months later resulted in a shorter stay and now he is 3 and in position for his third and final surgery. I love Childrens of Seattle. Now Allistaire can go home and improve and you can be a family again. We can continue to pray for her condition into complete remission.
Thank you Jesus! Such great news! God Bless You and your family! Thank you for sharing your story! You are an amazing person! Big kisses to Allistaire!
Strangely enough Jai… all I can think of after reading this post is not necessarily a praise be to God…. but “Holy, Holy, Holy is the Lord God Almighty, who is and was and ever shall be!” I can’t think of any other way of giving him a higher praise. I am blessed to tears to read this. We continue to lift you all up daily. We love you guys.
Jai, I remember holding sweet little Allistaire last year in the infant room at BSF. My family and I have been following her progress on your blog. You have such a beautiful way with words. My grandchildren Skyler & Savannah are 7 & 8. They have been so touched with your story they pray every night that God will take good care of Allistaire and her bid sister too. The prayers of small children are so very precious to God. God’s care is good. Robin Gartin
Oh Mrs Gartin – what joy it is to hear from you! Thank you so much for your prayers and those of your little grandchildren! What a joy to know so many wee people have such sweet big hearts! I hope you are well and we sure miss seeing you and the other BSF ladies.