Getting to know AML

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Well, it is an awful dreary, flat, smudgy, blue gray day here in Seattle.  Allistaire is doing much better today.  Yesterday evening after her nap she just wanted to sit and snuggle.  She thought several times she wanted to get down from my lap and stand on the floor but it was too much for her each time and she would immediately begin to cry.  She was given a few doses of pain meds before going to bed about 9pm.  During the night I heard her whimpering and crying in her sleep a number of times so the nurse was able to call in for more pain meds.  About 8:30 this morning she was up standing in her crib talking.  She has done really well today and spent over 2 hours riding around on the bikes on the ward.  She did not seem to be holding back at all.  Again, though, these were anxious laps around the unit as I waited for the doctors to make their rounds.  We were told yesterday that the pathologist had to complete their tests in order to sign on the dotted line that Allistaire has AML and determine the subtype of AML.  Allistaire cannot start her treatment/chemotherapy until the pathologists signs off on things.  Even more significant for Sten and I at this point is trying to get all the info on exactly what type of AML and all the details that can have a significant impact on prognosis.  Apparently different sorts of chromosomal changes in the cancer cell can make it easier or harder to treat and can also determine upfront whether or not she will have a transplant.  It feels like this whole process is taking so long.  We were supposed to get word back from the pathologist last night or this morning at the latest but it’s 3pm and we still don’t know.

So, I just spoke with the doctor who had connected back with the pathologist.  The pathologist still had not received test results that were expected Monday afternoon and in addition, the pathologist is having a challenging time as well.  In order for Allistaire to be diagnosed with AML she must have at least 20% leukemia cells in her blood/marrow.  They use a test referred to as Flow which sends all the cells in the sample, one by one, down some sort of tube where they bind with antibodies that have florescent tags on them.  Each type of cell has its own unique proteins on its exterior which determine what specific type of antibodies can attach to it.  Lasers then read what frequency of light is given off by the antibody now attached to the cell’s protein and are able to label each type of cell as it goes by because they know what frequency of light refers to what type of cell.  In doing so, they are able to use this test to determine what percentage of leukemia cells she has.  Apparently fibrosis in her bones and therefore, in the sample, has made conducting this test more challenging.  I think I’ll hold off for now in going into all these details as it is all very confusing for me and I’m sure would be more so for most folks.  For those of you interested, I encourage you to read through a few sites that help explain AML.  They will do a much better job at explaining the disease than I ever could.  There are also some helpful pictures and diagrams that explain a lot.  Once we know more details I will pass them onto you.

Children’s Oncology Group

National Cancer Institute

We have one major praise – they did not find any leukemia cells in her spinal fluid!  This is one good thing we can rejoice in!

Well, it’s now after 10pm and I did get more information from the doctors but because they are still waiting on a few test results I’m still going to hold off in giving you all the details.  The important things to know is that they have verified that Allistaire has AML by determining that 21% of her blood is leukemic cells.  She is scheduled to go in for her first round of chemotherapy tomorrow morning.  This first one is an intrathecal chemotherapy which will go directly into her spinal column.  This is scheduled for 10:40 am and she will be sedated as she was for her initial bone marrow draw.  They do this regardless of the results of the lumbar puncture which looked for the presence of leukemia cells in her spinal fluid.  More than likely she will also begin her first round of intravenous chemotherapy tomorrow as well.  I have to say, I never thought I’d be anxious to start chemotherapy but I think at this point we just want to begin this process of her treatment.

Thank you again for all of your love and prayers.  They are sustaining us – and sometimes it is a moment by moment battle to fix my eyes on the Lord and not to get mired down in the gritty details.  You can of course expect that tomorrow I’ll be sending an update about how the day went though it may be brief.  Sten plans to spend the night at the hospital tomorrow night because Solveig and I get to have a big night together – we’re going to see the Pacific Northwest Ballet’s Nutcracker.  I’m really excited, and I haven’t seen my girl in way too long.

Good night stars.  Good night moon.  Good night world.

Road Warrior

12 responses »

  1. Jai and Sten, thank you for taking the time to write such thorough updates. It is good to know specifically how we can be praying for your family! I will be sharing with my kids tomorrow morning so they can join with me in praying for Allistaire and your whole family… They are so good to remind me to pray for people in need! 🙂 You are dear to my heart and I am SO encouraged by your choice to keep your eyes on the goodness of God. Wish I could come give you a hug in person, but for now, please know that our hearts are knit together with yours as we pray for your precious girl.
    Love,
    Alison (Ruckert) Albert

    • Alison, sweet Alison, thank you so much for you love and prayers for us! As a mom I know you can imagine the pain and anxiety of the unknown – but you are right – somehow, probably through the abundance of prayer, God keeps sustaining me. Thanks for having your kids pray – they have such sweet simple hearts that I know bring the Lord a unique delight.

  2. Thanks for the update..and whilst reading I was reminded how smart you are.
    To be just learning all this lingo (AND it’s because it’s happening to YOUR daughter), be able to translate it and make it simple for the reader…just reminds me how good you are with new info and that your brain is awesome!

    In other thoughts, whilst reading, I was also thinking about posting random updates because I know how isolating/all consuming this kind of chapter can be in a hospital 24/7 etc. And, then you said you’re taking Solveigh to the Nutcracker… I’m sooo soooo excited for you both to have a change of scenery and at such an exciting event. I wildly rub my hands together in glee imagining Solveigh’s sheer delight at the costumes and the pretty fairies etc. I just think of her and you know what I think: she is the most precious, to be consumed, little human on the planet. I hope you two have a really really really special time tonight. 🙂
    Love upon love to you and the girls and the hub. 🙂

  3. Dearest Jai,
    I am praying through my tears this morning – remembering all the blessings of life that are so easy to forget, and praying earnestly the God will heal. I wish we could visit, but I will try to write instead. I hope that the first chemo treatment goes well for her, and Mark and I will pray for continued peace and grace through this time for your whole family.
    Much Love,
    Aubrey

    P.S. I will be sure to include light-hearted notes with Beastie Boys lyrics and references to green convertibles in the future 🙂

    • Koder – you never let me down – as soon as I saw your name, I immediately saw you with your curly crazy hair, some sort of red shiny jersey, a hemp necklace, your guitar and broken pinky finger – an image that as long as I live will bring me great joy because it reminds me of all your exuberance and joy you’ve brought to my life- actually some really tight green shorts also come to mind 🙂 Thank you for your prayers and your shared sorrow. And yes, please do bring on the Beasty Boys – Super educated, I’m smarter than Spock, Spock, I’m going to stir fry you in my Wok, Wok 🙂

  4. Jai,
    Thank you for taking us along on this difficult journey. Trè and I are keeping you in our prayers. It has been great getting to read your updates every day when I get to work. It helps keep you in the front of my mind and I pray for you throughout the day. In fact, I prayed specifically a couple days ago that as Alistair is so much the center of attention right now, Solveigh would still feel special and that she wouldn’t start acting out for your attention. It made me so happy to read that you and she are going to get some quality time together tonight. It will be so fun to have a girls night out! I hope it doesn’t sound condescending if I say I’m proud of how you are handling this situation. Your faith is encouraging. I know that sometimes it is difficult to be okay with the trials God places in our lives. That is okay too. Isn’t it comforting to know that God doesn’t mind if we have to scream every once in a while and ask Him questions. I think He just smiles thinking of how thankful we will be once we catch a glimpse of His plan someday in the future. Romans 8:28 comes to mind; And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
    Thank you for the specific updates you are providing. It is nice to know exactly how to pray for you on a daily basis.
    Josie Madsen/Typolt

    • Josie- Thank you so much for taking the time to share your thoughts and encouragement with us. And you are right on about your prayers for Solveig. She is such a sweet hearted girl and even with all the other fun I know she is sad being away from Sten and I. It will be a long road for her as well. Much love to you and Tre!

  5. You have all been in our prayers every day since we heard. I wish we were closer so we could help more. Just know that we’re thinking of you all and praying often. Give our love to sweet Allistaire.

    • Catherine – it is joy to know that you and Sam are praying for us and for Allistaire. Thank you so much! It’s possible I might get a chance to be in Bozeman for a few days sometime in the next month or so and if that works out it would be great to see you and Sam. Much love to you this Christmas season.

  6. I read this verse this morning and thought of you guys… “It is because of the Lord’s mercies that we are not consumed, because His compassions fail not. They are new every morning: Great is Thy faithfulness.”. Lamentations 3:22-23. Hope you guys have a great time at the Nutcracker!! Praising God that it wasn’t in her spinal fluid!

  7. I am so Happy for you about seeing the Nutcracker. WE would go and see it each year when we were kids. My mom lives in Memphis TN and since she can not travel with the Cancer she sent me some Nutcracker ornaments.We wanted to go there but it was going to be to much for her with our two kids and plus if there were sick we could not be around her. That is very hard for me not to be there. I hope that you enjoy the play and enjoy some for me. I did hear that they do not have the Sugarplum Ferry. As kids we lived Ga so we saw the Atlanta Ballet. Keep the faith and hope. Michelle Brunner

  8. I heard about your plight from a fellow churchgoer in Alaska. I am glad to hear about the good prognosis recently, and our family will pray for you. Prayer helps keep your spirits up, and it’s good for us, too. May God grant your every desire, but if he doesn’t may he grant you peace to accept His will.

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