We Have a Plan!

Sep 3, 2019


Last week, I received a phone call from our medical coordinator. (Side note: before this all happened, I never realized that a big medical diagnosis like this one involves the coordination of so many different doctors, teams, and staff that it literally requires a person whose main job is just to juggle it all and make sure that each cast member shows up at the right place at the right time.)

And she said, "I've emailed you a schedule for the next two weeks. Take a look at it and let me know if you have any questions."

I must confess that with the word "schedule," my little Type A personality started to do a little happy dance. An actual schedule! With dates and times and appointments all mapped out. It was a beautiful thing to me.

We're now well into checking things off the schedule: consultations with nursing, pharmacy, nutrition, physical therapy, and the transplant team; appointments examining pulmonary function, hearing, heart function, and neurological processing to establish a baseline for all of Aaron's organs; exams and labs for Maxwell; and of course always more labs for Aaron.


All of these things are leading up to next Tuesday, September 10th, when Aaron will get a central line placed and be admitted to the hospital. When you have a transplant, the days before it are counted as minus days.  So, for example, Aaron will be admitted to the hospital on Day -6. 

On Days -5 through -2, he will receive two different types of chemotherapy, which will effectively wipe out his immune system and clear out his bone marrow. It's shorter than it would be if he had leukemia because his body has already done a really good job of killing everything on its own.

Day -1 will be a rest day. And then, if everything goes according to plan, Day 0 will be on September 16th. Maxwell will arrive at the hospital early in the morning. He will go to the operating room, and the doctor will extract his marrow from his hip bone using a long needle. The doctor told us they want to take about 600 milliliters (about two soda cans' worth), which is twice the amount that an adult gives when they donate blood. Max will be tired and a little sore afterwards, but he should bounce back very quickly. 

The bone marrow will be processed, and then on that same day in the afternoon, they will give it to Aaron through his central line. It will be a new birthday, so there might even be a party.

After that, we will start measuring time as plus days. Engraftment (when the body begins to make blood cells on its own) typically occurs sometime between Day +14 and Day +21. Aaron will probably be able to go home from the hospital about a week after that.

This morning I was reading an interview about aplastic anemia (because that's what I do these days), and the doctor described the treatment like this: "I view the transplant as four phases. The first phase is making sure you are a candidate for a bone marrow transplant . . . The next phase is what we call the conditioning phase, and that's the immune suppressive chemotherapy . . . to get your body ready to accept the new immune system. The third part is the transplant itself . . . And the last part of the process is what I like to call 'deal with it,' and those are the side effects that go along with everything we just did."

That's a pretty good rundown of everything we've been told so far.

Except . . . 

I think he left out a phase between numbers three and four. This was a phase that I was pretty naive about at first but that slowly unfolded as we gathered more information and met with the BMT team. I would call it the isolation phase, and from all that I've heard, it will be the longest and most boring phase of the entire process.

After Aaron comes home from the hospital, he will basically be confined to the four walls of our home until he can begin to be weaned off of the immunosuppressant drug, which will not be until six months post-transplant. 

Six months. That means no school, no church, no activities, no events. But while we're busy keeping him away from all of these things, we also have to somehow protect him from the invaders that will try to infiltrate our home on the hands and bodies of our other four children. I get overwhelmed when I think about the impossibility of such a task, so for now, we're focusing on the things we can do (i.e., follow the schedule). 

Last week, eight days after he started sixth grade, I finally admitted defeat. I picked Aaron up from school and took a "last day of school" photo under the school sign, which was, ironically, still welcoming students to the new school year. 


It was pretty sad, but you know what? Now that it's done, I feel so good about it. I am actually excited for a year of teaching Aaron at home and getting to spend all of that time with him. Not many moms get to have a year of one-on-one time with their 11-year-old. 

Time to make some more plans . . . 


8 comments:

  1. Wow. We'll be praying for you guys.

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  2. You’re going to be his best teacher ever. We will be cheering you on through all the phases!

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  3. So he'll be in the hospital for a month plus?

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  4. You always said you would home school if you ever felt your kids needed it and clearly now Aaron needs it. I just got so sad that it may mean that none of us may be seeing you in the next 7 months for dates and such... Worth the sacrifice but can we do on FaceTime dates with you and Mike? Trade food on the doorstep? Hopefully Aaron gets lots of cyber playdates with friends too. Hugs! I am so excited you get to move forward and start beating this! One day at a time!

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  5. Man, the timing isn't quite right -- Aaron would have made a great Cybils judge this year. If he's stuck at home anyway, what better time to read 100 or so books for sixth graders? I hope he and you enjoy homeschooling -- I agree it sounds like a special opportunity.

    Aaron's condition is scarier but I have a dim understanding - my nephew who lives across the street has some issues that included having a kidney removed before he was ten so we have some experience with doctors (and squinting at your own kids wondering if they really need both those kidneys...) and hospitals but nothing this protracted. I'm glad you have so many friends and family and community around you.

    I will be thinking of you and pulling for Aaron (and Maxwell).

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  6. Thanks so much for your update!! This is such an exciting time for your sons!!
    You will learn to love Zofran!! (Wish I still worked there so I could be his nurse) They will take good care of you all. Put your names on the prayer roll last night!

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  7. Praying that Aaron has a successful and speedy recovery. May I suggest that during his isolation period he read the, "The Freddy the Pig" series by Walter R. Brooks. They are so very delightful and Aaron will be taken on so many wonderful adventures. Please do look into the books. The audio versions are terrific. I will keep your family in my thoughts and prayers. Best of luck!

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  8. At the pig farms out here in Yuma the workers are required to shower before they enter the facility in order to prevent the risk of infection which can be detrimental especially at the farms with baby pigs. Maybe you could institute a mandatory "showering off and change of clothes when you come home from other places" regimen for the other members of your family. It maybe tedious but could be worth some peace of mind. At least washing hands can make a huge difference. My kids know when they come home from school the first thing they do is wash their hands to make sure their hands are free from gluten for my sake. Also, when I was a kid and someone was sick we would sometimes be quarantined to our bedroom to help avoid spreading sickness to everyone else. Otherwise the sickness could last weeks by time it got through 11 bodies. You are close enough to family that you might even be able to rely on other family member's homes to help keep sick siblings quarantined. That sounds really sad, but could be really helpful during those six months of recovery. These are my germ-a-phobia survival tips. I guess having OCD can be useful at times. ;)

    Amy, I know you'll get through this. I saw your dedication in college to practice the organ for hours every day on top of your hours of classes and homework. You have the experiences and skills and personality to be a great teacher and the awesome mother you already are.

    As I have experienced challenges in the past (and present) I often remind myself that this challenge won't last forever, at least not with the same intensity. And I also remind myself that I will probably miss this time when it does pass, so I should do my best to cherish it while it lasts, no matter how tiring or painful it may be.

    I love you dear friend and am rooting for all of you!

    -Beth Inouye

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