I am proud of how brave she is. She has a homecoming dress, a date, and a great bunch of friends. We've spent the past week trying to figure out what she will do for a head covering. She has a really HOTT wig, but the problem is that it is also hot in a literal sense. She is still not comfortable going with nothing (but I have noticed she is doing this more around the house). We went to Ulta yesterday and I probably overspent there (sorry Susie), but she did get some money from Gramma Roo (thank you so much). She got a little makeover, it was the sweetest thing ever. The woman helping us was the most kind and caring person. You can tell when someone is genuine... that was her. A genuine soul.
But I am afraid.
I'm afraid of her being sick there, getting too tired, getting an infection. I'm afraid of things that I cannot even say out loud. I'm afraid of things no parent should be afraid of.
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Today we are 3 weeks into Consolidation Part 1. Day 20 to be exact. Consolidation is two parts. Part 1 is days 1-28, and Part 2 is days 29-57. Abigail was randomized to the Experimental Arm of the study AALL1131. To recap, she has VHR B-ALL (very high risk, b-cell, acute lymphoblastic leukemia).
I would like to report that things have returned to normal.
They have not.
We have found a new-normal.
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The boring part of the update: medical stuff.
The past 3 weeks have been a roller coaster for us. Abigail had an acute psychotic episode for about a week. I was very scared. Her team has still not determined any metabolic or physiologic cause for this, but she has fully recovered and is back to herself. She's had her PICC line removed and a port placed. She has been trying to go to school, but most days is not well enough. We have a new tutor. That's right we are on our second, the first was not a good fit.
I've grown to feel a sense of attachment to her nurse practitioner, Maureen. She calls weekly. I feel like she really cares. Her doctor, Elaine, has earned 100% of my trust as well. Here's why:
Abigail has had strange back and neck pain intermittently since diagnosis. Accompanied by headaches and an almost inability to move. We were told "it's muscular" and were treating accordingly with no relief. At her appointment on Monday Elaine asked more questions and did an exam, which to my horror was positive for meningitis. It was another day where I hated that I know what I know.
Elaine reassured me. It's aseptic meningitis. It's from her IT methotrexate and that day she made the decision to cancel her lumbar puncture and IT mtx. Her platelets are only 45 so there was some conflict about whether or not it was appropriate to use NSAIDs for pain control. They did give her a dose of Toradol in her IV, and it helped some. However all week she's been struggling with pain.
Two weeks ago her hemoglobin was down to 6.3. She had to get 3 units of PRBCs. I think her counts are probably down very low again by how she looks today and how she feels (very dizzy and nauseated, fatigued, and pale).
In the last 3 weeks a summer cold has run through the house. I was terrified Abigail would get sick.
And she did.
But, it was not the end of the world and she is actually almost fully recovered.
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I think that's what I'm learning. That's been my lesson in life. Both: finding a new normal and it's not the end of the world. Some people have this inherent ability to see life through this lens. I've had to learn it. I am learning it.
Thank you for anyone who continues to read this rambling.
For my ex-husband's family: I deeply apologize for not updating sooner. I realize you probably do not feel comfortable reaching out to me to ask about her.
"Believe in love's infinite journey, for it is your own, for you are love. Love is life"
--Rumi
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