Homecoming

Today is Abigail's homecoming dance.  It's a bittersweet day for me.  A mix of fear and pride.

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

Minimal Residual Disease (MRD)

On Monday Abigail had another lumbar puncture (LP) and bone marrow (BM) test.  The BM test is used at the end of induction to test for response to treatment. The scientists use a special test to look for the number of leukemic cells remaining in the bone marrow, which is called the minimal residual disease (MRD).  This test is 1000 times more sensitive than looking at the bone marrow under a microscope (that was the 'old way').   In order to be considered MRD negative, the result has to be 0.01% or less (leukemic cells present).  We were told it would be about 3 days, maybe 4, to get the results.

The MRD is only one factor that may predict a child's prognosis.  The other factors feel like they are already stacked against us: age and her chromosome translocation.  I was so very hopeful on the MRD results.

Monday's CBC result was extremely promising; I teared up when I told Susie.

WBC: 1.59

Hgb: 10.1

Hct: 31.1

Platelets: 264

ANC: 1081 (Over 1,000 is considered normal, and as you may recall the ANC is what we use to judge how strong her immune system is.)

Her labs are normalizing, and as her doctor Elaine put it, "That's what happens when the kid goes into remission."  So we went home Monday night with a light heart full of optimism.  Also Abigail tolerated the LP and BM better than when she had those procedures at UW.  She had no spinal headache whatsoever.  I did have to be demanding (read: bitchy) about the pre-bolus.  And after I talked to the anesthesiologist and explained what happened before, he reassured me that he felt this would not happen again.

It's hard to trust.  Especially when you don't feel heard.

She was able to lie flat for a little over an hour post-procedure, she got some tylenol and a caffeine tablet.  Our plan was to go to the Ronald McDonald House Monday night, but she felt so well, we decided to just go home.

Yesterday we were told her MRD, unfortunately, was positive.  I had a small breakdown, fear crept in.  Abigail was sitting at the dining room table with her tutor doing college algebra lessons, and I was on the couch feeling myself fall into the dark hole.  I started hearing that voice -- you know the voice, the one that's always there being negative.  The voice you don't even realize you hear sometimes.  The voice you have to fight to be louder than.  "What is the point of anything."

After a pretty lengthy discussion with both Elaine and Maureen,  I felt this news was less dreadful than I initially did.  Her MRD result was 0.036%, which I'm told is still extremely low, but also definitely positive.  This means she is in a very high risk category for disease relapse.  Elaine told me at this point we should not be worried about Abigail beating this cancer, but about it coming back.  She reassured us we are already in the very high risk category because of her age and her genetic report, so our plan does not change.  We continue with consolidation (the next phase) which lasts about 2 months.  At the end of the consolidation phase we will re-test the BM and hope for a negative MRD at that time.

I tried not to ask, and I tried not to want to know.  But I asked anyway.

What if the MRD is positive again?

We will consider transplant.

But I'm perpetually working on living in the moment.  And in this moment Abigail is doing college algebra with her tutor.  She has minimal pain, good blood counts, acceptable energy level.  She is smiling and laughing.  She has friends who love her and she is planning on going to homecoming in a few weeks.

In this moment we needed to decide whether or not to stay on study or go off.  I wanted to go off study.   Elaine gave us her HOME NUMBER to call her last night if we had any questions about the study at all.  Who does that?  I'm extremely impressed with her.  We presented the options to Abigail, after explaining best we could what her MRD results meant.

We are staying on study.  Today or tomorrow we will know the results of the randomization and will know which arm she has chosen (which treatment plan).  The study for those readers who are so inclined to want to know such a detail is called AALL 1131.

Monday if her counts are still good, she will have her port placed, and we will start Day 1 of consolidation which consists of a very, very long chemo day.  (Here is a website that explains what a port is.  Right now she has a PICC line.)   Here we go, another beginning.  Another Day 1.

"Be brave my darling.

You have faced dark times before

and you're still here now."

C.T.L.

Day 22; Trust

You need to be positive.

You need to stay strong.

You need to pace yourself.

You need to ask for help.

You need to eat.

You need to sleep.

You need to just be a mom and not a nurse practitioner.

You need to ask questions.

You need to have hope.

You need to not hover over her.

All of this is true; I really need to do/be/say/feel all of the above.  But I am getting tired of being told what I need to do/be/say/feel.  I know everyone is well-meaning, people are good and kind at their core, and no one really knows what to say.  But sometimes I get tired of it.  Sometimes I get tired.  Period.

Yesterday I was tired.  It is physically and emotionally draining for me to take her to the Children's Hospital.  This week was better though.

Our nurse practitioner at Children's, Maureen, is growing on me.  I feel like she listens to me.  She read me the results of her CBC and my instincts were that her counts were falsely high due to dehydration.  I asked for a BMP and while they don't normally order them for routine chemo days, she did it anyway.  Abigail was dry!  She got a fluid bolus right then and there, and Maureen ordered fluids for home that I can give her at night to keep her hydrated and to keep her home from the hospital.  

This morning when I got up at 7am Abigail was making herself breakfast and she asked if we could go to the school today so she could find her locker and get ready for her first day tomorrow.  WHAT THE WHAT?  She has totally perked up from the fluids.  It really is amazing to me what dehydration looks like in young people and how fast it happens.  I emailed Maureen and asked if we could hold the fluids tonight and if I need to restart them this week, I would like to reduce to 1.5x maintenance (she had her on 2x maintenance last night).  

She replied in 20 minutes.  She wrote:

I trust your judgement.

I think this might be the first time I've heard that in the past 3 weeks from a medical professional.  It was definitely the first time I heard it and believed someone meant it.  Maybe I am starting to trust myself.  Maybe I'm allowing myself to trust them.

Day 20; I'm Positive This is Shitty

So it's happening.  This is a reality.  I have a kid with cancer and this is our new life.  We discuss platelet counts, ANC, and PICC line flushing at the table now like it's basic dinner conversation.

Last week, Thursday to be exact... 3 days ago... I had a breakdown.  A literal nervous breakdown.  The scary, I can't breath, and I might actually be having a heart attack breakdown.  I was moments away from calling it quits and heading for the hills.  Only 3 days ago and yet it feels like another lifetime ago.  I reached out, which isn't always what I feel comfortable doing.  I texted friends who are local, and asked for help.  I didn't know then what I needed, but I knew I did not want to be a crying, slobbering mess alone.

"Please come lay next to me while I cry."

Or something like that.  And you know what?  A friend did come over, and I just laid there, and I cried.

I also texted a friend who is one of my surrogate mothers.  She has gone through hell and back, a couple of times.  One of her trips through hell also included having a child with cancer.  Her love and support, and the practical advice she has for me, has been invaluable.

So I am trying to see the positive things that have happened because of this really shitty thing my family is going through.  Trying to remain grateful.  Attempting to live in the moment, and be glad to be here, in this moment.

1. I've learned how to ask.
2. I'm learning how to say no.
3. My co-parenting skills with my ex-husband are on fleek.
4. My younger kids can see us go through this shitty, hard thing, and yet we still laugh.
5. The amount of love and support we are getting from so many people, even complete strangers... is humbling.

Tomorrow we go back to Lurie's Childrens Hospital, and she will have her Day 22 Chemo.  Then the Monday after that is our very important, scary important, Day 29 - the bone marrow, lumbar puncture, MRD test day.... the day when we will know how she is responding to treatment.  (Well it will actually take a few days to get the results, but you know what I mean.)  So while I am so very proud of Abigail and our family for making it through Induction (almost there gang!), I am still so scared that it's not working.

Every time I flush her line, each time she is nauseated or has a headache, and after we endured the painful day of shaving her head... I can't help but ask myself, "Is this working; is this worth it?"  Because if it's not working, then what are we doing?  I'm letting them give my baby girl poison, over and over, deadly poison that makes her sick, causes her hair to fall out, ulcerates her mouth and throat, and you know what, this better fucking work and it better fucking be worth it.

Warrior Girl

This is happening.

an update TO THE update

The doctors and I agree she has been stable for long enough now on only PO pain medications, and is taking in enough to eat (fluids are questionable) to go home.  There will be no transfer today to Lurie's in Chicago.  We get to sleep in our own beds tonight.  And I am planning on having some girls over for wine and pedicures.

But first she will get a unit of blood; her Hgb is down to 8.4, and Lurie's threshold for transfusion is different than UW.  She has an appointment on Thursday at Lurie's and will have labs that day as well.

I have spoken to her new Nurse Practitioner in Chicago and I'm very comfortable so far.

Sadly we must say goodbye to Abigail's primary nurse, Jenny.

I am oddly looking forward to starting the next chapter, with our new team and our new rockstar nurses.

And of course, updates will follow.