Day 6; Because I Like Checklists And Spreadsheets

Not much to update because today is Sunday and the unit is very quiet.  The attending doctor came by and I let Abigail have a private discussion with her.  Whenever a medical provider asks her if she has any questions she looks at me and says, "Do I?"  So I said to her today that they want to know if SHE has any questions and that I would give her privacy to talk to her doctor alone.

I also "encouraged" (read: made) her take a shower unassisted last night, undress and redress herself, brush her teeth, and now that she is off IV fluids, she is taking herself to the bathroom.  This all seems like pretty reasonable stuff, right, but she was so weak from almost a full week of essentially being bed-bound, that yesterday, even a walk down to the cafeteria, was so taxing we had to take a wheelchair back to the unit.  Today we put a special mask on her, and we walked outside even.  I am proud of her.  Her nurse is being very pushy (as she should be) about her getting out of bed, walking, and drinking enough liquids.  If she does not drink 2.5 L today she might have to go home on fluids.  I cannot tell you now much I do NOT want this for her.  So I made a chart - LOL - some of my friends understand my obsession with spreadsheets and charts - for her to see her fluid progress.  Some people overeat or drink too much when they are stressed out, but I make spreadsheets.

Here is the schedule for induction (the first phase) and the names of the drugs she is to receive.  

Oh and the study is AALL1131.

Day -1: Intrathecal Cytarabine (IT ARAC).  She got this Monday at the time of her first lumbar puncture (LP).  It is chemo they put in her spinal fluid.  That is was intrathecal means. 

Day 1: Vincristine (VCR), Daunorubicin (DAUN), Prednisone (start of a 28 day course, oral)

Day 4: Pegaspargase (PEG-ASP)

Day 8: IT Methotrexate, VCR, DAUN (she will have this tomorrow, on day 7, to facilitate easier discharge)

Day 15: VCR, DAUN

Day 22: VCR, DAUN

Day 29: IT Methotrexate; also bone marrow studies.  Risk stratification and treatment randomization occur here as well.

On Day 36 when her blood count parameters are met, and after treatment randomization is complete (if we chose to stay "on study") she will being the next course of treatment called Consolidation.

Common Side Effects:

Vincristine has side effects of: constipation, hair loss, jaw pain, and weakness.

Daunorubicin has side effects of hair loss, vomiting, and pink or red colored urine, tears, sweat.

Prednisone has major side effects of mood swings, acne, increased appetite, weight gain, stomach pain, and loss of bone density. 

Pegasparagase has a side effect of allergic reaction

Methotrexate IT has side effects of GI upset, vomiting, nausea, headache.

And enough of that medical jargon....

Here are some pics of this lovely establishment I now feel like is my second home.  Yes, already.

Day 5; I'm Glad To Be Here

It's day 5 because it's the 5th day of induction (the first round of treatment chemo).  However it has actually been 6 days since we heard the words, "Your daughter has leukemia."

When I actually heard her doctor say those words I literally could not hear anything else.  I heard "Your daughter has leukemia, we know this for a fact, we do not know what kind, but there are very effective treatments for this."  Then that's it.

I heard Chris choking on a sob.
I saw Susie's face get red.
I felt my eyes sting.

But I did not really hear anything else.  I don't even know if I asked any questions (like I usually do).

The other thing I remember is this medical student yawning.  I wanted to stand up, slap them in the face, and leave.

I refrained.  But I made a mental note to NEVER be so inconsiderate.

I noticed the lack of eye contact from the medical students.  I felt sorry for them.

Anyway that was Day -1.  I am glad we never ever have to go back to that day.  I am grateful we are on Day 5.  I am glad to be here.

I feel that is worth repeating.

I am glad to be here.

I am glad to be surrounded by such brilliant physicians who have such a talent for blending the science and art of medicine.  I am glad to be here with nurses who are not only compassionate and caring, but also competent.  I am glad that my daughter was diagnosed and started on treatment in less than 24 hours.  I am grateful I work with some amazing women and men; and that I am able to be  here with my daughter - and I know my own patients are well cared for.

So since today is Saturday the unit is quiet and there is not much to update on.
Some changes to her plan:

1. On Monday, Day 7, she will get her Day 8 chemo and LP.  A day early so that we may get to go home on Tuesday earlier.  However the rest of the treatments for the month will remain on Tuesdays.

2. Her leg, hip, back, thoracic pain is all gone.  This is reassuring that the chemo is working and her leukemic cells are reducing!

3. Her jaw and mouth are hurting.  This is a known side effect of one of her chemo drugs.  It's pretty severe.  She is using her pain pills (scheduled and PRN), ice packs, and magic mouthwash to help.

4. Her IV fluids were stopped but she was supposed to drink 2.5 L of fluid today, and because her mouth hurts, I fear she has not and will not get to goal.  I hate that she is hooked up to an IV, and I want her to start to feel more "normal" again.  But without the fluids, I also worry about her kidneys.  It's the mom vs. nurse battle, always.

5. She hates taking pills.  HATES it.  She will need daily prednisone (helps the chemo work), ranitidine (protects her stomach from the prednisone), senekot (one of her chemo meds causes constipation).  On weekends we will add antibiotics to prevent lung infections.  If anyone has suggestions, or things I can say to her to help her take her pills, I am all ears.  Please offer advice.

6. Her doctor came over with more consents to sign for the clinical study.  She told me that the cytogenics are back and while she could not remember the specific translocation of her B-Cell ALL, she did know that is was nothing that would change her treatment plan.  Nothing "bad"... but isn't that fucked up?  Isn't it already bad?

7. Her labs for anyone who cares:

WBC 0.6
Hgb 12.7 (YAY!!!)
Hct 36
Platelet 11 (she will soon get another transfusion, the cut off is 10)
ANC - this is not on the lab report they gave me, but she is still neutropenic.  She will be considered neutropenic until her ANC comes up to 500.  She is in the low 100s.

Her electrolytes and kidney function are all good, her uric acid remains low.  Everything looks very good.

Today was another Pet Pal day and she went to see the dogs.  She only lasted about 5 mins before she asked me to go back to her room due to lightheadedness.  Our goal was 4 short walks in the hall.  We have only done 2.  She sat up in the chair for a couple hours though.  I ordered her a pizza from Domino's and she was in HEAVEN, rolling her eyes back in her head with enjoyment of "outside world food."  We discussed what she wants me to cook when we get home.  She had a friend visit and that was helpful for her spirits.  I had a friend visit and that was helpful for my spirits.  (I also got a much needed toe nail polish.)

A close friend recently told me to try to think about how this is an opportunity to make lifetime memories with my kids.  I am grateful for that.  I am glad to be here; glad that my kids and I can experience this.  I know we will look back and see this was another drop of glue holding us together.

Family Game Night

Last night Chris brought Joseph and Avery up to see Abigail. It was a lot for her, but good for her younger siblings to see her and know she's okay.

While Chris got some needed alone time with her, I played Life with them. It was fun, and a little taste of our normal life. We play games, cards, etc. often. I think it was a nice way to show her younger siblings that some things are the same while other things are different.

A more medical based update will follow later today.

My heart feels softer today and yet also stronger.

XO

Worst Sleepover Ever

Here is a picture of Abigail before our big night last night.  Big night of watching the DNC with her mom in the family room at Children's Hospital in Madison.  Totally appropriate.  Just like her Netflix and Chill shirt, and those cosmic leggings with cat and dog heads.  You can't tell, but behind that mask she is smiling and we did in fact have a lot of giggles.  #DemsInPhilly

Day 4

We know it is B-Cell ALL but we do not know the sub type and will not know until the cytogenic testing is back in a few weeks.  However, because of Abigail's age she is already considered 'very high risk' and is already receiving the most aggressive treatment plan.  Once she finishes the induction period (in about 4 weeks) and has another bone marrow test we will know what her MRD (minimal residual disease) is and what her responder status is.  Until then, all we can go by is her daily lab work, which at this points, according to her doctors looks promising.  

WBC 0.9

Hgb 9.6

Hct 27

Platelet 13

ANC 140

Her electrolytes are normal and her kidney function is great still, and her uric acid level is very low, so now she can stop the allopurinol (a drug used to protect against tumor lysis syndrome).

She is off all IV medications and is taking everything by mouth.  Her pelvis and leg pain are better (resolved even), her thoracic pain is better, and the headache is gone (so far).  She has some jaw pain which we are not sure if it is due to her wisdom teeth coming in, which we just found out about a week prior to her diagnosis (great timing), or if it is already a side effect of the chemo.  Ice packs have helped.  She has an increased appetite and has been taking in enough to drink.  So she may even get to have her IV fluids discontinued soon.  She is now able to leave the unit and go for walks even outside as long as she wears the right protective mask.

Right now, as I type, I'm sitting next to her while she gets her first dose of Pegaspargase (Peg we call it).  It has a high rate of anaphylactic reactions, so her nurse is actually sitting at bedside quite literally monitoring her.  I have to say that the nurses on staff at this hospital, in this unit, are some of the most dedicated, caring, loving, smartest nurses I have ever encountered.  I have an incredible new respect for this extraordinary profession I am so proud to say that I am a part of.  

Abigail got up and walked to the family room and watched the historic acceptance speech by Hillary last night.  We all sat up with blankets and pillows, and watched the DNC.  It is now confirmed, this is the worst sleepover ever (for a 15 year old). 

How Abigail is doing:

Someday soon, I hope she will write on this blog and tell you herself.  Until then I am respectfully trying to articulate how I think she is feeling.  She is anxious and her PRN lorazepam is working well.  She is sad.  She is frustrated that she gets tired so easy and says things to me like "I am trying so hard."  She would benefit from some praise and encouragement.  If you wonder what you can say to her, tell her how strong she is and how proud you are of her.  Because she is strong, and we are very proud of her.

How is Mom/Dad doing:

I am less tired and less scared.  Chris is DYING to get back up here.  I've given him the important task of getting cup of noodle and a bottle of hot sauce.  Our girl has some strange and random tastes.  He will come this afternoon or evening and bring the Littles up here.  I am gong to play board games and card games with them when they arrive.  

Later today I will post some pictures for those of you who are not on Instagram. 

Bittersweet

One of today's most difficult moments... so far... because you know it's only 1:45 pm... is seeing the families and children return to say "Hi" and all the staff cheering and welcoming them.

It's hard because I want to be them.

I want to be through with this shit.  I want my daughter to be healthy and well.  I want her to be dressed up and feeling her best.  I want her to have color in her cheeks and to not be wearing a mask.

I want to be the mom who does not have bags under her eyes and is wearing the same bra for four days.

Anyway, maybe I'm being selfish.

We just found out that Abigail will get another new medication to suppress her period because if she were to have her cycle it would be dangerous.  Her platelets are back down to 15.  Her ANC is 170.  She has no immune system.

We went for a walk on the unit today and I heard a man coughing and hacking.  I literally wanted to commit murder right then and there.  I wanted to punch him in the throat and kick him in the balls.  And I wanted to scoop Abigail up and run with her in my arms back to her room and slam the door.

Instead I glared at him, and escorted her to her room where I squirted hand sanitizer all over both of us.

Days 1, 2, 3

While Abigail was at her dad's house for her week with him she began having uncontrollable leg pain and low back pain.  She could not sleep because the pain was so bad.  It was not responding to anything she tried:  ibuprofen, tylenol, warm baths, ice, etc.  By Sunday Chris and I decided to take her to the ED.

Sunday night was the longest night of our lives.  The initial blood work showed pancytopenia with extremely low platelets (19,000) and the most concerning finding of more than 20% blasts.  We were pretty much immediately sent to UW Madison Children's Hospital (American Family and Children's Hospital or AFCH).  Six hours after admission to AFCH and 12 hours after our ED visit to SwedishAmerican we were told that she has leukemia and the only question now is which type.  By 11 am we knew it was B-Cell Acute Lymphocytic Leukemia (B-Cell ALL).  Abigail's platelets dropped even lower to 14,000 and she received a transfusion.  On Monday afternoon she was scheduled for a spinal tap, bone marrow biopsy, and PICC line insertion.  But needed her platelets to be at least 50.

Her bone marrow sample was "dry" meaning it was difficult to obtain enough marrow, the leukemic cells make it more sticky and she was stuck twice in different spots.

Her spinal tap was contaminated with peripheral blood, so we do not know for sure if the cells seen were truly in her CSF, or just a contaminant.  Her doctor tells us that regardless if the CSF is + or -, all patients get Intrathecal Chemo, and that they will retest her CSF next week.

Monday she also had some MRIs.

Tuesday July 25, 2016 was considered "Day 1" and she got her first chemo treatments.  Her leg and hip pains are improving but on Wednesday she started having more thoracic pain.  The thoracic pain is also accompanied by a headache.  While all the specialists have been running a battery of tests and imaging, her other mom and I both feel this might be muscular in nature.  We asked her dad to bring her pillow from her bed.

Last night, Wednesday night, was pretty bad for pain.  She has had to have morphine boluses.  It was my first night alone in the hospital with her and I've been scared for her.

This morning, Thursday July 28, 2016 ... Day 3 ... and we have a new plan for today.  I am quickly learning the the "plan" changes everyday, and sometimes twice a day.  The plan for Day 3:

1. Switching from IV antibiotics to PO (yay!).
2. Switching from IV morphine to PO extended release (yay! but we are keeping the PCA as well for breakthrough).
3. Starting BID lorazepam for muscle spasms.
4. PT/OT this morning.
5. NP teaching this afternoon.
6. The worse update to our plan... Abigail will not be going home on Friday as originally planned.  We will be staying over the weekend.

How is Abigail doing?
She is scared, overwhelmed, anxious.  She is getting crabby and snapping at me.  Then she apologizes.  The prednisone has started to increase her appetite and the mood swings are starting.  She is tearful at times but very giggly after.  She misses her friends but is overwhelmed at the idea of entertaining them.  She has certain staff here, doctors, who's only job is to talk to her about her emotions.  And she is talking.

How is Mom/Dad doing?
We feel the same.  Except for the appetite part.  We feel helpless and scared.

This morning I woke up staring at a balloon in my face that said "Get Well Soon" and I  instantly felt pissed off.  Fuck you balloon.  There is no get well and there is no soon.