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.

**********

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.


**********

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.

**********

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.

Day 15; New Friends

There's a 16 year old girl here at UW who's mother I met the first day of our readmission.  She and Abigail have met and are doing that snap chat thing.  I can't say they are friends yet, but they are connecting and I think that's remarkable.  Though the two have different cancers, they have more in common than they have differences.

I'm sad we have to leave UW and go to Children's in Chicago this morning, and I hope she stays connected to this girl.  I hope she makes some other cancer-friends.  I hope I do.  

We have amazing, wonderful, friends already, but there's something about looking in the face of another mother who is numb from the reality of having a child with cancer, who has slept 10 days out of the last 14 on a vinyl "mattress," who is trying to juggle her personal life-mom life-work life, who is walking a tightrope everyday and trying not to lose balance.

Yesterday was a good day.

1. Abigail's abdominal pain is under control with oral pain medications.

2. Switching from ranitidine to pantoprazole has made all the difference in controlling her gastritis.  

3. She likes chocolate boost!

4. Her appetite is returning.

5. My favorite attending physician was on yesterday and after rounds he explained more fully the type of genetic mutation of her ALL.  He has such a way of reassuring, and it doesn't feel trite or cliche.  Also, I think he complimented my clinical skills and told me that I'm a good nurse practitioner.  The resident also told me that my intuition is good and that I need to alway listen to it.  

How are we doing?

We miss Ana.  We both miss our alone time.  Abigail misses her independence.  I miss working. Abigail is anxious about school and really wants to be able to go on the first day (next week).  I need my hair colored, my feet are begging for some attention, and personal grooming of any kind has fallen to the bottom of the list of priorities.  I don't know what it says about me that those things are on my mind.  Maybe it's a coping mechanism.  I miss taking my youngest daughter to Target and telling her "no we aren't getting that" every 5 minutes.  I miss watching my son play baseball in the back yard with the neighbor.  I miss the intimacy and closeness of my family.

But - we can't look back.  We can only look ahead.  Moving forward we will all find a new normal and adjust.  

The Fam

Last night the fam pulled together (minus Aly) .... And today Abigail's spirits are soaring.

Joseph is camera shy... I guess. But that's the back of his head, trust me.

Day 13; Pardon My Vulgarity

We were admitted back to UW Children's 2 days ago, on Friday afternoon.  Abigail had a spinal headache and nausea which we were unable to control at home.  I had made several phone calls to her doctors in the days after discharge.  But the medications and regimen changes only made her sleepy, not less nauseated, and when she was awake, her head was throbbing.  The only time she felt good last week was if she was flat on her back, sleeping, with a cool cloth over her eyes.  As you can imagine, she was not eating or drinking very much.  This contributed to her dehydration.

Once we were admitted, and fluids were started she began to become more alert.  For a while she was what I (as a nurse practitioner, not a mom) would call lethargic.  And that scared me (as a mom who is a nurse practitioner).  Medical professionals do not use the word "lethargic" flippantly.  Also when we first got here there was some question over whether or not her central line was clotted.  It was flushing with no issues, but the nurse in the outpatient setting could not get a blood return or draw any blood from either lumen.  A peripheral IV was necessary to hydrate her while we awaited testing to confirm the PICC line status.  For those who know Abigail, this was very difficult for her.  All of this needle stuff, and the blood... she's very sensitive, even phobic about it.

Luckily after we were admitted and one of the inpatient heme-onc floor nurses assessed the line, it miraculously began working just perfectly.  I was extremely worried about this.  And now I am extremely grateful.  

So our HMO has approved this hospitalization and according to our case manager, they have approved an ambulance transport (non-emergent) to Lurie's Children Hospital in Chicago.  However her doctor here at UW asked we stay until Monday and get her Day 15 chemo here (allegedly also HMO approved).  I felt good about that decision because I think it would be better to meet her new team and get acquainted PRIOR to her receiving therapy from them.  But that's just me feeling out of control.

The weekend has been a real fucking circle-jerk.  Between having a resident who is both very young, and very condescending to Abigail (his patient!), and having seen 3 different attending physicians in a matter of less than 12 hours, there were so many different providers with different plans that eventually my claws came out a little.  Finally last evening around 1800 I saw a different resident and basically tried to give the floor nurse my own orders.  FUCK THIS, I thought.  I shared my unfiltered, raw, emotions with our nurse who agreed with me nearly verbatim.  FUCK THIS.

The nurses are the only people helping me maintain my sanity.

You see we were starting to get the feeling that the doctors were thinking she was doing better and able to be discharged.  But what got us to the point at home which led to her dehydration (her abdominal pain) was not yet fixed at all.  The resident told me "Well we are giving her protonix and prevacid"  Finally I said, "I don't give a shit; it's not working.  When will it work?  And when will we reevaluate our plan of care?"   Or something like that.  If one more person tells me to give it some more time and wait and see, I may be arrested.  Also, I do not need one more fucking person telling me that she needs to eat with her prednisone.  

Yeah.  

I got that.  

I'm still paying about $1,000 a month in student loans in order to prescribe prednisone and tell my patients the same mother fucking thing about prednisone.  Moreover, anyone with a smart phone or any access to Google, will easily come up with the same information about prednisone on a simple web search.

What we were trying to get them to hear is that her stomach hurts too badly to eat, and after she eats, the pain gets even worse.  

I'm going to stop now; I can feel my blood pressure rising and now my stomach hurts.

She is on mostly IV medications, and is on clear liquids (which she hates) and her stomach pain is tolerable.  Chicken broth aggravated the pain though.  I'm frustrated beyond frustration.

The patho/genetic report is final and I have a copy.  We will likely not be staying on study, her genetics came back in a way that requires a very intense treatment plan, not the standard.  I am waiting until we get transferred to our new team before I ask the million questions I have.  I have also tried hard to stay off the internet researching this myself.  

How is Abigail doing?

I'm worried about her.  If you are reading this, my dear Abigail, please stay strong.  Please know that you are loved and cherished by so many more people than you will ever be able to grasp.  The enormity of how your life has changed feels as deep and as wide as the ocean.  And it is.  But you are not alone.  

How am I doing?

I am strong and I am holding on tightly.  I am grateful for anyone and everyone who has sent messages and kindness to our family.  I am also tired.  I'm frustrated.  And I probably need to apologize to that sweet dietitian who was only trying to offer help yesterday. 

Day 11; readmission

Actual details will follow later, but for now wanted to let my family and friends know that Abi has been readmitted to AFCH in Madison.

She's dehydrated and needs blood products. She has uncontrolled nausea, vomiting, and recurring headaches.

Our plan was to transfer care to the Lurie Children's Hospital in Chicago, but we are stabilizing her here first.

I'll be more detailed and thorough later, but that's the important stuff.

Continue your positive thoughts.


Sent from my iPhone

Day 9

Today I tried very hard to parent my other kids. I took a walk in the forest preserve with the dogs and Avery.

"I'm thirsty," Avery says.
I tell her, "Here, drink this." The last 3 oz of water in my bottle...
She says in disgust, "Ewww. Gross. No."
Then 2 min later, "I'm thirsty."

Fuck. Parenting is hard. Even harder with no emotional capacity.

1. Abigail's nausea is better.
2. She showered! Yay! Thank you Niccole for the shower seat!
3. Chris came for dinner.
4. I'm down to 2 bottles of red. If anyone is keeping track.
5. Her UW team is working with our HMO, our PCP, and the children's hospital in Chicago to transfer care ASAP.

Overall - a very good day. I have zero complaints. Thank you to every single person who's sent me a card, a text, or a virtual message.

Tomorrow Susie and Ana travel to Smith College in Northampton, MA for a tour. Life goes on. Next year we will be doing the same with Abigail. I know it.

Day 8; Midwives, Chemo Nausea, and Fuck HMOs

Today was our first full day home.

And it was horrible.

I'm not going to lie, part of me missed the hospital.

The safe, calm, clean, quiet hospital.  Not the chaos of my house.  The Children's Hospital where the nurses grind the prednisone and put it in gel caps.  Where the nurses page the doctors when I have concerns about her pain or nausea.  I miss the nurses.  I miss the safety net.  At home I'm flying with no net.  At home I am the one paging the doctors.  And at home I am the one cutting and grinding her prednisone and carefully filling gel caps.

Abigail's nausea has not been well controlled today at all.  We have tried everything from the prescriptions, over the counter, homeopathic, and non-traditional.  Nothing seemed to really help at all.  But now with our new regimen of Zofran, Benadryl, and Ativan every 6 hours she is feeling much better.  However, she fell about 45 min ago trying to get to the bathroom, and she is now considered "High Fall Risk" at my house.  I blame the meds.  Up until tonight she has been very steady on her feet.  So now I get the added excitement of monitoring her new bruise.  The other horrible side effect of the Benadryl is restless legs.  She is finally sleeping.  I think the side effects of dizziness and restless legs far outweigh puking all night long.  I love that my boss, who also happens to be one of the smartest NPs I know, has been available to me all night.  I've called her several times.

The other blow today... we will likely have to move Abigail's care outside of UW health system.  We found out this evening they are out of network and her hospital stay will be payed for, but no further care or treatments will be.  So first thing in the morning we will be calling our case manager, social worker, and the insurance to figure out what the fuck to do now.  I am still hoping that there is a chance to stay there.  But like I said, it's unlikely.  Fuck insurance.  Fuck cancer.

I had a minor breakdown today.  Fortunately I have friends who are aware of what I need (chocolate and red wine, perhaps Xanax even) and I had a nice long cry.  And I reminded myself that I am really glad to be here.

It was overall an extremely long day with her dad here (he had a sleep over with Joseph), then our oldest came with her husband for the day.  We had our home health nurse visit (more on that later, ugh).  Just long.  Tiring.  At one point Abigail was in my jet tub, I was holding a cool cloth on her head and a puke buket in another hand, and her older sister Aly was in the room supporting her as well.  I had a moment where I felt like I was on the outside looking in, and it looked like one of the many birth rooms I have attended.  I told Aly, "We are midwifing her through this."  I miss my midwifing days.  But I never want to have to relive Day 8 again.  I have a feeling Day 15 is going to be very similar though.

I'm coping with everything by making more spreadsheets and check lists.  Aly and Victor (my son in law) helped me make a week's worth of gel caps.  And I also started the day off with some well deserved girly pampering and primping.  I am ending the day in a nice, warm, fuzzy haze of red wine.

Our friend Jessica set up a Gofundme account to help us with some of the financial burden.  At first this embarrassed me, but now I understand.  People want to help and feel helpless, donating even small amounts really adds up for us, and helps other feel like they are contributing.  The link is here.  If you are unable to donate, please just consider sharing the link.  If you already have donated, please know we are graciously accepting and are unable to put into words the depth of our gratitude.

When it was time to update Chris about how she did today, I made Susie do it.  My breakdown was so profound I couldn't even text him.  My heart is sad and broken and it feels like it will never be the same.

Make Like A Fetus and Head Out

It's happening. Taking our girl home.

Day 7; Positive Image

Today was the day Abigail went to a place called Positive Image.  It is a salon at the hospital where kids can get a new haircut, shave their head, get fun hats and scarves, or even come up with a wig they would like.  Abigail and I looked yesterday at new hairstyles and she chose a new, shorter style.  I heard the specialist give her tips on how to deal more easily with the hair loss.  It was a pretty emotional morning; but I was able to hold my shit together.

This experience was further complicated by a migraine headache (her not me!).  I think it is complication of polypharmacy.  We are weaning off the morphine and using more Tylenol and PRN pain medications.  By the time she was finished with the cut she could not tolerate a style or to look at any hats or scarves.  

I will wait for Abigail to feel like showing off her new hair before I post any pictures.  I'll describe it as: at the shoulder and very fresh looking.  I hope when she wakes up and has a chance to really style it, she will feel good about this.  But still, it's shitty.  It's hard.  There is nothing that will make this part easy for her.  And having your mom sob while your hair is being cut off certainly does not make it any easier or less shitty.  So I held it together, and later tonight in the shower I'll have my usual cry.

She had her chemo (VCR and DAUN) and now she is just resting until she goes down for sedation and the LP.  She will get her IT chemo this afternoon as well.  Something about knowing chemo is going into my child's cerebrospinal fluid makes me feel good.  It's so strange to me...  I feel GOOD there are chemicals being put in my kid's body.  But - yeah - let's give everything we can to fight this.  

The other thing I don't feel comfortable with is the Lupron injection today.  It's basically inducing menopause with a chemical.  I'm worried about this a lot and I cannot rationalize why.  I am worried about her future fertility, and that's all I am willing to say right now.  If I write about it, it makes it more real, and I'm not ready for that to be a reality yet.  I know the Lupron is meant to help preserve her ovarian function, and I know that she needs this, but I still feel so sad about it.

She is still sleeping.  It's been about 90 minutes now and I'm so grateful she can sleep off the migraine.  

Our nurse practitioner is coming by very soon to do some more teaching for discharge.  I have a lot of questions that I have been waiting to ask her.  I love that this hospital incorporates NPs in the medical team.  The hematologists and oncologists are extremely important, but the support and education we get from the NP is invaluable.  

I have nothing but good things to say about UW Children's Hospital.  They've really figured this shit out.  It feels like a true partnership.

To her aunt, cousins, and friends who have visited:  she told me yesterday that your visits really raised her spirit yesterday.  Thank you so much.  It wore her out, but I'm telling you, I could see her heart swell.  You made a difference.  

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.