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.