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.