Virtual School

The decision was made to move ahead starting ATG without the PICC line and that meant benadryl as preparation.  Benadryl meant Annie fell asleep.  After an hour she woke up and was ready to "go to school."  When she was in home-isolation for four months in first grade her school helped her patch in to class using Skype and a laptop.  Since then there have been a lot of technological advances and now she is able to patch in using an iTouch at school and an iPad at the hospital.  She was ready in time to attend a special event at school, the fifth grade mass.  Annie was able to watch the entire mass and she said her responses and sang along to the songs from her room.  It made her very happy to see her classmates and stay connected.  After mass she "attended" Spanish class.  In the afternoon she was unable to patch in as she went back to sleep.

When I arrived after lunch to begin my 24-hour shift they had begun the ATG and she was still asleep.  I was informed we needed someone with her at all times to check for shortness of breath, chills or rashes.  Sure enough not twenty minutes after arriving she went into chills with heavy shaking that woke her from her sleep.  Within minutes there were six medical professionals in the room.  It wasn't one of life's better moments but it was amazing to watch highly trained professionals work in a stressful situation.  The ATG was stopped and she was given prednisone.  The shaking stopped after about ten minutes.  Later the ATG was resumed and has been going smoothly since with a couple increases in rate.  Even so it will continue well into the night and then she'll get a transfusion of red blood cells.  Then in the morning back to another round of ATG.  In between there are doses of tylenol, benadryl, prednisone and cyclosporine.

She is scheduled to have a PICC line inserted under general anesthesia on Friday.  Will report on our nocturnal intrigues in the morning.

The city that doesn't sleep

Living at a hospital is like living in a glass cube in the middle of Times Square.  Lights are on all night, people come in and out of the room all night and things happen all night.  Annie, ever curious, was pretty wired well past her 8:30 bed time.  Then at 11 p.m. they decided to give her the platelet transfusion.  Then by midnight she started having some mild reactions to the transfusion (itchy skin, flushed skin, abdominal pain).  Then by 12:01 a.m. Tom needed a caffeine transfusion :)  They both managed to fall asleep in spite of it all by 1:15 a.m.  

This morning they attempted to insert her PICC line but after the third attempt gave up.  This was not the most pleasant of experiences so Annie is now chilling out with a TV show.  She doesn't watch TV normally so this is a happy outcome in her book.  Everyone is regrouping and figuring out the next step.  It is possible to do all the treatments through an IV line as we did the last time she had this procedure four years ago.

List of procedures

The thrill of a private room at The Candy Land Hotel eventually must be tempered by the fact that we are there for medical treatment so here's the line-up.  Tonight, as they will every night, they will draw blood to check her blood counts and see if she needs a transfusion and how her blood counts are responding to treatment.  Next she will receive a platelet transfusion.  At some point in all of this a specialized nurse will arrive and insert a PICC line (picture above, description link below).

http://picclinenursing.com/picc_why.html

She will then begin being administered prednisone which the doctor informed her will make her very hungry and (drum roll please) moody (can't wait...nothing better than being confined to a room with a moody, hungry person).  Oh but it does get better because she isn't supposed to eat anything salty or sugary.  Now imagine being locked in a room with a hungry, moody person who isn't allowed to eat anything they find yummy.

Next she'll begin an infusion of horse ATG taken four to eight hours a day (depending on her reaction) for four days.  Then she leaps forth from the bed, does a pirouette and is magically cured :)
Will report in tomorrow.

The Presidential Suite

We got some amazing advice the first time Annie was hospitalized about how she'd experience the stay based on how we "spun it."  This proved to be very true and very helpful.  By staying upbeat and open about it we kept embarrassment and fear out of the equation for her. It also helps us now because she doesn't have any bad memories from her last hospitalizations.  She was worried if the new hospital would have as nice a room as the last one and if she'd have a private room.  Thus we are happy to report that she is in the new wing with a private room and a private bathroom (there are some advantages to diseases of the immune system).  Room 4106.  Her nurse today is Chelsea and her assistant is Candy.  Maybe we'll spin this round as a stay at the "Candy Land" hotel.  Appointment with doctor shortly.

And they're off...

Tom just got the call, they are ready for Annie.  He's picking her up at school from lunch and he'll cover the first 24-hour hospital shift with her.  I was reading "The Emotional Cycle of Deployment" that they use to coach military families through the stages of deployment.  We've been in "pre-deployment" and now we transition to "deployment" next comes "sustainment."  Being veterans of this "war" we kind of know what to expect but it still feels different when the moment comes.  Will update later this evening.

Stay-cation Graph

We're still at home.

As you can imagine, sitting at home waiting for the phone to ring is not how Tom wanted to spend two of his vacation days.  It's bad enough to use them up in the hospital with your child but it's "super icky" to spend them for no purpose.  This is not a new phenomenon for us and, being a math teacher, I decided I'd graph it to get a better handle on what we experience.  On the left is an average day - there will be a couple "great" moments, a lot of "ok" and a little "icky."  It seems fair and balanced - I can live with it.

When something "icky" enters the picture and decides to stay (like Annie's illness) it's like the entire day drops down to "icky" and goes up and down from there (thus the picture on the right). Until now I kept being surprised when bad things happened on top of bad things already happening.  I'd think that the quota for "icky" things had already been filled for the day and that it wasn't fair or balanced to add "icky" on top of "icky."  Now that I've graphed it, I get it.  Just because an "icky" thing has moved in doesn't mean you get exempted from the daily ups and downs on top of it.

So we wait more.  The insurance was finally, officially, approved at 5ish and now we start again tomorrow waiting for a bed to open up.  Until then....

Foul

It amazes me how many times in Annie's medical saga we have come up as the exception and not in a good way.  It is certainly patience building.  So it turns out someone in the financial office told the medical team that the insurance had been approved but it hadn't been as they were waiting for some paperwork.  The medical team, ready for our arrival, hit the roof and apologized that "this has never happened before" but it's too late to resolve now so we're on hold until Monday.  Off to search for a silver lining buried somewhere in this!  Will report back Monday.

Waiting, waiting, waiting...

So the protocol is to call first thing in the morning to find when a bed is ready.  We were told a bed was not ready and that we'd be called when one was.  After an entire day of waiting for the call it came in just after 4 p.m.

Now Tom's protocol (being unfortunately experienced in this area) is to call first thing in the morning and make sure insurance is ready.  And...they were not.  This is no small matter as we have single bills (and there were drawers full) from her transplant for over $250,000 and, after insurance, we only owed $64.00.   So that entailed an entire day of phone calls.  They are still working on that outcome so we're still waiting....

Ready for the Rabbit Hole

Things are picking up speed and Annie is scheduled to begin her hospitalization this Friday.  She has iron-overload from her transfusions so she will also need an MRI but that will occur after her IST (immunosuppressive therapy) with ATG.

 For more details about IST see:

http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/Aplastic_Anemia/Immunosuppressive_Therapy.aspx

If things go well she'll be discharged after a week and work towards getting strong enough to go back to school.  Learning if the procedure helped will take months.

So, to recap, we are asked to call the patient placement center Friday morning and they will let us know when a bed is available.  Then the journey down the rabbit hole begins and my next update will be from the hospital.

Rip Van Winkle

Yesterday's blood draw showed Annie's platelets and ANC dropped back to the prior week's levels and her hemoglobin had a little boost from her transfusion.  Today we had her bi-monthly doctor's appointment.

Tom and I had decided that we wanted to try a second round of ATG (anti-thymocyte globulin) for Annie instead of pursing another BMT (bone marrow transplant) without a perfect match.  Our doctor was moving towards having us consult with a BMT group for treatment options.  We have, however, already followed that path and knew where it ended ... with a recommendation to have a transplant without a perfect match.  The upside would be a possible cure but the downside is a 30-35% chance of failure, an extraordinarily traumatic procedure and GVHD (graph vs host disease).  GVHD means living with a chronic condition often requiring a lifetime on immunosuppressive medication ... hmmm that sounds exactly like where we are now so why go through all the trauma for better blood counts on paper but a similar daily experience?  Plus once we wipe out her immune system and replace it with someone else's, it's gone, unavailable to benefit from future scientific progress.

Another consideration was that there were three strikes against Annie's first round of ATG [an infusion of horse or rabbit-derived antibodies to fight against a person's T cells (a part of the white blood cells that attack foreign bodies or, in autoimmune cases, the person)].  First, Annie had the rabbit-derived antibodies and, since her treatment, a paper was published showing the horse-derived antibodies have a better success rate.  Second, her immunosuppressive levels were improperly measured after her treatment resulting in a non-theraputic dosage as well as four months of home isolation instead of the possibly no home isolation with a proper response and management.  Finally, we, unknowingly, returned her to a home contaminated with a pesticide that all data points to being the cause of the condition in the first place.

Thus, during our meeting, after the doctor recommended meeting with a BMT team, I informed him of our thoughts and asked him to refute our argument.  He said our argument was sound, there was no additional information that changed any of our points, that he was comfortable with our decision and that she could start ATG next week.

WHOA NELLY!

Now there's every reason not to delay treatment.  Annie is at risk for several life-threatening things to happening to her at any time, being on immunosuppressive medicine is a twice-daily toxic cocktail and staying alive by transfusions isn't a great proposition for a ten-year-old.  We're ready, just maybe not Monday morning ready!

Thus we've asked for a week to prepare and, of course, details must be arranged on the hospital's end.  We've been through this once so we know a bit about what we're in for but I'll save that for a future entry when I learn of this hospital's specifics.

Periodically I imagine what it would be like to be Rip Van Winkle and just fall asleep, let some time pass, and see how things turned out.  Of course then I'd miss all the "good things" that come from facing fear ... but it still sounds like a nice option when considering the weeks ahead.

I'll post as we get information next week.  By the way, if you don't want to have to check for entries, you can select "join this site" to the right and you'll get an email when a new entry is posted.

Thanks, as always!