If not one thing, another

As part of the roller coaster ride it seems some blood line is always causing a problem, but it rotates through as to which one.  Reds and whites and platelets - oh my!

Earlier in the week it was the ANC (part of the white count) that dropped and meant we sprang into home isolation mode.  This last blood test the ANC went back up to 540 (cleared for school) but the hemoglobin (reds) drifted down to 8.8 and the platelets are in the lowest, <5000, category.  Unfortunately this has led to two days of prolonged bloody noses (over 90 minutes each).  Today's required her coming home from school.  The medical team decided to transfuse so that is where Annie is at now.  Next blood test Monday.

Round and round and round we go where we stop nobody knows!

Roller coaster ride

One thing I dislike about keeping people informed of Annie's status is having to include others in this sicko roller coaster ride from which we can't seem to escape.  It seems we are barely able to catch our breath from one plunge before we shoot to a crest and then plummet again.  We try sooooo hard to figure out how not to get swept up in the vagrancy of it all but we've yet to unlock the secret to accomplishing that.

So, if you haven't guessed, we got the blood counts late today and they were down.  Not that this isn't exactly what is expected.  It will take months of volatile blood counts before we have a sense if things are working as we'd hoped.  It's just that her ANC took a nose dive from 2000 to 240 in four days. Now there is the possibility of lab error and white counts bounce around a lot but it still sets off a whole new set of logistics.  We have to switch to home isolation mode and virtual school.

Her other counts, for those who track this, are hmg 8.8 and platelets 8,000.  Her medical team wants to avoid transfusing so we'll hope for the best and see how her body responds.  The next blood test is Thursday and I'll update when we get those results - which sometimes takes a day.

I've had a number of people have trouble setting up an account so they get an email when there is a new posting.  If you would like me to set this up for you I can do it on my side.  Just email me or leave a comment and I will do so.  This way there will be no need to check for updates, they will automatically be sent to you.

Below the surface

Side effects of prednisone include moodiness and puffiness both of which we all got to enjoy this weekend.  However prednisone also hides the "serum sickness" lurking just below the surface.  So as we attempted to ease off the prednisone Annie's personal Loch Ness monster broke through the surface in the form of a hives-like looking rash on her face and body and some discomfort.  She also had the pleasure of blood blisters in her mouth.  By this morning things were getting worse.  She was always going to have to go to school late as her blood draw was scheduled for this morning but with the rash she just wanted to hide at home.  However by mid-morning the rash had faded and, since she was otherwise feeling well, we encouraged her to go to school.  

All day no matter what I was doing I worried in the background.  Then at 10:48 she called from school.  The rash was back.  Her classmates were worried and pointed it out to her.  The doctor said as long as she didn't have a fever she didn't need to go to the hospital and she felt fine so I encouraged her to stay.  All day I pictured her with a raw, red rash across her body and face.  I imagined how challenging it must have been to have people staring at her all day.  I drove myself crazy.  

I play this game to help me cope where I say, "I'm so glad...(something bad that happened)."  So I said, "I'm so glad she is experiencing what it's like to be disfigured, it will give her greater empathy for others with similar challenges, she'll really learn to value the good things hidden beneath the surface."  Crazy, right, but it helps.  Any how the moment came when I picked her up at school.  Anxiously I waited and then she bound into the room with a big smile on her face and her skin as smooth as porcelain.  For the rest of the day I've had a big smile on my face.

Ignorance is bliss and her blood counts won't be available until tomorrow.  So for tonight, seeing is deceiving, and I can pretend, for a little while, that all is good on the surface and below.

Absolute Neutrophil Count

First I must say I am shocked that someone would make a painting of an absolute neutrophil count chart but there this was on the internet.  I can, however, understand that someone would find beauty in their neutrophil count making a linear ascent to over 1000.  It is Annie's ANC that determines if she may leave the house or not.  If she may be in places where we don't know the health status of every person.  It is what kept her out of school for four months the last time she had immunosuppressive therapy.  So we were happy to learn from today's blood count that her ANC had gone from 540 to over 2000.  Anything over 500 means she can go to school.  Below that it's shut in.  This is quite a jump since Tuesday however she had a tickle in her throat this morning and the body ups production in response.  Whatever the case her doctor seemed pleased that her bone marrow got busy doing anything.  

Here hemoglobin and platelets stayed pretty steady at 9.4 and 22,000 respectively.  Since she has been transfused for both within the last week there is no way to know yet if any of that is due to her ability to produce and retain cells.

Most of the doctor's appointment revolved around tweaking medication doses to get her CSA (level of immunosuppressive medicine) up to the desired range while starting to wean her off the prednisone and blood pressure medications slowly so as not to trigger the serum sickness they are meant to prevent.  Since no red flags were raised during the meeting we were relieved.  Thus we'll try and keep her healthy and out of trouble, while enjoying as much of her normal routine as possible, while we wait and see if her body can produce adequate numbers of blood cells without destroying them.  This process doesn't happen over night but instead over months.  Her twice weekly blood tests will give us a glimpse into her progress.  Thus I will update Monday evening once we know her lab results from that day.  We are, as always, grateful for the support that has gotten us this far!

It takes a global village

Seems we have made it over the blood pressure hurdle and Annie's headache is staying in the "1" range.  Tomorrow she'll have a blood draw in the morning and the first appointment with her hematologist since her hospitalization.  It will be interesting to hear how he thinks things are going.

Maybe it's the teacher in me, but I've always hoped sharing Annie's story does more than keep interested parties informed.  I hope some piece of information or lesson learned can help someone else - that some good can come from this situation.  But it also helps keep us going.  Knowing people are rooting for our success helps us forge on when we feel like throwing in the towel.  

Blogs today track from which countries people read your blog.  It has been fun to figure out who would have a connection to Annie from far-flung places.  She has people keeping tabs on her in Germany, the UK, India, Russia and Japan.  The only one we couldn't figure out was Japan.  Today we learned she has friends in the US Navy stationed in Japan.

I cannot help but say a special thanks and let you know how much your work is appreciated.  You are all the outer ring of safety that lets each and every member of our team focus on their job without distraction. We are all connected, and our successes are also yours because there wouldn't be one without the other.  So in the middle of the night neither the sailor staring at an empty sea nor the mother staring at a child in a hospital bed is really alone.  God bless.

Don't cry for me Pasadena

What a roller coaster ride.  Today was "Mix it Up" day at Annie's school and she has been gunning for this moment, "I am NOT missing Mix it Up Day... I will NOT be in the hospital on Mix it Up Day ...."  I've been hearing about this for weeks.  Thus she hauled herself out of bed, dressed all mixed up and marched off to school.  Luckily her blood pressure was on the same page.  In fact, after making the adjustments mentioned yesterday, things have been under control in that department.  

I have been drilling the virtues of pacing herself and allowing me to pick her up at lunch so she could ease back into things.  Seems she has embraced that idea....  After coming home and settling on the couch with a garden view, she proceeded to order her lunch. "Salmon, please." (Wild Alaskan en papier, coming right up.)  "Oh, and garlic bread." (Let me just run out and get some fresh rosemary from the garden.)  "And steamed broccoli with lemon."  (Off to fetch a lemon from the neighbor's tree.)  "Could you please feed me while I finish my math packet?"  (Certainly your highness.)  "A tissue, please." (Right on it.)  

I'm thinking it's time for her to consider school again.  "No Mom, I think you are right, I should ease back in."  "May I finish watching the Princess Diaries video?"  I'm thinking we patch in to school tomorrow then.  "Well, okay for history class." (Great!)  "I think we're watching School House Rock."

Of course I couldn't be happier that she's feeling better and that we're not in the ER.... "Mom could you bring me some dark chocolate please?"  Last time we went through this she was in home isolation for four months. "You are taking me to choir right?"  I mean she's been through a lot.  "Would you bring me the computer."  (I believe it's your bone marrow and not your legs that are the problem...yes dear!)

I always wanted clever kids until I got them :)

Still in the woods

We finally got Annie home from the ER and in bed by 11 p.m.  However the morning started with a pain level 1 headache and blood pressure of 129/83 (she usually runs really low say 95/50).  She was scheduled for a blood draw this morning and things seemed to settle down, that is until I came home for my shift at 10:00 a.m. (I'm really not liking this correlation).  By 11 the headache pain level kept rising and her blood pressure went up to 153/88.  When I called the hospital her medical team said, "come in as fast as you can without running red lights."  Uh ok, and of course there was a traffic break on the freeway.  Well five hours, one platelet transfusion, one CT scan, one EKG, multiple blood pressure and temperature takings, one meal, two snacks, multiple doctor conversations and two Harry Potter disks later she came home.  All tests were normal, Annie was tired, Tom and I were fried.  It did, however result in adding one more pill to her day bringing the grand total up to 19 she swallows daily.  Gulp.  So the plan to avoid more blood pressure crises is to reduce prednisone doses from 3x to 2x per day and add one blood pressure lowering pill at night.  May the force be with us!

Pain by numbers

We almost got to call it a good day.  At least it was a good night.  Annie needs to be given prednisone every eight hours and that works out to a does at 10:30-11:00 at night, with food.  We woke her for that then all slept until the morning - yeah!  

Her discharge orders allowed her to resume school but we wanted to take it slowly.  However Annie's love for her school and her friends is the very thing that keeps her going.  Thus by 9:30 she had cleared every hurdle we gave her and we could think of no reason to keep her home any longer.  She didn't call during the day and came home and started homework.  Then came 5:30 p.m.  The acute head pain from Saturday resumed with a vengeance.  I'm beginning to think there is a body cycle at work here as I know temperatures spike at this time of day (so maybe it wasn't the sweet potato fries...).  Any how we have a professional grade blood pressure cuff and that registered 160/100 and then 152/96.  We called the hospital and they said to get her immediately to the local ER.

Three hours and forty five minutes later they are still there.  ER's are never fast or straight forward.  It's even harder when you are trying to coordinate with another hospital and the attending doctor doesn't have first hand knowledge of your case.  It's even harder when your ER doctor has never heard of ATG (aplastic anemia is very rare) and starts going down the wrong path but you are just a parent.  It's even harder when everyone is tired and hungry and your child is giving her pain an 8 and her face and sounds go with a 10. After many phone calls, helpful friends, assertiveness and the grace of God we got the necessary medicine and avoided the unnecessary procedures.  The blood pressure began to go down and they are good to come home on the ER end but need to reach the doctor on the other end.  Bureaucracy.

I'm working on making sure things go more smoothly should this happen again.  Hopefully we can have a prescription for the blood pressure lowering medicine at home.

Katherine is in her school production of Into the Woods but I'm hoping that tomorrow I'll be able to report that we're out of the woods!

Annie unplugged

With the ATG finished, her blood-pressure stabilized and her blood counts, for the moment, better than they've been in five years (this is due in large part to the transfusions), Annie has been discharged to recuperate (and see how things take) at home.

So we say good-bye to the swank room and the kindly, talented staff.  I had to be sure to show a picture of the floor to ceiling white board across from Annie's bed.  My students can well imagine how happy it made me to see this.  I'm now completely rethinking my home decor.

Onward to the next phase.  Since the PICC line didn't work out that still hangs in the air.  Annie prefers getting poked hundreds of times to having a line installed so we are considering putting off the procedure to see if it's really necessary.  It was recommended for the ATG and to make blood draws and transfusions easier but with the ATG behind us we'll let Annie see how she feels about the frequency of pokes over the next week.

I've been mulling over the blood pressure spike and am wondering if it was the cafeteria food that precipitated the event.  Remember that she was going to get hungry but wasn't supposed to have salty or sugary food?  By midday Saturday she was really hankering for something "yummy."  I ventured down to the hospital cafeteria to offer something new and came back with a plate of roasted potatoes, roasted vegetables, beans, rice and sweet potato fries.  I avoided the chips and desserts she really would have liked so it felt like I was on the healthy side of things....

Normally she gets 95% of what she eats made at home.  Since we've been suppressing her immune system we depend on the healthiest, most nutritious food possible to help protect her since her body is handicapped in that regard.  Thus we also can control the amount of sodium in her diet and high blood pressure has never been a problem.  I've certainly read that the food served out is loaded with sodium, even when it doesn't seem to be.  So maybe it was that afternoon chow-down that caused the spike.  We'll never know for sure but it's back to kale chips for Annie :)

No news is good news and hopefully nothing will ding in our house tonight so I'll plan to update at the end of tomorrow.  Thanks again for supporting us over the first big hurdle!

Crossed the finish line

Well she finished out her ATG yesterday at 10:48 p.m. without incident, phew.  Tom, however, had to keep "running" through the night, escorting her and dealing with the ding-a-lings of the respiratory rate monitor.  They did not want to turn it off or down last night due to her earlier episode.  Chinese water torture.

Tom must have gotten a bit of sleep because Annie informed him that she made a bathroom run by herself  so he could get some sleep.  I've learned to accept the necessary role of hardship in the lives of my children.  So much of what I like about them has come from their having to respond to difficulty, not the absence of it.  Even in these past few days Annie has made some profound changes.  Where she used to ignore Katherine when she would say "I love you" at night or when parting, last night Annie only wanted to hold Katherine's hand.  Where Annie used to take her parents for granted she now realizes, on her own, that we have needs and feelings.  This was evidenced by her unplugging and wheeling herself back and forth to the restroom, her impulse to reach out and comfort me with a hug and her saying, when the fire alarm went off, "Mommy, I'm sorry the alarm woke you up, but at least you have something to write about on the blog." :)

This recognition that she isn't the only one trying to live a good life in spite of challenges has been brought home by her uniting with the cancer patients in the play room, hearing the medevac helicopter arrive and witnessing the events outside her window this morning.  Tom and Annie awoke to the LA Marathon streaming by their window and it was the handicapped athletes who were going by at that moment.

Don't kill the messenger

We've decided that the most eventful stuff happens on my watch because I write the blog.  Thus I've decided it's my civic duty to help the unemployment rate and create a job opening for this position....

Today started innocently enough.  Morning routine, then Annie went to the playroom and made the aquarium pictured above (note the artful use of medical tape), then I spent most of the day managing her moody and munchiness.  

The final day of ATG started without event.  Since yesterday went smoothly it should have been another straight forward day but then, I guess, I'd have nothing dramatic to write about.  With an hour to go Annie's blood pressure shot up and she started alerting us of a headache.  Now Annie is one stoic little kid and when she starts contorting in pain and says she needs help it has to be a major event.  Unfortunately there aren't as many medical professionals around on a Saturday at 5:00 and getting action on this event took longer than anyone wanted.  We had about forty minutes of sustained, acute head pain before she experienced relief.  The extent of my training in pain management was my Lamaze class, so I resorted to pretending she was giving birth.  Therefore lots of breathing and cool compresses to the forehead until a medicine to reduce the blood pressure arrived and took effect.

Once the blood pressure came down and the head pain was gone the ATG was resumed at half the rate (thus double the time to completion).  While there was absolutely nothing funny about this episode, I can't help but roll my eyes to realize that not five minutes after we got everything stabilized Tom walks in for his shift and everything has been calm since.  There is just over an hour to go and then begins the waiting period to see if this treatment has the desired effect on Annie's blood counts, and that will take a while to know.  This would be a good time to pray us across the finish line!

Night Owl

Just need to change my expectations.  One way or another nights will be eventful.  Just grateful Annie wasn't the main event.  11 p.m. escort.  2 a.m. escort.  Back to bed, ding-ding, call nurse to adjust machine, settle down, really loud ding-ding...must be room next door?  Why isn't a nurse helping the patient next door?  Get up.  Ohhh, not the room next door, the fire alarm.  Great, I can see the headlines.  Luckily nothing came of it.  Now wait for all the adrenaline to dissipate ... "Mommy...."  4:30 finally fall asleep. 7:00 a.m. knock-knock, time to take blood.

My family has been in transition at both the oldest and youngest ends this week.  Also last night Katherine and Annie's 104-year-old, great-grandmother passed away.  The girls were prepared and at peace and Annie feels happy that her Nanny is safe in heaven.

Last day of ATG today starting after lunch.  Annie is deep in her imagination listening to the Harry Potter series books on tape.

Rosy Cheeks

With all these years of low hemoglobin we rarely have seen Annie with rosy cheeks.  Today they are both rosy and pinch-worthy.  Not the worst side-effects of all the medications being poured in to her.  The PICC line was never inserted as the specialist was booked all morning and she couldn't take her afternoon appointment as she had already started the ATG.  There is talk of trying again Monday.  Today's round of ATG was uneventful and finished by 6 p.m.  The only notable discomfort of the day were sore legs which are still an issue as she settles down to sleep.  Hopefully some warm packs will help.  There is nothing scheduled for this evening so maybe it will be less eventful.  

Shuttle Relay

Well last night was better.  The ATG was causing Annie's heart rate to drop and the flushing continued so they kept dropping the rate which kept extending the process further into the night.  It was finally finished at 10:30 although she mostly slept.  Tom was on duty but had the head's up about the ding-ding-ding's so once that started he knew to ask the nurse to lower the threshold (this was a doctor-approved call).  Tom is too smart to be fooled by the Maintenance IV but he did get to monitor an unexpected platelet transfusion at around 2 a.m.  This was meant to better prepare Annie's insertion of the PICC line today.  She also needed medication for a spike in blood pressure.  The rest of the night was spent sleeping and escorting bathroom visits.

Katherine enjoys track and her team did especially well in the relay.  This is a great metaphor for taking care of Annie.  A lot of time is spent mentally preparing for the hand-off, then the coordinated moment, then either the adrenaline surge when you take over or the release when you are freed and then preparing again for the next round.  We are lucky this time to have Katherine on our team.  She was only seven-years-old before but now she really keeps our home running while we breeze in and out.  She's definitely our MVP!

Annie has been patched in to school this morning and it lifts her spirits like nothing else.  I hope schools can do more to implement this kind of technology.  It would be great to keep all kinds of sick kids home yet still able to feel they can keep up with school and peers.

Will report how the day went after I grab the baton tonight.

Mustang

Since the ATG didn't start until 12:30, and there was no school to patch into, Annie had the morning free.  First she unplugged from the IV for a bit and took a shower.  Next she joined some other patients in the play room for arts and crafts and then they all wheeled their IV poles to the 6th floor to visit the library.  She is on the hematology/oncology floor so most of the children are on chemotherapy.  It's amazing how communities will form even in spite of tough situations.

Day two of the equine ATG went better.  I joked with Annie if she felt like a horse having all this horse serum in her body and she said yes, she felt like a mustang.  Now its not that she felt robust like a wild horse, but the mustang is her school mascot so it was a fond association for her.  There were periods of breaking out in a rash and she had discomfort in her calves most of the day.  They tested for electrolyte deficiencies that might cause the soreness and found she needed phosphorus.  Who knew we need phosphorous but it makes up 1% of our body weight.  Always stuff to learn.

So most of the day she napped and listened to stories.  Without needing to do ATG and blood transfusions tonight hopefully it will be less eventful!

Trying to do yoga in a pachinko parlor

Oh what a night!  As the prednisone and benadryl wore off Annie began getting rashes all over from the ATG so, again, they stopped the IV and waited until she could have her next dose of meds.  Then they started again at a slower rate, this meant the procedure would need to go later into the evening.  She "went to bed" around 9 p.m. but, with all the fluids being pumped in, was up every two hours to use the restroom.  This isn't easy as it requires unhooking three lines from her body, unplugging her IV pole and wheeling it, and her, about.  By 10:30 I got to bed and then the fun began.  First it would be the nurse checking vitals (this is done every 30-60 minutes during ATG), then it would be little whimpers from Annie.  These were upsetting until I realized the pattern, about fifteen minutes before she would tell me she needed to go potty she would make these sounds.  So after one cycle of this I calmed down enough to sleep.  Then...ding-ding-ding-ding-ding...stop.  It was one of her machines but because it stopped and no one came in I'd try to get back to sleep...deep, yoga belly-breathes I'd tell myself, relax.  Ding-ding-ding....  Finally I got up, walked to the machine and it would stop.  Back to bed.  After a series of this I realized it went off when her heart-rate dropped below 70 but I guess the sound would wake her and cause her heart rate to go up and it would stop.  Back to bed.

"Mommy I need to go potty."  Out of bed, very groggy.  The machines beep when you unhook them but for some sleepy reason I got in my head that the beep also meant trouble with the IV.  I looked at the screen on the pump, "Maintenance IV."  "Oh no I thought, the IV needs maintenance."  Thus while she's using the restroom I'm working myself into a dither about the IV.  Finally I get her back to bed and I open the door and, with great seriousness, tell the nurse at the night desk, "Her pump says Maintenance IV."  She says, "Yep, that's right."  Now I'm bothered and thinking the nurse needs to work on her people skills.  I keep assuming someone is on the way to fix the pump.  Eventually it dawns on me, its the pump that maintains her IV fluids 24-7, oops.  Breathe in and out, try to sleep.  Nope, time to start the red blood transfusion.  I try to entertain Annie with my IV embarrassment story and when I get to the punch line about it being the name of the pump she says, "Yeah, I know."  But the words combined with the tone and expression meant, "Yeah, I know dummy."  Ok I'll just slither back to the bunk and almost fall asleep when you wake me to go potty, thanks :/

Ding-ding-ding.  Now I work myself up about the dings - breathing rate is something I'm supposed to look out for.  Have desk nurse come in and she says we need a new finger-pulse monitor (she's very nice in real life versus my sleepy imagination).  Great, it wasn't Annie, back to yoga breaths.  Ding, ding, ding.  Time to call her nurse.  She lowers the heart rate threshold on the machine.  Breathe....  "Mommy...."  Repeat, but ... good morning... time to take labs, medicine, order breakfast, meet with doctors, bathe Annie...right-o!

So our plan for the day is Day 2 of ATG with a lesser concentration but at the same rate as yesterday so it will take longer but hopefully avoiding the adverse reactions.  Also even more profilactic medications.  ATG begins at 12:30 because it's once every 24-hours over four days.  Will report tonight.

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!