Patience

Day 38: Another good appointment.  Her platelets passed 150,000 which puts her in the normal range for the first time in seven years.  Hemoglobin went down to 10.0 but we're hoping it will rebound at some point before requiring a transfusion.  Whites are holding pretty steady (they bounce around for everyone).  Since Annie will be immunosuppressed for the next year, even though her counts may get strong she is still at greater risk for infections and disease so she has to be extra careful in that arena.

Her kidney function markers improved enough that we can try taking her off the IV pole again Sunday night.  Even better, most of her other markers are stable enough to enable her to only have to go to the hospital for blood draws only once per week.  She has also been able to go off a few medications so we are down to three plus a magnesium supplement.

As the medical tasks become less acute Annie has begun to think about life beyond health milestones.  She wants her prior body strength back, now.  She would like to have her long hair back, now.  She would like to go out to shops, restaurants, classes and play, now.  Luckily these moments pass quickly as we try to keep her busy so she doesn't dwell.

Our next goal is to get her Hickman port removed.  Usually this happens after Day 100 but her doctor was willing to revisit the topic in a month.  Since we are hoping nothing eventful happens before then I will not plan to post again until Thursday, July 11th.

Report Card

Day 34: It's report card season but grades weren't ready when we had our appointment today.  We learned her blood counts are still progressing well but they didn't have the engraftment results from the biopsy.  They did however have information about cellularity.  Back in April when she had her last bone marrow biopsy her bone marrow had 15% cellularity.  That means it was 15% full of stem cells making blood cells and 85% empty, thus why it's called aplastic anemia (empty of blood).  Her biopsy from last Thursday revealed that she now has 80% cellularity.  That was excellent news for this point in the process.  What remained to be known was what % of those cells were her donor's DNA and what % her old, flawed DNA.  We were told we'd hear by Wednesday.  Late afternoon, however, we received an email of her engraftment report and it showed that her bone marrow is now 99.66% her donor's DNA and 0.34% her DNA.  This too was excellent news for day 34 and the expectation is that it will eventually go to 100%.

Since the news came after today's appointment we'll have to wait until Thursday's appointment to better understand how this impacts things from here.  We still have issues to deal with and she was put back on her IV pole for nights today as her kidney numbers went up again.  So there are still hurdles to cross but the engraftment report was the biggest and now we just want to be careful to not mess things up and we're grateful for all the hard work, prayers, help and good luck so far.  We'll report after Thursday afternoon's appointment but it's definitely a cause for celebration in the mean time.

Thank You!

Day 28: I've felt a lot of things for the first time as a result of Annie's illness but these past few days there have been some new feelings.  Where we used to have to constantly warn Annie to stop spinning around or flopping onto the hard floor or tell her to use nose spray every hour (all to prevent the black and blues and bleeding her low platelets couldn't control) now I catch myself and stop.  Her platelet count today was 131,000; almost normal.  For us this is like a blind person getting their sight back.  It's like waking up from a nightmare long after you'd given up ever waking up from it.

Her white and red cells were also in normal ranges.  The reds, however, could be due to her transfusion last Friday from a "designated donor."  This leads me to our thanks.

Annie's and my schools share the motto "Actions not Words" and that spirit was in top form yesterday when her school held a blood and bone marrow registry drive which ended up exceeding their goals.  I have often wished the other people at City of Hope could have the same support as us and yesterday they did.  Those gifts of blood will extend and save lives of individuals as well as bring another day together for loved ones.  When Annie gets a transfusion I look long and hard at the "designated donor" sign and think about the time it took that person to drive out, sit through the questions, get poked, lay there while the blood is removed or sit even longer while the platelets are, then they have to take it slow, forgo that workout or glass of wine all usually in complete anonymity.  It's an overwhelming expression of the motto we hold so dear.

Thursday Annie has her bone marrow biopsy, her eighth and hopefully her last.  It will be used to see if the engraftment was successful.  The doctors are hoping to find that 95% or more of her bone marrow is that of her donor.  Eventually they want that to be 100%.  We won't know the results until the start of next week so we'll update then.

Rover

Day 26: This is rover.  We've been discouraged from getting a pet all these years because of Annie being immunosuppressed so I think we tend to anthropomorphize things a lot.  Rover carries Annie's IV fluids and pump and Annie seems to like wheeling rover around, especially when we're trying to sleep.  The nurse that helped us set it up says this seems to be the way health care is moving to keep costs down.  Have more of the routine treatments done at home.  It has worked out better than we though, especially because the pole is smaller and we don't have those awful noisy pumps that BEEP (I think I have PTSD from those...I hear them in my head).  Rover just sort of makes this chirping sound as he pushes the air along.

Since we're settling in to something of a routine I'll wait to update again until after her doctor's appointment Tuesday because otherwise (hopefully) I'll just be writing a running commentary on how many board games Annie beat me in!

Ahhhhh

Day 25: This is our home pharmacy.  On the upper right is Annie's special mask.  It gets dated and is good for one month.  It also gets kept in its own bag.  She wears this when she goes out, which at this point is only to go to the hospital.  Below that is a yellow paper listing all the things that could go wrong and require us to call the hospital.  To the left is a list of her medications and when she takes them.  Below it all is the pile of daily meds.  Shocking really but they are mostly to protect various organs and to fend off GVHD.  So far our only GVHD issue seems to be nausea.  For the most part we are controlling it with that blue-lidded medication but as it starts to wear off Annie gets queasy as she is right now.  So we have to wait until she can take it again so she can keep down her evening medicine and do her mouth care.

Annie hates mouth care.  She has to swish one liquid for 15 seconds and then suck on another pill for 20 minutes.  She does this four times a day as she has since she entered the hospital.  It's kind of the bane of our existence at the moment.  Oh what a coincidence I just got interrupted to go argue about mouth care.

Anyways all that aside it was a very pleasant day.  She played around the house and we could manage all her affairs while also tending to other things.  We ordered a new pump for her evening fluids and Tom spent a lot of time learning how it works.  It is also nice not to stress about wondering what her blood counts will be every day.  We'll have to wait until Tuesday afternoon for that when she goes in for her next appointment.

Nothing is easy

Day 24: Here's Annie taking her first steps outside in over a month.  She was excited but it was a long day and it's not over yet.  They wanted to keep her on hydration at night so we have to set up the pumps at home.  However it's 10 PM and we have a nurse at our house trying to figure out how to set up some new type of IV pump that doesn't need a pole.  From the sound of things this will take a while as the nurse and Tom are reading the instruction manual to try and figure it out.

Anyways Annie's counts improved again except the hemoglobin which dropped to where she needed a transfusion today.  That extended everything by six hours.  As that was happening we had to finish packing the room and continue with her constant hydration, food, mouth care, medicine and physical therapy requirements.  Then, when reviewing all the medicines going home with us, I noticed they gave her the wrong form of her anti-nausea medicine.  It was the type that dissolves and that makes her throw up - she only likes the type you swallow.  This led to phone calls, having her try to swallow them anyways,  her spitting it up, more phone calls, visits to the pharmacy, calls to the insurance company....finally got what we needed and could head home.  Some friends gathered on the lawn to welcome her home but they had to deal with all the false starts so we were generous sharing our frustration.

Of course it's wonderful having Annie home but it's a little like bringing a baby home the first night.  You're exhausted and excited and then overwhelmed and up all night.  So on that note I'm off to help get the beeping machines set up!

Day 23

Day 23: This picture is of Day 23 eight years ago.  This was the moment we arrived home after her first transplant.  I am truly amazed we're going home on Day 24 this time since the procedure was much more complicated not being her own cells.  Good thing we didn't know then what was in store for us.  I've often used the analogy that it has been like walking on a tightrope and it works as long as you just keep looking forward and not down.  But it's more than not looking down.  We learned that we had to find a way to enjoy the time in spite of the hardships as it's not like we'd get those years back.

Late last night Annie and I snuck off the ward and took the elevator to the top floor and enjoyed the view of the lights sparkling across the San Gabriel Valley.  It was as special and happy moment as I could have had with a healthy child in an optimal situation.  Well it was special until, despite her protests and warnings, I made Annie go to our favorite spot, which was behind a closed door, that she told me not to open, but that I did anyways, and then tripped an alarm, that then made us have to cut our nice moment short, as we fled the scene.

Annie's ANC and platelets were still improving today although her hemoglobin dropped.  We are still battling nausea and she had to be back on IV today since she didn't make her liquids quota (1,800 mL/day) yesterday.  She has been drinking up a storm today to try and not have to go home with a pole and pumps.  We'll see if she can convince the doctors tomorrow.

Meanwhile back in Ithaca

Day 22: Odysseus might have had to deal with his home being overrun with his wife's suitors but we found our home overrun with gophers.  Big mounds have been popping up all over our yard this past month but today we got the report that our trusty no-pesticide, gopher-guy has the upper hand.  This is good news because we're still on track to bring Annie home on Friday and she's supposed to steer clear of fresh dirt among the other gazillion things we learned about in our one-hour debriefing today.  Annie's counts also continued their epic journey and ANC and platelets continued to progress while hemoglobin stood still, which is better than dropping.

We also had some hands-on training with a doll to review how to care for Annie's port.  The blue disk on the left side of the doll is the one opening through which this entire process occurred.  The device to the right is a safety clamp that protects the line from being pulled out by mistake.  The red and blue ends are her double lumens through which things go in and blood can come out.  There is regular care required of the site so the nurse provided training.  I asked Annie to videotape the training however we just ended up with a video of the two of us arguing.  It went something like this...

(irritated) Mom, let me do it.
(irritated) No, I'm learning it.
Mom, I know how to do it.
Fine but I have to do it.
Mom, give me the tape, I've seen this a hundred times.
The nurse is teaching me, you're taking the video.
Here Mom like this...

It just goes on and on like that the whole time.  I can't imagine what the nurse was thinking.

Make way for ducklings

Day 21: Big day in our little pond.  The GCSF pushed Annie's ANC to 2.1 and her platelets keep going up.  The hemoglobin hasn't caught on yet so she'll probably get a transfusion in a day or so but that is to be expected.  The normal ANC count meant Annie could leave the room and attend group today.  Group is when the kids on the floor, who are well enough, get together in a special room and bond.  All 18 patient rooms are full and, unusually, the majority are transplant patients versus the usual cancer-treatment patients.  Group was basically Annie and a bunch of teen-aged boys.  There happen to be a number of musicians on the floor so they apparently had a jam session.  She's past curfew again so I haven't gotten the full scoop yet.

When any of us leave the room, Annie included, this is our uniform.  It is also what everyone who comes in the room must wear.  We call it our duckling uniform.  I happen to be doing a ninja duck impression.

We also learned today that our duckling will be migrating back home on Friday!  So now we're all in a flutter trying to get our house-hospital ready, getting trained to care for Annie at home and packing up.  As you can see from the background of the picture we turned our room into a playground so it will take some time to pack it up!

The sound of a silver lining

Day 20: ANC back to 0.4 so the clock resets for having at least three days of an ANC of 0.5 before going home.  Today they gave her GCSF to help spur the production of white cells.  For reference the normal range for ANC is 1.9-8.7.  On the other hand her platelets are happily multiplying.  They jumped from 28 to 37. That represents 37,000, normal is 150,000-350,000.

Annie's low platelets restricted seven years of her childhood.  Low platelets prevented her from doing sports where she could fall or get hit by a ball and from riding a bike.  Where sports were out, the arts were waiting with open arms.  She spent that same time enjoying all types of dance, musical theatre, drama, singing and playing instruments.  It's interesting to think if she would have developed these interests had she not had to quit the sports she enjoyed before diagnosis.

Music has come through again during her hospital stay.  Annie's guitar was too big for playing in bed so she got a ukulele just before entering the hospital.  There is a music therapist that visits once a week and her first session with Annie was transformative.  After the therapist left, Annie changed the "I don't want to be here" message on her "All About Me!" sign to "I play ukulele."  Since then she has preformed a little concert and started giving lessons to a friend.  Here's a snippet from her repertoire.

Two Towers

Day 19: Continued progress with the blood counts.  WBC back up to 0.6 and ANC up to 0.5.  We have also seen her platelet count go up and this is after the point where a transfusion would have had impact.  Over the past few days we have watched the platelets go from 17 to 18 to 28 today.  Platelets were always the cell line that dogged Annie so it is surprising to see them improving before hemoglobin.  But of course this is probably not Annie's old immune system we're witnessing.  Doctors won't officially say engraftment until she gets another bone marrow biopsy around Day 30, however unofficially she is displaying the signs of such an event.

An ANC of 0.5 is also a benchmark for being discharged.  There is talk that if she continues on this track she may be discharged at the end of the week to home isolation.  There are three milestones required for discharge.  One is being free of pain killers.  Two is being able to keep down some solids.  Three is an ANC of 0.5 or above for three or more days.  Annie has cleared one, was good on two except for the start of yesterday and today is the first day of an ANC of 0.5.

Since we're looking big picture, the two towers picture above is my go-to analogy for the entire transplant experience.  There was the first scary looking tower which represents all the nasty stuff in the beginning.  The surgery, the radiation, the chemo, the battery of meds and the infusion of cells.  Then there was the long flat run between the towers.  That is where we are now.  This run is scary for entirely different reasons and a myriad of them at that.  The fear of failing to engraft, risk of infection and endless possible complications.  Waiting at the end of this run is the second scary tower, GVHD.  Graph vs Host Disease is the gambit of complications that arise as the donor's system and Annie's system clash.  This is unique to every individual and donor.  Acute symptoms start as soon as the cells are introduced through engraftment and chronic symptoms begin to present around the three month mark.  These can require a life-time of management.  City of Hope is a world leader in the management of GVHD so we are in the best possible hands for facing the second tower.

Chutes and Ladders

Day 18: This process is like the game chutes and ladders.  You move a long step-by-step but sometimes you land on a chute and slide back to a lower spot.  Similarly you expect a regular step and then you cruise up a ladder.

Annie's counts, however, were pretty routine.  Her WBC went from 0.6 to 0.5, ANC stayed at 0.3.  We've started watching her hemoglobin and platelet counts but those are harder to discern since she has transfused blood in her system for both of those.

Her slide down the chute was in the nausea department.  She threw up the first two meals she had today and I'm waiting now to see how things go with the third. This has the potential to be a back slide as, if she can't keep her food down, she'll have to go back on TPN and IV fluids.  Also she was off the IV anti-nausea medicine so it would be unfortunate to go back on that (more things to beep all night).

I learned all this by texts from Tom so I was feeling very sorry for both of them ... until I started receiving some pictures from them.  Pictures of Annie with Micky and Minnie Mouse, Annie with R2D2 and a storm trooper, Annie with Bat Girl, Super Girl and Wonder Woman, (Tom with Wonder Woman), and Annie with Austin Power.  Apparently there was quite the party on the floor.  Well that was the zip up the ladder for them.