Chapter One, Page One

Tom did not have the restful experience I did for the first shift.  There were check-in procedures we didn't expect and they didn't get into bed until 11, then a procedure set off a bloody nose, then there was a problem with an early morning transfusion, then Annie got chills, then two machines malfunctioned, then radiation time (she had to be strapped to the wall and she looked so sick that the picture is too disturbing to post), then a wait for a wheelchair, then violent chills, then high fevers that continue, then several antibiotics and lots of checking on her.

Getting all the events of his past 16 hours compacted into 15 minutes was so overwhelming that I had to ask for a break before even starting to give him a break!  All I could think was, with such a terrible start I just wanted to turn to the last page of the story and see how it ended.

Annie has felt miserable all day, hasn't eaten or had more than a few sips of water.  She has been groggy and barely able to communicate.  When I explained Tom would be arriving shortly for the night she was shocked to discover it was still Monday.  She thought it was already Wednesday.  She asked if every day was going to be this long.  Definitely not how the first day was supposed to go.

Rocketman

We just dropped off Annie and Tom.  In the dark, outside the deserted building, she made a grand show of "her last breadth of fresh air."  She also pointed out the significance of the double sliding doors closing behind her as she entered the futuristic lobby.  For her last transplant we referred to the hospital as "the hotel."  This time we've dubbed it "the space station."  We talked about how this must be similar to what astronauts feel when they head off to spend months on the space station.

Getting the first night off duty, I get to come home and relax.  In some ways that is my most overarching feeling.  Excepting her hospital stays, it has been seven very long years trying to keep her safe on literally an hourly basis.  There is a degree of peace that comes with handing her care over to a medical team.  This has not been the same feeling for Katherine who had to come home to the realization that the sibling she has shared a room with almost since Annie's birth is not there.

The Cut Off

Here's Annie with her former pig-tails and her current short hairstyle.  Since she doesn't think she'll want a wig, we'll donate her long hair to Locks of Love (http://www.locksoflove.org) where they'll use it to create hairpieces for disadvantaged children who lose their hair for a variety of reasons.

Annie is having to adjust to the port they inserted as well as having short hair.  Her transplant has only been a future idea to her until now.  At moments she has needed a little coaching to refocus her attention on her blessings but she gets back in the groove pretty quickly.

A big part of that comes from the support she gets from her community of classmates and friends.  While the adults in her world provided her moral support before, now her generation has really stepped in.  Through email, FaceTime and Instagram they have found a way to support her and keep her feeling connected.  It is remarkable to witness as these 12-year-olds take ownership of this experience and find ways to make the best of it.  We are grateful to be part of a community where that type of thing happens.

Jokester

Annie had her surgery this morning.  Tom kept me posted via text messages throughout the morning.  Something to the effect of, "Done, still asleep," "Awake, still groggy," "Heading home."  After that last one I asked how Annie was doing, then how Tom was doing.  It sounded like Tom was a little worn down so I was trying to send back supportive messages.  After a bit of this I get another text explaining that Tom had not been texting me, he had gone off to get the car, and it was Annie tricking me the entire time.  Thus I'm guessing she is doing OK.  Tomorrow she'll go back to the hospital to have her dressing changed and then it's hair cut time.

Her hair will fall out due to the chemo and radiation.  In the process of killing her stem cells all other fast growing cells will also get wiped out.  When she was four this made no sense to her so she refused to let us cut her hair.  Later she was very cross when long pieces of hair were stuck all over her and the bed.  Since she remembers that she agreed to the cut this time.  We'll save her long hair in case she decides she would like a wig made from it.  At this point she doesn't think she wants one, as was the case last time.  We'll get a short, stylish cut tomorrow since it will still be a week or so before it falls out. Once that starts she'll have the short cut buzzed by her sister.  While it all sounds unpleasant from the outside it's part of trying to have fun with what we can for us.  Will post the new hair-do tomorrow.

Smile to smile

These last ten days had several twists and turns but worked out for the most part.  Annie had a spat of bloody noses that caused her to leave events midstream.  It became clear she wouldn't be able to attend her class trip to Astrocamp.  While it was a tough decision for her, she bounced back and we had a memorable day at The Getty museum.  The next day Tom took her to Disneyland.  She and Katherine set up a tent in her room and had a sleepover to round out Familycamp.

Yesterday was her last day of school and it was filled with parties and good cheer.  The sign above is from the door to her English classroom.  The smiles of yesterday turned into fixing her smile today at the dentist.  She had one baby tooth that was going to create problems if not removed.  So she started the day with a platelet transfusion then to the dentist then back to the hospital for a doctor's appointment.  We've determined that her new donor is also international.  The stem cells aren't scheduled to arrive until after midnight a week from next Monday.  It is interesting to think that across the world there is a 30-year-old man willing to share his stem cells with someone he doesn't know.  After two years, if both parties are willing, we'll be able to contact him.

Annie is about to have a pre-bedtime snack as she can't eat again until tomorrow afternoon.  Her surgery to insert a Hickman is tomorrow at 9.  She'll get to the hospital at 7:30 for platelets again.  The procedure is described in my 3/13/12 post.  Will write again when she's out of recovery.  We are grateful for all the prayers and warm wishes, it is impossible to be sad with so much love and support!

Science Fiction

This is the treatment plan we got today showing Annie's regimen from May 5th (day -8) to May 24th (day 11).  Day -8 she moves into the "hotel."  Day -7 she gets total body irradiation.  She was measured for this today.  She will stand for 12 minutes in one direction and 12 in the other while having 2 Gy of TBI beamed at her.  Days -6 to -3 she'll receive chemotherapy.  Days -4 to -1 she'll have ATG (this is the treatment she had most recently a year ago March).  Day 0 she receives the donated stem cells.  Days 1, 3, 6 and 11 she gets another small does of chemotherapy.  All during this time she gets one cocktail of drugs after another to deal with side-effects, to reduce the risk of complications and to manage pain and discomfort.  She'll also get fluids and nutrition and medicines to help flush all the poisons through her system.

While sewing a wound or setting a bone can seem very intuitive, transplant medicine seems more like science fiction.  That all these chemicals can circulate in a body and create different effects is remarkable and should inspire as much awe as our cutting-edge electronics.

Annie is finishing up platelet and hemoglobin transfusions now and her next scheduled appointment is for May 2nd.

Happy Juice

Annie made it through her biopsy without trouble.  She has had seven of these over the years and it is always interesting to hear what she has to say after they give her the "happy juice" but before she falls asleep.  I've tried asking her things like, "where did you hide your sister's diary," but she just giggles.  Last biopsy she sleepily told Tom he had four eyes.  Today was a case of truth is stranger than fiction.  When the doctor asked her what she did on her vacation she said, "I swam in the pool, went to the beach and was peed on by a tiger."  While the doctor thought this was very silly it was, in fact, true.  We did visit a caged tiger that was agitated and pacing and, unbeknownst to me, Annie was growling at it.  (She later explained she was trying to talk to it.)  The tiger turned, lifted it's tail and sprayed her head to foot.  While it's a great story now she was fairly traumatized at the time.  We did conclude however that it had to be good luck as how many people get peed on by a tiger and live to tell about it?  Next doctor's appointment April 22nd.

Photo Shoot

For the most part Annie sailed through her round of tests today.  She'd say her least favorite part was having to drink 1000 ml of water with iodine for the above CT scan.  Although there was some bribery involved it was soooo much easier getting her to do it than when she was four-years-old.  She did top off the day's schedule with a platelet transfusion as her level wasn't high enough for tomorrow's bone marrow biopsy.  Guess I got a bit too smug as, no sooner had I texted Tom that we were wrapping up a successful afternoon, a bloody nose started.  Luckily she was simultaneously getting platelets so it didn't amount to much.   Biopsy at 10 in the morning...no food and drink until after.  Will report afterwards.

Countdown

For the most part no news was good news these past few weeks.  Over four weeks Annie had only two  bloody nose crises but we didn't need to go to the ER for either.  She also only had one full day of transfusions.  If she keeps to using a saline spray every 30 minutes her nose seems not to dry out and crack.  We even managed a nice vacation and Annie celebrated her 12th birthday.

Now we switch to medical mode and all plans start to revolve around her care.  This Thursday she'll have an IV and blood testing, a complete ventilatory study, NM renal w/ GFR, X-Ray chest PA and lateral, CT oral contrast, X-Ray for bone age, CT neck, chest, abd and pelf, CT brain, CT sinus and echo/EKG.  Then Friday she gets a bone marrow biopsy.  April 22nd she has measurements for her total body irradiation, doctor's appointment and maybe transfusions.  May 2nd a day of transfusions, May 3rd surgery to install a port and May 5th she gets admitted.  That's a line-up we'll surely be taking one day at a time and trying not to think about any more than necessary.  Will update after this week's procedures.

Optimism Bias

It's one thing to try and convince an adult they have optimism bias but trying to convince an 11-year-old is, well, optimism bias.  We're currently struggling with bloody nose relapses.  After two or so weeks with the new protocol it was tough to convince Annie she needed to apply gel three times a day and spray her nose throughout the day and keep up the incessant water consumption.  Things got lax, the air got dry and the bloody nose came back.  We got it under control again but then after a smooth period the push back resumed.  "Mom, my nose is fine.  I don't need the spray.  I can tell."  Uh, huh....another bloody nose.  "Mom I should always listen to you.  I promise I won't fight you."  Great but then a few days later....  We're waiting out another bloody nose now and weighing when to get the next transfusion.

Her test schedule has been made and it's quite an itinerary.  On April 11th she has 9:30 labs and IV, 10:00 Pulmonary function test, 11:00 GFR, 12:00 Chest X-ray, 1:30 CT prep, 1:45 Bone age X-ray, 2:30 CT scan, 3:30 EKG & Echocardiogram, next day 10:00 bone marrow test.  Can't wait.