Round and round we go

With her final chemo last night and half way through ATG she was able to hold down some food today and her energy improved.  We are very grateful for that but there seems to be a steady stream of things that pop up to worry about.  A couple days ago we learned that the test for MRSA all patients get on entry came back positive.  Now everyone has to wear yellow gowns around her and another antibiotic is added to her soup. Then I noticed a red streak near one port incision that could indicate infection so we adopted that worry. Also a cough came up last night that required an X-ray but that came back clean.  Now the cough is back.  Then there was the low blood pressure today that could have meant a trip to ICU but luckily didn't.  Now a slight heart murmur.  This is an exercise in being able to see the forest through the trees!

Count down to count up

Day -4: That's how time is measured with bone marrow transplants. The days of destruction before the stem cells get dripped in are minus days. The day the cells are given is Day 0 and then success is measured by benchmarks going to day 100.  Annie was at day -8 on Monday when treatment began so 108 days total although that doesn't mean all is over then, it's just a milestone to reach.

Today ATG began. This is the fourth time she has had it. It's the nasty thing I mentioned. And to have it on top of chemo, it's all just a nightmare, but with nice people around. To revisit the joys of ATG just go back in the blog to March, 2012.  Tonight is the last dose of major chemo then three more days of ATG.  There is nothing easy about killing off a system.

As hard as it is we find moments to joke and we played a little Scrabble today.  The view from the floor to ceiling window is of the mountains and a lot of sky. We could see the lightening yesterday. We also sense all the lovely prayers and thoughts :)

Group Project

We're in the thick of it now.  Annie gets a dose of chemo at noon and another at 10 PM.  She sleeps a lot and shuffles to the bathroom every two hours.  She hasn't eaten for two days.  Just before each chemo session there has been a little window where we can engage her but mostly she's subdued.

As Annie's immune system gets killed-off her body becomes completely dependent on others sharing some of their blood until, hopefully, her donor's cells can repopulate her body. The fact that she has become a living "group project" is an overwhelming thought.  Her blood and platelet donors provide the building blocks and she, in turn, becomes a biological mosaic of her community.

To that end, the donor center at City of Hope in Duarte, California has asked anyone able to donate blood or platelets for Annie to contact them at 626-471-7171 and to say it's for "Annie."  The criteria for eligibility can be found at this link Donor Eligibility (or the web address below).  There is no way the donations Tom and I make can ever fully repay those she has taken out of the system and we are indebted to those who have helped share this burden.

City of Hope is an amazing place filled with people doing extraordinary things.  If you come out to donate be sure to walk the gardens and sculpture paths that flow between the 21st century research facilities.  We are fortunate to live near by as most people must upend their lives, all over the world, and move into bungalows on the campus in order to avail themselves of this top facility.  We have gotten to know a surprising number of people in our town whose lives have been restored to them by the people of this complex.  Blood donors are an indispensable part of that process and we can't do enough to thank these unsung heroes
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http://www.cityofhope.org/patient_care/medical-facilities/blood-donor-center/Pages/donation-qualifications.aspx

Oh What a Night

Shock and awe began last night and Annie responded by having to get up for the bathroom and to throw up every two hours.  Luckily we have a friend who is a night nurse (as well as a former babysitter and student) who has graciously offered to help with night duty on her off days.  She comforted and aided Annie through the night so I could try and rest.

Annie has three more nights of the main chemo doses then other different nasties then some light chemo  after the transplant. So we have a ways to go with this phase.  As always the nurses and staff are doing everything they can to minimize the side-effects.

Will

I don't mean "will" as in strength of character or last will and testament.  I mean it as in William.  Today we learned there is a young man on the floor who, like Annie, enjoys playing the ukulele.  Could it be that she was only up from 4-5 AM with a bloody nose or that she has entered the "barfy" stage but kept down one pistachio, one piece of mango, one cashew, one peanut butter pretzel and five sips of water .... that improved her mood?  Not sure but something got our formerly morose girl to do her physical therapy, practice her ukulele, and to go to a little patient gathering before which she wanted us to find her matching headband and sort out her cowlicks.  In fact she is now 24 minutes late for "curfew."  We'll take every little blessing we can get, chemo starts tonight.

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!