The hazards of meditation

Day 3: While I might get daffy after two nights on duty, Tom stoically takes double shifts routinely and even had a three-nighter.  He's our MVP but as of last night he was almost MIA.

Tom took up meditation in preparation for Annie's hospitalization and he has kept it up every day without fail.  Last night a nurse friend came and gave him a break so he went out to meditate.  He quieted himself on his favorite bench and soon heard a rustling sound.  Being the good meditator he is, he acknowledged the sound but breathed through it.  Again more rustling and more breathing.  At some point it got the best of him and he opened his eyes to discover ... a skunk ten inches away from him.  He had been so silent it hadn't noticed him but then Tom flinched, the skunk raised it's tail ... but luckily it's stinker was pointed in another direction and Tom was able to move slowly away.

Fortunately we have a new indoor option for naps and quiet time so we'll be safe from the dangerous creatures stalking Duarte.  Well all except for cranky Annie.  Now I too would be cranky if I hadn't really eaten for eleven days (she has lost about eight pounds) but I think the TPN might have given her a little boost as in the late afternoon she moved to her chair by the window and managed to do a few of her recommended treatment activities and catch up on some emails.  By dinner time she was actually interested in some food and in the end managed to keep down five spoonfuls of broth and a noodle.  She'll get TPN again tonight and hopefully continue to build her confidence with food.

Nap Pods

Day 2: Like a starving castaway obsesses about food, I'm obsessing about napping and, if I win the lottery, I'm donating a dozen of these lovelies to the hospital.

I drool over the promises on the website, "the ideal energy enhancing environment," "allows individuals to boost their productivity while helping maintain a healthy lifestyle," and "the elevation of the feet relaxes the muscles of the lower back."  Yes, yes and yes!

This is what happens after two nights in a row on duty; and I had help both those nights!  It is still a scary time for Annie and she wants Mom or Dad when the pain sets in.  So Tom and I have embraced our inner homeless person and have taken to sleeping in our cars, on benches and, today, I saw a tree and a patch of grass so I settled right in.  There was a breeze, there were birds chirping, all was good.  Then I got the call, Annie was in distress and wanted Mom.  To me this makes us even and I'm no longer going to feel guilty about the whole food episode yesterday.

Annie is, of course, napping.  A lovely morphine sleep due to her afternoon head pain and nausea (I wanted to point out that she throws up with or without food but figured that was in bad taste).  She had a nice morning though, a shower and bed change, quiet reading by the window, and having her nails filed (not suppose to cut them and risk bleeding).  I've also noticed that she always manages to be asleep when the hospital teacher comes by.  Suspicious.

Viking Annie

Day 1 (99 bottles of beer on the wall to go): When Annie had her first transplant there was a tiny bag of cloudy yellow liquid containing her stem cells (from the umbilical cord) hanging from the pole.  I was flabbergasted to see the picture of what she got this time - the large bag of red above.  And her donor gave more than one bag!  Now I'm thinking her donor is some massive descendant of a Viking warrior.

When Annie began having her considerable pain yesterday it started in her legs and moved down and then across her arms - all the largest spaces for bone marrow.  The nurse hadn't seen such a reaction, yet  questioned was it possible the stem cells were having an effect that quickly.  Annie kept saying she felt like she was ballooning up - like the incredible hulk I imagined.

She awoke from her morphine-laced slumber yesterday evening pain-free and she went on to have a routine night.  Today has been uneventful until I encouraged her to have a little to eat (it had gone so well back with the chips) and her body responded by dramatically tossing back the effort.  Now she is furious at me and I'm kind of skulking around the room while she shoots me dirty looks.  She'll go on TPN tomorrow and we'll wait a bit before attempting solid food again.

Nasty surprise

Day 0:  Well the stem cells made it and started dripping in about 3 AM.

When she had her first transplant we were warned how bad the next two weeks would be but none of that came to be.  Since she had received her own stem cells, stored at birth, and since she was the first to have that, everyone was pleasantly surprised how well things went.  That is not the case this time.

Today has been horrible.  Acute pain moving from one place to another.  She's on morphine and we've had to up the dose.  Not having been through this part before we're in a bit of shock and regrouping as to how we'll manage two weeks of this.  For the kids who communicate with Annie things may be on hold for a while.

There is little to be done but endure this.  The hospital staff is working to manage the symptoms best they can.  This is the body's reaction to having an onslaught of something unfamiliar pouring in.  The loving prayers and support are felt and we continue to appreciate them.

Mystery Man

Day -1: Somewhere abroad a 30-year-old man donated his stem cells this morning for a person he knows nothing about.  All we know is he is ABO compatible, 11/12 matched including DPB1, with A locus micromismatched.

Since then his cells have been making the trip in a cooler carried by a courier on foot, car and plane.  The number of cells were counted at the international facility and there were enough for her size in the first of two bags he donated.  The second bag will be saved, if not needed right away, and frozen in case the engraftment doesn't work.  The cells will be re-counted here and then she'll get them over three hours in the wee hours of the morning.

This is a good time for prayers for safe passage and a happy landing in Annie's body.

Soap

Day -2: With the heavy chemo further in the rear view mirror Annie has started requesting any snack food that we can't get from the hospital's extensive collection.  We gladly comply but really it does seem she goes out of her way....  This is her snacking while watching a show, while she is watched by a nurse through that window.  There are rows of monitors on that pole as well as another and the nurse watches her and computer readouts for the first sign of reaction from her ATG.  This happens six hours a day from 10 AM - 4 PM.  Tomorrow is the last day of that.  She usually sleeps through the first two hours since she's busy keeping us awake at night.

Today has been a week in the hospital and we've begun to find our place in our new community.  We start sharing stories as do others with us.  We are now officially part of the soap operas playing out on our floor.  There was the patient who was discharged just in time to make it to prom, the math troubles of a staff person's child (I'm a magnet for math trouble stories), the ups and downs of the families in our neighboring rooms, and even budding romances.  Why just last night Annie and her visiting night nurse were up and giggling at 2:40 AM about the nurse's potential new flame.  Life goes on.

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.