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.