Friday, April 08, 2016

Day Minus 5: Admit Day

Today Abby gets admitted.

She got to stay at a freinds house for the last few nights so that was really nice.  Great to be able to cook her buttered noodles, and have her rest in a comfortable place.

Here spinal tap with AraC is scheduled for 11amish.  That will target any remaining cancer cells that may have passed through the blood/brain barrier. Last time she did this it made her super nauseous and vomity (is that a real word?). Anyway, pray that it doesn't cause that this time.

The radiation is over.  She did really well.  Day one was actually the worst and then the 2nd and 3rd days were all pretty good.  Thanks for the prayers and please continue them for that big list of side-effects on the last post.

Heres a look at our week:

  • Friday= Admit + IT AraC.  Clorox wipe all items that we bring into the room at the door, set up Abby's new room (hoping its on the sunny side of the hospital).
  • Saturday, Sunday, Monday = Chemo, Chemo, Chemo.  This on is a big gun chemo drug that she's never had before.  This, along with the radiation, will destroy her marrow and make room for Anna's marrow to effectively graft in. Lots of possible side-effect here too, hearing loss, reactions, mouth sores, intestine sores and other things that would cause pain.  Please pray for those as well.
  • Tues= Wait and help Anna who will probably be really nervous.
  • Wednesday= Day 0.  Transplant day.  Anna will go under, get the bone marrow harvested, they will spin it down to just stem cells and get more marrow if needed (she'll be under for about 4 hours).  Once all of the marrow is ready to go, they will bring it up to Abby, hook her up on an IV and drip it in.  The stem cells will make their way to her marrow, graft in, and grow new blood for Abby.
  • Day 1-21 = We don't know what this will look like but we'll keep you up-to-date for sure. Probably there will be a lot of waiting, a lot of symptom care, pain care, and keeping her from getting (or treating any) infections.
Hard to believe we are actually doing this.  One day at a time, right?!

Wednesday, April 06, 2016

Radiation Fractions- uhhh

Well, we launched.

Radiation started yesterday and she did ok.  Tiffany and I cried a bit, talked a lot and prayed even more.  The treatments are broken up into 6 sessions, she's in the middle of session 3 right now, half way done.

They line her up, the doctor checks it out, as does a physicist, crazy huh!?  He walked in the room and said, "Hi, I'm a physicist, I'm going to check out the set up for a minute." I thought to myself, by all means! I always wondered what jobs physicists could get, now I know ;)

The treatment made her nauseous for the first one and by lunch she was throwing up.  After the 2nd session she was throwing up more and her jaw was painful and swollen (a known short-term side-effect. Ice, ice chips to suck on and Tylenol helped a bit. She slept ok at the hotel last night.

We will be at a friends house tonight who are out of town, that should be much more comfortable. And Tiffany will have a place to cook for Abby if she can hold down some buttered noodles.

I'm back home, had to go to the Dr. to check and make sure I didn't have any pneumonia or other contagious stuff and make sure the sinus infection is getting better.  They said I'm fine, just need to take it easier and get better... we'll see how that goes but today I'm going to rest while Vicky and Tiffany take on the radiation machine effects on Abby.

Thanks again for all of your prayers.

Monday, April 04, 2016

T Minus 9: Prayers for Radiation

Just a quick post to update you on the plan, let you know what the schedule for the week is and what you can be thinking about and praying about for Abby & Anna as well as the rest of our family.

We're a bit nervous to get started.  Abby is doing good, not cold, good spirits and fun to have at home.  It's going to be hard to give that up and start this all back up again.  But, pretending that she is well doesn't really work either, so, off we go.  In other news, our house looks like a small pharmacy. Tiffany and I are both on antibiotics for sinus infections, Lily just came down with a chest cold tonight and Anna is still recovering from her last cold.  The focus is now shifting from keeping Abby well to keeping Anna well too!  So, Lily has a room to herself tonight and Anna is in our room on the floor.  Pray she stays well and that the rest of us get better soon!

Schedule and Specifics:
Tomorrow Abby starts Total Body Irradiation (TBI). She has marker all over her torso so they know where to aim and where to not aim as much.  There are a lot of possible long-term side-effects with radiation. And then short term ones too like nausea.  If I could selectively aim the X-Rays at just the cancer cells and miss everything else that would be great, I'm praying that every ray would land on a cancer cells and the rest of the rays wouldn't cause any damage.

  • April 5th, 6th, and 7th: 8am-9am and 2pm-3pm she'll be getting radiation
  • Pray that she will be comfortable while she's in there all by herself.
  • Pray for no longterm side effects from this treatment (the list is below)
Here are the specific side-effects that we are most concerned about: 

  • Pituitary and Thyroid gland damage can occur (they create all of the major hormones like cortisol, growth hormones, sex hormones, and more) -please pray against that damage.
  • Liver and Lung damage (they block out some of the rays to these area because they are more sensitive). Pray against this damage and for a speedy recovery for other organs too.
  • Brain function -can cause you to have a loss of memory, attention, and other cognitive functions can be impacted.
  • Fertility -most girls become infertile after this procedure from damage to the eggs, but some bone marrow transplant survivors still have had children, pray she could have that option somehow in the future.
  • Pray that mouth/intestine sores will be minimal if any and nausea will be minimal too.
  • That mentally she will be peaceful during and after these procedures.
Sickville and beyond:
  • Pray that Anna stays well and Lily gets over this cold quickly.
  • That all of us can sleep well during this next week and beyond.
  • That Tiffany and I can recover soon.
  • That Abby has minimal nausea, pain, sores, and other side-effect from the radiation and Chemo which is on the 8th-11th.
  • That Anna stays well until the transplant (and through recovery too)
That we all will have as much peace as we can, that we can walk in a strength that isn't our own and that we will not doubt or have fear about the coming weeks and months of this journey.

Thanks all,

-The Dad