Saturday, October 19, 2013

Update...Stem Cell Transplant dates

So early last week our family was in Nashville for Chris' pre-transplant evaluations and tests. We had been contacted earlier by a cousin of a cousin, who lives in Nashville and has children around the ages of our children, who offered to help us whenever we were in Nashville. We took them up on that offer and had them babysit our kids for all the appointments that required me to be with Chris...which ended up being all day Monday. Chris had to fill up TONS of vials with blood for all the necessary labwork, and we met with lots of people who gave us lots of information and tried to answer any questions we could think of including a financial lady, lab technician, nurse, doctor, and social worker.

The financial lady helped us see what our insurance will cover for all the transplant stuff, and what would be our responsibility to pay. The nurse handed us 8 or so packets of material and explained the basics behind the stem cell transplant process and how the scheduling will proceed. This one took the most time, she literally had a 2 and a half page bullet point list of every topic she needed to go over with us. Then we met with the doctor who will be overseeing Chris's treatment during the transplant, and pretty much had nothing to say since the nurse was so thorough, except he gave us a percentage of likelihood that this treatment will render Chris sterile...a 20-30% chance. (That was good news for us! I was expecting a higher likelihood based on how other doctors spoke about it.) Then we met with a social worker who told us more specifics about what kind of housing options are available and went over some requirements of Chris' care-taker (like how the caretaker can't be away from Chris for more than an hour) and explained some available support programs for us.  Then Chris did one of the tests, the pulmonary function test where they gauge how well his lungs are working.  Chris passed with flying colors.  3 or 4 times that day, the people talking to us would comment on our healthy - no alcohol, no smoking, no drugs - lifestyle and comment on how all our clean living is paying off right now.  Pretty cool to see and experience physical evidence of what we've had to mainly take on Faith before.


It was super nice of Chris' cousin's cousin's wife to watch our kids all day and it was awesome that our kids immediately felt comfortable there so much that we left then smiling and laughing and came back to them in the same state.  Another little blessing from Heavenly Father.

We wanted to do something fun as a family that night and give our minds a break from thinking things through so we spent the evening enjoying the hotel's beautiful indoor pool, kiddie pool and hot tub. I think its the first time any of us have gone swimming this summer! (woah, I just now realized that. That's evidence of our crazy and short summer).  Then at 7:00,  I just wanted to order room service and put the kids to bed but Chris found a Rainforest Cafe 2 minutes from our hotel! The kids really enjoyed it and I'm glad we went.


Staying in the nice, fun and beautiful hotel that we did was really made possible by my uncle and his wife who offered us some of their Marriott points! It was such a sweet and thoughtful gesture that came as a total surprise to us. We have such great family!

The next day, we checked out of the hotel early so the kids and I could drop Chris off at Vanderbilt again for some more tests and we drove around looking for something to do.  I ended up taking the kids to Nashville's science adventure center and we spent the morning and afternoon there. While we played with blocks, water, sports games and watched a planetarium movie Chris had an echo cardiogram, EKG, chest x-ray, TB test, and a bone marrow biopsy.  We picked him up in the afternoon, stopped by the bank and a fedex place to print some papers off then headed out for the 5 hour drive home.

We got a lot of information and despite my best attempts to anticipate the longest-possible schedule, what the nurse ended up scheduling for us was a week and a half longer and put Chris in Nashville from Oct 30-December 18. Many of the possible plans I had come up with for child care during that time wouldn't really work with the new schedule especially hearing that the care giver the hospital requires us to provide for Chris can't be away from him for more than an hour.  On the drive home to Mississippi Chris and I racked our brains to come up with some complete options to mull over in the coming week.  We found a breakthrough in that process when we realized we could break up the time in this way: the first 2 weeks of light procedures/prepwork where someone else could be with Chris so I could stay with the kids, then 3 weeks of the heavy, tough stuff where I would be with Chris, followed by the last 2 and a half weeks of hopefully light recovery where someone else can be with Chris.

Balancing Chris' needs, with the kids needs, with my needs -- keeping in mind I'll be 37 weeks pregnant when Dec 18th comes around -- with the unspoken and spoken needs of the many wonderful people who have offered to come help was quite a mental mess.  I used google docs and color coding to try and keep everything straight in my mind. We basically had two plans at this point. Send the kids to Utah for the 3 weeks I am to be with Chris in Nashville or just keep kids here the whole time and fly people in.

We feel like any of the plans will work well and the people involved have all been very kind and flexible and willing to make any of them work. Its just hard to decide on something when it burdens so many people; but, I think Chris and I have picked one that we're both happy with and feel good about, after I convinced Chris to see it my way. :) just kidding... kind of.

3 comments:

Alicia said...

I mentioned this on the family website. I really want to help out somehow. I can come help watch your kids.
My husband has so many questions about the stem cell transplant: is it an auto or an allo? Is it a full myeloablative transplant?
You can email me leashabnel@gmail.com

merilee said...

My thoughts are with you guys at this time Brittney! You are amazing to be able to organize and think through everything necessary and still find time to play with your kids. You and Chris are awesome. I wish we lived closer! xo

Amy said...

I pray for you often. Thanks for posting so I can keep up without bugging you.