The Partial Update

Despite only having two days of tests last week, the days felt long and my stress level was creeping up. Tuesday morning started with a blood draw at the SCCA, we only do blood draws at the SCCA when required and this day reminded me why. We checked in and were called back shortly after, the woman was very nice, so nice that I knew she wasn't comfortable doing blood draws on little kids. After what I would describe as the worst two blood draws on record, I had a very upset little girl and I was fuming from the unnecessary trauma. We both did our best to get past our feelings and made our way to the transplant floor. I'm happy to report that Georgia got an A+ on her physical exam. We brought her doctor bag (which is actually a vet bag) complete with a stethoscope which Georgia used on the doctor. She passed all of the GVHD exercise tests and left the appointment smiling after showing her docs how well she can run up and down the hall... per their request. Thursday we were back at the SCCA for oral medicine and nutrition. Georgia shows no signs of GVHD in her mouth and although transplant can delay dental development, we won't really know if this will impact Georgia for several years. Next up, nutrition, this used to be such a stressful appointment, but I knew going in Georgia is doing well. In fact, Georgia has grown 7cm since October!! She now sits nicely in the 50th percentile for both height and weight, how very average... a description that feels amazing! Between needing a feeding tube to gain weight and barely ranking on the charts, Georgia's body has certainly been working hard to make up for lost time. As we were finishing up this appointment the dietician said she would call me about one of her labs, I told her we'd be back for our conference in the morning when she gave me a puzzled look and asked, "are you sure?" As it turns out, our doctor is currently the inpatient attending which means he is at Children's Hospital, not the SCCA. They had rescheduled our review conference for February 8th. I was so frustrated, I wanted to put this behind us so badly, we'd made arrangements for a sleepover that evening and for my sister to attend the conference, for Brian to call into the conference and now we had to wait. We left the SCCA and headed to Children's for the physical therapy evaluation, our last appointment. After showing the therapist all that she had, running, jumping, throwing, resistance tests and climbing, there was no question, she passed with flying colors. Despite the frustration of the postponed conference we still went to my sisters for dinner and a sleepover, Georgia couldn't have been happier - it was a great way to end a stressful week. We had so much fun we stayed almost the entire day Friday too - thanks Auntie and cousins for helping make a stressful week a little easier! Although several important results are still pending I am happy to share that the results thus far look good. A very important one, called chimerism is back, it shows 100% donor cells which is exactly what we want to see. I am focusing on this until I can get the final report in almost two weeks.

Two Years

A celebration of transplant is certainly an odd one, I am so thankful that we were able to get to transplant and now two years beyond, but the feelings around all that we, especially Georgia, has been through feels anything but celebratory.
There are certain things I'll never forget, there was so much chaos in the beginning but I will never forget our doctor walking in to tell us the official diagnosis and that Georgia had about a 50% chance of survival, what as a mother was I supposed to do with that information?  We knew the only chance of beating this was a bone marrow transplant so that is where we set our sights.  Determined as always, we were thankful that her body responded to chemotherapy, some people never get to a place where their body is ready to take that step.  One mother described transplant as, "knocking on deaths door."  I would describe it as knocking on deaths door, praying to God no one answers, then turning to run up the steepest mountain, only to find you are wearing lead boots.  The process is slow and as much as I have wanted and wished we could speed through things, you must respect the process of allowing the body to heal. 
The last week has brought many tears, remembering where we were two years ago and how much Georgia has had to endure.  Some of Georgia's doctors have said that she is too young to remember what happened, she is showing me otherwise.  Recently Georgia asked, "Mama, remember my friends with with the lines, Celah and Hunter?"  Georgia hasn't seen them in over a year but remembers them as her friends and that they both had NG tubes.  Some of this will fade with time but that will only be replaced by questions of what happened and the unanswerable, why?
For me, there are wounds that will never heal, things too painful to ever fully recover from.  This isn't to say that I dwell on them, all of this has certainly taught me to enjoy the simplest of things, my daughters smiling face tops that list.
So today we gave thanks for a few things, Georgia and the miracle that she is, the astounding support from so many that has carried us through, and the person who made so much of this possible, Mr. Germany.
Next week we start in-depth testing at the SCCA but today we are happy, hopeful and so incredibly grateful for Georgia.  Happy two years post transplant my love.

Gimme a two!

She wasn't totally sure why she was getting a cupcake and candle, but she was happy about it!

Yum, she ate every last bite!

January 9th

Two years ago at 4:00pm we checked into Children's Hospital to begin "conditioning" for transplant.  Before leaving home, we listened to the theme song from Rocky and Eye of the Tiger in an effort to boost ourselves up and walk back through those doors.  We had no idea the fire we were walking into, it would have been impossible to understand what what was to come.
Today, we had a relaxing morning, played dolls, picked out paint for the new baby's room and for the first time, I put a little french braid in Georgia's hair.  To say that I am grateful is a massive understatement.  I love you my girl, we've been to hell but we're on our way back.

 

This picture was taken as we were heading out the door to Costco last week.  Georgia chose each piece of her outfit and couldn't have been more pleased with how it all came together.  Needless to say, there were plenty of smiles coming her way on our shopping trip.