The next several weeks are starting to take shape and our plan for transplant is coming together. We received word that the intake process will start next Wednesday and run over a two week period. It will involve blood work, a physical, an EKG, another bone marrow aspirate, chest x-ray.. we will meet with the attending transplant doctor, dental and nutritional specialists all in an effort to basically prove that Georgia is ready for transplant. Once all the test results are in we will review them with the doctors right around the end of December. The plan is to have us check back into the hospital on January 1st, start seven days of conditioning (chemotherapy) to rid Georgia of her current bone marrow and any cancer cells that are still present, she'll have a day of rest and if all goes accordingly she will receive her new bone marrow on January 10th.
In going over the schedule with our SCCA coordinator I asked about the donor. She told me that Georgia actually has FOUR 10/10 donor matches but they have selected one based on some additional information. She said this person knows they have been identified as a match for a baby and this week will be told that they have indeed been selected as the donor of choice. She was able to tell me that the donor is a 25 year old male who has the same blood type.. this news was encouraging as the doctors had told us early on young men were typically the best candidates. Nothing is set in stone, he will still have to have a physical and ultimately agree to be the donor but I have faith that this is all going to come together.
When I was reading over the material we just received regarding the transplant process I flipped to one sheet that read in bold print.. Welcome to the Pediatric Transplant Program at the SCCA! I am wondering if the exclamation point is supposed to get us psyched up.. the pep rally approach isn't really working for me but I know we are in the best hands, people literally come here from around the world. I guess I will try and think of it as.. Good Riddance JMML, We're Moving On!

The past two days have felt long and have come with an overwhelming amount of information. Yesterday my stomach was in knots all day anticipating our meeting with the oncology radiologist - why are they talking about radiation on her leg if the biopsy was free from tumor cells, will it effect her growth plate, why does she have to be put under essentially 11 days in a row... all of these questions and more were swirling around in my mind. We arrived and waited, walked around, and waited, I thought about what questions I wanted to ask, and waited.. the doctors were over an hour late seeing us. I had never met the radiologist so when two men walked in the room I assumed one of them was the Dr. Douglas we were meeting with.. they came in, made a quick introduction ( both residents) and stared talking about radiation, Georgia's condition, recent biopsy and finally we looked at him and said, so you're not suggesting radiation? We had been told by several attending doctors over the last couple of weeks that the recommendation that had been made by the SCCA transplant team was radiation, we were told dates she would receive radiation, the dose, and now was it possible that my wish, my prayer was coming true that they were telling us that they weren't recommending it.. yes. After a very confusing conversation with the residents we were finally able to talk with the head oncology radiologist, he said the benefits didn't out way the risks, that they were very pleased to see the biopsy results and how active Georgia is, that radiation to her leg would almost certainly shorten her leg somewhat... for the first time since all of this began I finally heard a doctor say "if this were my child"... he said, if this were my child I would not do radiation.
Today we had a long meeting at the SCCA, our first visit of many to that location. People come from around the world to receive transplants here, they literally gave the first transplant ever and the office is about 20 minutes from our house. The waiting room was filled with adults, not the lively group that I am use to seeing on the SCCA floor of Children's Hospital. We were shown to a room and in came one of the attending doctors on the Transplant Team. She was very nice, calm and seemed to asses us as she came in the room. I felt like we went into this meeting knowing quite a bit of information - or should I say more plainly, we'd already heard the big and bad details so I didn't have to put my head between my knees like the first time I'd heard them.
From a very high level transplant is like a reset button - Georgia's immune system isn't what we'd like so we're trading it in for a better model so to speak. For myself and Brian, we need to know it on every level - there will be seven days of intensive chemotherapy to rid her body of her current bone marrow, the new bone marrow will have to in graft over a long period of time, she will be on immune suppressant drugs for about a year (up to three years) the doctors will look for signs of graft versus leukemia (a good condition) and graft versus host (a bad condition). Every single thing in this process comes with a possible side effect - too many to list or remember. There are drugs that counteract the side effects of other drugs, pain medication, nausea medication, IV drugs and on and on. When we are done and home again we will resume life as it is now, in somewhat of a bubble, a cold that would give one kid a little sniffle could land Georgia in the ICU. We will be trained on giving Georgia IV drugs, she will be very closely monitored for the first year and assuming all goes smoothly the time between visits will become longer.
All of this heavy, heartbreaking information and Georgia was letting out her loud happy screams, smiling, waving and doing her latest trick - when I say hooray she raises both hands up over her head... she is thankfully totally oblivious to everything that is being discussed. Someday, long from now maybe she'll read this and understand that we will do anything, walk through fire if that's what it takes to cure our baby girl.
The AML tumor cells are dead and gone... watch out JMML, you're next.

After days of waiting, multiple stain tests and lots of prayers we got the phone call that we were hoping for, the mass on Georgia's leg shows no live tumor cells.. none, zero. Finally some news to celebrate! This confirmation means that our next step is transplant.
This week has been exhausting and it's only Tuesday. Monday we met with the genetics oncologist and a genetic counselor to go over our family history. They want to do one additional genetics test to see if Georgia has a condition that rarely, but sometimes presents with JMML and JXG skin condition that Georgia has. I thought I had become more familiar or maybe just more comfortable with the medical jargon that is thrown around... genetics is another story. We were discussing cells, genes, number and letter sequences which all left my head spinning and I finally asked the genetic counselor... so what are we hoping for here? She pointed to a picture, rattled off something that I would swear was in a foreign language and I just nodded, I decided that I'll ask questions when we have more answers - 6-8 weeks from now.
Tomorrow we have a consultation with the oncology radiologist to discuss the suggestion of radiation as a part of preparation for transplant, Thursday is a consultation with the SCCA to talk about transplant where we'll meet with the pediatrician, nurse and financial consultant.
I am so thankful for the ability to exhale today, feel joyous about something and celebrate, tomorrow it's time to put my game face back on and ask the tough questions and have some scary conversations on a new topic - radiation.

The usual hustle and bustle of the first big holiday of the season wasn't felt here this year. We are still doing our very best to keep Georgia as healthy as humanly possible before her transplant so we decided to have it just be the three of us this year. We were lucky enough to have had our families drop off most of the food for Thanksgiving dinner so we were only left to cook a turkey and mashed potatoes. As we sat down to dinner Brian and I agreed that we should definitely say grace, something that is usually reserved for holidays in our house and typically said by other family members... we looked at each other and both said, you do it. I think we both knew it really meant something this year... I ended up with the honors and thanked God for Georgia, family, friends and even strangers who have been so supportive, the doctors, nurses and for her donor...we gave thanks for keeping our family strong. All of this felt good and right but there was also the feeling of a giant elephant in the room.. I want to be thankful for the health of my child but she has cancer - I am not thankful for that. I want to be sharing thanks with my family while I watch Georgia play with her cousins, but she can't be around them, I want to be thankful for not giving us more than we can handle but it often feels like that is exactly what we have.. I was true in what I was thankful for but there is certainly a part of me that is very mad and is still asking why. I keep hearing that Georgia won't remember or that Georgia doesn't know any different - I will always remember and I know different for her.
When Georgia gave us the "all done" sign after dinner I took her out of her highchair.. she looked at daddy, he did something funny and Georgia threw her head back and laughed.. an all teeth showing laugh, this continued for the next several minutes.. that is the memory I will hold onto until we can make better ones next year.

Relaxing in her favorite chair

A little daddy, daughter time

All bundled up for a Thanksgiving day walk

It's a marathon, not a sprint. We've heard those words a lot since Georgia was diagnosed and I am starting to understand why. It feels like we've been in battle for a long time but in reality we've barely begun. I am so thankful to be home from the hospital but feel like we are constantly going back there... last Monday was a clinic appointment, Wednesday an MRI and bone aspirate and Friday a consult with the orthopedic surgeon. This week we've been in to learn how to do dressing changes for her line and had a clinic appointment and found out today that Georgia is going to have her third biopsy tomorrow at 7pm.. we were an add on. Poor little bug has to stop eating at 11am tomorrow.
The biopsy is being done to (hopefully) determine that there are only dead cells left. From there we are working on scheduling a consultation with the transplant team and oncology radiologist to talk about the somewhat controversial radiation that has been suggested as part of preparation for transplant. The SCCA won't schedule our intake meeting until we decide if we are doing the radiation or not - they don't want to set dates with the donor only to change them later... basically they don't want to aggravate the donor and have them back out - this I appreciate!
I talked to someone at Children's Hospital at least five different times today, even when we're not there I can't get away from that place.
All of this and we haven't even had the meeting to discuss the transplant, let alone start the testing or meet with the doctors, dietitians, pharmacists and the rest of the transplant team.. marathon. I've always hated running.

This is an overdue THANK YOU! Miki and I go back a long time, we met sophomore year of high school and became instant friends, she was really like a third sister to Leslie and me. Miki's mom Geri helped us take care of my mom in the last months of her life - something I have never properly thanked her for, she took on so much and was incredibly supportive of our family. Miki and I went to the same college and joined the same sorority, slowly our lives drifted apart but we always seemed to cross paths in one way or another over the years... I went to her wedding and she went to mine then another couple of years would go by. When everything started with Georgia I heard from Miki almost immediately, offering support and encouraging words. Earlier this month Miki pulled off a very successful blood drive that she put together on her own. She got the word out, filled the slots and even if Georgia doesn't see any of the blood donated 120 people will benefit from what she's done . Thank you to all who showed up and donated, I was amazed by some of the names that I saw on our card, people are unbelievably kind and are truly making a difference. My dear Miki.. thank you my friend, thank you.

Miki's son Trace, Miki and Austin a high school friend

When the world renown orthopedic surgeon can fit you into his schedule last minute you have to go.. even if that's on your baby's first birthday. I was disappointed and tried to change the appointment when they called yesterday but didn't have any luck. Dr. Conrad or Chappy as he is known has been following Georgia's case and was the doctor who did her original biopsy. We saw him again today - he is kind, very direct and excellent at what he does. He disagreed with the oncologists saying that the mass in Georgia's leg was definitely smaller and that her bone had started to regenerate - he had us get an xray and sure enough we looked and compared the two, new bone has most certainly started to fill in where there was destruction before. This means that what has been "prescribed" so far has worked. He was undecided on if he agreed with the radiation regimen and said he would be talking to others in the field to see what was best. We will work with our whole team to figure out the next steps but today for the first time in a while felt like good news.