After reporting Georgia's stats two days ago I was a little disappointed that her ANC went to zero again yesterday - they said that it would bounce around but you always hope it won't. I was trying not to set my sights too high so when they came in and said her ANC was 91 and her platelets were at 124 I was thrilled!! She is recovering so well the attending said that assuming things continue this way we could plan on going home by the end of the week - this is HUGE! We will need to do another MRI and bone marrow aspirate but can do those as an outpatient. Five weeks ago today we started this nightmare of a roller coaster and the idea of going home for a bit is such a freeing feeling... our "jail" term is almost up!
This afternoon Lynette Huffman Johnson the founder of Soulmination came to take pictures of Georgia. Ironically we participated in a fund raiser for this amazing foundation back in May. Although I initially shied away from the idea of someone taking photos of Georgia I realized that many, many years from now all three of us can look at these photos and remember how we made it through together. http://soulumination.org/home.html

Who says that the perfect accent to Saturday afternoon sweats isn't a tutu... not Georgia!

A big THANK YOU to so many people - our house has been cleaned, we have been brought meals, toys, goodies, balloons and so much love and support. This weekend some dear friends did a little ... well a lot of much needed yard work at our house - thank you, Megan, Tony & Alex!

Before


Just a few leaves

the boys hard at work

Tony & Megan

WOW!

It looks amazing!

This has been a tough week, Georgia has done beautifully, it's me who has been on an emotional roller coaster. Between being frustrated with the doctors, finding out that I'll need to stop breastfeeding, starting to ween but most of all that my Georgia girl is losing her hair. With the bad has come some good, Georgia will now let me pull her to stand, something she stopped shortly before all of this started. She has been happy as a clam all week, putting weight on her left leg, climbing all over the place and has literally started jumping.
This week has had moments that I will treasure forever - Georgia kissing her baby doll, the sheer pride on her face when she has pulled up to stand and when I ask her where her balloons are she looks and points at them.
Watching her lose her hair is hard to explain, logically I know that it's just hair, it will grow back and that it means the chemo is working.. emotionally it's a whole different story, something that I can't totally explain. I know that once all of her hair is gone I will get use to it and she will still be my beautiful girl but there is a reality that comes with seeing all of this happen. Part of me still expects the doctors to come in here and say this has all been a terrible mistake. I know we are getting closer to transplant which scares the hell out of me and I know things will be much harder than what we've been through so far.
The goal of the chemotherapy that Georgia was on is to bring her ANC blood level to zero then slowly her body will start to build new ANC cells, the doctor said to expect her levels to be at zero for about 10 days. Today, the fifth day her ANC has climbed to 20. Two days ago the resident was ready to give Georgia a platelet transfusion because her level was 14 (the threshold is 10) but the attending wanted to hold off... the next day she was at 16 and today, 31.. all on her own. My lovely daughter is simply amazing.

The "Georgia Cure Plan" Blood Drive was put together by a LONG time and dear friend, Miki. There are a few spots left, if you are interested please contact Miki at the number listed below.

Thursday, November 11 · 12:00pm - 6:00pm

Here are the appointment times I have left - please spread the word so we can fill all the time slots! Thank you!!

2 spots for 1:30 / 2 for 2:00 / 2 for 2:15
1 for 3:30 / 1 for 3:45 / 1 for 4:15
2 for 5:00 / 2 for 5:15 / 1 for 5:30
2 for 5:45

SAFEWAY in Issaquah (next to REI)
735 NW Gillman Blvd
Issaquah, WA


please call 425-445-1886 or message me to schedule an appointment.

THANK YOU!

Yesterday morning after being up every two hours (due to our nurse, not Georgia) I woke up to the oncology team coming in our room. they went over their daily numbers then I piped up and asked a question about some chromosomal testing that recently came back. They finally found a chromosomal abnormality that is further confirmation that Georgia has JMML. A piece of her chromosome five broke off and attached to chromosome 13... if this was found throughout her bloodstream that could impact future children that we have. Fortunately they only found this abnormality in her bone marrow which means we are at the same risk as the general population (about 2 per million) and it gives them a marker to track her remission.
After that was discussed I expressed frustration about how I had not been told earlier that I would need to stop breastfeeding. The attending looked at me blankly and said, that's the job of the transplant team. When I asked why it had been discussed for the previous week by several people and no one had bothered to tell me she said, well you have 6-8 weeks to ween her and if you want more information we can arrange for you to have a meeting at the SCCA (outside of the hospital). The new attending (they rotate every couple of weeks) whom I had met just minutes before said, we apologize that it happened this way. I talked about how we discuss how many times I feed her daily, again was met with, we can set up a meeting with you and the SCCA.
After fuming most of the day yesterday, swearing a lot and talking about how much I wanted to get out of here I decided I would take a different approach this morning.
When the team came in today, after numbers were read I said, I don't think I did a very good job at getting my point across yesterday. I understand that Georgia's was a difficult diagnosis, I know the job of this team it to figure out her treatment plan. I understand that my breastfeeding isn't top of mind for you, what frustrates me is that when it was brought to your attention no one was willing to simply walk through the door and tell me. I would never want to do anything to jeopardize her transplant going as smoothly as possible. I also said that being here requires building trust with all of these people who rotate in and out of our room and Georgia's care, some of that has been lost.
Fortunately the old attending was done yesterday and the current attending said she heard me loud and clear yesterday and was sorry that the communication wasn't more clear. I am still mad about this whole situation, but at least I know I have been heard.
Today I met with a lactation specialist to figure out the best way to ween, her suggestion is to pump three times a day.. Oh, sure, no problem (can you hear the sarcasm) I have time to do that! Like everything here, one day at a time.

I was the pregnant woman who didn't push the envelope in what I ate or drank, I called my sister on more than one occasion before ordering at a restaurant. I wanted to be healthy and be prepared so we did a hospital tour and I signed up for several classes. One of those classes was a breastfeeding class. My good friend Julie and I went together and sort of looked at each other like ... well, here we go??!! When Georgia was born she knew exactly what to do, she latched right away and ate for close to an hour.. a natural. Over the months I battled mastitis twice but kept going, had to take some medication and talked to several doctors making sure that it wouldn't effect my breast milk. My plan was to breastfeed for a year, I'd heard that was the best that I could do for her and felt lucky that we were an easy match that way.
Since being in the hospital we have daily discussions about the fact that I am breastfeeding.. I was starting to back away from it at home only doing it before naps and bedtime. Here, with all of the stress and trauma Georgia has been subjected to it has increased. It is a comfort to her and it is how I get her to go to sleep, knowing that comforts me. Everyday during rounds someone reads aloud how many times I breastfed the day before... I have even joked with the doctors that I was planning on stopping at a year but with all that is happening I'll be lucky to be done by the time she's two!
Yesterday we had a new nurse, not new to hospital, just new to us. She asked me how many times I had fed Georgia and made a comment that when she goes to transplant I'll have to stop... What? I said.
Today we have been here 30 days, today the attending heard that this had been brought up with the nurse and that I wasn't happy about it so she stopped by to give us a little more information. Breast milk has white blood cells, when they try and kill off Georgia's existing immune system and give her a new one they can't have my white blood cells (half of the ones that are making her sick) involved in that mix. She said, well we don't have a match yet so you still have about six to eight weeks to ween her. Minutes after the attending left our social worker came in, she knew what had just been discussed and said that several of the doctors had been trying to figure out when to tell me this... WHAT?? Well, that is usually handled by the transplant team I was told. They have know for the past two and a half weeks that Georgia would certainly go to transplant, they have know the entire 30 days that we have been here that Georgia is breastfed and that although she eats food several times a day that is how she is getting the vast majority of her liquid. We discuss DAILY how many times she breastfed the day before.
If this hospital is about doing what is best for the children then how on earth have they not given me the opportunity and the most time available to figure out different ways of comforting her and getting her use to getting more liquid through a cup? How is waiting to tell me this information going to prevent undue stress for my daughter? It is bureaucracy, politics, passing the buck and quite frankly cowardliness from the hospital. The fact that there have been discussions on how and who would share this information with me is pathetic. We have had two attending doctors and have met with a third who specializes in Georgia's type of Leukemia, nothing... two of the three have their own young children... nothing. I have been doing my damnedest to build trust with these people who are poking, prodding, injecting chemo and taking blood from my baby girl - my everything and this is what I get in return.. nothing. All of this comes on the day that her ANC level hit zero and the day after her hair has started falling out, this is so hard - I just want to crumble but know I have to stay strong for my sweet girl. When will this nightmare be over?