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.

My sweet Georgia girl, words can't begin to describe the love I have for you. I have known for most of my life that I wanted to be a mom but had no idea the amount of love that would fill me up, the kind that makes your heart hurt just a little. From the minute I met you, you have changed my life for the better. You've always been one to share your opinion, you are almost always happy and you're funny! You are social, waving to everyone you see, you love music and dancing. You have started to say uh-oh and correctly identify us as mama and dada. You have eight teeth and are working on four more! Since being home from the hospital you have started to cruise furniture and are enjoying your mobility again.
In the past year you have been to Oregon, Montana, Arizona, Hawaii and California too if you count being at the airport.. not bad for such a short time!
Today we celebrated with a little party with Grammy & Grandpa, you helped open your presents and seemed to enjoy your usual place in the spotlight. So many people sent love and birthday wishes, we only wished we could have celebrated with all of them... next year.
Georgia Claudia, without a doubt, you are the best thing that's ever happened to me. Happy Birthday baby girl.

Grandpa & Grammy with the birthday girl

In her new chair from cousins Blake & Lauren

I can blow this party horn!

Even with a restricted diet we came up with a birthday "cake"

What's this?

Oh yeah!

Yum!

This is good!

Enjoying one of your birthday gifts

Hello!

One year of Georgia - big party or not I still went ahead and made a "year in review" of Georgia.. she has changed so much from a new born to a big one year old girl!

Needless to say today was long, we arrived at Children's at 7:30am and Georgia was discharged by about 10:30am then we waited, ate, waited, napped, waited until mama couldn't wait anymore so I called and asked when we would hear something. About an hour later I got a call from the nurse practitioner on our team to let me know that she didn't have any information but that the oncology, hematology, orthopedic and radiology folks were meeting to review Georgia's scan, my stomach sank, if there was nothing there, then there wouldn't be anything to meet about. I was told that our head oncologist would be calling either later tonight or in the morning.. we waited some more then the phone rang. The gist is this - the mass is still there, perhaps slightly smaller but there none the less. There is a fluid pocket in the mass which is often seen when cells have died. To determine if the cells in the mass are alive or dead Georgia will need to have a third biopsy done. Our oncologist is working on getting a hold of the orthopedic surgeon who did Georgia's initial and most invasive biopsy, he is very highly regarded and we hope that he'll be able to do it this time around. Likely this will happen within a weeks time.
Assuming the cells are dead then we stay on track for transplant - some details of that, although tentative became clearer this evening. Typically with an AML solid mass radiation is done on the specific site prior to transplant, they are planning on 11 doses on Georgia's leg. From there we are looking at about six days of chemotherapy, a day of rest then transplant, if all goes according to the tentative plan Georgia will receive new bone marrow just after the first of the year.
I don't know how I feel, I wanted it to just be gone and it isn't but a mass the same size that is dead is better than a smaller mass that has living cells. Radiation comes with some big concerns, exactly where is the tumor on her leg - on or near a growth plate? Our oncologist said that it didn't look like it but gave the discalimer that she certainly wasn't an orthopedic specialist. Radiation can weaken the bone so there will be conversation in the future about what all of this means. When she was going over the proposed schedule she said, you'd be home for the holidays... yes, I thought but right now that doesn't seem like a big win, I just want to get this over with, waiting through the holidays while Georgia is getting out patient radiation doesn't exactly put me in the holiday spirit. Mostly I'm just so tired, life exausts me right now and I don't see an end to that any time soon.

I've spent the day wound so tight I thought I might burst - it feels like so much is riding on the MRI and bone marrow aspirate that Georgia is having done tomorrow. Brian got home this morning which I thought would ease my fears and take my mind off of the obvious but no such luck. Late in the day I went to the store, a little break after several days on my own.. I thought maybe I could breathe and make grocery shopping a distraction, it didn't work either. I found myself wandering the isles unable to focus on the task at hand, feeling more uptight than ever. We have every reason to believe that tomorrow will go well, Georgia is pulling up on everything, bouncing on her legs, moving from furniture to toy and back again, she's crawling, kicking and loving it all - I just know there aren't any guarantees. What we know is that the course of treatment thus far has worked no matter what tomorrow shows, Georgia is so much more physically active than she was six weeks ago. I never waiver on if we will get through this, I just don't know how rocky the road is going to be.

Today we had our first clinic appointment, a blood draw then a visit with the doctor to review the numbers - Georgia has once again passed with flying colors.. her ANC was up to 932! The doctor said she was very pleased with all of her blood levels.
She is scheduled to have her MRI and bone marrow aspirate on Wednesday morning - please, please send positive prayers, thoughts, vibes and juju... we can use every bit of it! We want to see that the tumor is completely gone from her leg so we can stay home until transplant.
Some very good news is that they have both a cord and donor match for Georgia! I am starting to understand that the donor match (person) versus the cord (banked umbilical cord) is the preferred method. Georgia's donor match is a 10 out of 10!! There is still testing to be done on this person, physical exams, their final consent and timing all has to work out but we are moving along in the process which is good.

Life at home is an adjustment, I so badly want to slip back into what was our normal routine. There is a lot of pressure to do things right - by my standards, for Georgia. Her lines have to be flushed once a day making sure not to introduce any bacteria in the process - this is challenging to do on your own with an almost one year old.. if my hand touches something other than her line once it's been sterilized I have to start over. The house needs to be clean, Georgia has to take a bath everyday which involves covering her Hickman line to protect it from any water getting in, she needs to take her meds and have her temperature taken twice a day - so far it hasn't been a problem that we can't go anywhere... there isn't any time!

I am happy to report that Georgia is eating really well and pulling herself up on anything and everything.. I saw her move from one piece of furniture to the next for the first time last night.. this girl isn't wasting any time. My little mover was enjoying the music tonight, doing a little dance (yes, that's Lady Gaga you hear).. with all the seriousness of what's happening we have to keep some things light!

The words Home Sweet Home have never rung so true. What a day - Just after 7am I was woken up by the resident oncologist whispering Mrs. Handsaker... I looked at her a little startled and she said I just wanted to tell you the good news, Georgia's labs just came back and she's over 200. I wanted to leap out of bed and hug her! A few minutes later our nurse came in and told me that not only had she met the 200 mark, she jumped from 68 to 240.
We were up and going, peeling down the dozens upon dozens of cards that I had posted in our room, packing up so many wonderful toys, food and lots of paperwork. My dad came to help move us home because Brian is on a trip. He passed a volunteer in the lobby and she commented on how much stuff he was hauling out, he said, yes, they have been her for almost six weeks... she said, are you sure it wasn't six years?!
After rounds were done, we'd met with the pharmacist the social worker, child life specialist and nurse we were free to go. When I walked to the doors of the SCCA unit where we'd said goodbye to daddy several times I looked at Georgia and pointed to the door... she pointed too. This time I got to push the button and we BOTH walked out.
Leaving was a little emotional, Georgia was outside for the first time in weeks, I strapped her in her car seat and we were on our way home. She was so tired that she fell asleep. Once we were here I took her inside and straight to her room in hopes of getting her back to sleep.. no such luck. She looked around, then looked at me, and looked around again. I showed her the house and she seemed to remember, pointing in the direction she wanted to go.
My dad helps us move back in, re-cleaned the floors in an effort to keep me sane and we celebrated with two beers and one sippy cup.
After he left I locked the door behind him, turned on the music and danced around the living room with Georgia and started to cry. The magnitude of what we have been through is just starting to seep in. When Georgia and I first got home there was a glimpse of a second where I thought, was this all just a bad dream? We have come a long way in nearly six weeks and have a rough road ahead but we will conquer it just the same.
Last night the quiet was almost loud, no nurses station, no IV beeping, just peace. We both slept well and were so happy to wake up here this morning... we made breakfast, I had coffee all while in the comfort of home.
We will have clinic visits twice a week to keep an eye on her blood counts and either late next week or early the following we'll have another MRI and bone marrow aspirate - just like for her ANC we need all of the prayers and positive thoughts that the tumor in her leg is gone so we can stay home until transplant. Today I will start flushing her line, giving her meds, taking her temperature twice a day and keeping her in the most germ free environment possible. I will need to find a balance between being paranoid about germs and keeping Georgia safe, but as my dad said last night in this situation there really isn't a way to be too safe.

Let's go dolly

This is about half of the stuff we brought home

She did it. ANC was 240 this morning... we are outta here!!!

I think it would have been better if the doctor hadn't told me that we might be out of here by the end of the week, when I heard that Georgia's ANC was down to 68 today I became so frustrated... I just want to go home!! Please say some prayers that her numbers hit 200 tomorrow - We need to get out of AML Jail!

Today I was trained on how to flush Georgia's central line, it has to be done once a day, it will get easier with practice I'm sure but seems really scary to do it on my own.

Here are a few pics of how the three jailbirds have been passing the time over the last several days..

In hospital life with an up comes a down... we are still on looking good numbers wise, although her ANC was down to 84 today no one seemed to think that would get us off course. Yesterday was the first day that I was joyful about something other than Georgia just being Georgia... today I picked up the literature about transplant. There is so much to learn and so many scary things ahead. We met with a nurse today to get us ready to go home - we have to learn a new way of life... It is absolutely critically important that Georgia stay healthy before she goes to transplant. I will take her temperature twice a day, give her meds, have clinic appointment twice a week. She can't be in crowds - like a grocery store, we have to thoroughly clean our house once a week to prevent bacteria, dust and viruses. Tomorrow I will learn how to flush her central line which has to be done once a day and change the dressing weekly... all things that professionally trained medical staff has been doing. We really need to limit the amount of people that Georgia is exposed to, because of this we simply can't have visitors. I have to walk a fine line between keeping Georgia safe and keeping myself sane.
I am looking forward to things that use to seem like simple pleasures - going for a walk, heck just going outside on a daily basis. Cooking my own food... drinking wine! Fingers crossed that this will all be happening in the next couple of days.

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?