Life at Home!

My little firecracker

Oh, I'll go ahead and flush my own line mom

On the move!

Rockin' out with Daddy

Uh, mom we're kind of having a jam session here...

Hello Daddy!

Silly Goose

Hey, that's me!

Day +69

Today we had out second clinic appointment since being discharged from the hospital.. we recently increased her dose of Beclomethazone (low dose steriod) and are still on TPN. The goal was to have her eating increase as well as her weight. Today her weight was the same (alright, down .04) but her appetite has improved over the last couple of days.

When I was pregnant I did my best to eat all organic foods.. you know make smart choices since I was making those choices for more than just myself. Just before Georgia was ready to eat food I took a class, learned about what can be offered when, how to make your own baby food and to instill healthy habits... I laugh at that now because two days ago I couldn't stop smiling as I counted 16 McDonald's french fries go into Georgia's mouth. We have become regulars at the McDonald's drive through... whatever it takes I say!

The decision was made to stay the course right now. We also talked about the potential of a different drug called Sirolilmus, something that has been studied and will quite possibly become part of the new JMML protocol. In some instances this drug has been added instead of Prednisone to control GVHD. Concerning JMML, Sirolimus is part of a new study so right now it's considered a theory that hasn't been validated. We hope to continue to see improvement in Georgia's weight and eating, if not we'll need to talk further about our options. For now, bring on the fries and anything else that is high in calories... easier said than done when you're talking about a 16 month old and eating!

An Evening for Georgia

Tonight an event was held in honor of our family but most of all honoring our sweet baby Georgia and her courageous battle. The idea that so much time was spent putting together every detail, that so many amazing gifts were donated, so much effort was put forth is incredible but the absolutely most astonishing thing of it all is the love and generosity that has been shown to us.

People just want to feel like they are doing something to help is what I kept hearing from my sister and friends when the idea of an auction was first mentioned... I'm not gonna lie, there was an element of it all that felt awkward, being the recipient of something so generous.. but as I let my pride go I continued to be amazed by the help that people were offering.

Tonight I drove to the SCCA to pick up Georgia's TPN, I knew the event was being set up and had been told about some photos of her that had been blown up.. imagining my friends putting these pictures up I still, nearly six months into this journey couldn't believe that the girl in the photos is Georgia, that my daughter is going through this. It felt like this was an event for someone else and that for one reason or another I wasn't able to attend. I headed into the SCCA I ran into our social worker - we chatted a bit and before we parted ways she said, from everything I hear it sounds like Georgia is doing well. It feels good to know that is the sentiment of the folks at the SCCA and I want to pass that message on... this is an uphill battle, one steeper than I could have ever imagined but we're doing it.

I don't know how to impress upon people enough what a difference they are making in our lives.. the sheer goodness that people have, and are willing to give fills me up and makes it easier to carry on.

A special thank you to Sarah, Jayme, Tirza, Meredith, Debbie, Joci, Burnley, Kurt and my sister Leslie for giving their time, energy and skills to An Evening for Georgia.

High, Low and Farewell

When I joined a PEPS (mom's) group we would start each meeting with our "highs" and "lows"... our last 24 hours in the hospital brought one of each. Georgia officially took her first step toward her daddy on March 22nd - definitely a high for all of us. Later that night the nurse hooked up her TPN, an hour or so later we discovered a leak in the "filter" that is used in the tubing... if the TPN can get out, bacteria can get in. Here we were all set to leave the next morning and they are taking blood cultures to check for infection. All of the doctors and nurses that talked about it said they'd never heard of that problem before.. go figure. Two days later and noting has grown back but we are still keeping our fingers crossed as it can take days.

This last stay was hard for me and our nurses knew it.. during transplant one of our favorite night nurses asked, knowing Georgia loves music, if we'd ever heard of Casper Babypants.. we pulled up his website and played his music all through transplant, Nana brought G a CD and we now sing his songs all of the time. When we were readmitted this same nurse said I should contact him to see if he'd come play for Georgia, exhausted I looked at her and said, ya right.. she said no really, why don't I do it? I said go for it. The next day she did and he wrote right back saying he'd be happy to come play for Georgia. About an hour before we checked out of the hospital Chris singer for the band Presidents of the United States and Casper Babypants himself came to our room and played for us. Georgia loved it, I mean really loved it - dancing, clapping and asking for more. Thank you to our fantastic nurse for setting this up and to Chris for performing what we hope will be our farewell concert.

Front row seat

Dancing to the music with Hunter

Checking out the guitar after the concert

More dancing

Thank you Casper!

Day +62

I believe the theme for this stay should be feeling beat up.. it started that way and after yesterday it's looking like it will end that way.

Yesterday Georgia was scheduled to have her new line placed at 10am, Georgia was up just after 8am which was a big change from her usual 11am-12pm wake up time.. she knew something was up. They had a cancellation so we were heading over early.. I couldn't shake the uneasy feeling but chalked it up to doing this alone since Brian was flying. I met with the anesthesiologist, nurse, resident and doctor, they did their checks, I suited up in my sterile attire and walked with Georgia back to the OR. This time they used gas to put her to sleep which meant I had to lie her down, I usually am able to hold her until she is under... lying her down watching her scared face have a mask put over it and screaming until she was asleep was like having a piece of my heart ripped out.. it never gets easier. I was given a pager and said it should take about 30 minutes then she'd go to recovery. Almost an hour went by and I was sick of pacing so I went up to the surgery desk to ask if there was an update... she said, Oh, I paged you a few minutes ago... um well lady I have been all of fifteen feet from your desk so I'm pretty sure you didn't. Anyway I waited in the family conference room for the doctor to come out, when he finally arrived he said that things had gone fine, the line was working and that Georgia was in the recovery room. I headed back to our room and waited for her to arrive. I'd been waiting longer than normal when our nurse came in.. they have to do another xray but she should be down soon. Frustrated I became more antsy, knowing Georgia would be upset waking up in the company of strangers then having two xrays done. Another 20 minutes or so went by and the nurse got another call, they were asking me to come up to recovery because Georgia was so upset and they needed yet one more xray. When I arrived she was so upset, the kind of upset where you can't catch your breath... why didn't they call earlier? I got her snuggled in and asleep just in time for the xray tech to arrive for the third time. I settled her down again and waited for the surgeon to give the ok... instead he came in and said there was a kink in the line and that she'd have to go back to the OR. In my head I was telling myself suck it up, suck it up - you have to listen to what he is saying instead of falling to pieces... he said that they hoped to be able to get the kink out but if they couldn't they'd have to place an entirely new line. We were to wait in the recovery room until the OR was ready.. again. He left and I started to cry.. when will this stop, when will Georgia get to take the easy route, why is this happening to her? I cried quietly as I only had a curtain separating me from the other six or so kids in recovery.. listening to these little people wake up saying mama, I want my mama and owie, owie was horrible.

A short time later the same team of people came to do the same checks prior to surgery, I walked her back and this time was able to hold her until she fell asleep. I'd requested to wait in the recovery area for her this time which they agreed to. I called Brian and my family and cried to everyone, I just want her to be left alone. The doctor came by to let me know they were able to get the kink out and that she was asleep in recovery. After one final xray we were given the ok to head back to our room.

Resilient as ever Georgia was a happy girl by the time we were settled back in our room. We took a nap and twice when she stirred but didn't open her eyes she started signing "all done, all done" so I knew she hadn't forgotten the events of the day.

Last night she was great, walking the halls, waving, wiggling - happy to be free of her PIV. I on the other hand was feeling beat up.

Georgia's appetite slowed yesterday, not surprising with the day she had but we only have until Thursday to show enough steady progress to keep her off of prednazone. Today Georgia is getting her third dose of IVIG, something she is reacting to again.. her hands and feet got red, swollen and itchy as I watched it all travel up her arms and legs it was decided to stop the infusion give her some hydrocortizone and see what happened. Almost immediately her reactions went away but they have started the infusion again wanting to get as much in as possible.

I read a fellow SCCA mom's blog the other night, she talked about walking around a nearby neighborhood, looking at the houses and thinking about the people who reside there... how nice it must be to live a life where this doesn't exists, where everyday you don't walk your baby into a surgery, a treatment, an allergic reaction or a doctors office... where you get live how you choose and be all that your child needs. I miss the simple life that I use to lead and am finding all of the things that Georgia has to endure unbearable.

Day +59

Georgia, yesterday you turned 16 months old - time is still flying. This past month has been one where I have seen a big change in you, talking so much more, mimicking, communicating better and better becoming more and more active all while perfecting your wiggle. You say bye-bye and even said bye bye da da last week. You understand so much that is going on and pick up on just about everything I do. I recently made the mistake of saying no while shaking my finger at something... yep, that's right, now you shake your finger at things and say "mo". When I tell you it's time for night, night you lay your head on the pillow and give a big grin... then are up about two seconds later bouncing around. When we do settle in for sleep I tell you we're going to snuggle.. you grab the blankets and pull them up toward you to snuggle in. You love using your walkers and I am pretty sure if we'd been home for more than nine days you'd be walking on your own. You get a big kick out of standing up not holding onto anything then swaying from side to side. You are certainly still my social girl and are always willing to give someone a wiggle.. they are a hit on the floor and are often requested by nurses and other parents.

Here are several pictures from our current stay:

Walking the halls in our PJ's

You love watching the construction going on outside - you knock

on the window and wave to the workers

Your 2nd of three IV sites - ouch!

Hunter's back! Check out is cool shirt

Always willing to entertain Georgia

Best buds

Hunter showing Georgia how to work a remote control car

Hmm what's this?

Ohh cool stuff

Darn lock!

My ever resilient, amazingly fantastic Georgia

Day +57

Forever changing our focus, late Wednesday we got confirmation from pathology that Georgia has mild upper gut GVHD, primarily seen in her stomach lining and lower esophagus... treatment, steroids. We were told about a randomized research study that uses both the standard dose of 1mg per kg along with a trial dose of 1/2mg per kg - the thought of having her on less sounds better but after reading through the paperwork I had questions.. it said your doctor may choose a lower dose, could we do the lower dose outside of the study? The nurse answered as much as he could but with some questions remaining I asked to talk with our attending. Overall for upper gut GVHD there are two options typically used together from the get go - beclamethazone, a "topical" steroid that Georgia drinks and coats her digestive track.. the other is prednazone, the steroid that terrifies me.. we've seen other kids on this, they can be little crazy people, crying (I mean like wailing crying) all day for no particular reason, they are typically really hungry and have that really round "steroid face". The doc came in and after clarifying a few things he said he'd been thinking, we could start Georgia on just beclamethazone for a few days and see if her eating picks up, if not we'd add the the prednazone.. this is why I love the current attending so much... a plan tailor made for Georgia, what a concept! Success on beclamethazone will mean one thing, eating, we have until Sunday/Monday to make that happen.

With the pressure on I started offering Georgia more and more food immediately... it came with the typical head shake and her saying "mo" (aka no).. I'd move on and try again later. Today we were able to go out on pass and headed to Grammy & Grandpa's house.. I went to take a shower and when I came down they were remarking that she seemed like maybe she was on steroids... beclamethazone isn't really absorbed into the system but I've heard that it can be seen in the little ones. Georgia was happy, just a little turbo. We were able to get her to eat some.. back at the hospital I kept offering and she kept eating - not a ton but certainly more than I've seen in quite a while! I am cautiously optimistic that this will be the answer... prednazone not only scares me for the external factors but there are risks - increased risk of infection, risk of high blood pressure and blood sugar.. there would be chest xrays and close monitoring so if we could avoid it I would be a happy mama.

The big challenge over the last two days has been Georgia's PIV (peripheral IV) by yesterday early morning she was on her third site in two days - they kept blowing out and the nurse said that it was because her TPN was going through it. She said that if they kept up the TPN she'd need a new IV daily. That's ridiculous, I asked her about some options and fortunately the team was willing to go with one of them so she's off TPN until Monday, we're using a less harsh substitute that has fewer calories but can do the job.

I am hoping for a quiet, calorie filled weekend as we wait for Monday when her new central line will be placed. The Infectious Disease Team reviewed Georgia's infection information and said that as long as her cultures continued to be negative we could do a seven day course of the antibiotic, that would mean we could potentially go home Wednesday.

This has certainly been a longer stay than I anticipated but yesterday it became so much more bearable... Hunter is back! Our buddy Hunter is back for another round of treatment and as luck would have it is in the room next door. Georgia was so happy to see him, within a few seconds Hunter had his mom's phone out playing music and they were both wiggling up a storm.

Day +55

Today was long and stressful but I am hoping will ultimately put us on a path to healing Georgia. With the line out and biopsies taken our nurse got a call that Georgia was on her way back to the room, she said she could hear her in the background crying mama.. mama. When she arrived she was none to happy with the addition to her right hand and arm - she was waiving it all around, biting at the board that her hand is on and was howling mad. We finally got her calmed down and she was able to sleep for a couple of hours. By this evening, resilient as ever she was waving and riding her lily pad one handed

Prior to her procedures I talked with the team about how awful the blood draws are and they are working to really limit them between now and when she gets her new line... hopefully only two will be needed. The preliminary findings from the gastrointerologist indicate mild GVHD in her esophagus although we'll have to wait for the pathology results to confirm anything.. likely Thursday. Perhaps this is the reason that Georgia continues to have a cough particularly following eating and taking meds... maybe this is why she doesn't want to eat more than a few bites at a sitting.. and maybe this is good reason not to do an NG tube - putting a tube in an already inflamed, irritated area would not be beneficial right? - you know me... wheels are always turning.

Day +54

I haven't written in a few days feeling beat up and uninspired. When we came back into the hospital I knew about the daily routine of doing blood cultures - each day we waited and each day we were told that the bacteria had grown back. They have tired different doses and different methods of killing this common type of staph but without success. Today during rounds we had our first negative culture, once we've had three negative cultures our 10 to 14 inpatient antibiotic stay will start. Knowing we'd be here for a while longer I decided to go home and pack some things, the first time I have ever gone home while Georgia has been in the hospital. Feeling like we'd finally hit day one of the antibiotics I was cautiously relieved. While I was home I got a call from Brian - the physicians assistant came by, bacteria grew out again. I just melted, why is this happening? Because bacteria continues to grow back they need to take her central line out, they believe this is where the bacteria is sticking.

Tomorrow Georgia is having her rescheduled endoscopy and sigmoidoscopy to look for GVHD so while she is sedated they will pull the line... they will also place a peripheral IV for the time being. She will stay on antibiotics until the cultures don't grow back for three days then they will have to place another line.. surgery. With a peripheral IV things are different, her TPN will be altered and they won't be able to do her daily blood draws from that line, this means that someone from the lab will come by the room each morning, typically around 6am and draw blood from her arm.. we started this process this way and it's hell - the IV has to be protected, it is annoying to her but the blood draws are the worst, my poor little one will be woken up to a needle going into her arm and is older, wiser and stronger now so I can only imagine how heartbreaking it will be while I have to hold her down.

I can't seem to stop crying, I cried all the way back to the hospital, I cried to a nurse once I was back on the floor, and tonight I cried to a bunch of nurses all who know this was the worst case scenario. I just want everyone to leave Georgia alone, she needs a break but the hits just keep on coming.

Day +51

Midnight vitals, 2am meds and blood draw, 4am vitals, 4:30am chest xray and at 7am our nurse came in - Georgia has a bloodstream infection only showing up in her white lumen. My stomach dropped, it really is my fault, the white lumen is the one we use for TPN. The nurse said it is a gram positive bacteria - Georgia had a gram positive blood infection last time we were here.. I got to thinking, although it showed up in her line last time the doctor was adamant that she got it from bacteria in her mouth.

This morning we were put into isolation because they want to see if Georgia has a virus too, we won't know the results of that test until late tomorrow so until then we're in our room, the 8x10 one that we started our transplant stay in. Mid morning there was a knock on our door, the transplant team was ready to round on us - standing outside our room was my favorite attending, one who is warm, kind, insanely intelligent and above all an excellent communicator. Georgia's numbers were read allowed as she looked on and waved at the team. Her labs look good, she'd started an antibiotic for her bloodstream infection and we'd wait on the other results. When the team came into examine her they all commented on how good she looks - this allowed me to take a breath. As we chatted about the infection I had to ask, I said, I know there was some concern about an increased risk of infection going home on TPN... attending looked at me puzzled, he said plenty of kids go home on TPN... I asked, is this bloodstream infection likely to have been caused by line access? He said that this is a very common bacterial infection - one that starts on the skin or mouth.. ah, I let out a breath, feeling some guilt lifted off my shoulders.

Georgia's course of antibiotics will likely be for 10-14 days, all of which will need to be spent inpatient because it's given every six hours. If she doesn't have a fever and is otherwise not at risk we will be able to go on pass... first though we need to wait for the viral cultures to come back.

While were are here she will eventually have the procedure that was scheduled for yesterday, diapers will be weighed to keep track of her ins and outs and the dietitian said she'd give us the weekend then we'd chat on Monday.

The journey thus far has proven there is never a dull moment and you've got to keep your eye on the ball.. I am working on keeping an eye one every single one that I'm juggling.

Day +50

This day certainly didn't go the way I thought it would. This morning I woke up and was able to sneak out of bed without waking Georgia, I got us ready to go and was waiting until the last moment to flush her line and get her dressed. She'd been a little restless through the night and thought to myself, wow, she must be really tired as I saw that it was past 11:30am. I finally woke up a very cranky girl, flushed her line and went to change her diaper... typically Georgia takes a little warming up in the morning but she seemed extra cranky. Within minutes we were in the car on the way to Children's.. I looked back at her, she wasn't perking up the way she usually does, she looked tired... she looked like she didn't feel well. When the nurse took us back to the procedure room I told her almost immediately that Georgia wasn't herself, and that she felt warm. She took her temperature, no fever. We met with the anesthesiologist, he was concerned that she wasn't herself, he took a good look and listen and talked with the gastrointerologist - they decided to call the attending at the SCCA to discuss. It was decided that since this procedure wasn't an immediate need, Georgia's breathing was a bit labored and that her heart rate was high we'd put this off. Before leaving Children's we got a chest xray and headed to the SCCA to see what was going on.

At the SCCA we saw the nurse and physicians assistant, both who know Georgia well - they agreed that she wasn't herself and now she had a low grade fever of 99. They sent us down to the infusion floor where Georgia was to get a fluid bolus and labs drawn. By the time we got down there and were settled in Georgia had a fever of 102. The nurse practitioner came down and said they had a bed ready for us at Children's.

So here I sit, Georgia asleep next to me, settled down after getting some Tylenol at last check her fever was 104.7 and she feels lousy. Out of the hospital just over a week I feel like I've failed her. It's my job to keep her safe and healthy - I know given her fragile immune system this is more than one human can be responsible for but as a mom it's hard not to take on that responsibility.

Day +49

With no time wasted I was contacted today and told that Georgia was scheduled for an endoscopy and a flex sigmoidoscopy (partial colonoscopy) tomorrow afternoon. Part of me knows the drill, where we check in, what will happen pre procedure and who I will talk with, there is another part of my that is scared of what they might find and what that will mean for this next unfamiliar, post transplant, GVHD world.

Day +48

DISCLAIMER:
This is the blog of a mother, one whose love for her daughter is indescribable. It is where I go to vent my frustrations, share my fears and melt down. I am a person who has a positive attitude but finds that can be challenging as I watch my baby on her path to conquer cancer. When I get down I come here to let it go so I can take on what ever is to come the next day. Read with the understanding that my posts are fueled with emotion as I navigate through the obstacle course that life has put in front of us.

And I would like to add a quote that my sister in law sent to me a little while ago, Dr. Seuss sums it up like no other:

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

With that off my chest I will share with you what was a maddening day. This morning I woke Georgia up to go to our first SCCA appointment of the day, we arrived to have her labs drawn at 10am then made our way to the sixth floor to meet with the dietitian. I was not looking forward to this meeting because Georgia's eating had improved for a couple of days then dropped off again. I handed over her dietary logs from the past several days and waited for her critique. She had hoped that Georgia would be eating more by now... she did say that last week her eating was better and that one day she'd taken in over 400 calories. She weighed Georgia which annoyed me - last week she rounded up to 10.5 from 10.489 this week her weight was 10.385 and she said, we'll call that 10.38... all I am asking for is some consistency because wouldn't you know it, not five minutes later she was commenting on how Georgia's weight was down - um, well yes but did you consider the child has had more physical activity in the past week than in the past two months? I'd say being down .1 kg isn't too bad. She asked me what Georgia had eaten today, I laughed and looked at her, well, I said I had to wake her up to come in so she hasn't had anything. I talked to her about the fact that Georgia has all four eye teeth coming in but that I knew things needed to improve. She said she'd talk with the team and I was left with the impression that she wasn't thrilled with the calorie counts but not concerned either.
Georgia and I made it home in time for her to be melting down as I was trying to shove some food in her mouth before getting her a much needed nap before we had to head back to the SCCA for our afternoon clinic appointment. Brian ended up taking her for a drive to get her to sleep which allowed me a little breather.
Back for our clinic appointment we first met with the nurse and physicians assistant. We went over the uneventful days that we'd had since our last appointment then they went to get the attending, one we hadn't met before. Georgia was done, her dressing had to be changed twice and she was tired so she was wailing by the time the attending walked in the room. I barely heard her introduce herself and as I was straining one ear to listen to her I was trying to ignore the loud crying in my other. The woman had been in the room less than two minutes and was telling us that Georgia would need to have an endoscopy and partial colonoscopy to look for GVHD by the end of the week... I'm sorry, I said.. I missed what you just said.. she repeated herself as Brian said he'd take Georgia for a walk so I could talk to the team. My blood boiling I tried to hear what this stranger had to say... she said that "by day 50 she should be eating"... although I didn't ask I'm curious, where exactly do you get that statistic? You assault these little bodies with chemotherapy, damaging taste buds, making them so sick they physically hurt and you think 50 days later all should be dandy in the eating category? How exactly do you know this when the vast majority of these kids feel so lousy you shove a tube up their nose and down their throat to feed them. I let the team know that I had received three different messages from the three different attending physicians that I've seen in a weeks time... when we were rounded on the final time in the hospital I was told that we'd have a few weeks on TPN.. he said few two times then said a couple.. knowing it would matter I asked the inpatient dietitian would we have a few or a couple of weeks to prove her eating. She said that once we were at the SCCA they'd likely give us 3-4 weeks time. Today I was told that they got the message of one week. I asked several times in the hospital if they were concerned about gut GVHD because of her lack of eating... every time I was told no because she didn't show any other signs... today the attending looked at me and almost laughed saying when you have been doing this a long time like me you know that things change daily... funny, this is the first day that I have heard that eating should be at a certain point by a certain day.
This woman then proceeded to tell me about two different "camps" the GVHD and the non-GVHD camps... the statistic of people who DIE (she actually used this word) is the same... she later changed her choice of words to "the bad outcome" when discussing people having the "bad outcome" from effects of GVHD versus those who don't have GVHD and their relapse rate. She told me that Georgia doesn't have an immune system right now, she may have an ANC but she doesn't have an immune system... So, I asked, what kind of risk is there in taking a biopsy from both her stomach and her colon without an immune system... Good question she said, good question I thought, my god, do people never question you?
She went on to tell me that if they do find gut GVHD that there is an algorithm that they follow to treat it... yes, I thought, I know about your algorithms lady I have come to understand that as being an interchangeable word with patient. Georgia is not an algorithm, she has proven time after time that she doesn't typically fit into them.. her diagnosis, her skin condition, her reactions to medication.
Bottom line is this, look, I get it, you need to determine if the reason Georgia isn't eating well is GVHD because if it isn't you will pull back on her immune suppressing drug. What I ask is this, that you don't walk into the room after one conversation with a dietitian who is not spreading a consistent message and tell me what I will be doing with my daughter. Can we acknowledge that Georgia IS eating, not enough but let's give the girl some credit! Lastly, and I did share this with the team... there is a very small part of all of this where I get to just be Georgia's mom, so what I ask is to be included as part of the team.
I will do ANYTHING for my daughter but that doesn't mean I will do EVERYTHING that someone looking at an algorithm wants me to.
We finished the day waiting for Georgia's TPN to be delivered to the SCCA... it wasn't ready after our appointment that ran long, 5pm the pharmacy said, it will be here at 5pm. We ran a quick errand and were back at 5:45pm.. still not ready, I waited as Brian drove Georgia around.. by 6:30pm we had to leave to keep Georgia's medication schedule so just after 8pm the TPN arrived to our house by cab... at least the pharmacy redeemed themselves.
Hoping for a better day tomorrow.

Day +47

It's hard to believe we are closing in on the half way to day 100 mark.. at that point Georgia will have half of an immune system.
All three of us enjoyed a weekend at home - the first in almost eight weeks. We are still working on our routine, we changed our med schedule so now Georgia has two while she's awake, 10am, 6pm and one in the middle of the night... 2am. We enjoyed a weekend free from doctors, appointments and loved being able to enjoy happy hour in our humble abode... Georgia got in on the action too as she loves to "cheers" every chance she gets. There was a lot of dancing this weekend - Georgia is not particular about her dance music, it could be the phone ringing, one of her toys or actual music on the radio - I've got to get her new dance on film, it involves squatting with one knee on the ground and her arms in the air all while rocking back and fourth.
Some other things I have noticed, Georgia took her thermometer and put it to her chest, she clearly picked up on the temperature taking under the arm... also she will point out a bottle of Purell clasp her hands and rock the back and fourth... ahh my little germ-a-phobe.
All in all life is still chaotic but we're able to sneak in things like a walk, a dance party or just a dinner together which feels really good.

Day +43

Life at home is well, utter chaos right now. We are trying to move back into our house while trying to get ourselves into a routine. I have five different alarms set, three on my phone two on an alarm clock to keep us on schedule with Georgia's medication. Giving TPN over 15 hours means that she is awake for several hours while it is running which means following her around with the backpack that houses the pump and fluid... the first night the pump malfunctioned early in the morning but so far pump number two is working alright. We are trying to figure out a schedule with the SCCA to do blood draws for electrolyte and tacrolimus levels, clinic appointments and to pick up her TPN which is not ready until between 4-6pm the day after it is ordered... so far this has meant going to the SCCA daily. In between running around we are cooking anything we think Georgia might eat then cleaning up, then cooking again... oh and trying to get a nap in here and there too. All this while keeping everything cleaner than clean because as we knew and were reminded at our first clinic appointment, Georgia has less of an immune system than she had the last time she was home... to top it off our washing machine broke. There is not a minute in the day where I don't feel like something needs to be done and the pressure of the voice in the back of my head that says, don't screw this up. We will get to a place that some of this becomes second nature but we're not there yet.

What really matters:

Cytogenetics - all donor cells

Peripheral smear - no blasts

Chimerism study - 100% donor

Tri Lineage - all donor cells


And Georgia, she is visibly so happy to be home.

Day +41

Some days I felt like I would never be able to write this post, the one that says we are officially going home, the transplant is done and we're on the road back to a new version of our former life. Today after a quick trip home to drop some things off we got back to the hospital and ran into our nurse practitioner... she said "there had been a development"... I must have looked panicked because she quickly said, no, no a good development.. the hospital needs your bed so we are sending you home tonight! Ha, I thought, after so many days wondering if we'd ever get home they were kicking us out! We happily agreed to be out by shift change this evening. We took a walk with our buddies Channel and Hunter - I think Georgia knew we were going home, she was cruising the halls with her walker grinning from ear to ear.
We still have a long way to go, but being on the other side of transplant feels good. It all started with numbers, when we were taken from xray to the emergency room 148 days ago they did a blood draw and looked at her numbers... white cells were too high and we began to hear words like tumor, oncology and chemotherapy. Everyday that we've been in the hospital we've reviewed Georgia's numbers, we've watched them fall and rise again.. during this most recent stay I have taken note of some other numbers...

50 days in the hospital

8 days of chemotherapy

1 bone marrow transplant

2 red blood cell transfusions

20 (approximately) platelet transfusions

1 bloodstream infection

1 case of late VOD

6 days in the PICU

3 different heavy pain medications - morphine, diloted and methadone

2 liver ultrasounds

10 cm lost around Georgia's belly from fluid retention

1 bone marrow aspirate

6 different rooms within Children's Hospital

5 chest xrays

6 days in isolation

6 new teeth - two molars are completely through, all four eye teeth have made their way to the surface.

I've been told there is a high likelihood that we'll spend another night or two at Children's due to fever or infection so although I told Georgia that we'll be back to say hello but not for sleepovers I know it's possible... all we can do it the best we can do.

As we packed up this evening I got words of encouragement from several nurses. I remember our first nights in the hospital back in October, looking at these same nurses wanting nothing to do with them and now I find myself knowing that I will miss many of them - they have been my sanity check, sounding board and occasionally a shoulder to cry on, it would be impossible to have made it here today without them.
Georgia's TPN is running, tomorrow we have our first post transplant appointment at the SCCA, and I am looking forward to sleeping in my bed. There is a huge part of me that can't believe we are here, I always knew we'd make it but it feels surreal to close this monumental chapter.