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.