Day +12

Textbook. This is not a word that you often aspire to hear about your child. Most parents will indulge in calling their child advanced or exceptional every once in a while but textbook isn't quite the same. Since we arrived at Children's hospital for the first time almost four months ago we have heard a lot of words like puzzling, mystery and rare or phrases like we've never seen that before, or how unusual. Today after rounds our attending transplant doc came to take a better look at Georgia as she had been sleeping when he'd come by before. Georgia was sitting on my lap playing, pointing, smiling. Our little girl has emerged from the wrath of transplant and we are seeing longer glimpses of her every day. After assessing her he said that he's very happy with her progress and looked at me... textbook he said, I know it's not something you hear very often when it's concerning Georgia but so far her transplant has been textbook. I looked back at him and said... well, it's our new German way.
Yesterday ended up being a bit of a mess with all of the infusions she had to get. She made it through platelets and the diuretic just fine then we moved on to the IVIG. At certain points during the infusion they up the rate at which its given, by the third upping Georgia started to break out in a rash... the exact same thing happened last time. The doc took a look and they decided to press on at the slower rate.. this turned our four hour infusion into a eight hour one. I closely monitored her skin and the rash started to change, she started coughing and was becoming more irritable, the night doc took a look... let's keep going. Finally about a half hour later Georgia was about to come out of her skin, itching her eyes so much they were swollen, finally we were told they would stop. Although better, her rash is still being closely monitored because it is so similar to signs of GVHD... this accompanied by her normal skin rash which is improving but far from gone complicates the picture. Overnight she got red blood cells which ended shortly before the morning nurse came in to tell me she would be getting platelets again... ugh, it's always something.
Through all of this Georgia has been such a trooper, I know she is sick and tired of having her blood pressure and temperature taken constantly and there is always someone who is looking her over for a rash or pushing on her belly. All for good reason, but who wants to be bothered round the clock? Today her ANC was up to 431 and the rest of her immune system numbers are coming in nicely. Last time we waited for her ANC it bounced around from 20 to zero and back up... this time we've started at full speed... must be an autobahn thing.

Day +11

Dear world, thank you for not only listening but hearing me... Georgia has an ANC of 380! Last night before she went to bed I played some music for her as I got ready for bed.. I looked over and saw her do her little wiggle dance... I didn't know you were doing the ANC dance Georgia.. it worked!
Today has been busy, Georgia got platelets again this morning, a dose of lasix after that to hopefully release some of the fluids that she is retaining and we're about to start IVIG which will infuse over a minimum of 4 hours pending no reaction like last time. Tonight she'll get red blood cells that will also take about 4 hours to infuse.
Georgia is still really tired and isn't feeling great but it seems like we are rounding the bend. She will be considered engrafted once her ANC has been 500+ for 3 days. Next hurdle is looking for signs of GVHD, as her new bone marrow wakes up in its new home the expectation is that it will recognize that it is in a new place but we think that once it has an opportunity to look around that marrow will be saying home sweet home.
When you think of Georgia during this next phase envision her new and old systems working together in perfect harmony for optimum health.. now and forever after.

Day +10

In the past two days every bit of good news seems to come with some bad. Early, early yesterday morning Georgia's fever broke. Morning rounds came with a mixed jury on if she should have the CT scan or not. The attending looked at several factors and said we didn't need to have it done... today. He said if her fever goes back up they would try and get her in over the weekend but if that couldn't happen they would just start her on a new anti-fungal medicine and do the scan on Monday. Luckily the fever has stayed at bay, her temperature has been up and down but nothing that is actually considered a fever.
They were able to narrow in on the type of bacteria she is fighting in her blood, a type of strep that seems to be responding well to the new antibiotic. Yesterday Georgia seemed better, she hadn't throw up in 24 hours and she had little windows where she would engage with people versus just sleeping. I have been trying to find the delicate balance of getting her the right amount of pain meds without causing her to itch. We upped her dose of diloted yesterday but by night time she was itching again, she was also grabbing at her throat so I was concerned that she was having a bigger reaction. I noticed a new sort of wheezing sound that was different from the gravely sound of mucositis. Upon examination this morning it was determined that she has Stridor which is an inflammation in the upper airway. There is concern for someone Georgia's age having stridor because she has such a small airway, so far her oxygen saturation has stayed really good so my hope is that day 10 is our peak and things will improve from here. Georgia was supposed to get IVIG today which is a blood product, something that we got at the SCCA, something that she reacted to because of the stridor that has been postponed until tomorrow. We tried a new pain/anti itch medication called nalbuphine with the diloted which seems to be helping but my poor little bug is pretty miserable. Georgia received her second dose of Albumen which is a protien in the blood, when this level is low it can leak out into the body and cause puffiness. Her dose yesterday raised her level but not as much as they'd like so she got more today. She also got her (I believe) 11th infusion of platelets today, something commonly given during transplant, even more so if fevers are present. Her weight was up this morning which actually a bad thing, they don't want her body retaining fluids that would make her organs work harder, we are outside of the obvious window where weight gain would be a possible sign of VOD (veno occlusive disease) which impacts the liver but we're not totally out of the woods either - something that will continue to be monitored. Last dose of methotrexate, post transplant chemo tomorrow.
If you're listening world... We're done, our plate is full, we have all that we can handle... it's time to move on.

Day +8

This journey continues to get harder everyday. Each time I think we're looking up something slams us back to the agonizing reality that is currently our life. Georgia has had a fever since Monday, slowly creeping higher and higher. At 3:30am this morning our nurse woke me up to let me know that one of the blood cultures that had been drawn the day before came back positive for bacteria. They started her immediately on a bigger more specific antibiotic. The hope was that the fever would break and essentially problem solved... all day each time I heard the beep of the thermometer I thought it must be lower, quite the opposite at last check Georgia's fever was almost 103. She is scheduled for a CT scan tomorrow to rule out a possible fungal infection, although it doesn't sound like the docs think that is what's going on it is something they have to rule out. A CT scan means sedation, I can't tell you how much I do not want to walk my baby into another procedure room and hold her until she goes limp in my arms... enough already, dear god this is enough!
I have spent the day holding her listening so her little grunts that let me know she is in pain, we upped her pain medication drip and gave her several bolus doses today. Her new pain medication seems to cause some of the same problems, the drip is alright but the bolus doses leave her so itchy she seems worse off. Tonight she was upset and I realized that I didn't recognize her cry, it was one that reminded me of a newborn. Everyone here keeps reminding me that we are in the thick of it, the worst of the worst and in the same breath the docs say she is still doing well.
I am beyond exausted but feel the need to stay on top of what is going on and understand what the next day brings, I think the doctors are sick of me asking so many questions but I am too tired to care.

Day +6

In just a few years she won't want me to do this... when she's a teenager she'd rather be anywhere but right here... this is what I was thinking as I sat in the rocking chair in our room and rocked Georgia for the better part of five hours today. She was so snuggled up in my arms, totally relaxed and sleeping.
Last night was better, still up sick several times but better. I'd been trying to figure out for the past couple of days why Georgia kept itching.. the morphine had to be out of her system. Just before turning off the computer last night I got an email with what turned out to be the right answer. Over the weekend Georgia was switched from a saline IV drip to a dextrose one basically salt water to sugar water. What the email said was that dextrose is typically made from a corn base - Georgia doesn't do well with corn. I asked our nurse if we could switch back and she said she'd check with the overnight doc but didn't see why that would be a problem. Finally she had peace, she stopped the tossing and turning during the night she was able to totally relax when she slept. Today she was very calm all day, I was able to get out of the room for a little bit and was happy that we didn't spend the entire day in bed. To the two women behind the email answer, you know who you are... thank you, and to our nurse, thanks for always being so supportive of our family.
Georgia is still battling a fever so when you think of her send cool thoughts.. we need this to go away.

Day +5

Leap and the net will appear, everything happens for a reason, positive thoughts bring positive results... these are phrases that I live by but right now would like to yell WHERE IS THE NET? THERE CAN'T POSSIBLY BE A REASON and I PUT IN THE THOUGHTS WHERE ARE MY RESULTS? But more than anything I want to scream STOP, this is too hard on her. This process is so much harder than I anticipated. Georgia sailed through AML chemo which I was told was somewhat similar to this regimen but this is infinitely harder.
Again last night there was no sleep, her heart rate was elevated and they couldn't figure out why.. she got extra fluids, no help, extra pain meds, no help. At about 7am this morning she spiked a fever and has had it all day. The only good news is that with a fever you qualify for Tylenol, this has helped her teething and sore throat throughout the day.
Georgia and I spent literally all day in bed, she would sleep between getting sick and I would try to between visits from the transplant team, pain team, oral care team and our normal vital checks. If I moved an inch she was grabbing for me so I just stayed, willing to do anything to make her feel better. This evening when I thought she was feeling better I pointed to the door and asked if she wanted to go out, she hesitated then pointed. We made it half way through our normal loop and she got sick so we crawled back in bed and she slept. Overnight is always the hardest time for Georgia, I can't figure out why but know for myself that when I'm sick I always feel worse at night. I had a meltdown this evening after she got sick, I just held her and rocked her and told her how sorry I am.
Tonight has shown some improvement, I was able to leave the room without a meltdown, she played with daddy and we even Skyped with Auntie Leslie. The highlight was watching her pull every single tissue out of the box and hand them one by one to Brian and I... and when one of our favorite nurses came is she was so kind to offer one to her as well.
I haven't lost my optimistic slant and have never wavered even one iota on if things will be just fine but man this is hard.

Day +4

Today is day +4 but that doesn't seem to account for the other 10 that we've been here.. two weeks ago we checked in. Next to Georgia being diagnosed today has been my hardest day at Children's hospital.
Georgia had a really rough night throwing up all night, each time looking at me shaking her head no and saying mama. She doesn't understand what's going on but she doesn't like it. Her voice is raspy and as she is sleeping now I can her the mucositis in her chest. She doesn't have mouth sores right now but they say that mucositis can effect any place along her digestive track and the docs are certain that she has it. The rapidly dividing cells in your digestive track replenish themselves often to keep your gut healthy, after chemo those cells aren't able to do their job. Georgia will have to wait until she engrafts to start that rebuilding process. They have told us that somewhere between day +7-10 is usually the worst so we've got a few days ahead of us.
As if she didn't have enough going on Georgia was biting on her thumb today and I noticed some blood, after a look turns out she has two upper molars coming in... really?
We switched her pain medication so the itching doesn't seem to be a problem but she is still pretty restless. I am hoping for some sleep tonight. Georgia and I share a hospital bed, she is always a cuddler but lately she needs me to be wrapped around her to be able to sleep and if I move she's grabbing for me. Tonight I rocked her as we listened to Ray LaMontange's You are the best thing. I keep telling her that tomorrow will be better, someday soon that promise will be true.
Here are some pictures of hospital life over the past few days...

The gift

If you look closely you can see Georgia's name

Our monstrosity of an IV pole

Georgia during her six hour nap

First ride post transplant on the "Autobahn"

My tan little lady on day +2

Day +3

One day at a time sounds like almost a luxury at this point, I am doing my best to not project even as much as a few hours into the future let alone a full day. Two days ago when Georgia took a six hour nap and I was told that she may very well do that until she engrafts (approximately 2-3 weeks from now) I thought I might lose my mind. Yesterday was a much better day, she was happy, playing, gave a few waves and I successfully caught a smile. Ahh, I thought ok, she's back. Today has been a mixed bag.. we got a dose of Synagis which is an RSV immunization and methotrexate which chemo that she gets day 1,3,6 and 11 post transplant. I don't know if it was the additions of these to her normal daily cocktail but something sent her into an itching frenzy, the poor girl looked like she was going to come out of her skin. We gave her benadryl... no change, they gave her another anti histamine, no change. The next suggestion was to give her a different kind of drug that is more of an anti inflammatory... I said how about we stop the morphine because we know that can cause itching? This was met with a well I think we should try adding this other drug... again, I would like to stop the morphine (she is on a really low dose) for now because she is exhausted... this conversation was happening as Georgia was on my lap, crying and unable to sit still because she was itching so much. Ok, we'll give that a try... approximately 10 minutes later she was asleep in my arms. About 30 minutes later our nurse came in and was about to hook up another med, she said the team thinks she should have that different drug just in case... all of a sudden I felt my stomach on fire.. I reiterated that I wanted to wait and see how she was when she woke up, if she was still itchy she wouldn't be sound asleep right now... this was in no way our nurses fault, she is wonderful, and I tried to "not shoot the messenger" .. after she walked out of the room I could feel my heart about to beat our of my chest, I was pissed. All I ask is that you listen to me as Georgia's mom, the person who knows her better than anyone else on this planet. Admittedly I hate giving Georgia any medication, this is something that I will never be comfortable with and really grapple with daily. I don't have a say in about 99% of what she has to take so on this one I wanted everyone to back off she needed some peace then we'll figure the rest of it out. She slept for about two hours and woke up a little cranky, still slightly itchy we have now resumed the morphine drip as an "experiment" (not the words you want associated with your child) so we'll see how it goes.
I don't think anyone is trying to go directly against my wishes, or just wants to do what they want to do.. I think we just come from polar opposite starting places.

Day +1

Unless you have lived this process it is so hard to accurately describe the ups and downs, the anxiety and sheer heartache that it brings. Georgia slept better last night but woke up tired. My girl who is usually pointing at the door the minute her eyes are open just wanted to sit on my lap. The team did rounds and I took her for a spin around the floor but less than an hour and a half after she'd gotten up she was having trouble keeping her eyes open. I laid down with her and she was asleep almost instantly. This is so out of character for Georgia that I had the nurse and a doctor check her out. They both said she was fine and basically said this is to be expected, her body has been so beat up by the "conditioning" for transplant that she is beyond exhausted.
It's 4:45pm and Georgia has been asleep since noon. I know that her body needs sleep to heal, I know this was to be expected but I want to see my spunky little girl, the one who is social, who is smiling and who loves to do her wiggle dance. Instead what I see is our nurse getting our next IV pole ready, she has so many medications that we have to get a bigger one. There is nothing remotely easy about this process, it is so different than the round of chemotherapy that we did. The last time we were here she got sick but waved right through it, her eating dipped but there wasn't a need to IV nutrition and we didn't need pain medication.
I know that things will get better but right now it's hard to see the forest through the trees.

Transplant

We did it... she did it. At 1:01am on Georgia's 14 month birthday she started receiving her new bone marrow, the process was slow and steady as there was a large volume. The goal for her is to get somewhere between 15-20ml of bone marrow per her size, 10kg. The nurse took vitals every 15 minutes then upped the rate of infusion and continued to monitor her. Eventually her blood pressure went up and the docs made the call that it was time to be done. At 6:58am the process was complete, Georgia got approximately 23ml/kg - a fantastic achievement.
When the bone marrow arrived I felt excited, that we had arrived in this moment, I felt calm knowing our donor was a 10 out of 10 match and that this is what will make Georgia healthy again.
Throughout the night we were dealing with some effects of the chemo, which is still causing her nausea and some pain. This is something the doctors told us to expect but hearing about something and living it feel very different. She was sick several times through the night so when the transplant was done I was looking forward to some rest. The day nurse came in to check her vitals and said she was going to call our transplant team nurse practitioner because Georgia's heartbeat seemed irregular. The day brought an EKG, chest xray and a visit from the attending cardiologist. Everyone seems to agree they think it is caused by the volume that she got but to be safe they are monitoring her for 24 hours... as of tonight things look better. The good news is that all of her lab results look great and the transplant attending said she is one strong girl and is doing really well.
We've all spent the day exhausted, napping in between visits from various hospital staff but by this afternoon Georgia was a happy girl, she looks like she snuck out and went tanning - her skin is pink and healthy. Her red blood cell count went from 23 to 54 overnight! We started her on continuous doses of an anti nausea medication and morphine for the pain. It's hard to put her on morphine, albeit a really small dose, but that is what my mom was on. She is happier and seems comfortable and was able to eat some tonight which is always a good thing.
Today has been somewhat of a roller coaster, dealing with the side effects, making sure her heart is ok, most of all though knowing we have hit a huge milestone but feeling like we have a long road ahead - so many people are really excited about this and I get that but knowing your child is on morphine, some IV nutrition, immune suppressants and anti nausea medications is far from exciting to say the least. Everyone here has been so supportive of us and all truly care about Georgia, that makes this journey a little easier.
We have a giant step behind us but there is no time to waste.. it's time to forge ahead.

The countdown is on... the bone marrow is on the early flight (hand carried) will land at midnight, make a stop at the SCCA and will be here around 1am.
I think that the number one and nine are lucky ones for Georgia.. she was born on 11/19/09 and will be receiving her new bone marrow on 1/19/11.
The nurses made a sign for Georgia and we did a little decorating of our own... we're ready, good things are happening.

Team Georgia, our family and a shout out to our hero Mr. Germany

Today is a better day. Last night Georgia's temperature was up but she didn't technically spike a fever and she had a fairly restful night. This afternoon much to my surprise she started eating again! We have been bringing Georgia's food in (thanks Grammy & Grandpa) but today when her food tray arrived I thought what the heck, I showed her the food and just left it sitting in my lap with her and all of a sudden she stared to eat... noting like hospital food to get your appetite back on track!
The team rounded this morning and ironically were all wearing purple.. the attending, nurse practitioner, dietitian, social worker... and Georgia happen to be wearing a purple dress too... signs of cancer survival everywhere! They all acknowleged that she looked really good given all that was going on.
When I was awake in the middle of the night I couldn't help but wonder what time our donor was having his surgery... Germany is eight hours ahead so by the time we were up and going no doubt things where under way if not already finished. The team said that our cells will arrive either on a midnight or 2am flight, they will then go to the SCCA to be processed to a volume appropriate for Georgia's size then the actual transplant will take place. Technically it will happen tomorrow which is Georgia's 14 month birthday.
I have to acknowledge our donor, I think about where I was at 25 years old, far from donating bone marrow to say the least. I can't find the right words to express the amount of gratitude we have for him, for the gift of a new healthy start he is giving to my heart and soul.. my Georgia girl.

I'm not gonna lie, the past day and half has been really hard. Last night Georgia became nauseous and was sick through the night, this morning she had a fever but fortunately it quickly went away on its own but tonight its back. My little bug doesn't want to eat and feels rotten.
As her mom all I want to do it take the discomfort away, I want to be done with this... I want to never have had to start. I hate this for her.
Right now the world seems like an unforgivably cruel place, to have any of this go on is awful but to a baby, it's complete insanity. I feel so bad that there isn't anything I can do for her, I am suppose to be able to fix her hurts, to make things better but all I can do is sit an watch nurses hook up medicine to her IV pole. This isn't how young life should be.
We were able to move rooms today so I am trying to see that as a fresh start, I am hoping that Georgia feels better here, not only health wise but energy wise, it's bigger, we've set up a play area and now need to find some decorations to brighten things up.
Tomorrow is transplant day but that won't actually happen until tomorrow night, or possibly in the middle of the night. I know it is the start of a new healthy immune system and I keep telling myself that to be done with all of this we have to start, but sometimes I can't help but be really sad that any of this is happening.

And today we did a slight exhale... at 10:15am we finished our last dose of chemotherapy, next up is a day of rest then our new bone marrow! Grammy said it perfectly this morning, today is the last day of out with the old then we move on to in with the new!
Yesterday Georgia had another histamine reaction to the chemo, her eyes were red and watery so we gave her some benadryl, she took a nap and was doing well by late afternoon. Today the last chemo didn't seem to have a big impact other than her appetite. Over the last week Georgia's appetite has dwindled a bit but hung on... enough so that we have so far avoided IV nutrition. This afternoon she ate a decent meal given what she is going through and we hope to get more in before tomorrow. No doubt the chemo makes her less hungry but she is also on a liter of fluids a day... that's bound to fill up a 22 pound little lady. The heavy fluids stop tomorrow afternoon so I am hopeful that we'll see at least some of her appetite return.
Chemotherapy is a tricky thing, yes, we have taken the last dose but the next 7-10 days are critical as her rapidly dividing cells haven't had a chance to replenish and her blood levels are dropping. Last time we were here we were told "when" she gets mouth sores and "when" she gets a fever... it never happened. I haven't lost sight of the fact that these are three totally different chemo therapies but I also am well aware that we aren't dealing with your average 13 month old... Georgia girl, it's time to show em whose boss!

Today started off really well, we heard the attending say "are you sure we aren't giving this girl a placebo?" as she was smiling at the team during rounds.
This afternoon things changed, Georgia started a new chemo at 1pm and by 1:30 she was sneezing and had red watery eyes... we let the nurse know about the change and within minutes Georgia was hysterical, nothing would calm her down. As a mother all you want it to make any hurt go away from your child but I didn't know what was wrong. They ended up giving her something to calm her down which was a relief in the moment but as a watched her show signs of being somewhat drugged I realized that cuts almost as deep as knowing she was in pain.
One of the team members came and checked her out, by that point she was calm so she was able to get a good look at her. We heard from the nurses and the transplant team something that we are all too familiar with... "we've never seen a reaction like this"... it's no ones fault, it just seems to be where we reside... puzzling.
Georgia has another round of the same tomorrow then we move on to the last one. This process is difficult, as soon as you make it over a hurdle there is a new one right in front of you. Once chemo ends we wait for the potential effects to show up 7-10 days later, by that point we are into our transplant which requires a whole other set of things to look out for. One day at a time turned into one hour today. No doubt that challenges lay ahead, and no doubt that we'll weather the storm.

Alright folks, get ready to step up your game... tomorrow starts a new chemo that they assure me will make her nauseous, the one after that they say will cause mouth sores so we need more visualizing than ever.. imagine a protective layer over her whole body, organs, digestive track.. all of it except the cancer cells. If you're still there JMML the time has come, you are no longer welcome!
This morning the transplant team rounded as Georgia was eating breakfast... rib eye steak to be exact! This girl had steak, yams, butter and quinoa for breakfast and smiled at them it was almost as if she was saying.. "oh did someone say I wasn't feeling well?" The team was very nice and said... I quote "so far she has done beautifully" We'll take it!
Today is Brian's birthday, not exactly the snowboarding day he had last year but a happy girl makes for a happy daddy. Happy Birthday Brian... next year, I'm thinking tropical!

Yesterday as I was feeding Georgia we had our door open and I spotted a couple listening to the Oncology team report on their child outside of their room. I kept having to tell myself to look away, this couple looked so dazed, in total shock and so intently listening to what the doctors were telling them. I don't know this family, I couldn't hear what the doctors were saying but I looked at them and knew that is exactly how Brian and I looked just over three months ago. I felt sad for them because I so remember being blindsided. It made me thankful that if we have to go through this that we're past that stage.
Georgia still seems to be tolerating the chemo well and although they increased her dose and IV fluid is still eating pretty well. I am feeling exhausted, we have a nurse coming in our room at 8pm, 10pm, 12am, 1:30am, 2am, 4am and 7:30am to hook up chemo and take vitals... I try and help as much as I can so Georgia stays asleep. I am gearing up for less sleep, on Friday we start our next chemo for two days which comes with required diaper changes every 1-2 hours round the clock, the last chemo is the same and that continues for 24 hours after chemo stops so that's four days, fortunately Brian will be here to help but it's exhausting for all of us.
Georgia's skin rash, called JXG and almost as rare as JMML is talked about quite a bit - no one knows if it will get better or worse with transplant because they have never transplanted someone with it. It definitely got worse with the last round of chemo so they had dermatology come take a look for tracking purposes. The dermatology resident was a little too chipper for my taste, all excited to take pictures of her for their files. They suggested that Georgia be checked out by an eye doctor because JXG can also be seen in the eyes. Yesterday we went to have her checked... I forgot how incredibly annoying doctors can be when they see something they haven't seen before.. they literally get excited about you child's condition. We were asked if they too could take a picture of Georgia for their files. The good news is that her eyes looked good and her vision is normal the bad news is mama was highly irritated. Eventually her skin condition will go away, if that's all she was dealing with they wouldn't do a thing, it's benign and doesn't bother her.
If Georgia is awake she wants to be out visiting with everyone and her new favorite pastime is riding her little mermaid "car" while we push... round and round we go all the while she is honking the little horn and doing a little wiggle dance, my daughter is fantastic!

Keep up the good work folks... today was a good day! I'll admit yesterday it was really hard coming back here - my heart and my head were swimming in fear, sadness and dread but my gut was calm, I made that my focus as we made our way back to the third floor. I was disappointed that we got a TINY room but we are first on the list for a bigger one. Georgia took about an hour to warm up then she was laying on the charm that all of the nurses were use to. I hate to admit it but I can see that she is happy here - able to be social, see other kids, have visitors all day long, my social girl is eating it up.
Transplant comes with some new not so fun additions... we have to write down everything she eats, she is on more medications but the biggest annoyance is that she has to be weighed in the middle of the night. They want to have her weight by rounds in the morning and for good reason, they are closely monitoring her fluid in take and out put so it's critical that they keep a close eye but for me I'm not gonna lie, it a big pain.
Georgia was really restless last night, keenly aware that we were in a new place, not use to the midnight and 4am vitals and the chatter outside our door. When she got her first dose of chemo this morning I started visualizing it only going where it should and leaving the rest of her little body alone.. I can't tell you how much comfort it brought to know that so many people were doing the same. She gets this type of chemo every six hours so we're half way through our third dose.. fourth one starts at 2am. So far she has done really well, she had a great appetite today, smiled and flirted with the transplant team and had a ball with the nurses. They closely monitored her blood levels today drawing her blood six times between dose one and two... they decided to up the amount of chemo that she gets overnight and will be checking her blood the same way again tomorrow to achieve the right balance for her size and diagnosis.
I know there are going to be good days and bad but one things for sure, I am going to take them one at a time.

Our bags are packed, we've listened to the Rocky theme song and Eye of the Tiger... I can't believe it's time. My mom use to say 80% of life is just showing up... we'll life, we're here... let's do this!

We're in need of a little help from our friends...

As we prepare to go back to the hospital so many people have asked if there is anything they can do to help so I figured out a way that you can. At 8am on Monday morning Georgia starts chemotherapy, the first four days she will get it four times a day, then days 5-7 she will get it once a day. Our request is this, when you think of Georgia getting her chemotherapy imagine it only attacking the cancer cells.. leaving the rest of her body alone. My step mom gave me a good image, we want the chemo to go to her bone marrow so imagine her long bones a different color than the rest of her body... or imagine the cancer cells as sticky so the chemo will stick to them and wash over the rest of her body leaving it unscathed. Georgia is too young to visualize this for herself but there is proof that this is effective so we can all do this for her.

Here is a paragraph from an article that I found on visualization:


The power of visualization is so strong that is has been found to influence our physiology at a microbiological level. Cancer patients taught to practice visualization of tumors shrinking and cancer cells dying as an adjunct to chemotherapy, got well at a significantly higher rate than a control group receiving only chemotherapy. The literature is full of examples of controlled studies where visualization has been used to enhance both physiology and performance.

Georgia has had a very busy week... learning new things! She is able to stand on her own for several seconds at a time, has started using her toy walker and started saying "bubble" - she'll blow them too if you put the little wand up to her mouth... and saying butter or "bubber" as she likes to call one of her favorite foods and this morning we heard a very clear "hi". This girl is on a roll!

Such a big girl!

Yesterday we had our "Data Review Conference" at the SCCA to go over all of the test results from the past couple of weeks and sign our final consent forms before checking back into the hospital. We dropped Georgia off at Grammy & Grandpa's house so we could focus on the meeting and get any of your last questions answered.
The conference was good in the sense that all of Georgia's test results look good... chest xray, echo cardiogram, dental exam, blood work, all of it. Her lab results show that some of the JMML markers look slightly better, some slightly worse but all enough for everyone to feel confident that this is what we need to do. We were given sheets on the three different types of chemotherapy that she will get during her "conditioning" as they call it. We went over the likely and less likely but possible side effects, then we were done. We walked to the elevator a bit dazed.. that's it, next stop transplant, I can't believe the time has come.
Even though we both wanted to race as fast as we could back to my parents house to hold Georgia we took the opportunity to grab a drink somewhere first. We spotted a little French bistro and thought that would do the trick.. parking was a zoo but we finally found a spot on a side street. We walked hand in hand out to the main road and there across the street was Cafe Flora, a restaurant that always reminds me of my mom, that was where we needed to go. Over 15 years ago my mom had half her liver removed at Swedish hospital, follow up tests showed a short time later a large growth on her liver and the doctors told her there was a 95% chance it was cancer regrowth. She went in for her appointment to confirm but was told that it was actually her liver regenerating, they had never seen a liver regenerate that fast. To celebrate a group gathered at Cafe Flora.
We walked in the restaurant and let the hostess know that we only had time for a quick drink, she showed us to a table in the atrium, the same place we'd celebrated so many years ago. I told Brian about the celebration we'd had with my mom and so many of her friends, I told him how we'd all hung spoons from our noses and how joyful it was. We raised our glasses and Brian said, "to Georgia" our eyes welled up with tears and we took a drink. We talked about how we can do this, it's going to be hard but we can do it, we don't need to set any records we will take as much time as Georgia needs to do this and be done with it. Before we left for good luck we both took our spoons and hung them from our noses... we can do this.

As Sunday draws closer I find myself enjoying all of the simple things that being home allows for... I really feel how comfortable my mattress is, I make sure to have a beer or glass of wine every night, we're going for a lot of walks and appreciating that I am able to take just a couple of steps between my refrigerator and my kitchen table. It is so hard to believe that three months ago today all of this began. I remember talking to Brian on the way to Children's hospital that day, saying we were going for an xray.. he asked if he should meet us there and I said "by the time you get there we'll be on our way home.." I have never in my life been so blindsided. I think about all that Georgia has been through, how she was hoarse from crying so much, that she had seven different attempts at three IV sites, how our entire world became unrecognizable and words that I had tried hard to forget, words like malignant, chemotherapy and cancer were finding their way back into my life.
As we gear up to go back into the hospital I am trying to put on a brave face for Georgia but instead find myself telling her that just because I'm crying it doesn't mean I don't believe everything is going to be ok - I know it will be.. in the same breath I want to beg my 13 month old daughter for forgiveness, tell her that I am so sorry she has to go through chemotherapy again. I believe, I know with all of my heart and soul that Georgia is going to come through this just fine, she will be healthy again and free from Leukemia... how we have to get there is what I'm scared of.
Tonight we played our "Georgia Dance Music" cd that Grammy made for us... we did lots and lots of twirling... you can't do that when you're hooked up to an IV so we're getting in some extra twirls in now until we can again.

When I was pregnant I signed up for a PEPS group knowing how much by sister had enjoyed meeting other moms with kids the same age I thought I would be fun to experience that myself. I remember going to our first meeting, everyone telling their labor story, we started meeting for walks and I always looked forward to the meetings each week. When we were in the hospital I got so much support in many different ways from all of these women... those who'd I'd met only a few months earlier - each one of them knew what it felt like to be a first time mom, each one of them knew Georgia. Shortly after we arrived home Sandee dropped off a quilt that she'd made and each of the kids had put their hand print on.. there was one empty square in the middle for Georgia's hand. The quilt is amazing, each fabric was thoughtfully picked out to remind us of angles, family, healing and cancer survivors and of course all of our buddies that we can't wait to play with again. Thank you to all of the moms and babes and especially Sandee for making this for us, it is proudly displayed on the playroom wall.

New Year's Eve day we drove up to the pass to get out of town, see the snow and put our new camera to use! It felt good to get away and Brian couldn't wait to show Georgia the "Magic Carpet" at Alpental - it's a little covered moving carpet for the beginners. Whenever he goes up to the mountain he always takes his last run on St. Bernard, it's the bunny chair... every time he comes home he tells me how Georgia's chair was running and he did one run for her. If he has anything to do with it she'll be on skis next winter.. even when we were staying in the hospital he spotted a tiny pair of pink skis in the nearby sports store. I hope you like snow sports Georgia because daddy has big plans for you!

Checking out the Magic Carpet