Sunny Days

Our house sits up off the street, Georgia loves to look out the living room window and will let me know when the mailman or the "P" truck (UPS) is coming, mostly though she looks to see if our neighbors are out playing.  Anytime Gretchen pulls in their driveway I hear Georgia gasp with excitement, "Sadie's mom home, Gretchen home.. go out, say hi!!!" is usually how it goes - she loves them.  Saturday late afternoon I heard this familiar gasp and I looked out to see Gretchen and the kids, Sadie and Jack playing.  We made our way over and our quick hello turned into a full fledged play date, there were balls bouncing, running, hide and seek and lots of smiling faces.  Georgia was particularly smitten with Jack that afternoon sticking close by his side during hide and seek.  It all felt so normal and made me so happy.  We can't wait to have more of this, thanks to our wonderful neighbors, we all had a ball.

 Jack & Georgia counting

 No peaking!

 Off on an adventure

 Three little cuties

Georgia still smitten with Jack

Go Team!

Marathon is a word that annoys me, it's one the medical community uses to describe my life, I'm not a runner, I think I've been clear on that.  Recently I was told that Georgia was bringing inspiration to some runners who are a part of Team In Training to raise money for blood cancers... now this kind of marathon is something I can get behind. 
Some of the folks at the Leukemia & Lymphoma Society have been following Georgia's story, one of the board members and TNT coaches asked if Georgia and I would come and meet with his team before a practice run.  This team is training for the Eugene Marathon on April 29th.
We'd been emailing about details before the last MRI, I then let him know I wasn't sure if we'd be able to come, we'd been thrown for a loop and would need to wait and see what happened at our orthopedics appointment.  The response was one with not only understanding but an offer of support, he wrote, tomorrow we have one of our longest training runs of the season (16 – 18 miles) and we will dedicate the run to Georgia and your family!  With the extra boost of support we made it through our appointment and were able to meet the team early on Saturday before their run.  I was asked to talk about our story, to be honest I don't totally remember what I said, diagnosis, my incredible daughter and some rambling in between, I finished by thanking everyone for raising money, because although I am thankful there is a treatment for this disease what I've seen is unacceptable.
Thank you for having us TNT and thanks for all that you are doing - we wish you the best of luck with your marathon!

Chappie Dog

This week marked the first day of spring and as I look outside now the sun is shining.  I am so thankful to report that this is a direct reflection of our week!
Tuesday we had our appointment at the SCCA.  Georgia's weight was up, she's gained about 3/4 of a pound in a month and has grown an inch since January, she is height/weight proportionate and in the 10th percentile for both.  The team had all good things to say about her progress and we'll start a three month prednisone taper in May.
Today we had our appointment with Chappie.  I tired to remind Georgia that she'd seen him before, "remember your Chappie dog that you got for your birthday?"  Georgia had to been seen on her first birthday by Chappie, her reward was a darling stuffed dog we named Chappie.  Georgia was none to fond of the x-rays they took but recovered quickly. 
One of the moms I met early on in the hospital told me that their family decided a long time ago that when you have to wait for what feels like an eternity in clinic rooms anything that isn't locked up is fair game - we've adopted this philosophy.  After a quick Purell of the white board markers I turned Georgia loose, this kept her entertained until Chappie arrived.
When the door opened I looked at Georgia and said, "this is Chappie, can you say hi?"  She looked at me and said "Chappie dog?' in a very confused voice.  I explained the story and everyone had a good laugh, Chappie said that's one of the nicest compliments he's received.
He sat down and pulled up today's x-ray and past MRI's, he only had good things to say.  He is confident that Georgia has a "tiny" bone cyst, said her femur growth plate looks great and is very pleased with how much her femur has healed.  His feeling is that in about three years her femur will look close to normal if not totally normal.  His recommendation is to do a repeat x-ray (not MRI!!!) in five months then follow it by doing an x-ray once a year.  Brian asked about watching for potential pain in her foot, Chappie replied, "call me, but I won't believe you."  The appointment finished by Chappie hugging both Brian and I and Georgia receiving her THIRD toy of the day.
I am so thankful, we have certainly spent our fair share of time in dark places but this week feels like we are making forward motion, an idea that is very fragile but most certainly possible.

During a potty break this evening Georgia and I

discussed what the doctors had to say:

14 Months Post Transplant

Georgia,
I just put you down for a nap, this after sitting together, eating lunch and laughing so hard all of your milk came pouring out your mouth - what a difference 14 months makes.  I was describing you the other day and I think I've finally found a phrase that works, you are a giant soul in a tiny body.  I can't really compare you to other kids your age because, well we don't spend time with many kids.  All I know is that you are decidedly two in many circumstances but there is something more, something deeper and all knowing about you.  Without a doubt life over the last 17 months has matured you in so many ways but there is also some other indescribable thing about you.
You are still my snuggle girl and are sweet beyond words, daddy and I love your big hugs and hearing you say "love you!"  We recently set up your own room and when you climbed up on the bed you looked around and said "nice bed" in a very matter of fact voice.  You continue to be a little comedian, scrunching up your nose and laughing when you know you're being funny.  You're favorite song is still ABC's and when daddy or I sing it to you, you always said "nice job!" when we're done.
My mission in life is to keep you healthy and make you happy.. if I can make you half as happy as you make me than I'm doing alright.  Happy 28 months old and 14 months post transplant, you are loved beyond words.

 Georgia's park accessories, (my) coach purse and sunglasses



Put Up Your Dukes

This week was supposed to be one that ended with us feeling like we had a big hurdle behind us but instead we've only discovered one more. 

The message I received from Georgia's oncologist on Tuesday evening had Brian and I breathing a sigh of relief, the conversation I had with her Thursday left my adrenaline pumping.  Thursday afternoon my phone rang, the dreaded 987-000, Children's Hospital.  When I picked up the phone our scheduler was on the other end, calling to get Georgia set up for her next MRI which would include sedation.. instantly I felt my heart pound and adrenaline flow.  The last I'd heard there was hope that Georgia wouldn't need to be sedated again.. then I heard her say the SCCA wanted her to have the MRI before our appointment next week, heart pounding faster, why, what am I missing, is this more urgent than I thought?  Many of the questions I had she couldn't answer but assured me our oncologist would call me that evening.  The MRI was scheduled for Thursday afternoon and we hung up. 

My heart continued to pound and I couldn't calm myself down, I couldn't shake the overwhelming feeling of wanting to yell at everyone to leave Georgia alone!

That evening the phone rang again with the same dreaded number and I knew it was our doctor.  We had our first conversation about the MRI results.  For the first time since we started this journey almost 18 months ago I said to her, "from what I read on the internet..." this is not something I do, the internet is a dangerous place and one I do not count on for accurate information but I'd wanted to understand more about benign bone cysts.  I said that from everything I'd read diagnosis is typically done using plain x-ray, not an MRI.  Essentially she said she wasn't the expert and would touch base with the orthopedic doctor to see what his thoughts were.  She then said that the radiologist and the orthopedic doc differ in opinion on what this is, and there again my heart was pounding.  We finished our conversation talking about the reason the MRI happened in the first place, Georgia's femur.  She said is looks the same, that there are abnormalities in both of her legs, likely caused by the leukemia and the chemotherapy.  My heart sank, no one wants to hear that damage has been done to their child.  This disease and in turn the treatment have scared my daughters body and that makes me unbelievably sad.

This morning I heard my phone ringing and saw Children's was calling again, hello, I said, "Alison" the voice said, "Chappie Conrad."  Chappie Conrad is our orthopedic doctor, very well known to be an expert in his field and a no B.S. kind of guy.  I had a honest conversation with him about what he believes is a benign bone cyst.  He said that it is very uncommon for a malignancy to move down the limb and that the spot that showed up on the MRI is not typical for a malignancy.  He agreed that the next step should be an x-ray followed up by an MRI in three months.  He also wants to get an x-ray of Georgia's growth plate on her femur to make sure she is growing properly.  Kids growth is often slowed by transplant, but he assured me most catch up within two to three years.  We are scheduled to see him next Friday afternoon.

This week I was so quickly thrown back into the what ifs and wanting to negotiate my soul with God.  I have spent much of it in fight or flight mode and had to come to terms with the fact that "flight" isn't an option.. so to anything and everything that may stand in the way of Georgia's complete and total health, we're not only here to fight, we're here to win.

MRI Review

I had my phone glued to me all day waiting for a call.  During Georgia's nap I turned the ringer down and wouldn't you know it, I heard the phone too late and wasn't able to get to it in time. 
Our doctor's message started by saying, I think I hopefully have some good news, the orthopedic surgeon reviewed the scan and thinks the abnormality is likely a benign bone cyst.  The next step is to have an MRI on her ankle to get a closer look.  She also said that she'd added on some lab work that you would sometimes see disease in the bone marrow and they were "stone cold normal".  She is very hopeful this is nothing. 
Although we still need to have an MRI to confirm, Brian and I both feel lighter, holding on to her clean labs and expert eye of the orthopedic surgeon as our guide.  Thank you for your continued prayers.

MRI

Yesterday Georgia had her MRI, the sick feeling I get seeing my baby put under welled up instantly.  The waiting is never easy, I want them to bring her back to me, over an hour went by and she finally returned.  They said she did well and a bit of relief washed over me as we left the hospital.. everytime we leave I get this little rush of relief, feeling like "they" didn't make us stay.
We made it home and were doing a little facetime on the phone with Georgia's cousins when the other line rang, it was our doctor.  From the soft tone in her voice I knew something wasn't right.  She said that the radiologist had seen a small spot on Georgia's foot, or more accurately her heel.  During an MRI Georgia is injected with contrast dye, abnormalities show up brighter than the rest, the spot on her foot was bright.  Our doctor said that she talked with the radiologist about what might possibly have caused something like this - an injury, a side effect from steroids, none of which he felt were accurate explanations. 
Our doctor said she'd been in touch with the orthopedic surgeon that has done all of the biopsies on Georgia's femur, he was to review the MRI first thing this morning.  Our doctor said that Georgia's labs all looked good so she wanted to have hope.  Depending on what the orthopedic doc said there could be a biopsy, if so our doctor wants to do a bone marrow aspirate as well.  I was told I would hear from both of them this morning.
It's almost 3pm, we haven't heard from anyone and I can't bring myself to call.  I want to crumble.  It feels as if someone is laughing, saying, you fool, did you really think you were on the road out?  I have to believe that this isn't cancer, that there is another strange explanation.  I am praying and continually telling myself to suck it up as Georgia looks to me to see that everything is okay.  I look at her left foot and keep imagining any abnormal cells washing away and leaving her body.  I have an internal battle of being positive and imagining what we want to hear and the swirl of emotions that make sick inside. Most of all I want to yell at cancer and doctors to leave us the hell alone.
Please keep Georgia in your prayers, that her entire body - every bone, organ, tissue and cell is healthy and cancer free.

After the one year work up I've wanted to feel more settled than I've been and I know exactly why.  It was decided after Georgia's last MRI in September that she would have another one in six months.. for as slow as time seems to go in the process, here we are, six months later.  The MRI is scheduled for 2pm on Monday.  To be honest I am feeling more anxious about the sedation than the MRI results but just wait 'til Monday, then I'll be worked up about both.  Georgia is running, jumping and growing so I truly believe she has a healthy, healing leg but the process and waiting for the phone call isn't even one ounce easier than it was the very first time. 

The tumor and therefore treatment of Georgia's leg has been one fueled by differing opinions since the start.  After talking with our doctors last week it was decided that as long as everything looks good this will be Georgia's last MRI.  The idea of this being the last brings tears to my eyes, could we, just maybe, be finished with one part of this journey? 

So here I am again, asking for the rally of support that has carried us through, please send prayers for a healthy strong leg for my girl.

Potty Pants

I would swear that Georgia has grown into a little girl overnight, our appointment last week proved that she's taller, has gained weight and is doing well.  Georgia has been interested in potty training for a couple of months now, I have been the one dragging my feet.  Well, last week I got on the potty train and bought Georgia some "big girl" underpants.  We took them out of the package, she helped me put them in the wash and now loves to wear them.  I of course took this opportunity to take a few pictures of Georgia proudly displaying her new purchase.

 Wear one carry the rest - that's what we do

 Are you done yet?

Day 3 - still loving them!

Babies

Georgia is really into babies these days, she has three she plays with the most - baby Charlotte named after our friends daughter, Tiny baby who is ironically the largest of the three and baby Mick, named after our postman whom Georgia adores.  Last week we were so excited to have two of the sweetest real babies come for a visit, Georgia's cousins Holden and Landon.  It was so fun to see them together, Georgia couldn't get enough of them and has since talked about them everyday. 

 Georgia & Landon

 One happy girl with two darling boys

 "Love babies much"

Snuggling with Holden