Day +223

The ability to predict what happens next is null and void in this process - for better or worse I have given up the idea that I might know what's next.
Monday morning we had a clinic appointment at Children's.. no labs, this was a weight check because the threat of Prednisone was looming, if Georgia hadn't gained approximately 10% or 2lbs by our next SCCA appointment that was going to be the next step.  I went in with a list of questions about Prednisone, some about the actual drug, others were asking the doctor to guess how much of this, or how long for that.  Georgia's weight was up slightly but not close to where they want her to be.  Our doctor said she'd been thinking about ways to avoid Prednisone and asked if I would be open to an NG, or feeding tube.  These two topics, Prednisone and an NG tube are two that I have gone round and round with doctors on and been adamant about avoiding... now I was faced with needing to choose one.  Our doctor said she wanted to stack the deck in Georgia's favor, do all she could to put weight on her to avoid not only Prednisone but the whole host of other antibiotics she would be put on as well.
The facts are these:
- Kids post transplant do better and are at a lower risk of infection if they have more weight on.
- If Georgia can tolerate the feeds it will tell the doctors this is less of a GVHD issue, and more of a toddler challenge.  If she doesn't tolerate the feeds and has diarrhea and/or starts throwing up it will tell them this is a GVHD problem and Prenisone is needed.
The doc said she would have to confirm with the SCCA that this is something they would be open to first, she said she'd call me once she'd heard back.  I went home and did my best to be logical - avoiding Prednisone would be better for Georgia's whole body, if we can just get a few pounds on her maybe we could move past this issue, we need to know if this is GVHD or not... all of this logic did nothing for my heart.  Looking at my baby girl I find myself again wanting to ask for her forgiveness, to tell her I'm sorry she has to deal with something new.
It's Children's Hospital policy not to sedate kids when an NG tube is placed, they instead restrain them, often wrapping them up in a blanket so they can't fight and sticking a tube up their nose and feeding it down into their stomach - this is nothing short of asinine.  The trauma that these kids have to endure is too much, and asking that of my 21 month old daughter who doesn't understand just doesn't work for me.
Georgia is due for an MRI on her leg in September so I asked that they place her NG tube while she is sedated for that proceedure.. there was some hemming and hawing but I found out this morning they were able to get us in on Tuesday so she will be sedated when it is placed.  I've heard from other parents and doctors that these tubes often come out - or are pulled out and need to be placed again, this would not be done under sedation.  I'll be honest, I don't have high hopes for Georgia ignoring her NG tube they way she did her central line, that I was able to tuck away in a shirt, this will be taped across her face and dangle behind her ear. 
If I think too much about it I start crying, I wish I could explain to Georgia this will only be for a month or two but she doesn't understand.  Most of all I don't want her to feel defeated, like these things will never end - she is so good about taking her medicines, the powder in juice, the pills in food, the cherry flavored, the medicine flavored, all of it, I just don't want to ask one more thing of my baby girl but I have to.
About a week ago I told my sister, I just want to get through September - an MRI, our next SCCA appointment, more labs and now an NG tube, something I couldn't have predicted.  Tomorrow is day one.

Cousins

Today was a long time coming and something that makes me happy on so many levels... today, we had a belated "cousin only" birthday party for Blake.  Leslie had the party complete with balloons, hats, plates, snacks, all exactly one month after Blake officially turned four.  The sight of Blake (4), Georgia (21 mo) and Lauren (15 mo) all playing together makes my heart happy.  Here are some pictures from our fantastic birthday play date!

21 Months old, 7 months post transplant

Georgia girl, what a month it's been - less than three weeks ago you got your line out and you're still patting your chest and saying ba-bye, I think you're just as happy as we are that it's gone! Bath time has become much more fun, laying down or as you say going ni-night in the bathtub.

You have quite an opinion on your clothes already, I'll pick out a pair of pants or shirt, you'll say no and hand me what you want to wear.. we'll thumb through your hanging clothes and I'll ask - this one? No.. this one? No.. this one, yes!

You have also become quite the music connoisseur.. requesting songs - I'm not kidding, you like the "down" and "ba-bye" by Casper Babypants but your absolute favorite is the "uh-oh" song by Sugarland.. as the song comes to an end you get worked up saying more... more until it starts again!

You're working on your um, manners shall we say.. you think it's hilarious to say "uh... me, uh... me" - that's right, you are pretending to burp then saying (excuse) me.

You want to do more and more things without help, getting up on the couch, getting dressed.. the front door was open the other day, you grabbed my purse, slung it over your shoulder, had keys in hand, looked at me as you headed toward the door and said ba-bye.. oh, and you didn't have a thing on!

I continue to be amazed at all that you take in, the things you remember, words you can say and how well you do with all that you have to put up with. I love you my girl, how lucky I am to be your mom.

Ba-bye!

The only down side of not having a line -

you had your first lab draw and

they had to poke both arms.. you were upset,
but handled it like a champ!

Here you are shakin' it to your favorite song...

Seattle is the place, and now is the time.

Recently there has been a lot of information in the news about a new leukemia trial that was completed with astounding success. At our clinic appointment on Monday I asked our doctor what she thought about it.. she smiled and said they've been getting a lot of calls regarding the findings. This conversation lead to one about Dr. Michael Jensen and the Ben Towne Foundation.. Seattle has long been known for cutting edge medical research but what is on the horizon will change everything. With help from the Ben Towne Foundation, Dr. Jensen is working to create a world without childhood cancer.

Did you know that cancer is the leading cause of death by disease among US children?

Dr. Jensen says:

We have the knowledge.
We have the technology.
We have the insights from decades of research.
We're ready.
Seattle is the place and now is the time.

The links below will share stories and information - we shared a room briefly with the Hartle Family - John is incredible.

If you feel so inclined please donate to this cause, no one should suffer to be well the way that Georgia and so many children have, and changing that is possible. If nothing else though, I ask that you share this information.. copy and re-post this to your blog, an email, Facebook - anything to keep this information going, it will make a difference.


http://www.seattlechildrens.org/videos/dr-michael-jensen-world-without-childhood-cancer/


http://bentownefoundation.org/


https://secure.seattlechildrens.org/?anotherfund=Cancer%20Research&fund=0

15 Years

It's hard to believe that 15 years ago was the last time I saw my mom's face or touched her hand. She died at home, where she wanted to be. For anyone who knew her they would say she was a woman ahead of her time, she was eating organic long before it was in style, knew the importance of being honest and was always working to be the best for her girls and herself. She would say things like, 80% of life is just showing up - it wasn't until I was an adult that I understood how true that statement is.

An admitted momma's girl, I have missed her for a lot of reasons over the years but it has been the hardest not having her here since I have been a mother. She would have soaked up every ounce of being a grandmother and would have gotten a thrill out of watching Leslie and I with our kids.

Never in a million years did I think I would be that close to cancer again, there is certainly a part of me that thought I'd checked that box and would be, or maybe should be exempt from the heartache it causes.

Somehow through the years and many moves a little card that she had has stayed with me, it now hangs on our refrigerator and reads:

Don't Give Up

You may be tempted to,

But don't give up;

When you've lost the desire

to try,

And you've misplaced your

hopeful dreams,

Dare to believe again in the

impossible;

Catch a ray of sunshine,

And hold on tightly;

The One who holds your hand...

Will never let you go.

I love you mom.

Day +199

Last week we had our second "Continuing Care Clinic" at the SCCA, overall Georgia's labs look good, she is happy and developing normally with the exception of weight, it was down again. We are still on the two "topical" steroids (meaning not systemic) and will stay this course until at least our next appointment. There is a delicate balance the doctors are trying to achieve.. I am continually reminded that we "aren't going the typical route" in terms of treating her GVHD.
We were told in the beginning that they wanted to see signs of GVHD, if they didn't they would pull back on her immune suppressants to try and create some - this is done in the hopes that Graft vs. Leukemia is happening. Had we gone the typical route of Prednisone there is a good chance we would be past this point, for a moment I felt frustrated so ready to have weight on my girl but I was reminded, from a GVL stand point, lingering GVHD isn't a bad thing with a JMML diagnosis. If her weight isn't up and stable by our next appointment mid to late next month she will be put on Prednisone.
I know so many people who would be terrified to be in my shoes but I also know some who wish this was their problem, all of this leaves me in a strange place. It's scary to know there are no guarantees in life, I am able to bring myself back to earth with the reminder, there were never any to begin with.

Day +198

My sweet girl got up this morning, went to the living room and climbed up on the couch with her dolly and a few blankets.. oh and her sunglasses of course - good start to a Saturday.

Day +196

Georgia.. where are your lines?

Down here.. no

Under here.. no

I don't know!

Everything went smoothly with Georgia's line removal - she keeps patting where the line came out of her chest and saying ba-bye!

Day +193.. the end of the line

No doubt about it, tomorrows procedure is a milestone in this process. I wouldn't say that I'm excited, it's always stressful when Georgia has to be sedated but I am cautiously optimistic, which is a term I would now use to describe my outlook on life. I remember when the doctors first told me that she would be getting a Hickman catheter, unfortunately it's something I was already familiar with as my mom had one at the end of her life. This line is where she's received all of her chemo, antibiotics when infections occurred, had blood draws, pain medications, countless infusions of platelets and some red blood cells but biggest of all it's how she received her new bone marrow. I was nervous when the nurses told me that when we were are home I would be the one maintaining it, this has become something of second nature to me but is a big task that I'm happy to give up. Georgia has been a rock star when it comes to her line, she's very curious about it but has never pulled on it - something we were told is common with kids her age. She is certainly aware that this thing that has been attached to her for half of her life doesn't belong there - I'm excited to see what she thinks when it's gone. Obviously there are a lot of reasons we're glad the line is going away... here are my top 10.


10. I won't miss the look on peoples faces when they see the line if Georgia's shirt is hanging low.. their faces go from ohh cute toddler to uhh don't know what to say.
9. My feisty daughter has taken to grabbing her lines and putting them inches away from her open mouth when I tell her no .. this, not to be out done by rubbing her hands on the ground and acting like she is going to put them in her mouth... I am so in for it!
8. Summer is here and we are getting a kiddy pool!!!!
7. Getting dressed is a challenge, Georgia has to wear a onsie to protect her lines.. I can't wait for t-shirts, dresses - anything we want to wear!
6. I won't have to do her once a week dressing changes, this is a sterile procedure which means holding very still and properly cleaning everything to avoid infection.
5. No more daily line flushing.. Georgia could practically do it herself now and likes to "wash, wash" her lines.. I will happily introduce a new, more "normal toddler" task!
4. I can't wait to be able to just throw Georgia in the bath.. no more wrapping each line and putting a Aquagard on all while making sure she doesn't splash too much and get water inside.
3. Having a central line means that you have an increased risk of infection, although getting her line out won't boost her immune system it certainly takes a big risk factor away.
2. Caring for her line is a lot of work and worry - more time and less worry.. yes please!
1. Getting Georgia's line out means we are moving forward and in this long journey progress is being made.

The line

Blue glove and all..

What is this thing anyway?

Do you know?

Bath time get-up


And the video says it all... she's a professional!