Skin Deep

Just over two years ago I took Georgia to see a dermatologist, she had a few bumps on her skin and her pediatrician couldn't tell for sure what they were.  I remember the appointment well, the doctor was very quick to diagnose the spots as molluscum, a common childhood virus that you don't treat and typically goes away in about a year.

Upon our first few days in the hospital just under two years ago we were seen by a lot of specialists and dermatology was a key player.  One of these "molluscum" bumps was biopsied and it was confirmed that it was not molluscum but in fact Juvenile Xanthogranuloma (JXG).  JXG is very uncommon, benign and is not treated, it is however occasionally seen in connection with JMML. 

Georgia's JXG was a point of fascination for many doctors, residents and medical students, lots of pictures were taken and we heard from everyone up and down the food chain that "they'd never seen a case this bad."  We were told that it may go away in 2-6 years but they weren't sure given the severity.  Our transplant doctor was very curious about it the first time he met Georgia, he said he'd only ever seen pictures of JXG.  In fact the Seattle Cancer Care Alliance had never transplanted someone with JXG before so no one knew what would happen.

After one round of chemotherapy Georgia's JXG became significantly worse, after transplant it seemed to slowly improve.  Last week Georgia's oncologist just sort of gazed at her for a minute, she said, "her skin looks amazing."  The improvement that has happened I think in a lot of ways surpassed what doctors thought possible, certainly in a short time frame.

Today we had our first appointment with Children's Dermatology to do a general skin check on Georgia.  She still without a doubt has sensitive skin, she's had irritation and bumps that have come and gone but nothing that the doctors seemed overly concerned with.  The dermatologist took a good look at a few bumps on her leg, they look like ones that have come and gone in the past but these have been her for a bit.  In his opinion these bumps look like JXG, when I heard this my heart sank.

Since leaving our appointment I have been going back and fourth in my mind from scary thoughts to remembering that her lab work just one week ago was normal.  In 99% of JXG cases it is not tied to leukemia, Georgia has a different history.  The dermatologist is checking with our oncologist to see if they think a skin biopsy is necessary.

This is the feeling I hate, waiting for the phone to ring, feeling like we are at some sort of crossroads and wanting my daughter to be left the hell alone.  I am tired of being scared, of being tied to so many doctors and waiting for someone else to make the call on what is next for my life.  I am trying hard to focus on her months and months of clean lab work, even if this is JXG, the lab work still trumps a confirmation of a skin condition.  I have believe this is only skin deep and the strength of our family goes far deeper than that.

This picture was taken on Sunday, just before Brian and I left for our anniversary dinner - Georgia appropriately let everyone know who was boss before we left!

20 Months Post Transplant

Over the course of the last several weeks we've had a good look at how Georgia's body is doing.  We had a follow up appointment with our orthopedic doc, Chappie, which included five x-rays to check on her femur, heel and to see if her legs are growing at the same rate. 

I will never forget the conversation we had with the head radiologist before transplant, despite the fact that some doctors were baffled by the idea of not doing radiation on Georgia's leg, he had a different opinion.  He said, "if this were my child I would not do radiation, it will certainly damage the growth plate and shorten her left leg."  I remember this conversation nearly every time I see Georgia running and remembered it again as we reviewed her x-rays.

I was thrilled to hear that from her hips to her ankles, everything is the same length, a reminder of how incredible the human body is.  We barely touched on the subject of her heel and spent most of the time talking about the regeneration of her femur.  In comparison, the left bone is still lighter on x-ray than the right indicating that there is likely a cyst from the three invasive biopsies that were done.  The reality is that a destructive tumor, chemotherapy and a bone marrow transplant have been very hard on Georgia's body, bones included.  Regeneration is happening in the left femur but it's likely to take up to another year to be nearly normal.

Brian and I left that appointment with good news but both felt like we'd been completely deflated.  The kid gloves are off, we are seasoned parents who understand the lingo and our doctors talk to us that way.  Despite the fact that we are nearly  two years into this, hearing how harsh all of the procedures and treatments have been on my baby never gets easier.

Monday we had our monthly clinic appointment.  All outward signs suggest that Georgia's body is doing well nearly two weeks off of immune suppression, that still doesn't calm my fears the way it should.  The clinic day dance still happens, with thoughts of "she's eating well but what about her liver numbers" or "GVHD isn't cancer, wait... please, please, please no indications of cancer!"  I swear unless our doctor walks in with a "this is the happiest day on earth" demeanor, I panic.

All in all Georgia is doing very well, nearly all of her lab numbers are normal and the two that are a bit out of range are fine.  We discussed the strength of her immune system, our newly German engineered model is still building strength but should be up to full capacity in three months.  We still need to protect Georgia from getting sick, even a cold could rev up her immune system enough to bring on GVHD which could put us back on immune suppression.

X-rays and labs and doctors are overwhelming for all of us but it just takes one look from my miracle of a child and I'm smiling again.  We've had a lot of help along the way but you Georgia, you are the one doing this, my heart could burst from the amount of love I have for you my girl.  Happy 20 months post transplant - you are amazing!

Campaigning for a Cure

I used to work in downtown Seattle and would dread running into the overly eager, uncomfortably intrusive person who would bombard me with pictures of dying polar bears or statistics on how the planet was melting, “Not today,” I would politely say as I shimmied around them, “Not today.”

These people seemed to petition anyone with a pulse---that is until several months ago when I took a trip downtown with my two year old daughter.  Strangely, solicitor after solicitor sheepishly smiled and let us walk by without as much as a flash of a picture or a gesture of a clipboard.

 “How unusual,” I thought.  Then I glanced at my daughter---she had a feeding tube coming out of her nose, taped across her swollen cheeks. My little babe who loves to smile and wave at everyone had scared them away.  I guess the magnitude of childhood cancer looking them in the face must have outweighed a melting planet that day.

Words cannot describe the hell my child has endured. Diagnosed with two types of Leukemia, my daughter has survived rounds of chemotherapy and a bone marrow transplant.  She has suffered side effects of many drugs, braved MRI’s, biopsies, anesthesia, and countless blood draws and transfusions. 

Shortly after my daughter’s diagnosis I remember feeling like this was a mistake.  My seemingly healthy 10 month old couldn’t possibly have cancer.  I took prenatal vitamins.  I wouldn’t stand in front of a microwave during my pregnancy.  We eat organic!

Little did I know cancer is the leading cause of death by disease among children under the age of 15 in the United States. 

Now I know.

Over the course of the last two years, I have found the families who were fighting their own courageous battles against childhood cancer were the only ones who really understood this new world we found ourselves living in. 

There is a special pain reserved for parents who have to watch their children suffer as they fight for their lives.  As mothers and fathers, we are supposed to be able to kiss away owies and Band-Aid the bruises.  When your child is diagnosed with cancer, those tried and true methods just don’t cut it.  All we can do is sit and rock them for hours, praying that our repeated promise that this isn’t forever is true.  We hope that medical advancements happen today, in this very moment, so our children can live without ever enduring this kind of suffering again.

While I never wanted to toss out statistics as some kind of amateur cancer expert, the facts are staggering.  Everyday 36 children are diagnosed with cancer, 1 in 5 will die within five years.  These statistics alone are a call to action and it has become apparent to me, through my daughter’s experience, that what our children need more than ever is a voice, for people to stand up and demand change for the brutal treatment they receive to survive cancer. 

If you support cancer research, I applaud and thank you.  Do you know where your money is going though?  Only 3.8% of all cancer research funding allotted by the federal government is spent on childhood cancer research.  Is that lowly percentage seen fit to support the health of generations to come?  Unfortunately, this seems to be the sentiment of many of the major cancer research foundations.

It’s time to take action. 

I have a new found respect for enthusiastic campaigners interrupting my day.  Take it from me, cancer is a far bigger interruption in a day---wait---make that a life.

So this is me, Georgia’s mama, with a virtual clipboard, waving a picture of my beautiful daughter, a pediatric cancer survivor.  I’m sorry, but the polar bears will have to wait.  I am focused on getting my child well and raising awareness about the lack of funding for childhood cancer research. 

Dr. Michael Jensen of Seattle’s Ben Towne Center for Childhood Cancer Research has said, “We have the knowledge.  We have the technologies. We have the insights from decades of research. We're ready to make our vision a reality.”  Currently he is preparing for clinical trials that are anticipated to start this fall.

September is National Childhood Cancer Awareness Month and funding is needed to put this research into action, make strides, and attain the ultimate goal: curing childhood cancer.

Please be a part of making this goal a reality, be aware of the facts and support progress toward a cure.  My child will thank you and hopefully, because of your support, your child won’t have to.
 

My sweet Georgia girl

I'd like you to meet a few of the amazing kids we've met on our journey.  Thanks to their families for letting me share a little bit about these incredible human beings.
 

Celah

Celah was diagnosed with Infant Acute Lymphoblastic Leukemia at three months old.  Celah recently turned two and after an unexpected 6 1/2 month stay in Seattle for medical care is back home in Alaska.

 

Anna

After having a cold for about a week Anna was feeling tired and a little achy, she complained that her legs were sore and wanted to leave school early - no fevers, no bruises, no sickness.  Her mom took her to the doctor fully expecting the doctor to say she had a virus and to be sent home.  Three hours later they were at Children's being admitted for the start of her treatment.  At four years old Anna was diagnosed on January 10, 2011 with Acute Lymphoblastic Leukemia.
 

Rhema 

On January 23, 2009 Rhema was diagnosed with Desmoplastic Small Round Cell Tumors (DSRCT) she was 12 years old.  After an incredibly courageous battle she passed away on June 6, 2011. 

Hunter

Hunter was diagnosed on January 4, 2011 with Acute Myeloid Leukemia. He was 5 years old at the time.  He had five rounds of chemotherapy and spent almost nine months in Seattle, mostly in the hospital. He had a feeding tube as well as a hickman line, both were removed in September 2011 and he was able to go back to the 1st grade where he has excelled and was able to play baseball. He is now officially a year out of treatment and getting ready to start 2nd grade.
 

Kaylin

Kaylin was two years old on June 1, 2007 when she was diagnosed with Acute Lymphoblastic Leukemia, she went through treatment but relapsed with Acute Myeloid Leukemia MDS in 2010. She had stem cell transplant in July 2010 but relapsed again and had double cord blood transplant in March 2011. Currently, Kaylin has kidney failure and is on dialysis 3 days a week, she is waiting for a kidney transplant.

 

Please support childhood cancer research....
 

Ways to support the Ben Towne Foundation:
 

http://bentownefoundation.org/home/

 

Coffee for a cure

http://www.calliescoffee.com/

 

Support a friend who is running for a cure

https://bentownefoundation.myetap.org/fundraiser/portlandmarathon/individual.do?participationRef=3450.0.84294693.

 

 

If you are unable to donate money you can still make a difference....

 

 

Donate blood:
Red Cross

http://www.redcrossblood.org/donating-blood

 

Puget Sound Blood Center

http://www.psbc.org/home/index.htm

 

Sign up to be a bone marrow donor, and if you're called, donate--50% of people who are called don't.

http://marrow.org/Home.aspx


For more information on the work of Dr. Michael Jensen and facts on childhood cancer:

http://seattlemag.com/article/smart-cancer-treatment-kids

http://curechildhoodcancer.ning.com/page/facts-1

"Tana"

Last week we hit a big milestone, our first plane ride and trip to Montana since Georgia was about three months old.  She was excited about going to "Tana" she kept saying, "go to Tana, get new boots!"  She'd been promised new cowgirl boots from Grammy and Grandpa.  Despite not enjoying the plane ride over Georgia had a fabulous time, so did I!  

As Georgia is able to do more things I am learning more about what new things she likes and doesn't - she's isn't afraid to share her opinion and one thing is for sure, you can't predict the outcome. 

Brian was able to make it over for two days and wanted to go out on the boat, at last check (about a year ago) Georgia didn't like being on a boat but I thought since this was a pontoon boat it would feel more secure, not so much.  Once we set out on the lake Georgia wanted to "be all done with the boat" so we headed in.  She recovered quickly by stripping down and splashing in the water.

After the boat experience we were all convinced that she wouldn't like the Alpine Slide up at Whitefish Mountain and she surely wouldn't want to go on the chairlift.  She showed us, she went on the slide a total of seven times and had no trouble with the chairlift!

We splashed in the river behind my parents house, saw deer, went for walks and did the Walk of the Cedars in Glacier National Park. It was a fabulous week with a whole lot of smiles and laughing.  Thank you Grammy and Grandpa  - we can't wait to come back!

 

 This pretty much sums up how Georgia felt about the boat ride

 

 Enjoying the view of Whitefish River

 

 Georgia didn't like the airplane ride or the boat but neither of those things bothered daddy - she liked the chair lift - that's all he cared about!

 

 Alpine Slide with Grandpa

 

and again with Grammy

 

 The whole gang at Whitefish Mountain

 

Hard to tell where the trees stop and the water begins
 

 Wildlife in the neighbors yard

 Grammy & Georgia on the mountain

 

 Tall tree, small tree

 Braving the chilly water in Glacier National Park

 

Georgia, did you have fun in "Tana"?  I'm going with yes!

Nineteen Months Post Transplant

Who would have thought?  Nineteen months ago we were living in the hospital with Georgia hooked up to countless things hanging from her IV pole.  Today we are on our first full fledged vacation visiting Grammy & Grandpa in Whitefish, MT.  We have been here for several days and Georgia is having a ball.  She decided last night that she'd like to go back to the alpine slide on Whitefish Mountain to celebrate 19 months post transplant. 

We took four trips down, once with Grammy, once with Grandpa and twice with me, most of the way down she was either chatting or saying "weeee!!"  On our last ride up the chair life we were quiet, just looking around and she said, "Mama, I'm having a good time." 

I can't quite describe the joy I feel seeing her run around having fun and simply enjoying life -- how sweet it is. 

Happy 19 Months Post Transplant my girl -- many more good times are ahead.

 Splashing in Whitefish River

This is one of SEVEN trips total down the alpine slide.

Sixteen Years

Today I have thought a lot about where I was 16 years ago today, I so vividly remember the moments and the pain and numbness I felt.  Losing my mom at 19 years old was devastating, and something that I thought would always top the list of the hardest things I would live through.
I have run through many emotions since Georgia was diagnosed with the same cruel disease that took my mom.  I have been angry, feeling like she was supposed to prevent this, why wasn't she watching over us?  Her name is Georgia's middle name because I wanted to pass along her strength and wisdom not a legacy of disease.
I clearly remember a conversation I had with my mom in the last weeks of her life, I was telling her that it wasn't fair, she responded, "honey, life isn't fair."  We talked about her belief that she had in a sense signed a contract with God, agreeing to the terms of her life, so some how, at some time she was okay and agreed to how her life would unfold and she couldn't go back now.  This is not to say that she wasn't mad as hell that she was dying, she worked so hard to raise my sister and I to be who she knew we could be and now she woudlnt' be around to see the fruits of her labor.
That contract she talked about has crossed my mind many times over the years and more recently I have found new meaning in it.    I have come to believe that perhaps there was a paragraph at the end giving explanation as to why she died at 53 years old.  I have to believe that she knew when she signed that contract that many years after she died she would be the reason that her namesake didn't have to.
I love and miss you mom.  You are talked about and remembered.  On a clear day when you can see Mt. Rainer I point to it and ask Georgia, "what is that?"  She responds, "Grandma Claudia's mountain."

Grandma Claudia

Georgia Claudia

Go Abi Go!

Please send positive thoughts and prayers to our friend Abi, today she is getting the transplant that some doctors said wouldn't happen.  Abi has relapsed with AML three times and through it all she maintains her incredibly infectious, positive, shining personality. 

Some of you may know Abi from the Children's Hospital video that went viral, she's the first and last person you see.  She didn't stop there, she re-wrote the words to a rap song and made it her own.

Wishing you love, strength and health Abi, you've got this one.

Georgia affectionately refers to this as Abi's song -

http://www.youtube.com/watch?v=ihGCj5mfCk8

Abi's own video -

http://www.youtube.com/watch?v=z_QyxfbdJag&sns=fb