Tuesday, February 12, 2013

Kids with cancer falling off the cliff....

So last night I wrote a really long post.  Then my pictures wouldn't upload.  Then I got cranky.  Then I realized all I did was complain.  So then I went to bed.

In sum, I know we will get through all of this, but right now it's just hard, wearisome.  There is very little time for rest, and it's been difficult for Anthony and I to just pass the baton as we trade places. We've spent three nights since Esther's transplant admission in the same location and to be honest, we both suck at the phone.  It's difficult for us to connect and be unified this way.  I guess when we get to be home together we'll have to take some extra time to date each other.

This morning Esther had her 16th radiation treatment, only 4 more to go!  Thank you for continually lifting up her health.  She has remained healthy even though some of our other kids were sick and she has handled radiation very well.  The only hiccup has been a need to increase her anesthesia because she was reporting being aware of her surroundings when she was supposed to be knocked out.

We are gearing up for Esther to come home!  Preparing a home for a post-transplant child is quite the task.  It seems like everything is dangerous for Esther, but mold and mildew are particularly harmful and even a tiny bit can make her very sick.  Keeping this in mind, the fact that the previous owners of our home had fish tanks and a water bed in the basement, our water heater flooded a couple years ago, and that every time we've cleaned our carpets it's stunk for days, we felt it would be better to put in new carpet rather than do the deep cleaning.

Boxes are just as much fun
for 4, 6 & 8 year olds
as they are for one-year-olds!  
For most of the last week I was home packing up the basement and a crew is coming over Wednesday evening to move everything to the garage and tear out the carpet.  New carpet will be installed Friday or Saturday.  I think they are set on help for Wednesday, but we will probably need some more help moving things back into the basement after the carpet is installed.

Esther is progressing quickly and is moving onto the final 6 month phase of her treatment, antibody therapy. This portion of her treatment will help her body fight future cancer; this is so important because the relapse rate for neuroblastoma is so high. The study behind this therapy was BIG in the cancer world.  60% of the kids on the therapy had positive results verses only 40% of the kids not on the therapy.  The results were so positive that the study was stopped because it was unethical to deny all the children the benefits of the therapy.  This article from the Children's Oncology Group talks about the therapy and  says: 
John Maris, M.D., COG Neuroblastoma Disease Committee Chair, responds, “This is the first clinical trial to show a substantive increase in cure rate in well over a decade for this highly malignant childhood cancer”.  
This is the kind of research that has brought neuroblastoma out of the relm of "many parents chose not to treat" and "virtually all kids with Esther's diagnosis relapsed."  These are REAL, ACTUAL things nurses and doctors have told us.  While neuroblastoma is still not the cancer you'd choose when looking at prognosis percentages, it has significantly improved through research.  Unfortunately, as I've written before, research is not well funded for childhood cancer.  It's not really profitable for pharmaceutical companies, and our government already only gives about 4% of the allotted cancer research money to kids.

One of the things about neuroblastoma is that when relapse occurs, treatment options are scarce, mostly limited to research.  Research that developed this significant improvement in the first time success of neuroblastoma treatment is in danger due to the upcoming federal budget cuts.  This article from St. Baldricks says:
Unless Congress acts by the March 1, 2013, a series of automatic, across-the-board budget cuts (known as sequester cuts) go into effect.  These spending cuts, which cover a wide range of government programs, are a result of failed efforts to trim $1.2 trillion from the 2011 budget. 
The budget cuts of greatest significance to childhood cancer are $2.4 billion in reductions from the National Institutes of Health (which funds the National Cancer Institute which in turn funds the Children’s Oncology Group - COG) and $318 million from the Food and Drug Administration, which reviews and approves new drugs and therapies for patients of all ages.  These budget cuts threaten all children with cancer, whether they are newly diagnosed, in treatment, or survivors.
Would you please take a minute and contact your members of congress and ask them to stop sequester cuts and more thoughtfully balance the budget. St. Baldricks has put together an easy way to email your members of congress, and I have a suggestion for another way.

As I thought about this...is an email really going to speak to my members of congress?  I don't know, hopefully, but maybe a phone call or a handwritten note will carry more weight.  Then I got to thinking...these men and women need to see my girl.  They need to see who they are representing when they cast their votes.

Then today I opened a letter from some friends in California who, when they learned about the poor funding of childhood cancer research, raised some money for St. Baldricks through a lemonade stand and sent over $100 in honor of Esther.  I thought about the ways kids have sold their toys, made bracelets, and sold lemonade all in support of Esther, I was so blessed.  I'm sure these are things they will remember and feel great about sacrificing for another person.

In light of all of this, I came up with an easy way for kids to support both kids with cancer AND learn about being an active citizen.  I made two coloring pages with pictures of Esther that anyone can print, color, and mail. So many kids have been praying for and cheering Esther on over the last few months and this is a way they can speak up.  I was so encouraged to hear about the lemonade stand and I'm sure it felt great for those kids to work to support their friend.

  1. Down download a coloring page at the bottom of this post.  There is one with flowers and one with a wagon.  Feel free to encourage your dudes to draw their own rocket blasters on that wagon...Rourke always like to color things if they have fire :).  
  2. There is a space for the kids to write the name of their Representative or Senator and a place for them to sign their name.  
  3. Mail a copy to your members of congress.  You can find all the contact information for your Representatives here and your Senators here.  
  4. The deadline is fast approaching, make sure they arrive by March 1st. 
P.S.  Coloring isn't just for kids...grown ups can color and mail in a picture too.  I find coloring quite calming.  

Thanks for all of your support in so many ways.  Not only have toys and lemonade been sold, our  friend, Jen, is riding in the upcoming Courage Classic with Esther as one of her tributes and stranger gave a donation in honor of Esther to, Dan, who is shaving his head for St. Baldricks.  

These may seem like small things, but thankfully we follow a God who is in the business of turning a few loaves and fishes into a meal for thousands.


  1. Oh my friend <3 Hang in there! You are almost DONE with the second to last section of treatment!! Crazy how little you and Anthony have seen of each other. Counting my blessings again, that my parents are living with us right now. Sending a hug.
    PS Ive written MANY blog posts and status updates with MUCH complaining, and then erase them :) This all stinks. Big time. And it wont ever be OVER. The fear of relapse will ALWAYS be there. Randy and I were talking the other day about that. Research has come a long way in the past few years. Hopefully IF our girls relapse there will be something for them that will help them.

  2. Hey Sam! I'm still praying for you and your family! Thanks for putting together the pictures to mail to our representatives! I will probably write a letter myself. Your activism is appreciated by many affected by cancer!

  3. Hi Sam, My kids will love doing this for Esther and other kids with cancer. We continue to ask that God would fight for Esther. We will pray for an outpouring of grace for you and Anthony. I read this verse again recently. It always grounds me in the truth that God is in charge of the number of our days, whether we are sick or healthy. Much love Sam.

    Acts 17:25
    And he is not served by human hands, as if he needed anything, because he himself gives all men life and breath and everything else.

  4. Perfect timing with the coloring page, we're going to color them at our PJammin' Party tomorrow night :-) Love you friend!