My Story

Our son Thomas has always been a happy and healthy baby. But in October, he was diagnosed with a malignant neuroblastoma in his abdomen. This has changed our world in unbelievable ways, but so far it has not changed our son. He laughs, he smiles, he tries to walk, he gets into trouble, and he constantly reminds us that we will accept no outcome other than full recovery.

Journal

Thursday, June 18, 2009 12:19 PM, CDT


Hello all,

 

There are just a couple of things I wanted to update you on.  First, everyone is doing very well here and enjoying the glorious run of 20-some-odd straight days of sun (not a common occurrence in the Pacific Northwest in May and June).  The boys spend most of their free time outside, even if they have not told Mama and Da that is where they are heading.  They also just got haircuts and look very old.  Katie has been doing acupuncture (yes Katie, she who hates needles) and has seen improvement in her respiratory function, so hope that this keep working for her asthma.  Hopefully it will help her during the half marathon she has scheduled at the end of the month.   I am doing limited travel right now, so after a crazy May I am able to play with the boys and rile them up right before bedtime as every good Da should…

 

We have a date for T’s next set of scans.  He goes in for his MIBG injection on Wednesday, July 8 and has the scans on Thursday the 9th.  We do not have an appointment with Dr. Park until the following Monday, but we are asking for results by Friday since I am supposed to be diving in the Columbia River the next week.  We will post results when we have them.

 

The other thing going on is the LiveStrong Challenge this weekend if I can raise enough money to participate.  I’ll be riding the bike to support the LiveStrong Foundation, Lance Armstrong’s organization that helps people fight and survive cancer.  While there is some research conducted, the foundation primarily focuses on the people and dealing with the cancer.  And as we view T as a cancer survivor, we see this as a worthy goal.  That, and T likes his wristband (see photo).  If anyone is interested in helping me raise the minimum to participate, just go to http://seattle09.livestrong.org/jvavrinec (link on the Resource page).  I was not sure if I would be able to participate this year because of increase knee problems I have been having, but I think I have a pseudo-green light.  I had x-rays and a MRI done a couple of weeks ago and the orthopedic surgeon told me last week that, well, mostly that I was getting old.  I have a split in my meniscus and cartilage loss behind my patella, but there is not much they can do that was not done with the surgery 15 years ago.  He said it will hurt as I use it, but it will get worse if I don’t.  Oh, by the way, it will get worse anyway.  C’est la vie.  I will not let it stop me, and I figure it is a small price to pay for a good cause.  I will only be dong the 45 mile ride though because of it so don’t look for me on the mountains in Issaquah. 

 

Other than that things are just going along.  The boys saw Pop Pop and Nona in May, and Nanny arrived yesterday to help Sara with the new baby expected any day now (T helped carry Nanny’s bags through the airport all by himself).  T has been doing some T-ball, which he seems to enjoy.  Jack is growing huge and I think he spends some of his time outside hunting small animals.  Eli is still kicking and watches over the boys when they are not bothering him (he gets abused with kindness a lot, and tackled at times when we are not looking). Life moves on.

 

Hope everyone is doing well and enjoying the summer.

JV


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E-MAIL AUTHOR

john.vavrinec@pnl.gov

HOSPITAL INFORMATION

Children's Hospital - Seattle
4800 Sand Point Way NE
Seattle, WA 98105

206-987-2000