On the ride

Kait:  When we first met Jake's oncologist, Dr. Katzenstein, he warned us that searching google can be a bad idea.  So what do I do?  I search on google.  At first I was looking to find a kid Jake's age with Ewings sarcoma, dark blonde hair, brown eyes, wears size 9 shoe...(you get the picture) and I wanted to read that he tolerated treatment, had a successful surgery, and was declared cancer free.  Obviously there is not a kid in the world that meets this exact criteria.  I was never going to find the storybook tale because there are no two situations alike.  I can find a boy with a solid tumor in his tibia but he's 17.  Or a 3 year old with a tumor in her heel.  Or an adult who beat it as a child with flying colors.  It finally dawned on me that all of us who are parents of cancer fighting heroes are doing this without a manual, and while another child's fight may be similar, no two are the same.  That realization is not a comforting one to me.  So, now my google searches consist of finding blogs like ours, of people strapped to a roller coaster with no way to get off.  I guess in a way it makes me feel better to know that we're not the only ones who think we are not handling things too well.  Sometimes I find some great advice too.  One thing I read was from an oncology nurse and she said that in her 20+ years as a nurse, in most cases the parents and family got hammered...the kids did fine.  Every day is hell for a while but to a kid it's just a short time and they go on about their business.  So maybe Jake won't be emotionally scarred from this.  It's entirely possible that I will be the one who is scarred, and I'm hoping to use my scars to raise awareness, raise money, and volunteer.  There is no way that my life will ever be the same or that I will ever be able to forget everything that we're going through. 

What a small world we live in.  I was given a gift certificate to get my hair done (a donation coordinated by Jake's teacher) and I used it this past Friday.  After I told Alicia at Utopia Hair Salon all about Jake, she told me that her cousin's young son is fighting a brain tumor.  It is unbelievable that there are so many children fighting cancer and I never knew it!  These kids live in our cities, towns, and neighborhoods.  Did you ever think you would know a kid with cancer?  Now that my own son has it I see it all the time.  My eyes have been opened to a world that I didn't want to be a part of.  A world full of unimaginable heartache, love, stress, tenderness, pain, togetherness, confusion, and support.  See the roller coaster?  With every negative there seems to be a positive right behind it.  I love reading all of the comments posted on here and on Facebook.  It makes me feel so good that we have all of this support, and I am proud to be the Mom of a boy who has touched so many hearts.  The other day Jake said "You know what, Mommy?  I am very brave."  Yes, yes you are sweet pea.

Jake had been doing very well since his last treatment until two days ago.  He started showing signs of mucositis again and has been in mild to severe pain because of it.  He has not had a fever which means as long as we can manage his pain we don't have to take him to the hospital.  Lortab and fluids are about the only things we can do to help him which makes it really hard.  Mucositis is described as having a sunburn inside your mouth and throat and, in Jake's case, can affect the entire gastrointestinal tract.  If he's just sitting watching cartoons he is fine.  If he touches a sore with his tongue, swallows, or passes gas he is in agonizing pain.  Think of your worst sunburn and imagine someone slapping you on it a few times and you can get the idea of how it feels for him.  He is still drinking a little so I'm hoping he is on the uphill slope.

We have an update about Jake's surgery.  It was supposed to be on 2/12/13 but Dr. Katzenstein was worried that his body won't have enough time to recover from his next chemo treatment.  So we have postponed the surgery to 2/26/13 instead.  This will give him a well deserved break from chemo and pokes and give his body enough time to be healthy for surgery.   That way he will have the best chance at recovering from surgery quickly so that chemo can resume.  As of right now his 6th round of chemo is scheduled for 1/31 (this Thursday) and he will be admitted for 5 days.  Thanks for praying for us and for loving our brave boy!