Thursday, December 25, 2008

Bittersweet Christmas Day

First thing this morning, I patted Jacob's cheeks, celebrating the fact that they are the same size--not like last Christmas morning, when he was lopsided and I was worrying.

That was the sweet.

Then I read my Rhabdo-Kids email digest after opening gifts this morning.

That was the bitter.

When Jacob was diagnosed and I joined the Rhabdo-Kids list, a little boy named Diego Fuentes, 4 years old, had just come off treatment a few weeks earlier. I remember reading his mother's emails and rejoicing for his apparent healing.

When he had his first set of off-treatment scans in February, they discovered that he had relapsed. They amputed the arm where the tumor was growing for the second time and started a different chemo protocol.

But the rhabdo kept growing, first in his lungs and then in his brain. For the last six weeks, Diego has been in the hospital as the doctors treated both his cancer and his side effects. His parents made arrangements for all the medical support necessary to let him come home for Christmas before resuming treatment. They planned to bring him home yesterday.

Instead, Diego died in his parents' arms on Christmas Eve at the hospital. He was 5 years old.

Pray for his family tonight, and for as many nights as you think of them. I am.

Diego's Site

Thursday, December 18, 2008

What I Did Today

Shoveled snow. Six inches of it. I'd be happy if it would stop snowing now.


I didn't help move two storage units' worth of belongings into my parents' new house.

I didn't send Jacob to the dentist with my mother-in-law.

I didn't take a phone call from the dentist telling me Jacob needed at least two teeth pulled.

I didn't take another phone call from the dentist, while directing burly moving men, telling me that he had to pull three teeth and he thought "something was odd" so he took a tissue sample and sent it to a lab.

I didn't cry on the way home (scaring Matt) because I was swept by a wave of what I thought at the time was absolutely senseless fear.

I didn't wrap my arms around Jake the moment he walked in the door, bloody and bruised but unbroken.

Snow away. Six inches every hour if necessary.

Today is a better December 18th.

Monday, December 1, 2008


Each year during the December holiday season, a 23 foot tree is placed
in Washington DC. The tree is solely decorated with thousands of gold
ribbons (the symbol for childhood cancer), with each ribbon bearing the
name of a child who has, or has had cancer. The tree glitters strong in
our nation's capitol for all to see. Thousands
each year are touched as they are reminded of our nation's youngest
cancer patients.

I encourage families who have had or have a child diagnosed with cancer
to participate in this unique event and support childhood cancer
awareness by adding your child's name to the National Tree. Ribbons are
$5.00 each and can be purchased on-line by clicking on the following A tribute can
be added in honor or memory of your child.

I wanted to make you aware of this opportunity. I wish I lived near D.C. so we could attend the tree lighting. But at least Jacob will have a ribbon--I donated today in his name.

Candlelighters is an organization that supports the families touched by childhood cancer. One of their most noticeable efforts is to give free books to families. We were given a request form our first week in the hospital that, once filled out and sent in, brought us one of the best books on childhood solid tumors available. They also provide books on helpings siblings cope and dealing with grief and other issues.

As we face the holidays with our child in remission, I'm moved to think of all the groups who have helped us this year. Candlelighters, Make-a-Wish, Primary Children's, Huntsman's Cancer Institute, our neighbors and family members who cooked for us twice a week for ten months . . .

God Bless You Everyone.