This page has been dedicated to keeping our friends and family updated about Tommy's nearly 3 year battle with cancer. He's a SURVIVOR now...and God willing he will get to enjoy the rest of his childhood healthy and CANCER FREE!
Diagnosis:On September 4, 2003, Thomas was diagnosed with Anaplastic Large Cell Lymphoma (ALCL CD30+) This is a rare form of Non-Hodgkins Lymphoma that affects approximately 1.2 children per million.
For nine months he was treated with chemotherapy on protocol POG 9315. Unfortunately in May 2004 he started showing signs that the disease was returning. On June 16, 2004 an MRI of his brain showed a 3.5cm x 4.5cm tumor in the left parietal lobe, and confirmed my suspicions of relapse.
Research: At the time of his relapse, there was only ONE other reported case in the whole world of CNS relapse of ALCL CD30+! (published December 2003)
Treatment Plan:Thanks to Dr. Lockhart (the director of research in our pediatric oncology office) we are persuing a customized treatment plan determined after she contacted several lymphoma specialists/experts throughout the world. Our current plan is based on POG 9412 (a relapse protocol for isolated CNS relapse in ALL - leukemia.) I also insisted that we consider the treatments for a few successful treatments Primary Brain ALCL since I am still convinced it was in the brain at diagnosis. In August 2004 we decided on a road map that outlined the first 32 weeks of intensive chemotherapy. In June of 2005 we set the road map for the final maintenance phase of his treatment:
Re-induction: Immediately after the relapse diagnosis he began a 1 month reinduction regimen which started with an almost continuous supply of decadron (PO), weekly vinblastine (IV), and weekly triple-intrathecal chemo.
Intensification I - Tommy began his first HI-DOSE chemo in August 2004. Intensification I took 16 weeks. Medications included 4 monthly cycles of hi-dose methotrexate w/leucovorin rescue (inpatient), weekly vinblastine IV and monthly triple intrathecal.
Intensification II - was another 16 weeks and started in January 2005. It consisted of monthly inpatient chemo hi-dose Ara-C, dexamethasone eye drops, and an L-Asp IM shot in the leg. He continued to receive his vinblastine 2 weeks of each 4 week cycle, and his monthly triple intrathecal chemo.
Radiation - On June 16, 2005 (the 1 year anniversary of his relapse diagnosis), Tommy began 1800 Gy (10 days) of cranial radiation.
Long-Term Maintenance - 1 year of maintenance chemo is scheduled to prevent any disease recurrence. He continues to receive weekly VBL 6mg/m2. In addition he gets a chemo cycle once every 3 weeks consisting of 1 dose of Methotrexate(PO) and a 5 day pulse of Decadron and 6-MP.
OFF TREATMENT: Scheduled OT date: June 28, 2006!
My Little Hero:Tommy is such a trooper! When it was all said and done, he had handled the chemo rollercoaster like an old pro. I felt awful for him when he in pain from mouthsores or other side effects, but he did not let this disease slow him down! (atleast not too much) Somewhere about 1 1/2 - 2 years into treatment he decided that "Cancer SUX!!" I was amazed that it took him that long to come to that realization. Then his question became "Mom, how long until I'm done with cancer?"
I was always cautious about how I answered that one because I didn't want to set him up for disappointment. But things moved along on schedule and he went off treatment in June 2006.
I had hoped to celebrate with a big off treatment party, but by the time 2 years and 9 months of chemo plus radiation was over, we were all too tired and too broke to host any sort of real party. He was a little miffed about that at first, but he got really spoiled for his 8th birthday, I think that helped make up for things. Even though he's off treatment now please keep him in your prayers for continued good health!
Here is a video created by my friends at ALL-Kids for Cancer Awareness month - September.
Journal
Tuesday, August 26, 2008 6:53 PM CDT
Hello Friends,
I haven't updated in a while... no news has been good news for the most part, but we did have some excitement yesterday so I thought I should go ahead and update Tommy's site with a copy of the e-mail I sent.... ENJOY!!
If you can't see the pictures, I've re-posted it at
At the end of the first day of school 2008, I just wanted to send a friendly reminder to all the Moms out there to revisit with your children the importance of not running with sharp objects.
In this case... don't HOP on one foot with a pencil in your hand!!!
Yes. That's a pencil stuck completely THROUGH Tommy's foot!
I have no idea HOW he actually did it, but his little brother came running to me, screaming that it was serious! I dropped what I was doing and ran up the stairs and couldn't believe my eyes! All I could think was "OMG!! What do I do? What do I do? What do I do?! ...Crap! I didn't read that section of the baby and childcare book!!! "
I was trying not to panic while my 9 year old was screaming in pain. My first instinct was to pull it out. I ran back downstairs, got my husband to call 911, and grabbed a towel because I knew there would be blood... and as I ran back upstairs flashbacks of episodes of ER and Grey's Anatomy were playing in my head... I could hear Merideth Grey, "when we pull this (whatever it was) out, this person is going to 'bleed out'..."
I sat there holding his foot in my hand, and noticed there was NO BLOOD... not even a drop coming out of either of the holes...and I wasn't prepared to open up an artery on the playroom floor. So I realized I would just have to calm him (and myself) down and wait for the EMTs to arrive. I could hear Dave on the phone downstairs with 911 yelling up to me "Don't pull it out! Don't pull it out!" I said, "I'm not going to... get the camera".
The EMTs arrived, splinted the pencil in place, and carried Tommy out to the mini-van and laid him on his stomach in the middle row of seats with his foot in the air. Then we drove him to the ER. The ER doctor gave him a shot of morphine and then pulled it out with a PAIR OF PLIERS!! Unbelievably, it still didn't bleed! They cleaned it, irrigated it, and put a couple bandaids on it and sent us on our way....
All I can say is OUCH!! And thank God it wasn't worse!! He's on crutches today, but doesn't seem to be in any pain unless he tries to step on it...
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