Monday, May 10, 2010

Face of the week: Tobin David Geoffrey

I decided to join face of the week.  The idea seems fun and there's lots of pretty pictures people put up to go with the theme.  Today my face of the week goes along with the Mother's Day post yesterday.  I am not merely the mother of two children, I am the mother of the late Toby-wan-kanobi as well.

Toby was born in 1995.  He was a hoot! He had the weirdest sense of humor, dry and witty, like someone much older than he.  In 1997, on our way to Alabama, while in Texas, he was feeling miserable.  We at first thought it was just the flu, but then his stomach started bulging and when he rubbed his eyes they bruised.  After a series of crappy attempts, we finally arrived in the correct ER and were told that he had cancer. Neuroblastoma. Stage 4, aggravated, deciminated, amplified by genes. Yeah- cruddy prognosis. 

Toby practically lived in that hospital.  He went through chemo and radiation.  He took it like a champ (because no one ever told him that this was an abnormal thing to go through- seriously, it's yucky, but we gotta do it).  He showed 11 year olds how to take medicine without complaint.  He wooed all the nurses.  Firemen gave him real fire boots, a helmet, and a patch.  He represented the hospital's religious division, cancer floor, and cancer charity.  He basically rocked.

After 6 months of treatment, Tobin had a bone marrow transplant.  His older brother (5 at the time) was kind enough to exchange his bone marrow through a painful procedure for a "happy meal and balloons".
 A few weeks later, he stopped breathing.  I think something happened with the meds they were giving him to make him pee- but I can't be sure.  He was brought down to the ICU from the Bone Marrow unit and put on life support (that breathing machine).
We sat with him and talked to him, and left tapes to play to him when we weren't there just in case he could still hear us.  They had put him into a drug induced coma so he'd rest better and not fight the machine. But the machine can hurt the lungs so that was a crap shoot anyway. We fought for him when the mean old doctor told us to give up.
The nurses in the ICU were great.  The rest of the hospital staff that visited the ICU stunk.  They walked into his room without a mask and without scrubbing- Hello! he had no immune system! Then one of them rinsed Tobin's nose sucker out with tap water (there were boxes of sterile water in the room just for that reason).  Texas tap water harbors a fungus called aspergillus.  To normal human beings it is fine, to immuno-suppressed humans, it is dangerous.  The fungus quickly invaded his body and killed him.
The autopsy showed the cancer had come back.  We were losing a downhill battle anyway.  But I was upset over lack of protocol.  I wrote to the hospital and expressed my concerns.  I was told by one of Toby's favorite nurses, that now there is a huge book outlining BMT to ICU protocol because of Tobin.
He had died 3 weeks before his third birthday.  We held him one last time and said our goodbyes.  His good friends, the pigeons outside his window, flew away as he drew his last breath.  We were, I was, extremely blessed to know him for the short time I did.
I love you, Bo-bo, Mom


Coffeedoff said...

Not sure what to say! Such a beautiful face and such a sad story, such a terrible thing to happen.

James said...

What a face. Those eyes are amazing. I can't even imagine how hard it must have been to lose Tobin or to even go through the whole ordeal. However I can imagine that lives have been saved thanks to your letter and the changes that were made.

Ebie said...

I had to wipe my eyes reading Toby's story. But what a brave kid, with a bright smile. He is happy up there.

Your letter made a big change in hospital protocol.

Sistertex said...

Such beautiful blue eyes, such a heart-rendering story. So very sad lessons had to be learned the hardest way possible, just never understand why it is so often that way. However, I am sure there are now so many others have been spared due to everyone's experience with Tobin. What a magnificent, brave little guy. Certainly that in no way makes up for your loss of such a beautiful, bright little son. Thank you so much for sharing your story with us, I will certainly never forget it. A very touching first post for Face of the Week....thank you SO much again. Lots of hugs.

Her Mom said...

I was Toby's Gramma, and he was indeed most special. Those eyes, so blue and so clear, used to see through skin and bones to the soul. Or at least that's how it felt. He will always live in our memories.

hip chick said...

How blessed you were to have had the chance to mother such a beautiful little spirit. Thank you for sharing your story with us.

Michael said...

Thanks for sharing Toby's memory with us.

Lyn said...

Thank you so much for sharing Tobin's story - what a bright, beautiful soul who shined this plane for such a short time. He's gorgeous *hugs*

jabblog said...

Thank you so much for posting this - it was very brave. No doubt about it, Tobin lives on in the hearts and minds of all the people he touched. What a beautiful little boy and how brave his big brother was, too.