Ronnie (nickname "Gooch") was born January 25, 1997. He was beautiful, if I must say so myself. He has 2 older sisters, so a boy (finally!) was a welcome addition. He had a perfectly normal infancy/toddler-hood, and was a great baby.

Around May of 2000 he started to really act “like a baby”, whining and refusing to walk upstairs, making me carry him everywhere. We attributed it to mom working nights, dad working overnights, and not much time leftover to divide among 3 kids, especially since Dad had been away from home for 3 months straight for training for work.. But he wasn’t just complaining to be carried, he really did NOT want to walk. He was only 3 ½ and when I asked why or where his legs hurt, he would say “inside”. Initially the dr. checked for Lyme Disease, because I had pulled a tick off his head. When that test was negative, it was assumed it was just a virus. But after month of running low grade fevers, complaining he was cold in 90 degree weather with just a ceiling fan on, and second (negative also) Lyme test – well the dr. referred us to a rheumatologist to see if it was juvenile rheumatoid arthritis. I thought he was nuts. To amuse him, and because we knew something wasn’t right, we went an hour away to see the rheumatologist.

She basically took one look at him and asked me about his bruises.. (no one else had – and I thought – well what 3 year old who jumps around all day like a maniac doesn’t get black & blues…? ), asked if he looked pale to me, and he did, felt his stomach (he had a swollen liver & spleen) and immediately sent us to the hematology oncologist. Not to make fun, but my husband didn’t put 2 and 2 together of what those words implied. I knew – and I wanted nothing to do with hearing what anyone had to say from that point on. I wanted to take Ronnie and drive and drive and keep driving – away from all these awful people who keep insisting something was seriously wrong with him.

This was July 19, 2000. “Black Wednesday” as I call it. It’s easier than saying “The-Day-They-Pulled-The-Rug-Out-From-Under-My-Feet”. And thus began our family’s journey:our daughters growing up faster than we expected and fending for themselves more; us negotiating those iv poles around bathroom corners, judging clothes by whether or not they allowed easy access to his port for his chemo IV’s, getting up at all hours of the day or night so he could eat and/or go to the bathroom (if you don’t know what its like to have a kid who craves pancakes at 2 am, you are lucky!); almost weekly phone calls to the insurance company to gripe over what they were refusing to cover ; learning about all kinds of terms and medicines, {I have never looked at someone who sneezed with so much contempt as I do now that I know about ANC’s!}; and Ronnie dealing with things too many kids are dealing with, and it is just not fair.

I still remember the first BMA (bone marrow aspiration). The anesthesiologist asked me several questions, and when he said “Does he have any loose teeth?” I replied.. “No, he’s only 3..” When what I MEANT was “no, he’s too young for loose teeth but not too young for cancer!!!??”
Luckily, he was diagnosed with ALL, the “best” leukemia. (Only now am I starting to really appreciate that- in the beginning all I could do was think “Like I want my kid to have ANY kind of cancer..??) He is in a clinical trial and was randomized to receive two delayed intensifications, rather than the standard one. We had our share of side effects, but mostly minimal. He had 12 transfusions, and we are midway through his 3 years of chemo. He seems to think his bump (what he calls the LifePort implanted in his chest) is normal… but he does know in 2 more birthdays OUT IT GOES! Ronnie is not too excited to be starting kindergarten in 2002, he is too used to mom working nights and being home with him all day.

Thank you to all those who donate blood for kids like Ronnie!

 

During treatment...

7/18/02 - Thanks to The Andrew C. Virostek Foundation and all the contributors we were able to provide Gooch with a KettCar. Special thanks to Dad for putting it together!

October 2002