Wednesday, June 15, 2005

Josh's Story

How it all began:

A few weeks before diagnosis, Joshua started having trouble walking. One day I came home from work and he just wouldnt walk, nobody knew why, he just stopped. But that didnt stop him from getting around. He just scooted around on the floor from here to there. Of course this happened after hours and on the beginning of a weekend, so we gave him Tylenol and the next day he was fine. One week later it happened again. Again on a weekend. But this time I was there to witness it. He began with a limp on his left leg, as the night progressed, he quit walking again -- again Tylenol made everything all better. I also noticed he was running a slight temp. The next morning, I called the doctor's. But of course, he was walking fine again. The doctor checked him over and said we would keep an eye on him for Juvenile Arthritis. They said if it happened again, bring him in right away so they could witness it.

Wednesday evening, we were at one of the girls softball games. Joshua and I were walking around selling 50/50 tickets. Towards the end of our walk, Josh again began to limp 'til he walked no more. This time I took him to the emergency room. They ran x-rays which showed nothing, and told us to follow up with his doctor. That night Josh slept with us, and I got very little sleep as he tossed and turned in discomfort all night, or what was left of it. Also Josh was sweating. First thing in the morning, I called off work, and took Josh straight to the doc's again. They witnessed Josh's refusal to walk, they felt his joints, they ordered bloodwork. They were testing for JRA, Lupus, and wanted to rule out Leukemia. After Josh's bloodwork, which took three attempts to get, I went back to work. Shortly after I got a phone call from Jon. He said the doctor himself had just called, he was setting us up for an appointment in Pittsburgh. When Jon told me, I asked him for what. Jon said for whatever we had him tested for.... Well he was tested for several things. So immediately after I got out of work I had Jon take me directly to the doctor's office. I wanted to hear it for myself. Dr Fox called me back to a room himself. I totally expected to see a nurse. He said he was referring us to an oncologist just to rule it out. That Josh's bloodwork came back abnormal, but he really didnt think it would be anything to worry about. In the end, he thought it would be some kind of weird virus. I asked him straight out if he thought it was Leukemia. He told me that he couldnt say yes, but couldnt rule it out either. I teased Jon for not getting the doctor's call straight, but in the end, my visit is somewhat of a blur to me also. But I do remember one thing vividly. Dr Fox came over and gave me a hug and told me in the end, he thinks everything will be okay and that Josh will be an average boy just giving us a hard time!

Our visit to Pittsburgh was scheduled for the day after memorial day. And what a long weekend it was. When we got to the clinic it was a scary sight. The waiting room was packed. There was a teenaged boy in a wheelchair hooked up to an IV pole sitting in the waiting room. There was a little girl, slighly ovre Josh's age that also was having trouble walking. I remembr thinking, this just cant be happening to us. When we finally got back to a room they took Josh over to prick his finger. You can believe he was none to happy with that. We had one docotr come in and ask Josh's story and examine him, then another. They had said that his blood showed no blasts (cancer)When Dr. Wollman (Josh's doc now) came in the first doctor was with him. He pointed out to her that Josh's liver was enlarged and had her feel for it himself. Josh also had a swollen lymph in his neck and armpit. And thus began the beginning of it all. If you looked at the doctor's faces, it seemed as though they knew something they werent telling you. Josh was admitted on the 9th floor. Which is just your ordinary sick kids floor. Josh was to stay the night so the next day they could do further testing. A bone marrow biopsy. This is where they stick a needle in his spine to draw out a sample of blood tissue from the center of his bone and they also get a piece of bone itself. And if we thought Memorial day was long, this day was even longer. The test results were supposed to come back later that afternoon. The minute Dr Wollman came through the door we knew. But no matter how prepared you think you are, you can never be prepared enough to hear these words:

Your son has cancer.

2 comments:

Kari Fenrich said...

MONDAY, JUNE 15, 2005 09:06 AM, CDT

Hi Joshua, My son Dawson was diagnosed on May 7 so we know exactly what you are going through:) Fun, fun. Dawson wants to type you a message.

wwsssdddffgyh........,,,,,rttyyghghchgthhgthyguyhhjjjjhjuhujhuju

Did you catch all that? He just turned 4 in June. His site is www.caringbridge.org/visit/dawson in case you want to stop by.

Take care,
Kari & Dawson (4) ALL list

Kari Fenrich kfenrich@hotmail.com
Alberta, AL
Canada

Katie Donigan said...

FRIDAY, JULY 15, 2005 02:46 AM, CDT

Hi Marian, so glad you found us over at ALL-Kids. Sorry to hear about the hair loss, it is really hard to see that no matter how ready you think you are. Rest assured it WILL come back... check out Hunter's crazy hair! http://www.caringbridge.org/ma/hunter

With love,
Katie, mom to Hayley, Hunter and Taylor

Katie Donigan
Franklin, MA