Thursday, June 30, 2005


Today was the last day of Phase I and the beginning of Phase II. Consolidation.

Josh got another Bone Marrow Aspiration (BMA) and Spnial Tap (aka Lumbar Pucture - LP), and also a dose of Chemo in his port.

Today was the worst day ever! They used Versed and Fentanyl for pain and anxiety. Josh seemed to have an adversed effect to the Versed. instead of it calming him down he went into a wild RAGE. He punch me, he hit me, he cried and begged for help. The doctor suggested for Jon to go out of the room and get Josh's new prescriptions, which was probably a good thing as Jon was getting pretty nervous watching Josh go through this all. You just feel so helpless. After the doctor got the Bone Aspiration, she had to leave the room before she could continue on with the procedure. She brought back with her another nurse. It took four of us to hold him down. The doctor apologize profusely, saying that she wanted us to know that this is NOT what is supposed to happen, and was totally unacceptable and that they would never use Versed on him again.

They did use Versed on Josh before, while we were inpatient. The day of Josh's discharge, they had to do the 7 day BMA, they also used Versed, afterward Josh would cry uncontrollably for a half hour or more before slowly coming around. But still... it was nothing like this day.

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.

Monday, June 13, 2005

No place like home...

Home -- still not sure when I'm going back to work. Josh had his visiting nurse today. Went alright. Considering. She just called me with the blood results. Everything still low. Looks like he'll need another transfusion Thursday. Anyway... he's not feeling too well today. Not walking again. Jon just got home and has him right now. Thought I'd jump on real quick and look a could things up.

Be home tomorrow too. Probably for a couple more weeks. I'll let you know...

Wednesday, June 1, 2005

Eye of the Storm

We've been transferred to the oncology floor - 8N (floor 8 north side)

He has Acute Lymphocytic Leukemia - A.L.L. - 'B' Cell.

It has spread to his lymph nodes and his spleen. They are doing a spinal tap tomorrow to check that and they will begin the chemo tomorrow night I believe.

His bone marrow was completely packed. They didn’t see any other cells aside from the Leukemia. He got blood this morning (he's B positive by the way, Jon's type, I'm O+, something you wish you didn’t know...) He is getting platelets soon. Actually they are up here now, but they thought they'd let him play in the playroom for awhile first since he's up to it. Still not eating or walking, but they imagine by the end of the first week of chemo he'll being feeling 100% better. I guess we're in here at_least another week. It all depends on how he does. Then we will be treated on an out-patient basis, but for the first 4 months it will be 1-2ce a week. After that weekly., then monthly for the next 3-1/2 years.

They treat boys longer since it tends to reappear in them in their groin. Josh has it in his arm pit and groin now. and I mentioned the spleen.

They sent his bone marrow out to see if he has the Philadelphia type thingy --- that will take another week to know about.

I don’t know what else to say... think maybe I've covered it... I broke down when we got to this floor and seen all the kids. We went from a private room to sharing one with a little baby. A boy. Haven’t really talked to his dad (who's there with him) but guessing it's gonna be a tough night. Gonna take some getting used to. Especially keeping Josh quiet enough to not wake up the baby (I'd guess he's around a year).

Jon's heading down stairs now, I'm gonna get this sent off now -- will post again.

Lightning Strikes

Josh getting the transfusion now. Dad in room with him. We're right across the hall from the playroom, they have 2 computers in there that they will let us use as long as there arent any children that want on.

Josh still in isolation. I guess later if he wants to leave we can take a walk if Josh will keep a mask on. So they said we should have some prelim results today probably. Between 3 and 5 maybe. I asked what they were going to do if the leukemia showed up neg, they said we'll cross that bridge when we get to it. Great. More pacifying doctors.

No really, they've been great. I understand. They just dont want us to worry unnessarily - if that's possible. They found a lump under his right arm and his spleen is enlarged. No time to investigate... sure we'll find out soon enough now though...

Girls dont know yet. Didnt tell them anything until we know for sure what we're dealing with. Depending on the type they find we can be here another 2 weeks to 6 months folloing diagnosis.

I called in work this morning with the heads up. Who knows how we'll manage that --- but things always seem to work out somehow. Jon says he'll work in the hospital - ROFL