On Wednesday, October 28th I was working out, watching the Phils, and noticed an odd red rash on my lower legs. Thinking it was like any other rash, I put some Cortisone cream on it and went to bed.
When I woke up on Thursday, I still had the rash so took some Benadryl and went to work. Mid-morning I called Eileen and asked if I should set up a doctor's appointment. She said yes, I called, and appointment was set for 11 AM Friday. I went to the appointment and the doctor said it wasn't really a rash, rather broken blood vessels. He took blood, and we figured we wouldn't hear anything until early the following week.
Saturday was Halloween and we took Madi out and about. We went to breakfast, the grocery store, MerryMead farm - where I almost won a pumpkin by sling shooting apples - BabiesRus and dinner at Applebees. We were on our way home when I got a restricted number cell phone call. Eileen told me to answer it, but I didn't want to answer, so I told her, "if it is important they will leave a message." Sure enough a message was left saying my platelet count was dangerously low (4,000 - a normal level should be between 150,000 and 200,000) and to head to the emergency room. Once in the ER some more labs were done and the platelet count dropped even more to 1,000. The ER doctor told us that if "a leaf fell from the sky and hit my skin, it could cause internal bleeding" that they would not be able to control, as platelets are key in clotting. I received the first of many platelet transfusions while in the ER.
I was admitted that night to the hospital for more tests including a bone marrow biopsy. This procedure entailed the doctor taking a large needle/drill - I think it looks like an ice pick - which was inserted into my pelvic bone to obtain a marrow sample as well as an actual piece of the bone. This test is used to determine if leukemia is present in the marrow - it was. Now the wait was on to figure out whether is was A.L.L. or A.M.L. - with AML being the worst of the two (harder to treat - and longer hospital stays). Test results showed it was ALL.
Meanwhile, I underwent surgery on Nov. 5 to have a port inserted into my chest - that has a direct line into my heart...this way all treatment and blood can be accessed through my chest, no more pricking and bruising my arms and hands!
Our road to recovery...
With it being ALL I can go home after receiving 5 days of chemo drugs. However, the doctor said that in the midst of being home he does expect me to go back into the hospital prior to the next round of treatment due to me getting a fever because I basically won't have an immune system. Anti-biotics and transfusions should address any fevers or symptoms I should have but we need to be super careful about germs and infections.
I will receive 8 rounds of chemo treatments, taking me into early summer 2010. Basically, I will have one week of chemo, 2 weeks reaction,
ffollowed by 1 week of chemo, etc. After these are finished, I will need a stem cell transplant. In the midst of the treatments I will have another bone marrow biopsy, and surgery to place a port in my head - ALL is known for trying to creep into the spinal fluid and brain where it is hard for chemo to penetrate.
We have a long road ahead of us for full recovery and remission, We are grateful for the support of our family and friends, and will truly need your thoughts and prayers. We will update this site to keep everyone up-to-date.
I just ask for your continued prayers and thoughts in this long process. I love everyone (in their own unique way) and thank you for everything. -Joe
