The first few days - diagnosis

Hello everyone,

Some of you may have heard that Alexander is in the hospital. I'm not sure who knows what at this point, so I am sending out an email update to everyone.

This last week has been a nightmare. Alex has been diagnosed with Lymphoma, which is a cancer of the lymphatic system (we will have confirmation on the type of Lymphoma later today - they suspect T-Cell).He is in the pediatric oncology ward here at Doerenbecher Children's Hospital in Portland (the best pediatric cancer center in the state). Everyone here has been amazingly compassionate and we have received great care. Alex will be starting Chemotherapy this morning (anytime now as I write this)

Here is a history of how we got to this point:

November 1st, Alex started breathing "weird" - he had "stridor" breathing (which sounds like really labored breathing while "inhaling"). I called the advise nurse, and was told to take him to the emergency room at Meridian Park Hospital in Tualatin (near us and his pediatrician) The emergency room diagnosed "croup" - he was given an oral dose of a steroid, and sent home. The next day, the breathing was better, and by monday it was all but gone. Tuesday, Wednesday, Thursday, he was fine. Friday, the stridor breathing started to return. By Saturday it was more pronounced, and Sunday morning we had a full breathing "episode". He started crying about something (not picking up his clothes or getting dressed - can't remember, doesn't matter...), and got himself worked up to the point he couldn't breath. His lips turned blue, and he was sucking air as hard as he could. Needless to say we were terrified. He started calming down, and breathing easier as we rushed him to the hospital. I called ahead to our pediatrician's office, to tell them we were on our way to the emergency room, and they had us come to their office (same hospital, different building) instead. He was breathing "loudly" with the stridor, but was not blue and not struggling for breath at this point, so we went up to his pediatricians office. They gave him two different nebulizer treatments, and a steroid shot, and then after 1 1/2 hours, with no marked improvement, they sent us back to the emergency room for an X-Ray and further treatment. He received another nebulizer treatment there, and was just so cooperative with the X-Ray staff - he's such a good boy! When the X-Ray was reviewed by the Emergency Room doctor, he told us that Alex's Thymus Gland (right under the breastbone, between the lungs) was quite enlarged, and that we needed to follow up with his Pediatrician in the morning.

Needless to say, when we got home, I immediately went online to see what I could find out about an enlarged Thymus (none of it was good). Eric and I had a hard time sleeping that night, and at 8:30 the next morning, I called Alex's pediatrician, to make an appointment to come in and talk about the X-Ray. The doctor finally was able to get a Radiologist to confirm that the "mass" in Alex's chest was not within normal range, and at 4pm, we were told to get to Doerenbecher Children's Hospital Emergency Room right away, and get a CT scan. We called my mom, and she rushed over to watch Tessa-Lynn while we went to Doerenbecher. The ER staff was great - and gave Alex a stuffed animal. Alex was so brave while they put in the IV in his arm, and was scared, but stayed real still while they did the CT scan.

Unfortunately, the CT scan confirmed that there was a large mass in his chest on his Thymus, and the preliminary diagnosis was either Lymphoma or Leukemia. Leukemia would be cancer of the bone marrow, while Lymphoma was cancer of the lymphatic system. The big question then became "if it is Lymphoma, has it spread to his bone marrow and spinal fluid?". More tests were needed to answer that question.

Needless to say, Eric and I were devastated, and Alex had to wipe the tears off my face as he asked me why we were crying. We were transferred to the pediatric ICU for the night, and everyone there was so supportive, and Alex got Thomas the Train sets, cars, bubbles, playdoh, more stuffed animals, coloring books, crayons, etc. They also had a red wagon, that we could hook Alex's monitoring equipment to, and give Alex a ride around the unit. The hardest part at ICU was that Alex was not allowed to eat or drink until they did the Lymph node biopsy, Bone Marrow Aspiration, and Spinal Tap - which didn't happen until almost 3pm the next day. We watched a bunch of movies, and just hung out until the procedure.

I cannot tell you how terrible it is to see your child attached to so many wires - I know some of you may have experienced it, and know what I mean. Alex took it in stride, although he did ask us many times to go home and play with his friends.

We have been real open and honest with him about this, and he is now just walking the halls with his IV pole, like it was normal. What a trooper!

We received preliminary results last night that there were no signs of cancer in his bone marrow and spinal fluid - final results for these and the biopsy are due back either tonight or tomorrow morning - but from all indications, it's Non-Hodgkin's T-Cell Lymphoma. It's great news that it hasn't spread into the bone marrow or spinal fluid!

We sure have a lot of learning to do over these next two years - more than I ever wanted to know about cancer. One statistic struck me - the instance of the cancer has increased over 90% between 1973 and 1991, and there is no known cause at this point. We could rack our brains, and be filled with guilt about what we could have done, but the answer is that we don't know, and we need to focus our energy on getting him better. The rate of Lymphoma in people under 65 is 8.5 in every 100,000 people.

Alex started with Chemotherapy today - with some real strong steroids which "melt" the mass. Then the next medications will hopefully stop the production of new cancer cells. T-Cell Lymphomas have about an 80% complete cure rate after first treatment with no recurrence. We are really encouraged with how healthy Alex has always been that his body will fight off this cancer attack successfully!

The resources available to us are amazing - from "Chemo buddies" (volunteers who stick with Alex through the whole process), to a "caring cabin" at the beach, where up to 12 family members can go for 4 days to "get away" from everything. I'm looking at a bingo card right now, and cookies that have been placed in our room - and the Music Therapist just came by to see if Alex wanted to play with some instruments. The playroom up here is great - and they even have a couple of bikes/tricycles for the kids to ride around the unit.

We are waiting to hear back from the Oncologist today, so we can sit down and hammer out our "plan of attack" - it's a long road - but we are strong, and Alex is strong - and we'll get through this with all the love and support of our friends and family. We can't tell you how much your well wishes and prayers have helped us through these first few dark hours.