It all started on Oct 5, 2011, with a fever. Then a cough. Just when we thought he was getting better, the fever would come back. He was extremely weak, barely able to walk ten feet without stopping to rest. He had also been very itchy and scratched so much that he ended up with bruises (petechiae) on his legs and three infected spots where he scratched himself raw and the Dr. started him on antibiotics. Took him to the ER on Oct 21 when his fever spiked, and he got a shot in each leg of a stronger antibiotic. About ten minutes later, Connor was complaining his leg was wet. He couldn't stop bleeding where the shot was in his left leg. We were really hoping they would have admitted him for IV fluids and antibiotics, but didn't realize Bay Park doesn't admit kids under 16 years old. When he still wasn't better on Oct 25, we took him to see the Nurse Practitioner in our Dr's group since our usual Dr. was ill. She was going to send him for bloodwork, but then got a 2nd and 3rd opinion from 2 other Dr's in the office and they decided it was MRSA and just changed up his antibiotics again. Almost took him to the ER again on the 27th when his leg started looking even worse and fever spiked again, but called the on-call Dr. and was told to just have him seen in the office the next day. As soon as Dr. Kahle saw him on Friday Oct 28, he looked very concerned and sent us straight for bloodwork. It didn't take long before we got a call from the office telling us to take him straight to the PICU at theToledo Children's Hospital as a direct admit. His hemoglobin was 4!
Once we got up to PICU we met Dr. Jamie Dargart. She introduced herself as a hematology/oncology doctor. Did I hear that correctly? Oh, his hemoglobin is low, hence hematology. My heart started beating again. She took his history and did an exam. The nurse hooked up an IV which was extremely difficult with his dehydration, she had to dig around quite a bit. Once it was in blood started spraying everywhere. Then Dr. Jamie took Marcos and I down the hall to a little room, asked us more questions and then hit us with it. She thinks it's leukemia. And our hearts stopped. No, I told her. My dad, uncle and grandpa all were extremely anemic and it ended up being their appendixes. Theirs were hidden in their backs and it took exploratory surgery to find out that it was appendicitis causing the anemia. She didn't look too optimistic. We went back to be with Connor. After his new set of labs came back and he was typed and crossed he received 2 units of blood and a unit of platelets.
Connor was moved out of PICU today. He's looking and feeling a lot perkier after the transfusions. The nurse asked if he wanted to ride in a wheelchair or walk to HEMOC, I suggested he walk to get some exercise. It was a LONG WALK, but he made it! As we were walking we passed signs guiding us in the right direction... Pediatric Hematology/Oncology. It was all I could do to keep from falling to the ground and crying my eyes out. There was that dreaded word again, oncology. Ahh, that's why they said they were transferring him to HEMOC, it's their lingo for Hematology/Oncology. HEMOC does sound less intimidating too. Our room is private, new and comfortable. Looks like he'll get spoiled here, flat screen TV, toy room with wii, nourishment room available 24 hours for late night snacks, a private bathroom and a bed for me so I won't have to leave his side. He will be getting 2 more units of blood tonight and more tests over the next few days so we can get a definitive diagnosis.
A few test results came back today. Chest xray was clear, abdominal xray shows enlarged spleen and liver, blood counts are still low, but high enough to not need anymore transfusions for now. Still leaning towards leukemia, but he doesn't have enough white blood cells to diagnose. Will do a bone marrow biopsy and aspiration tomorrow to see if that gets us any closer.
Connor had a good day today, thanks to the all the blood he received! A HUGE thank you to everyone who has ever given blood or tried to give blood. And thank you to those who were able to come visit Connor today, it really lifted his and our spirits and kept our minds off of his illness. Among his visitors were friends, family and even Darth Vadar himself! Apparently one of the HEMOC docs is a huge star wars fan and arranged for a full cast to come visit all the kids today. That really made his day!
So we finally have a diagnosis. Connor has Acute Lymphoblastic Leukemia, or ALL, a form of cancer of the blood. While no parent wants to hear this, it is actually a relief to finally know what is wrong and start treatment for a cure. Also a relief that it's the more treatable type of leukemia. We've known from day one that they were leaning towards this, but didn't know which type he might have. It took longer to get a firm diagnosis because his low blood cell levels and low bone marrow fluid. Actually, his low white blood cell count is a good thing. If it had been elevated it would have meant it would be harder to treat. He will be getting a port put in tomorrow morning to receive medications and to draw blood. While he's sedated for the port insertion he will have a spinal tap to see if there are leukemia cells in his spinal fluid and chemo will also be given into the spinal fluid. He seems to be feeling pretty well and is in good spirits. He is mostly worried about pain associated with procedures and losing his hair. Treatment will be rough for 6-9 months, then will be maintenance for 3 years. Thank you everyone for your support and prayers, please continue to pray for remission.