Jackson's Story

4/30/10: Found mass after bathing Jackson. 5/1/10: Went to Saturday clinic, Dr. S examined mass and thought it to be a swollen lymph node. Sent us to hospital for a round of blood tests. 5/1/10: Most of the tests came back and nothing concerning was found. Sent blood work to a second pathologist to be sure. 5/4/10: Second pathologist found nothing. Dr. H prescribes Cleocin (awful awful medicine that Jack took like a champ) in hopes that the mass stems from a bacterial infection. Says if it is, we should see mass shrinking within four days. 5/10/10: Mass has not changed so we returned to Dr. H. He sends us to the hospital for an ultrasound and more bloodwork to see if it is mono. Bacterial test results are finally in and they come back negative. 5/10/10: Dr. H tells calls with the results of the ultrasound and says the radiologists think it is a lymph node. 5/13/10: Dr. H's office calls and says mono results are negative and refers us to a pediatric surgeon to discuss a possible biopsy. We call and set the appointment for the next afternoon. 5/14/10: We meet with Dr. R who we later find out is the best possible surgeon we could have ended up with. He determines that since the mass is hard, not red and does not move easily that a biopsy would be best. 5/17/10: Biopsy at Medical City Children's Hospital. Scheduled to start at 7:30am, we have to arrive by 6:00am. They begin at 7:51 and it is over by 9:34. Dr. R comes out and says surgery went great. Tells us the pathologist took a quick look and does not think it is a lymph node but he is not sure what it is. 5/18-5/20/10: We wait to hear from the doctors. Horrible. Lots of stress eating. 5/21/10: Dr. R calls and says it is a rare tumor. Refers us to Dr. G and Dr. W. We meet with them that afternoon. They tell us it is a very, very, very rare tumor. After a long meeting, we are checked into the hospital. Jackson gets an IV. The cardiologist comes and does an EKG, which Jack passes out during. Results of EKG are great. 5/22/10: Up early for an MRI, CT scan, bone density test and a Doppler (ultrasound on his leg to see why it's swollen). All tests come back with great results (THANK YOU GOD!) and the Doppler shows that the tumor is pushing on a main artery in his leg. We have a lengthy meeting with Dr. W and decide to start chemo. 5/23/10: Up early again for surgery to install his chemo port. All goes well. Round 1 of chemo (Vincristine, Dactinomycin and Cytoxan) begins at 4:00pm. 5/24/10: We are discharged from MCCH and head home to start our new normal. 6/1/10: Round 2 of chemo (vincristine only). He did well. His counts are very low which means he is neutropenic. We are given results of genetics testing. 6/1-6/6/10: Because he is neutropenic (high risk of infection) we are on lockdown. 6/7/10: Round 3 of chemo (vincristine only). He did great! His counts are super low (120), so we are on lockdown again. 6/14/10: Round 4. Jackson received his BIG chemo (all three drugs) and we stay at the clinic all day. His counts are 1,050 so we are off of lockdown but still have to be careful. He got sick from the chemo for the first time. 6/19/10: Jack got sick several times during the night. 6/21/10: Round 5 of chemo (Vincristine only). He did great. Counts are 740 so we are staying close to home. 6/28/10: Round 6 of chemo (Vincristine only). He did great, no fussing at all! Counts are 560 and must increase to at least 750 for big chemo next week. 7/6/10: Round 7 (Vincristine, Dactinomycin and Cytoxan). Counts are 1470, the highest they have been since starting chemo. 7/12/10: Round 8 (Vincristine only). Counts are 1000. 7/19/10: Round 9 (Vincristine only). Last short chemo. Counts are 940. 7/26/10: ROUND 10 (Vincristine, Dactinomycin, Cytoxan). Counts are 810, lower than expected.