Here We Go Again

I never envisioned myself being in the position of having to blog about my child's health. I'm not entirely certain how I feel about this, but it seems to be the easiest way to keep everyone up to date.

If you don't know the back story, here goes: On New Year's Day 2010, we noticed a small red bump on Cris's neck. We thought it might be a bug bite, so we didn't think much about it. A few days later, the bump had grown larger and was a bright red. Initially, I thought it may be a ringworm, but when it doubled in size almost overnight, I made an appointment with the pediatrician.  The Doctor thought it was an eczema flare up. Cris's eczema had never looked that way, but I trusted the Doctor and I applied the cream he prescribed for an entire week. When we went back, another bump was forming and the original bump was bigger and redder. He gave us another medication and told us to come back in a week. Needless to say, the medicine didn't work, and he referred us to a surgeon. The surgeon took blood, and said that it looked like Cris had cat scratch fever, so he prescribed antibiotics. When we returned the following week, another bump had formed and the two previous bumps had morphed into one large bump. Cris was scheduled for surgery for the following week.  Because of a massive snowstorm that had hit Upstate NY, we had to wait almost 2 weeks for the results of the biopsy.  During that time, we never seriously considered the thought that Cris may have had cancer. When the surgeon called, we were devastated to hear that it was cancer. He gave us 3 different treatment options, and it was a no-brainer, we immediately chose Memorial Sloan Kettering.

From day 1 every single person we have been in contact with at MSKCC has gone out of their way for us. Every single person on the pediatric lymphoma team, from Dr. Trippett, to all of the nurses who have cared for Cris during the past year, have been extremely kind, and compassionate.Cris was officially diagnosed with Anaplastic Ki-1 Large Cell Lymphoma, an extremely aggressive and rare type of T-cell lymphoma. Because the cancer was so aggressive, the treatment had to be equally aggressive. Cris underwent 6 rounds of high dose chemo over 3 months, and he was found to be NED (no evidence of disease) in June 2010.  Every 3 months, Cris had to undergo CT and PET scans, most of which showed no abnormal activity. On March 17, 2011, we had to cancel the scans because Cris was not feeling well. Two days later Cris developed a high fever and we had to bring him down to MSKCC. He tested positive for the flu and it took him several weeks to recover. The March scans were rescheduled for mid April, and they showed reactive lymph node activity.  We had to keep him in isolation for almost 3 weeks and they repeated the scans. The Friday before Mother's day, Dr. Trippett called to tell me that the scans were still detecting reactive lymph node activity and he would have to undergo further testing as well as surgery. We brought him back to MSKCC that Monday (May 9, 2011) for more scans (which continued to show reactive lymph nodes). On Wednesday, May 11, we spoke to the surgeon, Dr. LaQuaglia, who will be performing the biopsy. The scans showed suspicious activity on both sides of the aorta as well as in his groin. Dr LaQuaglia examined Cris and said that he has a gut feeling that the cancer has not returned. He thinks that since Cris had recently had an ingrown hair (cyst) near his groin , that may be what was lighting up the scans.  He also said that all of the scratches that Cris has on his legs (from scratching his eczema) may have become infected and that could be what is lighting up the scans. We won't know until after the biopsy on Monday, May 16, 2011.  Dr LaQuaglia will look at a frozen section of the lymph node during the procedure and we'll probably have some answers by Monday afternoon. Cris may or may not have to spend the night in the hospital, which is something he had manged to avoid during this last year.

I am in awe of  Cristian. He knows what is going on and he is handling everything better than most adults would under the same circumstances.  When he started, Cris hated needles. Every time they had to access his port, or insert an I.V. line, we had to hold him down and apply generous amounts of numbing cream. It broke my heart to watch him go through it.  The last few times they had to insert an I.V., Cris sat in the chair, alone, and very calmly allowed them to do what they had to do. No screaming, no tears. His strength amazes me.

I will update after his surgery, as soon as we find out what is going on.


Thank you for all of the love and support!