Thank you all for your prayers and support. Unfortunately, the initial results of the lymph node biopsy yielded a false negative and last week we found out that the cancer has returned. Dr. Trippett explained that since the original tumor was so large, a few cancerous cells split off and migrated to the lymph nodes in his groin. They went dormant for a few months and then reactivated. She said that it was only a few cells, and that his prognosis is very good. He will have chemo Tuesday-Thursday, get a 2 week break, have 3 more days of chemo, and if that is successful, he will then have to have a bone marrow transplant, followed by possible radiation, and another round of chemo.
Having been through this before does not make it any easier. During this difficult time we ask that if you would like to reach out to us, you may do so through email and not by phone. I may or may not respond, but the emails are sent directly to my phone, so I will always be able to read them.
Thank you,
Adina
My Boys
Sunday, May 29, 2011
Monday, May 16, 2011
Our Prayers Were Answered!!!!
Dr. LaQuaglia just came in to tell us the good news! It doesn't look like cancer!!!!!!!!!!!!!!!!!!!! Cris is coming home tonight!!!
Update:
Okay, so yesterday Cristian was supposed to have a lymph node excision/biopsy, bone marrow aspiration, spinal tap, possible temp line insertion and a laparoscopy. He was supposed to be in surgery for 2-1/2 hours. The good news is that they did the lymph node biopsy and it showed abnormal activity (which isn't abnormal for a lymphoma patient), but it was negative for cancer cells. Dr. Trippett and Dr. LaQuaglia said that sometimes, in lymphoma patients, the lymph nodes can over react during illness or infection. The CT/PET scans measure activity and not necessarily solid masses, which is why his lymph nodes were lighting up the scans. (If you ever want to know about your body's immune system and the function of the lymph nodes...feel free to ask, I know more than I should.) When Dr. LaQuaglia called us in after 1-1/2 hours, I had a feeling that we were going to get good news. Thankfully, they only had to perform one procedure.
In about 2 weeks, he will have been cancer free for 1 year! It is a huge benchmark for him! If the cancer doesn't return within the first year, it most likely will stay in remission, and in 2015, he will be considered to be cured!! With the exception of the last 1-1/2 months, everything has been going pretty smoothly and we're praying that the worst is behind us!
Thank you for all of the prayers (they're working)!!
Adina
Update:
Okay, so yesterday Cristian was supposed to have a lymph node excision/biopsy, bone marrow aspiration, spinal tap, possible temp line insertion and a laparoscopy. He was supposed to be in surgery for 2-1/2 hours. The good news is that they did the lymph node biopsy and it showed abnormal activity (which isn't abnormal for a lymphoma patient), but it was negative for cancer cells. Dr. Trippett and Dr. LaQuaglia said that sometimes, in lymphoma patients, the lymph nodes can over react during illness or infection. The CT/PET scans measure activity and not necessarily solid masses, which is why his lymph nodes were lighting up the scans. (If you ever want to know about your body's immune system and the function of the lymph nodes...feel free to ask, I know more than I should.) When Dr. LaQuaglia called us in after 1-1/2 hours, I had a feeling that we were going to get good news. Thankfully, they only had to perform one procedure.
In about 2 weeks, he will have been cancer free for 1 year! It is a huge benchmark for him! If the cancer doesn't return within the first year, it most likely will stay in remission, and in 2015, he will be considered to be cured!! With the exception of the last 1-1/2 months, everything has been going pretty smoothly and we're praying that the worst is behind us!
Thank you for all of the prayers (they're working)!!
Adina
Friday, May 13, 2011
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!
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!
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