YAY! I have the phone repaired and that means I am online again. I never made it to K-Mart for the rain coat, Dylan refused to stay with someone else, but Barbara came to my rescue! I think I had only written about it on Dylan’s website 30 minutes earlier, and I got a phone call from Barbara to say she would call in with a rain coat for me to borrow. It’s perfect! Just as well because it’s going to rain until Saturday and Dr Modak called me yesterday to tell me we need to go to clinic on Thursday, Friday and Saturday! Dr Modak told me yesterday that he had not heard back from Philadelphia yet and that he will also try San Francisco and I think Michigan in regards to MIBG therapy. After some discussion, we have decided to start Dylan on a phase 1 clinical trail on Monday as it will be many weeks before we can be booked in for MIBG therapy at another hospital. Only 2 other children have been on this trial since it opened, both with brain tumors, one it has done nothing for so far but the other had a 25 percent reduction in tumor size. Dylan will be the very first Neuroblastoma patient to try this trial. Today Dylan and I headed to clinic at 8:30am in the pouring rain, thank you Barbara you have no idea how grateful I am for that raincoat! I managed to make it all the way to clinic with relatively dry sneakers, until I crossed the last curb to get to the hospital, and in went my right foot, deep into a puddle! In clinic Dylan had his blood work in preparation for his 1pm consultation with Dr Trippett who is in charge of the new clinical trial. After the blood work, we went in to see the Neuroblastoma team and I asked about Dylan’s recent results. His urine test was VMA 33 and HVA 35, so that has remained the same since August. Next I asked about the bone marrows done when he had his medi-port implanted and the news was not as I had hoped. Since January Dylan’s marrows have been clear, but the biopsy this time showed Neuroblastoma in the left side, with his right side remaining negative. The aspirations (liquid) tests were both negative. Then I ask for the bone scan result, this result has totally astounded me. It has come back as clear with no abnormalities suspicious for osteoblastic bone metastases. In Australia the only scans even offered for Dylan were bone scans, and they always showed lots of bone disease (metastases). This bone scan is the first Dylan has had at MSKCC as their preferred and more accurate scan is MIBG. When I left the consultation room, I held the scan results in my hand and I was shaking, then tears rolled down my cheek. I felt like I had a taste of a miracle, but these were not tears of joy in a sense. I had a feeling of knowing that Saturday’s MIBG scan will show every detail of Dylan’s disease and I know it will show the true extent of his bone metastases. I guess I just wanted this miracle so much, more than anything, and I felt like “if only this were true”. I questioned myself several times, “Is it actually possible? Could Dylan get this miracle?” I then wondered if Dylan had this bone scan in Australia now, would they tell me he was clear of bone disease? If his bone disease is still present then it may only show up on MIBG scans now, unless…no it can’t be. I guess I just have to wait for that result for this Saturday’s scan. We then headed back to the Ronald McDonald House after dropping some prescriptions in at the hospital pharmacy. The rain was coming down very heavy, so putting on my rain coat and covering Dylan’s stroller with the plastic storm cover, we ventured out, dreading the fact that I had to return in 2 hours to meet Dr Trippett at 1pm. This time there was no avoiding the puddles, every curb was flooding at least 3 feet wide and a foot deep, I had no choice but to reside to the fact that my sneakers would get completely saturated along with my soggy socks. When we returned, Dylan ate noodles while I changed my jeans that were totally soaked from the knee down. It gave me a good excuse to throw my sneakers in the washing machine for a clean though. I then I dug out the next set of clothes and shoes for the lunch time drenching walk to the hospital. When Dylan finished his lunch I told him the results of the bone marrow biopsies and the bone scan, and Dylan replied “no neuroblastoma in my bone scan?” I said yes, but we have to wait and see what the MIBG scan says before we get excited, so Dylan replied “I know what’s doing it…God!” I just smiled and said yes baby. Here are the pathology results for those interested…
BONE MARROW BIOPSY
Bone marrow, left posterior iliac crest, biopsy:
-Metastatic Neuroblastoma present as several large clusters
-The uninvolved bone marrow is unremarkable
Bone marrow, right posterior iliac crest, biopsy:
-Moderately hypocellular bone marrow (Approximately 50 percent cellularity) with trilineage hematopoiesis.
-Megakarocytes are normal in number and morphology.
-We see NO EVIDENCE OF NEUROBLASTOMA
WHOLE BODY BONE SCAN
CLINICAL STATEMENT: 6 year old male with neuroblastoma. Evaluate for bone metastases.
RADIOPHARMACEUTICAL: 11.6 mCi of Tc-99m MDP
TECHNIQUE: Approximately 2 hours after the intravenous injection of radiopharmaceutical, whole body and spot images of the skull and thorax were acquired.
FINDINGS: There are no focal areas of abnormal increased radiotracer uptake to suggest osteoblastic metastases. Both kidneys are visualized.
IMPRESSION: No abnormalities suspicious for osteoblastic bone metastases
We headed back to clinic for our 1pm appointment with Dr Trippett. The wind had really picked up and I must have seen at least 10 umbrellas dumped on the street or in trash cans all mangled up by the wind, on our way to the hospital. We met with Dr Trippett, a lovely lady, who explain the clinical trial that Dylan will start on Monday. The trial is Protocol 05-074 and is a Phase 1 study of Erbitux (Cetuximab) combined Irinotecan. Now I will try and explain what that means. Cetuximab is an antibody made from mice and then turned back into a human antibody, classing it as a human antibody and not a mouse antibody like the 3F8’s. being a human antibody it should be more readily accepted by Dylan’s body. This antibody works on a particular receptor on the cells and when it is given in conjunction with Irinotecan, it allows the Irinotecan to work better, so that means even patients who had no response with Irinotecan, may have a significant response when it is given in conjunction with Cetuximab. This has been used in adults very successfully and is up to a stage 3 trial in adults. They have found that children usually respond better to drugs than adults do, so considering it is tolerated well in adults, it should be very safe for children. The primary purpose of the study is to test the safety of the combination when given to children with cancer. Another purpose is to determine the highest dose of Cetuximab that can be given safely in children without causing severe side effects. Dylan will start at 7:30am on Monday and we will be in the hospital all day until about 5:30pm, this is because on the first day he will have a series of blood tests as part of the study to look at how quickly the antibody remains in his body etc. The subsequent days for 2 weeks should run smoothly and only require a few hours each day in the hospital. Dylan will also have a one on one nurse during the time that Cetuximab is administered and his bed will be close to the nurses station for close observation. I have been given a lot of information to read about the trial and I will also be given more literature when we go in on Monday. I am anxious about Saturday’s scan but funnily enough, I am not concerned about the trial, actually I am excited about it. I guess because I feel we are moving forward with treatment, doing something new.
Dylan has been playing with Joseph who also has neuroblastoma and with Robert, Kelly’s brother. They have a great time together playing computer games, Yu-Gi-Oh cards and light saber duels! Robert’s sister Kelly is 16 and is recovering from leukemia and suffering awful side effects of her bone marrow transplant and treatment. Kelly, Robert and their mom have lived here at the Ronald for almost 18 months already and they will likely have to remain here for a further 6 months. There are a few of us that we class as “Long Termers” here at the house and we have become good friends, and substitute family. I really would have gone around the twist if it wasn’t for the friendship and conversation I have with these families. Anyway, I was chatting with Kelly’s mom and she was saying how Kelly was feeling down and has lost contact with a lot of her friends after being away from home and school for so long, and that because she was no longer receiving actual chemo, she was indelible for a chemo angel to send her cards and letters. We got into a deep discussion about maybe starting a Leukemia angel group. Anyway, Kelly and her mom will work on that little project, but in the meantime…yes, here comes another favor I am asking from Dylan journal readers, if you find the time could you please send a greeting card, handmade card, letter or postcard in the mail to brighten Kelly’s day, I know she would be over the moon just to get a simple card from someone thinking of her. Kelly’s website and address is:
Ronald McDonald House
405 East 73rd Street
New York, NY 10021 USA
Thank you so much, Oh and by the way, Dylan is really making his way through the websites, thank you to Bri & Mike Crum, check out World Industries Website.
P.S Thanks again Barbara for letting me borrow your raincoat! :)