Wednesday, October 25, 2006

Test results

Dylan had his radiation simulation on Monday, neither of us were expecting what happened. Well first off they lay him on the table and line up all the red lasers, kind of like having a scan really. This took about a half hour and he had to lay very still. The areas that will be radiated are the 2 surgery points, the abdomen where the main tumor was removed and the neck where the lymph nodes were removed. The actual radiation will not be for at least a month (after the first round of hot 3F8) but depending on how he responds to that therapy, it may not be until he has completed all 4 rounds (4 months). After the simulation they told us they needed to give him the tattoos! Yes Dylan freaked out and I was worried on how he would handle that. Anyway, we put the numbing cream on, went back up to clinic for a finger stick blood test, then back to radiation for the tattoos. Dylan freaked when he saw the needle, he screamed “I want the machine!” Dylan thought it would be a tattoo gun and wanted that instead of a regular syringe. The first tattoo was done with lots of tears but it really was the fear of the unknown because after the first one he was fine, no more tears and he laid perfectly still, very brave and relaxed, saying “oh that one didn’t hurt, and that one hurt a bit” In total he had 9 tattoos done, but if you ask Dylan he will tell you he had 12 because they had to re-do 3 of them. Well let me tell you, after that Dylan felt on top of the world. He proudly announced to everyone he saw “I have tattoos”. The tattoo's are necessary so that during the radiation therapy the areas are exact, and they need the tattoos to be permanent so they get the same area to line up the lasers every time.

After meeting with the team, Dylan is back on GCSF injections but his platelets are hanging in there at 35. By the way, Nathan, who is on the hot 3F8, is having a great response, his scans look better already! We need to pray that he does not HAMA so he can continue to the next round. All children on 3F8 are tested for HAMA and we want them to be HAMA negative. If they are HAMA positive they cannot continue to the next round and they need to get as many rounds in as possible. HAMA means that the body recognizes that the antibody is that of a mouse and not of a human and rejects it, deeming it useless. Carter will start today and Dylan will start next Tuesday (Halloween). Yesterday Dylan had an ECHO (Heart test) and I got the results of the tests from last week. All Dylan’s results basically say he is still stable, and the scans are the same as the last ones. The great news is that his bone marrow results say that his marrow is clean! Yahoo! I assume the MIBG therapy did that. So we are heading in the right direction. His urine markers are a little lower too. Here are the official report findings…


FINDINGS: On the whole-body scan the abnormal foci of tracer activity appear unchanged in the cranium, left upper chest region, multiple vertebral levels, right anterior rib, bony pelvis and femora. On the SPECT study some of the lower thoracic vertebra appear slightly more prominent but this is a questionable significance.

IMPRESSION: Abnormal MIBG with evidence of metastatic disease to bone, grossly unchanged.

IN ENGLISH (LOL): The result is stable since the last scan, the spine shows some brighter areas but this could just be from more MIBG isotope being absorbed by the cells and is not evidence of disease progression, so is not to be of concern.

CT SCAN – Chest, abdomen, pelvis

FINDINGS: Compare with prior CT chest, abdomen, and pelvis from 25/8/2006

Previously described area of soft tissue density in the left thoracic inlet has resolved. There is no evidence of mediastinal or axillary adenopathy. There is no pleural or pericardial effusions. The heart is normal size. The lungs are clear.

The liver, spleen, gallbladder, and kidneys are unremarkable. Multiple clips in the region the left adrenal gland which peritoneum are again noted. The right adrenal cannot be visualized. The bowel is unremarkable. There is no evidence of obstruction. No new masses or adenopathy are identified the abdomen or pelvis. There is no intra-abdominal ascites noted. Stable osseous metastatic disease is identified.

IMPRESSION: Since 25/8/2005

1. Soft tissue density left thoracic inlet has resolved

2. 2. No new evidence of lymphadenopathy or intra-abdominal masses

3. Stable diffuse osseous metastatic disease

IN ENGLISH: Since the last scan and lymph node surgery, the neck area has cleared. His liver, kidneys, spleen, gallbladder and bowel are clear with no disease. There are no new solid tumors and the metal clips from the main surgery of tumor removal can be seen.


FINDINGS: Views of brain fail to demonstrate any evidence for hemorrhage, midline shift, mass effect or abdominal enhancement. The orbits are unremarkable without any evidence for abnormal mass lesion or abnormal enhancement.

The prior CT of the neck dated 25/8/2006 demonstrate an ill-defined soft tissue mass in the left supraclavicular fossa which measure 1.6 x 2.5 cm. This essentially completely resolved on the current study. No new abnormal mass lesions or abnormally enlarged lymph nodes are identified on the current study.

A number of mixed sclerotic and lytic areas are identified within the thoracic and lower cervical vertebral bodies. This is suspicious for metastatic disease; however , these findings may also represent treated disease since they are essentially stable when compared to the most recent prior study dated 25/8/2006

ENGLISH: There is no evidence of Neuroblastoma in the brain and the lymph nodes. There is Neuroblastoma in the bones of the spine and neck (this has always been there and is stable)


HVA (Normal range is <13)>

VMA (Normal range is <7)>

The previous results in August were

HVA 43

VMA 29

So the urine markers are coming down, which is great. If the HVA or VMA increased with a large jump, it is a sign of disease progression.



1) Bone marrow, left posterior iliac crest; biopsy:

Normocellular bone marrow (Approximately 90% cellularity) with trilineage hematopoiessis and numerous fragmented macrophages. The M:E ratio is increased with adequate maturation in all cell lines.

- Megakaryocytes are normal in number and morphology.

- We see no evidence of Neuroblastoma

2) : Bone marrow, right posterior iliac crest; biopsy:

Hypercellular bone marrow (Approximately 30% cellularity) with trilineage hematopoiessis. The M:E ratio is decreased with adequate maturation in all cell lines.

- Megakaryocytes are normal in number and morphology.

- We see no evidence of Neuroblastoma