Pathology Update

The NB coordinator at Cook called Aaron back about an yesterday afternoon. The final lab results came back as spindle cell sarcoma. Cook Children’s Oncology position right now is to just continue to monitor William, meaning no additional treatment (chemo or radiation). Just as a precautionary step, we went into the clinic today to sign some consent forms for the lab work to be sent to the Children's Oncology Group (an international group of pediatric oncologists) for a second opinion/analysis. This is the best news we could have asked for! No more treatment and we will work in the further monitoring with William’s already scheduled NB scans. We are praising God for this wonderful news!

Love, Angela

Friday Post-Op Report

Welcome to the rollercoaster. The post-op report was not what we hoped it would be. William did end up getting his mass completely removed but we added a port to his chest. The initial pathology during surgery came up with ‘small blue round cells’. If you Google that you will come up with a few options, none of them are good and they are all a type of carcinoma, including NB.

William is recovering well. He is taking a nap with his dad, as I type this, and sort of watching the movie Cars. J We are on the Oncology floor of Cooks for tonight and should be coming home tomorrow.

We will not get all of the final lab reports until probably Tuesday, next week. Please keep praying for a miracle. We sure are.

Thursday Update on William

The last 24 hours have been very positive. When Aaron met with the surgeon yesterday, the surgeon mentioned that he did not feel like William’s mass could be neuroblastoma (NB) based on a few things. This surgeon operates on more than just children with cancer. He said the shape and location of the mass is similar to other children that run into something, broke some blood vessels and build up scar tissue. The mass is near perfectly circular; William’s initial mass was lumpy with tentacles. Also the mass is very close to the skin and a long distance from the original tumor. Usually a child must have cancer in their bone marrow for a new tumor to show up in a place not in, or adjacent, to the original tumor location. William never had NB in his bone marrow. The mass could still be tons of other things. The surgeon said the soonest he could remove William’s mass is Friday. We are signed up for 815.

Today William had his MIBG scan and to our surprise the surgeon decided to watch the radiology techs perform the scan. He stepped out towards the end of the scan to tell Aaron that so far, nothing has lit up…meaning, no NB! At that point, the scans were not final but this news was a breath of fresh air. Our plan is to remove the mass, send it to the lab for analysis and not put a port back in!

We are still praying that the mass is not a malignant tumor of any kind.

Monday Scan Results

We got some upsetting news on Monday and I have been sharing with folks as I encounter them. But I thought I would send out a quick note to let you all know so I will quit feeling guilty for not making personal phone calls to everyone.

William had scans last Friday. We got the results Monday around 1130 that he has a golf-ball sized mass in his left pelvic area. He does not ‘appear’ sick. You can feel the mass, it is very close to the skin. The oncologist said that it looks like neuroblastoma (NB) based on the CT scan. He will have a NB-specific scan tomorrow (called MIBG) and a bone marrow aspirate to see if the mass and bone marrow absorbs the isotope, like NB would. We might have the scans back by Friday but maybe not until Monday. We are talking to a surgeon today to see how difficult it would be to remove the mass. It needs to come out but that induces a new predicament. Once the tumor is removed, William would be considered without disease. That sounds great but we know that even one cell remaining could cause it to come back. There is no protocol for patients with no disease, only for relapse disease in bone marrow or inoperable masses. So then we would just follow the next course of action suggested by William’s oncologist which is 6 more months of low-dose chemo and radiation (which honestly sounds counter-intuitive to us considering the first round of therapy was every possible chemo, at the highest dose he could stand).

I’m sure you can understand that we are stunned considering he is acting like a very normal, rambunctious 3 year old as opposed to the sickly little boy he was when he was first diagnosed. We are also very stressed seeing as we need to act very quickly to understand what the BEST, next course of action is. And very disappointed that we put our child through a toxic 16 months for this awful disease to return in seven months. We have faith and hope that this is not NB. But we need your prayers for miracle healing, peace during the waiting period and God’s wisdom to make the right decisions over the next week.

Thank you all for continued support, thoughts and prayers.