Tuesday, March 11, 2014

MSK 1st trip-Brian

Monday morning we loaded up the kids early and headed to the Salt Lake airport. Flying Nonstop to New York to meet with the Doctors at Memorial Sloan Kettering on Manhattan island a few blocks east of Central Park.

Met with the doctors and went through another round of Tests. They want to do another MIBG scan a CT scan and and another Bone Marrow aspirate from the front of his hip bone.
They normally do 2 on the front and 2 on the back but because Primary Children's had done the back last week they aren't going to take samples from the back. I was glad to hear that.

- Posted from my iPhone

Monday, March 10, 2014

MSK 1st trip-Sarah Mar 10-14

I am so behind on blogging. I keep telling myself I will blog tonight and then it's a week later.
New York was great! Like really really great! We went out Feb through Feb . We brought out the whole family and made it a little vacation too.
First off I want to say that I love the doctors we have now. They wonderful and so caring. I know they want the best for Beckham. I just wanted to see what other treatments were available for him. I read a lot about his cancer and how we can potentially beat this beast.
Sloan Kettering has more available to them then some hospitals. In the neuroblastoma cancer group I am in it is always brought up as a place to go and get 2nd opinions.
After meeting with the staff I was very impressed overall. I have been having a very hard time with all of this and yet with the progress he has made have wondered what Beckham's life is going to bring him. I see my friends and family post about different milestones their children are making and while I am genuinely happy and excited for them I found myself wondering later if Beckham will get to experience them as well. I am talking about simple things like going to school, learning to swim, riding a bike, etc.
Okay..I am off track now...back to the hospital visit in NY. What I meant to get at is after meeting with the doctors at Sloan Kettering I finally felt some optimism about his treatment.

MSK 1st trip

- Posted from my iPhone

Friday, March 7, 2014


Primary childrens is recommending stem cell transplant but we're having doubts that this is the right thing. Sarah has heard allot about the different types of treatments at New York's Memorial Sloan Kettering. I talked to Dr Kushner on the phone and he invited us to come out there to have Scans done so that they would be able to give us a recommendation. They specialize in treating Neuroblastoma and are currently treating kids from all over the world.

- Posted from my iPhone

Thursday, March 6, 2014

SL Followup Tests

March 5-7
Beckham went in for tests to get see what effects the last 6 rounds of Chemo has had on the Cancer.

They first checked his hearing. One of the side effects of some of the stronger Chemo's is that they can cause some hearing loss.
The tests came back showing a loss of hearing in the higher ranges. They say that Beckham will need hearing aids. This came as a shock to us, we haven't noticed this with Beckham. This news was heartbreaking.

The Next day they did a MIBG scan. For this test they have Beckham drink a juice that they call Contrast. Whatever is in the drink will get sucked up by the cancer and in the scan areas that contain the contrast will light up really bright and show where are the pockets of cancer are hiding. For the scan they need Beckham to be really still. For kids they will usually give them meds to put them to sleep.
After the MIBG scan while Beckham was still sleeping they rolled him over to Surgery and did a Bone Marrow Aspirate. To do this they stick a large needle into his hip bone and suck out some bone marrow. They do this in 2 locations. On his rear, to the left and right of his hips.

The next day the doctors met with us to share the results.
The scans showed that the cancer had shrunk but not as much as they would have expected. There was positive news... the bone marrow test showed that the marrow was clear of any cancer.
This news was a shock. It's hard to describe the feeling hearing that type of news.
The doctors recommended that even with the cancer down to the levels that they would like to see they would still recommend moving to the next phase and that would be the Stem Cell Transplant.
Stem Cell Transplant is a very hard round of chemo that knocks the bone morrow down so far that without "rescuing" it by injecting healthy marrow. The body wouldn't have the strength to grow back marrow on its own.
A child that goes through this process will typically be in the hospital for a full month. It's a very tough experience.

We started to mentally prepare for this possibility. There is hope of a different outcome... Next week we are flying our to New York to Memorial Sloan Kettering to get a second opinion.

- Posted from my iPhone