Saturday, May 24, 2014

NY (scans) May 19-24

Beckham and I arrived in NY 5:20am.
We're out here to get a series of scans and tests done at Memorial Sloan Kettering Hospital. They are checking to see what effects the last 2 rounds of chemo have had on the cancer.
Beckham was so exited to finally be on our way. He couldn't wait to get in the car for the drive up to the Salt Lake airport. When the airport came into view from the car he let a scream of joy. Down to the terminal he was running wanting to race me to the gate. It was a 11pm red eye flight but Beckham wasn't going to be sleeping anytime soon.

He ended up falling asleep an hour into the flight and I was able to get a little sleep before we landed.

We checked into the New York Ronald McDonald House a little after 6am. After a few more hours of sleep we were dressed and ready to go enjoy NY for a couple days. Beckham scans were scheduled for Thursday and Friday which gives us a couple of days to enjoy the city. Beckham has been wanting to go and see the Dinosaurs at the Natural History Museum and also he's been talking about the Zoo.
Tuesday was a beautiful sunny day with Wednesday looking like it was going to be stormy so we decided to go to the Zoo first and the museum on Wednesday.

The zoo was small but great. So great to see Beckham run around full of energy and act like a kid.
After the zoo we walked over the the FAO Swartz and picked up a sucker from a candy store on the way back home.

First thing we made what ended up being a twice a day stop at McDonalds for 8 chicken nuggets and 8 ketchups. If I say nuggets without quickly adding ketchups he sharply reminds me it not nuggets but "nuggets&ketchup"
To get to the museum we cut across Central Park and were able to walk by the place were people are piloting radio controlled sail boats. Really cool

The zoo was great. Of coarse Beckham was heading to the dinosaurs first thing

After the museum we walked down to the Temple and around Central Park then back to the RMH

Every night at 6:30 a different volunteer group will provide a dinner for families staying at the RMH. There is always lots of food for everyone. It's really amazing all that goes into the RMH to enable it to function. The Ronald McDonald organization provides so much help to families dealing with tough medical issues it's really hard to imagine what it would be like without them there.
On the 2nd floor of the building there is a large dinning area with tables and chairs for about 100 people and right off of the dining area there are 5 large kitchens and in each kitchen area there are large commercial refrigerators, freezers, sinks, ovens and microwaves. Each family has their own cupboard space and area in the refrigerator and freezer.
Thursday night company I think it was a bank provided an amazing dinner with different types of Pasta, Chicken and Salad.
They also brought in a guy that's a Professional Balloon Ty'r. Yes this is a real profession. He ties balloons at parties full time.
There were about 15 kids there for dinner and he was tying all types of balloons for them. Animals, flowers, swords, shields, helmets, bow and arrow's and even jet packs. It was amazing. The kids were going crazy.

In the morning we headed out for our first doctors appointment. We were at the Hospital at 11:30am for Beckham to get his Echocardiogram.
For this test Beckham lays on a table and they gently rub a scanner over his chest. The scanner takes pictures of the heart from different angles.
This is to check for any damage caused by the chemo.
When they called us back Beckham was having a great time in the playroom area and he wasn't happy that I pulled him away from his big bin of animals.
When we got back to the room Beckham wouldn't lay down on the exam table and wasn't cooperative with the nurses and I was starting to think that this wasn't going to go well at all. The nurses offered him chocolate and prizes but he wasn't having any of it. Then they put on the cartoon Tom & Jerry. That was all it took he was all smiles. His only request was that I lay by him on the bed and watch.
I was all for that!
After the Echo they sent us home for a bit but wanted us back at 2:30 to get his MIBG injection.
The injection is a small dose of radioactive dye that they inject in him though his line. The dye circulates through his body and the cancer cells will take it in. Tomorrow when he goes in for the MIBG scan it will pickup and show the dye and hence let them see the cancer.
On the way back to get the injection with Beckham riding in the stroller, we passed a Godzilla movie poster on the road and Beckham wanted me to go back and look at it. I told him we were late and didn't have time. He kept asking and asking and wasn't going to give up. So I quickly turned around and raced back. The sign faced out to the road. Rather than going to the corner of the sidewalk I took the stroller right off the edge of the curb out into the street right in front of the poster. When I landed the stroller frame broke right at one of the joints.

So you could say Gozilla got us!
I was able to get to the hospital and after Beckham's Injection I wrapped it up with a roll of medial tape. Almost like new!

Later that day we met up with a group from Candlelighters NYC. Candlelighters is an organization that puts together events and activities for families whose children have been diagnosed and are going through treatment for cancer.
The activity today was to go to the Toy Store FAO Schwartz which is at the south east corner of Central Park.
We met near the RMH where 2 shuttle buses picked up parents and about 15 kids.
When we left it was about 4:30 which was rush hour. But that didn't slow us down much. We had a 2 car police escort. Lights and sirens blaring! NY cops are awesome!
When we got there everyone went into a back room where they had totally decked it out with balloons and party decorations. They had dinner ready for us and plenty of treats. All the kids got party hats.

From there we went upstairs to the big piano they have in the floor and all the kids were able to play around and have fun on it.
Then they took the kids over to the area where they have every type of candy you could imagine and gave them a bag let them fill it up with any candy that they wanted. All Beckham wanted was skittles:)

After getting candy we paraded back to the room to party a little more. They decorated sugar cookies and had some amazing cake.
It was such a fun night. The kids had so much fun!

Friday we got an early start. They wanted us checked in at 7am.
No food or drink for Beckham this morning.
First thing we picked up his Contrast.
Contrast is the juice like fluid that he needs to drink in preparation for the scan. The NG tube made it easy to get it down. After that we just hung around waiting 2 hours for it to go all through his body.
At about 10:30 we went down to Nuclear Med. to get prepped to scan.
Beckham got a little scared seeing all the big scanning machines and wanted me to hold him. The doctors are really good with kids and once they started talking to him he calmed down. For the scan he needs to be asleep so they have an anesthesiologist there to help him through that. I held him while the doctor injected the sedative. Beckham was completely out in less than 5 seconds. Once he was asleep I gently laid him on the table of the scanned and the nurses took over from there.
Once the MIBG scan is done while he's asleep they will take him back up to the clinic on the 9th floor and do the Bone Marrow Aspirate. This is done by sticking a large needle into 4 spots in his pelvic bone (2 in the front & 2 in the back) and taking a sample of marrow.
He was expected to be waking up in recovery in 2 1/2 hours.

When Beckham woke up he wasn't in a good mood. He was really groggy and in pain. They gave him some Tylenol and gave me another dose to give him in another 4 hours.
After leaving the recovery room we sat and hung out in the clinics waiting area.
The initial results from the scan were going to be ready soon and and as soon as they are Dr Modak is going to call me back to his office to go over them.

The initial scans showed that the cancer had receded from the last 2 rounds of chemo. Which was great news.
But it's still there...
Ideally after the Front Line Therapy is completed (chemo rounds-surgery-radiation) the goal is to have no residual disease (zero cancer)
And then to move to the next phase of treatment which is to make sure it doesn't come back.
But because Beckham's cancer is still there and all the "tools" at their disposal have been used. The next step is to move to treatments that are not Standard Of Care treatments. These treatments are, Clinical Trials.
What doctor Modak recommended was that we put Beckham on the NK trial that they are currently working on, and plan on being back to start treatment Monday June 1st

- Posted from my iPhone

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