Sunday, November 23, 2014

NY (3F8 Round 1)

Sunday morning with Beckham at the airport seems like we've done this so many times before. A normal life seems so far away.

Since last Wednesday Beckham has been getting a shot each day. The shot is a dose of GCSF, a immune booster. This is in preparation for next weeks 3F8 antibody treatments they want his immune system to be charged up and ready to attach whatever the 3F8 attaches to. The needle on the syringe is really small. It's only about a half an inch long and very thin. Because it's so small it's not really that painful. I think It's probably more the anticipation rather than the actual pain that makes it so scary. I found a way to help it to not be so scary for him. For the last couple of days I have told him that after getting his shot that he can give me a shot. After I'll give him the syringe and let him take a stab at my arm. The crying stops at once and he's all smiles when I give him the needle. I have to guide him a little to make sure he gets me straight on, but other than that he's on his own. I gotta admit this is a little scary for me. Friday night after going over some proper techniques on how to hold the needle he poked me 4 times in my shoulder. He loved it, and for me It actually wasn't that bad. For me it's worth a little bit of pain to get Beckham laughing.
Today we were mid flight somewhere between Chicago and New York when it was time to give the shot. Beckham needed a diaper change so I hid the needle and we went into the tiny bathroom. He wanted to pee but was to short to stand and I didn't want him to sit so I held him up in the standing position over the toilet. To hold him I had to lean forward pressing my head against the wall to hold me and him up. When he finished I stood him on the closed seat and as he made faces in the mirror I slipped around and stuck him in the leg. He cried for a sec until he asked me if he could give me a poke. I said yes but just then the needle fell on the ground. Oh no! Sorry not now Beckham. Tomorrow for sure, I promise
While scrambling to get Beckham and all the luggage of the buss near the RMH. A guy jumped in to help. I looked up and the guy helping me was Dr. Roberts, one of the main Doctors that we work with at MSK. I shook his hand thanking him and commenting how wonderful it was that Sloan sends their doctors out to help make sure their patients arrive safely.

This morning we checked into clinic at 8am. They sent us strait back back to the bed area to begin our wait for treatment. They placed an IV on Beckham's arm which wasn't very fun. After that we went to the play area to have a little fun. We played Beckham's favorite game Skylanders for a little bit. The music ladies come in on Mondays and after the game we sang some songs and played with some musical instruments.
They started the 3F8 infusion at 12:05. Just like the last doses of 3F8 its ran over 30 minutes with a 10 minute flush at the end. About 20 minutes in Beckham started feeling pain in his belly and lower back. He was really uncomfortable. He kept moving around and couldn't get into a spot where he could relax or brace himself through the pain. To me it seemed like he was in a little more pain than during the last treatments.
We ended up getting out of the hospital at 7pm. Beckham didn't have allot of energy but all he wanted to do was go to the toy store. We had already missed dinner at the RMH so I figured we may as well go down to FAO Schwartz and look around. By the time we got down there it was 7:45 which gave us just 15-20 minutes to look around. We looked at the dinosaur and the Nights in Armor figurines then it was time to go. Beckham was totally out of energy and didn't protest having to leave so soon. He fell asleep shortly after leaving and was still sleeping when we got home.
The room that night was 76' which made it hard to sleep comfortably. Beckham had pulled off all his clothes and was just in his diaper. So to cool the room down I opened the window. That helped but being on the 3rd floor the noise from the street made it a little hard to sleep. There are 2 twin beds in the room but Beckham wants to sleep in the same bed as me. It's a little hard to sleep. It's a good thing I can fall to sleep about anywhere.
We ended up sleeping in. I woke up at 9 and Beckham until 11

Today first thing we went over to Walgreens to try to find some food Beckham would eat. He picked out tortilla chips and some shredded mozzarella cheese to be melted on them and some eggo waffles. The total was $15. Yikes!
The waffles he wouldn't eat because we didn't have any butter and the chips and cheese he just nibbled part of a chip that didn't have cheese on it. It's really frustrating trying to find things that he will eat.
At 12 we went over to the hospital to get a blood draw. They want to get a blood sample each day this week including the days that we won't be in clinic for treatment.
I was hoping it would be a quick in and out. Since he had the IV still in his arm he shouldn't need to get poked.
In the IV room they tried to draw blood from the IV but it wasn't working. They tried a few things but couldn't get any blood return. So they pulled it out and had to place another one in the other arm. The nurse poked the needle in but couldn't find the vein. She kept moving it around for what seemed like a minute or two. All the while Beckham was crying. She gave up on that one and pulled it and had to go again. What an experience for Beckham. He was crying but was all things considered ok. I was in charge of holding his arm down but I didn't even have to press down, he held still through the entire ordeal.
After getting out we started walking towards the Metropolitan Museum of Art. Someone had told me about their Knights and Armor exhibit. I had looked it up online and the exhibit looks like something Beckham will love. We talked about it this morning and he's exited to see the "soldiers"
After about a 30 minute walk we were at the front steps.

He loved the Knights, but almost as exited to play with the toy "soldiers" in the museum store

We got up early and ate breakfast with our friends David, Dawn and there son and daughter John and Charlotte. John is 4 and has been in treatment for a brain tumor.
After breakfast we left for the hospital. It was pouring rain outside and luckily we were able to catch a shuttle bus that was transporting some family's from the RMH to some of the hospitals in the area.

The 3F8 was ready a little earlier today. They started about 11. This 3F8 seems to be allot harder on Beckham. It seems like it's the same amount of pain but with other side effects like a constant cough. There's allot of mucus buildup in his throat and he has a constant cough. On Monday he actually threw up a bunch of water and mucus

After the treatment was finished we went home back to the RMH to let Beckham rest and prepare to for the Macy's parade balloon inflation at 5. The RMH has a couple busses that will take us over to the west side of Central Park where they are inflating all of the Parade Balloons.
A couple interesting facts are, There are 96 balloons in the parade. The balloons are filled with helium to enable them to float and they use allot of helium. Macy's in the second largest user of helium in the country, second only to the US Military.
The weather was rainy and cold also Beckham wasn't feeling well. He was still really tired from treatment. He got up to look at s couple balloons but after a few minutes his energy was spent and all he wanted to do was sleep. So after a short walk we returned to the bus to let Beckham rest.

After getting home Beckham wanted to relax and watch a tv. It wasn't to late in the evening and the rain had stopped so I decided to go on a run. Over the summer at night I would often go for runs for an hour while Beckham was settled down watching TV or sleeping. He is really good about staying in the room while I'm out. After about 18 minutes into my run I got a call from the RMH saying they had a little boy with them that had been wandering the hall. I turned around and cut back through the city taking the quickest way back I could. When I arrived he was playing with the ladies in the lobby. He didn't have any pants on just hanging out in his diaper. We had another talk about him not leaving the room and he said he was sorry.

We got an early start this morning. The buses were scheduled to leave at 7am
It was cold cold. We bundled up really well. The buses were NYC police department buses. Basically older school busses painted the police department colors. Really fun ride.
The parade starts on Central Park West right by the Museum of Natural History and goes south down to the bottom of Central Park then turns east and goes along Central Park south, at the bottom east corner of the park it turns south onto 5th avenue. And continues south down 5th until it ends at the Macy's store in Midtown.
The buses took us to where we were going to watch the parade. The New York Athletic Club on Central Park South (59th south)

When arriving we went up to the 10th floor for a light breakfast of muffins, fruit and juice.

Afterward we were able to view the parade from a couple rooms that overlooked the street there was a few different areas that they had prepared for us. We could view it on the 10th floor from a couple different rooms, from a balcony on the 14th floor or a VIP area down on the street.
We checked out all the areas. The street was fun but it was so cold and with Beckham still feeling weak it was a little hard. They had parked one of the buses parallel with the road and with the bus running with the heater on it was a great place to sit.

The Balcony area:

The street:

Room on the 10th floor:

Santa Claus!

After Santa Claus past by the parade was over where we were at so we made our way back down to the buss's.
Once we got back to the RMH it was 12 and it was time to go over to the hospital to get Beckham's blood draw. As we started walking over it started to rain and then snow. It was really cold.

It was a little weird being at the hospital on a holiday. It was hard to imagine that this was really Thanksgiving Day. I never thought I would be doing this with Beckham far away from home during a holiday.
Luckily Beckham's IV was cooperating and they were able to get it to work for the blood draw. The last thing Beckham needed was to get a new IV put in today. After getting Beckham all settled back into the stroller with his blankets all around him I stopped by the playroom in the clinic area to get some food. They had a full Turkey dinner with all sides catered where kids and families that were in hospital could come and dish up and take back to their room. Beckham didn't want anything not even a roll. I made me a good plate and sat in the clinics waiting area and enjoyed my meal.
When we got back home Beckham was glad to finally relax and just watch TV. Half sleeping and half watching
At 3 we went down to the kitchen area where the volunteers and the house had prepared an amazing dinner. The tables where decorated really nice. It was great.
I tried to get Beckham exited to eat something so I carried him around so that he could look at all the food. Nothing caught his attention. There was a bunch of candies on the tables for decoration along with some small chocolate turkeys which Beckham thought were really cool. I tried to bribe him into eating by telling him he could eat one if he ate something. Not even a bribe with candy involved would work.
A family sat down at our table and it turns out they are an LDS family from Baltimore that was out there getting treatment for their daughter who was suffering from seizures.
After eating and talking to them for awhile Beckham had fallen asleep in his chair.

That afternoon and evening Beckham slept allot.
While he was sleeping I was able to go for a 8 mile run around Central Park. It was pretty cold. Surprisingly there were actually a few other people running. I thought I would be the only one out on this very cold Thanksgiving night.
At 11 Beckham woke up and was craving a Capri sun juice drink, so we bundled up and took a quick walk over to Walgreens to grab a box of them. After drinking one he was happy and fell right to sleep.

Friday we were in clinic at 8. I was hoping that they were able to start Beckham's 3F8 sooner than later today. Sarah flys into JFK at 4 and I think for us to make it there by then we'll need to leave the RMH no later than 2. I still need to pack up so I'd like to get out by 1. Right now I'm wishing I had got a later flight for Sarah, we'll need a little bit of luck to be able to pull this off.
They were able to start

- Posted from my iPhone

Location:N Terminal Dr,Salt Lake City,United States

1 comment:

  1. Thanks so much for giving us a glimpse into your lives right now.