Sunday, July 27, 2014

NY (NK 3F8) July 27-Aug 11

We're off again to NY. Time flys by so fast I can't believe it's already time to go back. This morning Sarah and Navy dropped me and Beckham off at the airport. It's so hard to say bye to Navy she always gets so upset. She so wants to go with us.
We should be gone 2 weeks. I hope we're not gone any longer I already miss home.

Beckham had a good flight

We landed about 4. It was early enough in the day that I would try taking another bus route over to the RMH. In google maps there was a route that was calculated to be a little quicker. I waited to the bus for about 20 minutes before I found out I was waiting at the wrong spot. Also I had bought only a metro card and not a bus ticket. A metro card is card that is credited $ so that when you purchase a ticket (before getting or the bus or after getting on the bus) you aren't using cash or credit card.
The bus I got on took me to a station in Queens. I was thinking I would then catch a bus over to Manhattan. After going back and forth I finally realized I needed to get on the subway. The station was super busy and really dirty. Subway stations are about the worst places to take a stroller. It's very hard to find an elevator and if you do find one they are the slowest, smallest and dirtiest elevators you can imagine.
When we finally got to Manhattan I didn't even try to find an elevator, with a backpack, holding 2 bags, stroller and Beckham in my arms I climbed the 4 flights of stairs to get to the street. Needless to say I got a few funny looks...

Beckham was exited to leave at 8am in the morning until we made the turn heading in the direction of the hospital. For some reason he thought we were going to the zoo...
He was super mad and very upset. When we got up to clinic he was yelling and screaming wanting to leave. It was sad. At one point he jumped out of the stroller and started to run. I had to just grab him and carry him under my arm to our room.
Once we were there he was super upset at me and ordered me out of the room! I gladly gave him his space and waited outside. He eventually calmed down and asked me to play a game with him on the iPad... buddies once again:)
It was a long day because they couldn't egg started with chemo without a urine sample. Right now beckham is in the middle of potty training and doesn't like to go in his diaper and the big toilets scare him. Pleading with him to wet his pants so we could get a sample wasn't working. I ended up getting a bowl and putting it on a chair while he sat on my hands hovering above it. After a few try's and allot of holding on my part he pee'd at 11. Once the urine got back from the lab it was 1:30 and they started the 6 hour chemo shortly there after. Which meant the soonest we'd be done today would be 7:30-8
After getting home we went out for a jog around Central Park. Beckham loved it. Sitting in the stroller wrapped in his little brown blanket with his doggie pillow behind his head he had a front row seat to check everything out. At dusk with a slight breeze the temperature was perfect. There are so many people out enjoying the park.
Sometimes you see some amazing things in Central Park. Last time we were out here I was jogging down a hill and a guy on a bicycle raced by and wrapped around him was what had to be at least a 6' snake. The snakes head and about 2' of its body was above the guys head leaning into the wind. It was crazy. I wish I could have taken a picture.
Unfortunately there was no snake sightings on our run tonight. Beckham fell asleep halfway around.
What a great way to get him to sleep, I'll have to do this more often.

We were at the hospital at 8am. Today I prepped Beckham by telling him when we woke up that we were going over to the hospital before we went anywhere else. He was upset and didn't want to go but by the time we got up to clinic and waked back to the room he was still upset but he had calmed down a bit.
Although he didn't want me to go in the room with him and ordered me stay out. I took a seat on a chair outside the door in a little waiting area. After a minute or two Beckham came out of the room pushing his stroller with his IV pump in the seat. He was heading for the door.
What a guy!

Today they did the same chemo for the same amount of time as Monday but I was able to get Beckham to pee in a bottle right when we got there and they were able to get it right into the lab for testing.
He's loving being able to pee in a bottle in his room. It saves time and effort. More time to watch Scooby-doo

Everything came back good and they started the infusion about 10:30
We were able to get out a little early, about 4

We headed over toward Central Park to look for something fun to see.
We found a guy blowing huge bubbles. Very cool!

We were back at clinic at 9 today. It was really nice to sleep in just a little bit. Today Beckham wasn't upset when we got there. I had him pee in his bottle right away to make sure we could get going ok chemo right away.
But after talking to the Doctors they had decided not to do anymore chemo so all we were going to do today was give Beckham fluids and hang out till about 4.
We ended up getting out about 3:30 and I told Beckham we could walk down to Central Park and over to the Skating rink where there were some carnival rides. On they way over he fell asleep and so I started walking back toward home.

I took Beckham over to a friends house to stay while I went in to get my blood filtered for NK cells.
Johnny Jackson a really good friend of mine has a sister who lives right off Central Park on 63rd. Johnny happened to be in town and was happy to watch beckham at his sisters house.
After I was done I picked Beckham up and we decided to walk up to the Natural History Museum which is a few blocks north from where we were at.
Beckham took a nice nap on the way up and by the time we got there we was fully charged and ready to see Dinosaurs.

Today we arrived at clinic at 9. And waited for Dr Modak to bring in the NK cells for infusion. There was some delay with the lab having the cells prepped and it wasn't until 2pm until they were ready. After the infusion at 2:30 we had to wait another 4 hours before we could leave.
As we were ready to go the candy cart came by and Beckham loaded up on his candy stash.
Every Friday evening a group of volunteers bring around a cafeteria cart that is loaded with all sorts of candy, cookies, chips and all sorts if goodies. They go from room to room and let the kids pick whatever they want. It's really fun.
When it was time to leave the hospital seemed deserted. Most everyone in the clinic had already gone home. Beckham was exited to leave and was jogging out in front.

This morning we got the stroller and backpack loaded up with water, treats, meds & diapers and headed out towards the Zoo.
On the way we stopped by a little grocery store and picked up 2 chocolate milks for Beckham.
Beckham was really exited to check out the zoo. First we looked at the map to see what we wanted to start with. Beckham loves looking at maps.
First we stopped to look at the seals. We then checked out the Bird area

We spent the next hour looking around and fed some birds and a chipmunk some fig newtons then we were ready to go.

Next we walked over to the Central Park Carrousel

After the carousel we Beckham wanted to go over to the museum to just look at the toys. So that's what we did.

Finally Beckham had played played until his energy was gone and laid down in the stroller and said "let's go"
Shortly after walking out the door he was fast asleep. While he was sleeping I took a nice relaxing stroll through the park and back to the RMH.
That evening there was a BBQ dinner for all the RMH visitors on the back patio area on the 3rd floor. The patio area is a really big area with tables and and a large outdoor kitchen.
During dinner there was a lady there that was tying balloon animals for all the kids. Beckham and his friend Jamshied got space guys

Jamshied has cancer as well and the cute little boy with the red shirt to the left of Beckham is Malcolom. Malcolom is 5, he's from Iowa and has Neuroblastoma.

Today was the 1st day of the 3f8 treatments. He'll get the 3f8 today thru Friday.
The labs this morning showed that he was Nutrapenic meaning that his white blood cell count is below .5 and he is susceptible to picking up a bug and getting a fever. I'll have to be very careful to keep him away from groups of people and make sure everything is super clean around him.
When they started the 3f8 Beckham was playing with some toy animals with Jennifer. Jennifer is there to help relax the kids as they are dealing with the pain from the treatment. She has quite a few different things she uses as well as toys and relaxing music to help.
The 3f8 infusion takes 30 minutes.
About 15 minutes into the infusion Beckham turned to me and said that he was feeling the tightness in his chest. He put his toys down and laid down in my lap. He wanted to lay on his doggy pillow and have his brown soft blanket covering him. After about a minute the pain got stronger and he was in allot of pain for the next 20 minutes. After the worst of the pain subsided there was waves of pain for the next couple hours until we were ready to leave. After getting back to the RMH and getting him into his bed another wave of pain came over him. He said it was in his belly and head. He said that he was going to throw up and yelled for me to get a bowl. Luckily I brought a plastic tray home from the hospital. I grabbed it and put it in front of Beckham and he through up with everything that was in his stomach. After cleaning him up he was still in allot of pain and so I gave him some pain medicine. After a bit he fell asleep for about an hour. He then woke up in more pain and I gave him another small dose of pain meds. He was still in allot of pain and I was wondering what else I should do. I couldn't give him anymore medicine for another 4 hours. He then started demanding to go to the toy store so we could get some more candy corns. A couple of days ago we stopped at FAO Schwartz and got some candy corn from the bulk candy area.
I told him we couldn't go because he was in allot of pain and needed to rest. He was super persistent, he even got off the bed and headed for the stroller.
This is one of those moments that I question if I'm being a good parent. Should I put my foot down and stay or should I take him out for candy? I decided to take him. I could walk straight over to the park and get on a trail and shoot straight down to the you store which is on the south east corner of the park. We would avoid most of the crowds and the trail will be smooth enough where the stroller ride will be fairly smooth.
I loaded the doggy pillow, Beckham and covered him with his blanket. Although the was hurting he was glad to get out of the house. I also put on my running clothes so if Beckham fell asleep and was comfortable after getting his candy I could maybe do a run around the park.
We made it down to FAO Schwartz and got the candy corns. Beckham was comfortable and once we got back out to the park he was asleep. So I kept running and by the time we got back Beckham was still asleep and we had gone 9.5 miles

After getting back Beckham was feeling allot better. Together we watched a show about sharks and then a show on dinosaurs before going to bed

When we got to the hospital Beckham was in a very bad mood and didn't want to be here. He was kicking and screaming and trying to run back to the elevator. Once he was back in the room he settled in. They were able to start the 3f8 a little earlier than yesterday

Posted from my iPhone


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