Tuesday, June 10, 2014

NY (NK 3F8) June 1-21

Me and Beckham are heading back to NY for the round #1 of his NK cell treatment.

Flew out of SL on a beautiful Sunday morning. We left a little later than I wanted and worried that we would miss our flight I went a little above the speed limit and got us to the airport in a record 37 minutes.
From SL we flew to Denver for a 2 hour layover then off to Newark New Jersey.
We arrived about 4:00 and caught a cab across the the Hudson River into NY. Traffic was horrible and I quickly got car sick from the aggressive jerky driving of our cab driver. I thought I was going to throw up in Beckham's backpack a couple times.
Beckham enjoyed the ride and luckily laid down in my lap for most of the ride.
By the time we finally settled in our room at the Ronald McDonald house, diapers changed, beds put together it was 11

Monday morning we were at the hospital bright and early at 8am
Today was going to be a long day for Beckham. They plan on giving him 3 different types of chemo throughout the day. Beckham did really well he spent most of the day in the playroom playing. When the nurses needed to change the chemo on his IV pole they had me wheel it out into the hall. They did their thing and we where back in the playroom.

We ended up leaving at 8pm
We were both exited to get out and get some fresh air.

Tuesday we were there again at 8am. Today they plan on giving Beckham 2 different types of chemo. Again Beckham spent almost the entire day in the playroom. The ladies working in the playroom near the end of the day said that Beckham may have broken a record for the most continuous time spent playing in the playroom.

Wednesday we were there again at 8am. This was supposed to be a short day because the plan was to only give Beckham 1 type of chemo. If all went well we should be out by 12.
After getting out I thought it would be fun to walk over to the Natural History Museum.
That morning I made the mistake of telling Beckham that we were going to be able to see the Dinosaurs at the museum after we got out of the hospital. I say mistake because right after we walked in the hospital door that morning he was already telling me that we needed to leave to go to the museum "right now!" He was relentless all morning he kept demanding "let's go see the dinosaurs now!"

It worked out that we got out of the hospital a little after 12 and started walking towards the Museum.
To get to the museum we walked through Central Park. The day was beautiful, not a cloud in the sky and the perfect temperature.
Walking down a trail Beckham asked me what that sound was... There were lots of birds in the trees chirping. I told him it was the birds up in the trees.
He replied "I can hear the birds, I love them!"

During chemo rounds 5 or 6 Beckham's ears were damaged and he lost the ability to hear sounds with pitches in the higher range. Sounds like birds chirping. A few weeks ago we got him his new "special ears" He's really good at wearing them.
I'm so happy that this afternoon with his "special ears" he was able to hear the birds.
I love that we can hear the birds together... I love the birds too!

Of coarse we went to see the T-Rex first

After about an hour Beckham was ready to go home. His eyes were starting to droop down. He finally ran out of energy, shortly after leaving he fell asleep in the stroller and took the first afternoon nap since Sunday.
Back at the RMH he continued his nap with his sharks and dinosaurs.

Today I got someone to watch Beckham while I went over to the hospital to give blood.
They are going to put IV's is both of my arms and run it through a filter out 250cc's of my white blood cells. A process that will take 2-3 hours. Once they have the white blood cells they will filter those down to get the NK cells. NK is short for Natural Killer cells. NK's are allot like regular white blood cells but are able to adapt to new foreign enemies better than regular T cells.
I got there at 8:30 and the hooked me up to the machine.
They say I can't move my arms at all while doing this.
Luckily my veins were good enough so that they could put the needle in a little lower down on my left arm which would allow me to give me just enough movement to handle my iPhone.

The procedure took longer than the thought and I got out about 12:30.
Friday we went in at 8:00am for Beckham to get the NK cell injection.
After filtering down the white blood cells the were able to get 40cc's of NK's (a syringe about the size of your pointer finger)
After waiting around for a couple hours Dr. Modak came in and injected the NK's into Beckham's port access.
After we were there another few hours while Beckham was given more fluids and medicine.
Beckham had a fun day in the playroom.

I thought we would have a short day today but we didn't end up getting out until around 5pm

Saturday morning we got out of the house about 10am. I wanted to take Beckham up to H&M to get him some new clothes he's been looking a little ragged lately.
H&M was about a 30 minute walk up the island. We came across a street fair that was really neat. They had blocked off 1st street from 72nd to 78th. And the road was filled with street vendors selling clothes, art, food, and a bunch of other random things.
I was told that in the summer this is done every Saturday but moves to a new location every week.
Later that day we were able to meet with a group of parents and kids from the RMH and watch the the movie How to train your Dragon 2
- Posted from my iPhone

Location:E 66th St,New York,United States

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