Tuesday, November 4, 2014

NY scans

We're back in New York. Me and Beckham flew into Laguardia late last night.
The bus ride over to the Ronald McDonald house was easier than it's ever been. I think I'm finally getting the hang of things out here.
Today we check into the clinic at 1pm and afterwards Beckham gets his MIBG injection at 2:30. The injection takes just a few minutes and is through the line in his chest. Quick and painless. I think after that we'll be free for the rest of the day. I hope...
If we get out at a decent time I think we'll head down to the toy store and let Beckham have some fun looking around.
After the injection they did a preliminary scan. They wanted to see where the MIBG was in his body shortly after the injection.
After the injection Beckham fell asleep and when I woke him up to put him on the scanner he got upset. He was crying and didn't want to lay down and be still. To do the scan he needed to lay there and be really still for about 15 minutes. I was really worried that it wasn't going to happen. Luckily the guys working the scanner were really patient with us and after awhile Beckham calmed down enough to start the scan. I was able to hold his hand through the scan and it helped keep him calm.
After the scan we started walking towards the toy store.

Beckham loves trying on the hats in the costume area.

This morning we checked into the clinic at 9. First thing we got some blood work done and after that Beckham was free to play in the toy room until the scan at 10.
A little before 10 we packed up and started walking towards Nuclear Medicine on the 2nd floor. Beckham was exited to finally get his "sleepy medicine". For some reason he loves the stuff the anesthesiologist gives him to get him sedated. I read up a little on it earlier and its the same stuff that Michael Jackson was so fond of and used for his "little naps".
After Beckham fell asleep and we placed him on the scanner I asked to stay so that I could have a look at the pictures coming off the scanner. They didn't like the idea but I insisted. If they had told me I couldn't stay I was prepared to tell them I was going to stay and watch and if they had a problem with that they could talk to Craig Thompson the head of Sloan Kettering, who is a close friend of mine and a family friend. Of coarse this isn't true. But I'v read a little about him and he seems like a great guy. I can't wait for the doctor to show me these images.
The initial scan took about 30 minutes to go from head to foot. The images showing on the screen looked clearer than any of Beckham's earlier ones. I could only make out 3 small spots. Those were on the right side of his head, on his right shoulder and in the crease of his right leg right were the leg joins the pelvis. After the initial scan the scanner goes over his body again slowly as the scanner rotates 360' around taking pictures. These additional pictures help give them a 3 dimensional look.
After the scans they sent him back upstairs to recovery.
This round they are not going to take bone marrow samples from his hips. When they do this scan in the past they have away's gotten done marrow samples. While he's sedated they stick a long needle on the front and back on both sides of his hip. 4 spots
My guess is they didn't do it this time because the marrow has always showed "clean" and they may only want to do it every other time from now on.
After waking up we were free to go for the day.
We had a few hours to kill it was only 1pm so we got on the subway and headed to the Empire State Building. We have tickets to the "sky ride" a virtual tour of NY city kind of like the Soaring California ride at Disney Land.

This morning started early. Beckham needed to check into clinic at 7:30 with a followup scan at 8.
Today it's raining. Glad I brought the rain cover for the stroller and an umbrella.
After the scan we went across the street to Dunkin Donuts. Beckham frustrated the donut lady. He would point to the donut he wanted and she would grab one and it was always the wrong one. It went back and forth for a long time until she finally pulled out the entire row and brought it forward so he could point directly at the one he wanted. Once she did that he was able to tell her the exact one with just the right amount of sprinkles on it.
After getting Beckham's donut we went back up to the clinic. They needed more blood work and then after the results from the blood work came back they wanted to give Beckham some playtlets and told me that for the next 4 hours I needed to collect all his urine in a bottle. They said that his Kreatin level in his urine was low and if we couldn't get the results to show a higher level we wouldn't be able to get Beckham into treatment next week. Oh my...
Luckily Beckham lately has been doing allot of peeing in the toilet. Not sitting down... I'll either hold him up in front of a urinal or I'll have him stand on the toilet seat. So we started collecting his pee in a bottle. An hour later they came by and said that they re-ran the calculations and now his Kreatin level was ok. No more urine collection. Good news! We waited around until 4:30 hoping to hear from the doctor on the results from the scans but none came back yet. At 4:30 we had to leave to get back to the RMH to get onto the bus headed to the Candlelighters party at FAO Schwartz.
The toy store party was great! The kids had so much fun. We started up in a small room downstairs with coloring, fun hats and light snacks. Beckham loved the cupcake cake. He leaned up close to it and kept licking his lips and going "yummy yummy mmmmmm"

After that they formed a train of kids to do a march through the store. With the FAO Schwartz guy at the front. We went up the stairs and around to the big piano where all the kids had a chance to run and play on it.

I just got done meeting with Dr. Modak on the results from the scans.
The results weren't what I had expected. There wasn't much of a response from the last MIBG therapy. The disease shows little difference from previous scans.
But with being said the news isn't all bad. From what they can tell there hasn't been any new growth and what we may be seeing is that the disease has matured. When the disease has matured it becomes resistant to chemotherapy and MIBG therapy. Matured disease doesn't grow out of control and is not life threatening and can be managed with different therapies.
So what do we do now?
What they recommend is that next week we get a PET scan done to see how active the disease is and in the next couple of weeks start Humanized antibody therapy. This is a week long, out patient treatment similar the NK antibody treatment Beckham went though a few months back. These treatments will be once a month for the next few months.
Even though all this comes as a shock and it's not at all what I wanted to hear. I feel like Beckham can get through this and will be ok. The positives are there has been absolutely no new growth and Beckham's energy is the highest it's been since his diagnosis. With everything considered it does seem like the cancer isn't active and we can get through this.

On the way home from the hospital we stopped and got some treats for Big Hero 6.

It comes out tonight and Beckham has been wanting to go. He loves watching the trailer over and over and over again. We got some popcorn some animal crackers and some fruit snacks.
On the way to the movie we stopped and got some pizza.
When the pizza came he held it up ready to eat it and I asked him if I could take his picture. He said "no! Just take a picture of the pizza" he then put it down and turned away. I was sneaky and got them both in the picture:)

The theater was about a mile away (really close to where we go to church). Beckham loved the movie!
In allot of spots he screamed out in laughter. I had to restrain him from jumping right out of his seat. There were allot of kids in the theater and most of them were laughing as well, it was really fun!

On the way home Beckham said we needed to stop and get some more pizza because he need some more energy.
Saturday morning we woke up early and played around in the room for a while then went downstairs for some breakfast. There was cereal, donuts and orange juice laid out in the kitchen area.
After breakfast we bundled up really warm and headed out towards Central Park and the museum. It seems like all we do is go to the park and then go to the museum but it is so fun, we always find fun things to do along the way.
It is so cold outside right now, it's sunny but really cold luckily we bundled up before we left.
Going through Central Park we found a big rock formation and Beckham and I did some climbing.
The museum was really busy. We spent a lot of time going through the dinosaurs, then down on the first floor going through all of the plants, smaller animals and different displays showing different types of forests and climates. I have noticed that during this trip Beckham has been much more engaging and wanting to talk about the different displays. He's really curious about everything. I've noticed at the museum he really takes the time to look and ask questions about different things he sees.

After 3 hours of looking around Beckham finally started to unwind and look like he was getting tired. He laid down in the stroller and we headed for the exit. We walked south towards the Temple. Beckham was exhausted and fell asleep right when we left the museum.
With a light jacket and gloves the temp outside was just right. A perfect day for a walk.
I stopped by the temple and put Beckham's name on the prayer roll. Out from the Temple I cut across by Central Park West and down by Columbus Circle and back through the park towards the FAO Schwartz. On the way over I passed a really big play area and thought Beckham would really like to see it so I stopped and woke him up.
Once he saw why I had stopped he popped right out of the stroller and started running fully recharged and ready to play.

Sunday was a busy day
Beckham was awake at 7 ready to go. At 8 we went down for some breakfast.
There was a breakfast prepared for the guests. I don't think there's normally a breakfast, this was our lucky day. There was waffles, cereal, fruit, milk, orange juice and Beckham's favorite organic chocolate milk (the brand with the cow on the side) I grabbed a couple for him and he then grabbed another couple. I tried to get him to put them back but it was impossible. A little like taking presents away on Christmas morning.
A lady from the group that provided breakfast came over to our table and introduced herself. She explained that herself and the other volunteers were from New York's Central synagogue and that the breakfast was there way to perform a "mitspha" for the community. which is a good deed. She showed Beckham a table that had on it some blankets and other items and told him to pick out a blanket and anything else he would like. The blankets were all hand knitted by the ladies in synagogue. Beckham got a little blanket and with a huge smile wrapped it around himself, held it tight and walked around happy as could be with the new blanket. It was easy to see how happy the ladies were when they saw Beckham so exited. He also got 2 little knitted rabbits. (1 for Navy), and a little beanie hat that fit him perfectly.
After breakfast we left for church. The weather was great, not a cloud in the sky and 60'
There was a primary program during sacrament meeting and Beckham really wanted to sit up on the stand. After watching the kids speak their parts he told me he could go up and talk and be brave and Heavenly Father would bless him.
What a cute little guy:)
We were sitting right inside the door and he kept making excuses to walk out in the hall. To go get the blankets from the stroller, put blankets back in stroller, and to get drinks. One time he brought back some pass along cards that he had found. He also wanted me to help him go potty. The urinal is really small and he went a couple of times. He doesn't want any help washing his hands and on the way out I was surprised that he got a fresh paper towel to cover the door handle as we were leaving. I guess he has noticed me doing that.
After church we got on the subway and left for Yankee stadium. We were able to pickup tickets to the Legacy Club Open House. An event for season ticket holders to look at their seats and other seats that are open. It was nice. There was a catered Buffett style lunch in the suites area overlooking the field. I wasn't thinking Beckham would eat because he's been so picky lately with his food. But he surprised me and ate 5 pieces of pizza. He was loving it.
After some food we walked down onto the field. Because it's football season and games are played there the field was set up as a football field, goal posts and all. There were allot of people standing around talking and soaking it all in. Also, allot of kids running around playing and a couple different spots were guys were kicking balls into some nets.
I grabbed a spare football and me and Beckham had fun kicking it and throwing it around.
A guy came up to us and introduced himself and asked if Beckham had ever seen one of these. As he held out his hand. It was a World Series Championship ring from the 2009 series. His name was TJ Gross retired catcher for the Yankees. He said that he wanted to introduce himself because he had noticed Beckham's cute little head and himself had also gone through cancer treatment recently at Memorial Sloan Kettering. Now he works with the pitchers in the bullpen. Super nice guy!
There was a cameraman on the field that was filming people and projecting the images up on the stadium screen. We were playing fairly close to him and he put the camera on Beckham and me. It was really cool to see Beckham up there. I pulled out my phone and took a few pictures. Great pictures!

When we were getting ready to leave the field I asked the cameraman if he would mind putting the camera on us if we went and sat in some seats in the stands. He said he'd look for me. So as we were leaving I went behind the dugout and sat in some 1,800 per game seats and flagged him down. I told Beckham to look up and wave because we were on camera. He looked up and saw the screen and loved it!

After leaving we stopped by a playground right across the street from the stadium. Beckham had seen it on the way in and wanted to go play really bad. There were a bunch of kids there and Beckham joined right in with them, running around. We were there for about 20 minutes and he had so much fun. He said the kids were his friends and he wanted to stay longer.
We had to go because we had been invited to a birthday party and needed to hustle to get there on time. It was Hunter Sterlings 4th birthday party. I first me his mom Stephanie in the elevator at the hospital going up to the clinic. Her and her husband Eric live just a couple of blocks from the hospital.
The Sterlings are the nicest family. Their son Hunter was diagnosed with a form of leukemia a little over a year ago. Right now he is in remission and is doing great. Eric and Stephanie have been a great support while in NY. They have dropped off gifts for Beckham at the hospital and also gotten us dinner. Great friends.

The Sterlings

I was on my phone when it was time to jump off the train so on the next stop I had to hustle over and catch the next train going back.
I was worried we miss it but the party was still going strong when we arrived. The party was on 85th 3rd at a Kids party place. There were so many people there I couldn't believe it. About 40 kids and their parents. The kids were playing in a big room with bounce houses and a trampoline. It was lots of fun. After we had some pizza and sang happy birthday to Hunter. When the party was over it was early only 6.
The Jewish woman from breakfast had told me that we should check out Rockefeller square if we had a chance. The big Christmas tree had just been put up. (Not lighted yet) and there was a Lego store right there that Beckham may really like to see.
We had some time and we were out so I thought we'd go check it out.
Now that I'v started to get the hang of the subway it is so nice. It's easy, quick and inexpensive. I don't even look for elevators anymore. When I get to stairs I just grab the stroller and lift it right up and walk. I know right were to grab on the stroller so it doesn't strain my back, it doesn't slow me down at all.
Walking from the station to Rockefeller center we walked by St Patrick's cathedral. A huge cathedral right by Rockefeller center. The big doors were open and crowds of people were in and out. I looked in and decided to walk in and take a better look. Beckham wanted to walk so he got out of the stroller. It was huge inside. Lots of people praying and admiring the historic building. Beckham noticed the big granite bowl of holy water at the entrance of the pews and asked me what it was. I started to tell him that it was special water that was used to bless people when he walked up to the bowel and dipped his hand all the way in and then slapped it right on his bald forehead. Water splashing all over his head. I was speechless. He must have seen others dipping a finger and wiping it on there forehead.
Beckham what a guy!
There was christmas lights on the trees there was definitely a feel of Christmas is in the air.

On the way home we stopped to get pizza for Beckham. When we're out on the street he won't eat any other pizza than Deliza's the pizza shop around the corner from the RMH. They know what he wants without saying when he through the door. He even has his special spot to watch and wait for his slice to get out of the oven.

Monday morning was nice and relaxing. Beckham was up at 5 watching his iPad. I tried to take it away but for some reason he was fully awake. I figured it might be good for him to be tired later for his procedure so I let him watch it.
I went for a run around Central Park at 7 while Beckham watched a movie.
We weren't in a rush to get out to the hospital. Beckham's bone marrows are at 1 and we don't need to check into clinic until 11:30. I did some laundry and played with Beckham. He started to get really antsy at 10 so I started getting ready to leave a little early. I figured we might as well go over so he could play in the playroom.
He ended up having to get an Eco first followed by blood work. They also needed a urine sample. When I told Beckham it was time to pee in a bottle he got exited. In the bathroom he wanted to stand on the toilet and pee into the cup. I got a little in the cup and let him finish the rest in the toilet. When I backed away and looked at him the scene looked so funny I had to take a picture.

Then they sent us down to the 3rd floor to get an EKG. Beckham was really tired and in a horrible mood. After wrestling him for s minute or two the nurse gave up trying to do the test. Maybe later after he gets some food.
We then went back up to the playroom and played some video games for awhile. Beckham has loves the little figures that go to the Wii game Skylanders. A little boy was playing the game and showed him how to play. He loved it!

They finally were ready for him at 2.
After leaving him with the doctors I sat down to catch up with a few emails.
When he woke up he was actually in a pleasant mood.
I talked to the doctors after he woke up and they want him back December 1 to start the Humanized 3f8. This treatment is 3 days a week M, W and F. This first treatment they need him to stay an additional week for blood tests. (The following M, W, F). And then back 3-4 weeks later for another round. So after this first round they will have him back once a month for a week of treatment. For at least the next 3-6 months.

We left the hospital about 4 and headed to the toy store to play. We started walking home at about 5:45 and I remembered that there was an activity at 6 for the kids RMH. They were taking a bunch of kids to see a movie Big Hero 6. Me and Beckham had just seen it on Friday but I thought it might be fun to go. Last time there was a movie activity they provided pizza and a bunch of other treats.
The buses would leave in 15 min and I had ahead of me what would normally be a 45 min walk. This is going to be interesting. I told Beckham to hold on to his but we're going to race. He got exited and I took off. I actually run with Beckham allot he likes to go fast. Dodging through crowds of people. I'v never hit anyone. But I do wonder what people think. I made it back by 6:02.
But the bus was parked down the street and I asked the wrong girl where it was parked and she sent me to the wrong way. I missed the bus:) no worries tho, I hailed a cab and met up with everyone at the theater.
The movie was long and I was tired and hungry. There wasn't any pizza or food. I was thinking I made a mistake coming. Our flight leaves tomorrow at 7:30am and I have allot of packing to do.
But Beckham was having fun. I just ate candy that I had in my backpack and just enjoyed the movie.
When we got back Beckham wanted a slice of pizza from his favorite pizza joint.
Once back in our room I started to get everything packed up. I finally got everything done and laid down at 11:30. Alarm clock set for 4:30am

-Posted from my iPhone

Location:F D R Drive,New York,United States

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