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


Friday, July 11, 2014

NY (scans) July 9-12

Back out to New York for some followup scans.

Me and Beckham flew out of Salt Lake at 12:30 after a layover in Dallas we touched down in LaGuardia at 11:30pm
We got all settled in at the RMH and where asleep about 1:30. Long day...

morning we got an early start.
The first scan will be a MRI scan with anesthesia. We checked him in at 7am
At 8 they gave him the "sleepy medicine" and he was asleep in less than 5 seconds.
I laid him down on the scanner and left him with the doctors.
About 9:30 they brought him out to the waiting room. He was awake and actually in a fairly good mood, he was even talking to the nurse.
We then went up to the play room in the clinic area to wait for the doctor to call us back for a checkup.
We ended up waiting what seemed like forever and finally got back at 12:30
Beckham's blood counts are looking great, everything is where they should be.
After the checkup we went back to the RMH for a bit to rest and charge up my phone. We gotta be back to the hospital at 2:30 to get the MIBG injection.
The injection is given him through his port and contains a radioactive dye. This dye clings to any cancer in the bony areas which is then picked up by the MIBG scan.
Beckham kept asking over and over if we can go to the toy store. He's been wanting to look at the animals since we left salt lake. I told him that we would be able to go later today and he's getting anxious.
After stopping by to get the MIBG injection we're off to the FAO Schwartz:)

morning we were at the hospital at 7:45
First thing we needed to do was get the contrast liquid in Beckham's NG tube by 8:15
I got it down by 8:10
The contrast needs to be in his system for 2 hours before the CT scan to give it some time to circulate through his body.
The CT scan is good at finding tumors in soft tissues.
At 9:30 they took us back to do the MIBG scan. They were running a little late so they asked if Beckham would be able to do the scan without anesthesia. To do this he would need to be very still. He's not been able to stay still enough before when we had this done but we thought we would give it a shot.
He was a little scared, but he did great.
The machine was a little scary looking. It was a huge donut with a panel that he laid on and was strapped to that would slide into the donut hole, then a scanner mechanism would rotate around him.
I was able to stand right there with him so he could see me throughout the scan which took about 15 minutes.
After the MIBG we walked across the hall to the CT scanner. This scanner was allot less menacing looking. Since this is a longer scan they had an anesthesiologist there to put him to sleep. For some reason Beckham will ask for the stuff that the anesthesiologist gives him before these scans, he calls it "sleepy milk" because it's a white liquid.
After falling asleep I put him on the scanner and left him in the doctors care.
After the scan they will take him up to the clinic on the 9th floor and collect his bone marrow. This is done by Dr. Modak. He collects it through 4 needle pokes around Beckam's hips. 2 in the front 2 in the back.
About 2 hours later he'll be waking up and I'll be there to comfort him.
While waking up and before I got there they put a new feeding tube in him. His last one was put in about a month ago and they normally change them once a month.
When I arrived he was feeling really groggy and not in a very good mood.
They then had me take him down to the second floor and get an x-ray done to check the placement of the feeding tube. He didn't want to lay in the stroller so I left it upstairs and carried him down. When we got there we ended up waiting for awhile and Beckham started crying wanting to lay down in the stroller. This lasted what seemed forever.
In the x-ray room he wasn't cooperating at all. I eventually ended up holding him up and pinning him against the machine so they could take the pictures. The technician kept taking pictures trying to get the right angle. I eventually told her in the nicest way possible that I was walking out with Beckham in 2 minutes no matter what so she better hurry. She finally got what she wanted in less than 2 minutes, I was relieved!
When we got back upstairs to clinic they needed to take the urine bag off him. It was put there to capture a sample. The also wanted to de-access his port (remove the needle and tube that was attached to the port in his chest)
I knew he wasn't going to like any of this so I thought we should do this quick and all at the same time. There wasn't a room available so we put him on one of the rolling beds in the hall. We quickly pulled off the bag which was stuck by sticky stuff around his private's and then lifted up his shirt and pulled off his line.
He wasn't happy about this at all! Normally when he is accessed he doesn't want it to come out since getting it out is painful and little traumatic.
Just last night he was telling me he really loved his tubes and wanted to keep them and show Mommy when we got home. He kept telling me that he really wanted to keep them. To that I would just change the subject. Knowing we'd be taking them out on Friday.
Doing it so quickly and not preparing him was a mistake. He got totally upset and kept screaming that he wanted his tubes back. Nothing I could do or say would calm him down. At one point he got away from me and went running down the hall yelling that he was looking for his tubes and dressing! Finally a child life nurse came to help and we told him that we would together help him find his old dressing. That calmed him down and we walked around looking. That little break gave him a chance to calm down and get his mind on something else.
Now that all the scans are done we just need to wait to talk to Dr Modak about what they show. It takes a couple hours for the first pictures to get uploaded into the system. When they are ready to look at he'll call me back and go over them with me.
In the playroom they were able to get ahold of an early release of Spider-Man 2 so we started the movie while waiting to be called back.
Dr Modak's secretary came and grabbed me about 20 minutes into the movie. Beckham was enjoying it so I left him there.

Dr Modak was pleased with what he saw on the scans. He pulled up the last scan from March and compared it with today's scan. The cancer has definitely gone down. There was 2 spots in the head and now there is 1 and that is lighter in color. And in the body comparing spot to spot the most recent scan is showing that all the spots are lighter and in a few cases they might be gone completely.
This does seem like really good news but I have mixed emotions. I was hoping that all or most of the cancer would be gone by now. It's just so hard to think that it's still there after all the treatments and after all the prayers. Beckham seems so healthy it's just hard to believe this is still going on inside of him.
What's next?
Dr Modak recommends going forward with another round of chemo and NK infusion and 3F8.
The chemo this next round will only be for 2 days rather than 3 and it will be at a smaller dose. What this means is Beckham will most likely not get nutrapenic (meaning his white blood cell count is low which means he can get sick very easily, even germs on his own skin can cause him to get a fever and need to be admitted to the hospital)
If all goes well we should only have to be in NY for 2 weeks.
2days chemo, 2days rest, 1day donate Brian NK cells, 1day infuse into Beckham
5days 3F8, Fly home...

Dr Modak is going to try to schedule the next treatment to begin either 1 week or 2 weeks from next Monday

I need to be grateful that we are making progress and the cancer does seem to be going down. I'm really confident that Beckham will be able to get through this. I just have to realize that it's a long road and I need to count our blessings along the way.

After meeting with Dr Modak me and Beckham were able to go to the Blue Man Group. It was fun. Beckham loves slapstick humor afterward we were both ready to go home and rest, its definitely been a long week so far

We fly out of Laguardia at 5pm so we had some time to have a little fun before we leave for home.
I have been running every morning before Beckham wakes up but I slept in this morning. I am so exhausted. I slept until 8:30 which felt so good.
After packing up a bit and doing some laundry, giving Beckham a bath and his medicine we left the house headed to the Natural History museum about 10:30

(Sat. Morning bath,
So good to see him playing in the bath again. With his tubes removed with his Port in place life is that much closer to being normal)

Beckham has been wanting to see the Dinosaurs before we leave.
The walk through the city was so nice. The weather is just perfect. We took a longer route to the museum and walked by the Temple. Beckham got a hotdog from a street vendor which he loved. And by luck a little convenience store just north of the temple had the brand of chocolate milk that Beckham was asking for. (chocolate milk with a cow on the side)
We did a little light jogging to get to the museum quicker. Beckham loves when I go fast and likes to be superman.

- Posted from my iPhone

Location:2nd Ave,New York,United States