- Posted from my iPhone
Thursday, August 28, 2014
Sunday, July 27, 2014
NY (NK 3F8) July 27-Aug 11
Sunday,
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...
Monday
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.
Tuesday,
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!
Wednesday
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.
Thursday
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.
Friday
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.
Saturday
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.
Monday
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
Tuesday
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
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...
Monday
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.
Tuesday,
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!
Wednesday
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.
Thursday
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.
Friday
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.
Saturday
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.
Monday
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
Tuesday
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
Location:NYC
Friday, July 11, 2014
NY (scans) July 9-12
Back out to New York for some followup scans.
Wednesday,
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...
Thursday,
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:)
Friday,
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.
(Week1)
2days chemo, 2days rest, 1day donate Brian NK cells, 1day infuse into Beckham
(Week2)
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
Saturday
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
Wednesday,
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...
Thursday,
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:)
Friday,
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.
(Week1)
2days chemo, 2days rest, 1day donate Brian NK cells, 1day infuse into Beckham
(Week2)
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
Saturday
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
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.
Thursday
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
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.
Thursday
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
Saturday, May 24, 2014
NY (scans) May 19-24
Tuesday:
Beckham and I arrived in NY 5:20am.
We're out here to get a series of scans and tests done at Memorial Sloan Kettering Hospital. They are checking to see what effects the last 2 rounds of chemo have had on the cancer.
Beckham was so exited to finally be on our way. He couldn't wait to get in the car for the drive up to the Salt Lake airport. When the airport came into view from the car he let a scream of joy. Down to the terminal he was running wanting to race me to the gate. It was a 11pm red eye flight but Beckham wasn't going to be sleeping anytime soon.
He ended up falling asleep an hour into the flight and I was able to get a little sleep before we landed.
We checked into the New York Ronald McDonald House a little after 6am. After a few more hours of sleep we were dressed and ready to go enjoy NY for a couple days. Beckham scans were scheduled for Thursday and Friday which gives us a couple of days to enjoy the city. Beckham has been wanting to go and see the Dinosaurs at the Natural History Museum and also he's been talking about the Zoo.
Tuesday was a beautiful sunny day with Wednesday looking like it was going to be stormy so we decided to go to the Zoo first and the museum on Wednesday.
The zoo was small but great. So great to see Beckham run around full of energy and act like a kid.
After the zoo we walked over the the FAO Swartz and picked up a sucker from a candy store on the way back home.
Wednesday:
First thing we made what ended up being a twice a day stop at McDonalds for 8 chicken nuggets and 8 ketchups. If I say nuggets without quickly adding ketchups he sharply reminds me it not nuggets but "nuggets&ketchup"
To get to the museum we cut across Central Park and were able to walk by the place were people are piloting radio controlled sail boats. Really cool
The zoo was great. Of coarse Beckham was heading to the dinosaurs first thing
After the museum we walked down to the Temple and around Central Park then back to the RMH
Every night at 6:30 a different volunteer group will provide a dinner for families staying at the RMH. There is always lots of food for everyone. It's really amazing all that goes into the RMH to enable it to function. The Ronald McDonald organization provides so much help to families dealing with tough medical issues it's really hard to imagine what it would be like without them there.
On the 2nd floor of the building there is a large dinning area with tables and chairs for about 100 people and right off of the dining area there are 5 large kitchens and in each kitchen area there are large commercial refrigerators, freezers, sinks, ovens and microwaves. Each family has their own cupboard space and area in the refrigerator and freezer.
Thursday night company I think it was a bank provided an amazing dinner with different types of Pasta, Chicken and Salad.
They also brought in a guy that's a Professional Balloon Ty'r. Yes this is a real profession. He ties balloons at parties full time.
There were about 15 kids there for dinner and he was tying all types of balloons for them. Animals, flowers, swords, shields, helmets, bow and arrow's and even jet packs. It was amazing. The kids were going crazy.
Thursday:
In the morning we headed out for our first doctors appointment. We were at the Hospital at 11:30am for Beckham to get his Echocardiogram.
For this test Beckham lays on a table and they gently rub a scanner over his chest. The scanner takes pictures of the heart from different angles.
This is to check for any damage caused by the chemo.
When they called us back Beckham was having a great time in the playroom area and he wasn't happy that I pulled him away from his big bin of animals.
When we got back to the room Beckham wouldn't lay down on the exam table and wasn't cooperative with the nurses and I was starting to think that this wasn't going to go well at all. The nurses offered him chocolate and prizes but he wasn't having any of it. Then they put on the cartoon Tom & Jerry. That was all it took he was all smiles. His only request was that I lay by him on the bed and watch.
I was all for that!
After the Echo they sent us home for a bit but wanted us back at 2:30 to get his MIBG injection.
The injection is a small dose of radioactive dye that they inject in him though his line. The dye circulates through his body and the cancer cells will take it in. Tomorrow when he goes in for the MIBG scan it will pickup and show the dye and hence let them see the cancer.
On the way back to get the injection with Beckham riding in the stroller, we passed a Godzilla movie poster on the road and Beckham wanted me to go back and look at it. I told him we were late and didn't have time. He kept asking and asking and wasn't going to give up. So I quickly turned around and raced back. The sign faced out to the road. Rather than going to the corner of the sidewalk I took the stroller right off the edge of the curb out into the street right in front of the poster. When I landed the stroller frame broke right at one of the joints.
So you could say Gozilla got us!
I was able to get to the hospital and after Beckham's Injection I wrapped it up with a roll of medial tape. Almost like new!
Later that day we met up with a group from Candlelighters NYC. Candlelighters is an organization that puts together events and activities for families whose children have been diagnosed and are going through treatment for cancer.
The activity today was to go to the Toy Store FAO Schwartz which is at the south east corner of Central Park.
We met near the RMH where 2 shuttle buses picked up parents and about 15 kids.
When we left it was about 4:30 which was rush hour. But that didn't slow us down much. We had a 2 car police escort. Lights and sirens blaring! NY cops are awesome!
When we got there everyone went into a back room where they had totally decked it out with balloons and party decorations. They had dinner ready for us and plenty of treats. All the kids got party hats.
From there we went upstairs to the big piano they have in the floor and all the kids were able to play around and have fun on it.
Then they took the kids over to the area where they have every type of candy you could imagine and gave them a bag let them fill it up with any candy that they wanted. All Beckham wanted was skittles:)
After getting candy we paraded back to the room to party a little more. They decorated sugar cookies and had some amazing cake.
It was such a fun night. The kids had so much fun!
Friday:
Scans
Friday we got an early start. They wanted us checked in at 7am.
No food or drink for Beckham this morning.
First thing we picked up his Contrast.
Contrast is the juice like fluid that he needs to drink in preparation for the scan. The NG tube made it easy to get it down. After that we just hung around waiting 2 hours for it to go all through his body.
At about 10:30 we went down to Nuclear Med. to get prepped to scan.
Beckham got a little scared seeing all the big scanning machines and wanted me to hold him. The doctors are really good with kids and once they started talking to him he calmed down. For the scan he needs to be asleep so they have an anesthesiologist there to help him through that. I held him while the doctor injected the sedative. Beckham was completely out in less than 5 seconds. Once he was asleep I gently laid him on the table of the scanned and the nurses took over from there.
Once the MIBG scan is done while he's asleep they will take him back up to the clinic on the 9th floor and do the Bone Marrow Aspirate. This is done by sticking a large needle into 4 spots in his pelvic bone (2 in the front & 2 in the back) and taking a sample of marrow.
He was expected to be waking up in recovery in 2 1/2 hours.
When Beckham woke up he wasn't in a good mood. He was really groggy and in pain. They gave him some Tylenol and gave me another dose to give him in another 4 hours.
After leaving the recovery room we sat and hung out in the clinics waiting area.
The initial results from the scan were going to be ready soon and and as soon as they are Dr Modak is going to call me back to his office to go over them.
Results
The initial scans showed that the cancer had receded from the last 2 rounds of chemo. Which was great news.
But it's still there...
Ideally after the Front Line Therapy is completed (chemo rounds-surgery-radiation) the goal is to have no residual disease (zero cancer)
And then to move to the next phase of treatment which is to make sure it doesn't come back.
But because Beckham's cancer is still there and all the "tools" at their disposal have been used. The next step is to move to treatments that are not Standard Of Care treatments. These treatments are, Clinical Trials.
What doctor Modak recommended was that we put Beckham on the NK trial that they are currently working on, and plan on being back to start treatment Monday June 1st
- Posted from my iPhone
Beckham and I arrived in NY 5:20am.
We're out here to get a series of scans and tests done at Memorial Sloan Kettering Hospital. They are checking to see what effects the last 2 rounds of chemo have had on the cancer.
Beckham was so exited to finally be on our way. He couldn't wait to get in the car for the drive up to the Salt Lake airport. When the airport came into view from the car he let a scream of joy. Down to the terminal he was running wanting to race me to the gate. It was a 11pm red eye flight but Beckham wasn't going to be sleeping anytime soon.
He ended up falling asleep an hour into the flight and I was able to get a little sleep before we landed.
We checked into the New York Ronald McDonald House a little after 6am. After a few more hours of sleep we were dressed and ready to go enjoy NY for a couple days. Beckham scans were scheduled for Thursday and Friday which gives us a couple of days to enjoy the city. Beckham has been wanting to go and see the Dinosaurs at the Natural History Museum and also he's been talking about the Zoo.
Tuesday was a beautiful sunny day with Wednesday looking like it was going to be stormy so we decided to go to the Zoo first and the museum on Wednesday.
The zoo was small but great. So great to see Beckham run around full of energy and act like a kid.
After the zoo we walked over the the FAO Swartz and picked up a sucker from a candy store on the way back home.
Wednesday:
First thing we made what ended up being a twice a day stop at McDonalds for 8 chicken nuggets and 8 ketchups. If I say nuggets without quickly adding ketchups he sharply reminds me it not nuggets but "nuggets&ketchup"
To get to the museum we cut across Central Park and were able to walk by the place were people are piloting radio controlled sail boats. Really cool
The zoo was great. Of coarse Beckham was heading to the dinosaurs first thing
After the museum we walked down to the Temple and around Central Park then back to the RMH
Every night at 6:30 a different volunteer group will provide a dinner for families staying at the RMH. There is always lots of food for everyone. It's really amazing all that goes into the RMH to enable it to function. The Ronald McDonald organization provides so much help to families dealing with tough medical issues it's really hard to imagine what it would be like without them there.
On the 2nd floor of the building there is a large dinning area with tables and chairs for about 100 people and right off of the dining area there are 5 large kitchens and in each kitchen area there are large commercial refrigerators, freezers, sinks, ovens and microwaves. Each family has their own cupboard space and area in the refrigerator and freezer.
Thursday night company I think it was a bank provided an amazing dinner with different types of Pasta, Chicken and Salad.
They also brought in a guy that's a Professional Balloon Ty'r. Yes this is a real profession. He ties balloons at parties full time.
There were about 15 kids there for dinner and he was tying all types of balloons for them. Animals, flowers, swords, shields, helmets, bow and arrow's and even jet packs. It was amazing. The kids were going crazy.
Thursday:
In the morning we headed out for our first doctors appointment. We were at the Hospital at 11:30am for Beckham to get his Echocardiogram.
For this test Beckham lays on a table and they gently rub a scanner over his chest. The scanner takes pictures of the heart from different angles.
This is to check for any damage caused by the chemo.
When they called us back Beckham was having a great time in the playroom area and he wasn't happy that I pulled him away from his big bin of animals.
When we got back to the room Beckham wouldn't lay down on the exam table and wasn't cooperative with the nurses and I was starting to think that this wasn't going to go well at all. The nurses offered him chocolate and prizes but he wasn't having any of it. Then they put on the cartoon Tom & Jerry. That was all it took he was all smiles. His only request was that I lay by him on the bed and watch.
I was all for that!
After the Echo they sent us home for a bit but wanted us back at 2:30 to get his MIBG injection.
The injection is a small dose of radioactive dye that they inject in him though his line. The dye circulates through his body and the cancer cells will take it in. Tomorrow when he goes in for the MIBG scan it will pickup and show the dye and hence let them see the cancer.
On the way back to get the injection with Beckham riding in the stroller, we passed a Godzilla movie poster on the road and Beckham wanted me to go back and look at it. I told him we were late and didn't have time. He kept asking and asking and wasn't going to give up. So I quickly turned around and raced back. The sign faced out to the road. Rather than going to the corner of the sidewalk I took the stroller right off the edge of the curb out into the street right in front of the poster. When I landed the stroller frame broke right at one of the joints.
So you could say Gozilla got us!
I was able to get to the hospital and after Beckham's Injection I wrapped it up with a roll of medial tape. Almost like new!
Later that day we met up with a group from Candlelighters NYC. Candlelighters is an organization that puts together events and activities for families whose children have been diagnosed and are going through treatment for cancer.
The activity today was to go to the Toy Store FAO Schwartz which is at the south east corner of Central Park.
We met near the RMH where 2 shuttle buses picked up parents and about 15 kids.
When we left it was about 4:30 which was rush hour. But that didn't slow us down much. We had a 2 car police escort. Lights and sirens blaring! NY cops are awesome!
When we got there everyone went into a back room where they had totally decked it out with balloons and party decorations. They had dinner ready for us and plenty of treats. All the kids got party hats.
From there we went upstairs to the big piano they have in the floor and all the kids were able to play around and have fun on it.
Then they took the kids over to the area where they have every type of candy you could imagine and gave them a bag let them fill it up with any candy that they wanted. All Beckham wanted was skittles:)
After getting candy we paraded back to the room to party a little more. They decorated sugar cookies and had some amazing cake.
It was such a fun night. The kids had so much fun!
Friday:
Scans
Friday we got an early start. They wanted us checked in at 7am.
No food or drink for Beckham this morning.
First thing we picked up his Contrast.
Contrast is the juice like fluid that he needs to drink in preparation for the scan. The NG tube made it easy to get it down. After that we just hung around waiting 2 hours for it to go all through his body.
At about 10:30 we went down to Nuclear Med. to get prepped to scan.
Beckham got a little scared seeing all the big scanning machines and wanted me to hold him. The doctors are really good with kids and once they started talking to him he calmed down. For the scan he needs to be asleep so they have an anesthesiologist there to help him through that. I held him while the doctor injected the sedative. Beckham was completely out in less than 5 seconds. Once he was asleep I gently laid him on the table of the scanned and the nurses took over from there.
Once the MIBG scan is done while he's asleep they will take him back up to the clinic on the 9th floor and do the Bone Marrow Aspirate. This is done by sticking a large needle into 4 spots in his pelvic bone (2 in the front & 2 in the back) and taking a sample of marrow.
He was expected to be waking up in recovery in 2 1/2 hours.
When Beckham woke up he wasn't in a good mood. He was really groggy and in pain. They gave him some Tylenol and gave me another dose to give him in another 4 hours.
After leaving the recovery room we sat and hung out in the clinics waiting area.
The initial results from the scan were going to be ready soon and and as soon as they are Dr Modak is going to call me back to his office to go over them.
Results
The initial scans showed that the cancer had receded from the last 2 rounds of chemo. Which was great news.
But it's still there...
Ideally after the Front Line Therapy is completed (chemo rounds-surgery-radiation) the goal is to have no residual disease (zero cancer)
And then to move to the next phase of treatment which is to make sure it doesn't come back.
But because Beckham's cancer is still there and all the "tools" at their disposal have been used. The next step is to move to treatments that are not Standard Of Care treatments. These treatments are, Clinical Trials.
What doctor Modak recommended was that we put Beckham on the NK trial that they are currently working on, and plan on being back to start treatment Monday June 1st
- Posted from my iPhone
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