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

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