Thursday, March 15, 2012

Thursday, March 15, 2012 - 3rd 3F8 Treatment yesterday

This trip went pretty well. I've learned my way around the city, so I'm feeling more comfortable there. The routine yesterday was the same as last week: labwork in the morning, pre-meds around noon, and injection a little after 2:00 pm. Within minutes of the injection, Collin was nauseous and threw up twice. After that, he didn't throw up anymore, and before we left the hospital around 4:30 or so, he was saying he was hungry! He had some snacks and kept them down, and later he had dinner and kept that down too. Collin is pretty unsteady on his feet after the injection (even more so than usual), so when he was walking around last night in our room, it looked like he was walking on the deck of a boat. Luckily his walking seems more normal today. He was put on another 7 days of antibiotic for the c-diff because he's still having some diarrhea. This means another week of getting up and giving medicine at 2:00 am (he gets it every 6 hours, so 8:00 am, 2:00 pm, 8:00 pm, and 2:00 am.) Oh well. Here's hoping this will be the last week he'll need it. Three treatments down, two more to go!

Monday, March 12, 2012

When Collin was treated at Penn State Hershey Children's Hospital, he received many cheerful pillowcase from an organization called ConKerr Cancer. My mom now makes pillowcases and sends them to ConKerr Cancer, specifically for Hershey. Collin is now featured on their website as a ConKerr Kid! You can see him here:

If you enjoy sewing, these pillowcases are simple and a great way to brighten a sick child's day!

Sunday, March 11, 2012

Sunday, March 11, 2012 - 1st & 2nd 3F8 Treatments

After my last entry, I promised myself I wasn't going to get behind on updates during this month of treatment, yet here I am, behind again....

When I last updated, we were on our way into NYC. Since Bill has a lot of work to do, and most of the time in NY is just spent sitting around (without reliable internet access depending where we are), I suggested the option of him staying home so he could work, and having my dad go with Collin and me instead. So Bill stayed home with Neya and my mom, who was working on making Neya's First Communion dress, and my dad went to NY with us.

We met with Dr. Kramer on Tuesday (2/28) and I signed the consent forms for Collin's treatment. Everything had gone well with the CSF flow study the week before, so Collin was officially cleared to begin treatment on Wednesday (2/29). This week was to include the first injection, which is actually a test dose, followed by scans Wednesday, Thursday, and Friday, similar to the ones done last week for the CSF flow study. Since Collin would be put to sleep for these scans as well, he was not able to eat after midnight Tuesday, Wednesday, or Thursday night. We got to the hospital Wednesday morning and Collin was assigned a bed in the treatment area. We met our nurse and the other team members who would be working with Collin, and then we were told we could go to the playroom for a little while until it was time for Collin's nurse to access his port and draw blood for his labwork. We borrowed some books and toys (Potato Heads of course!) from the playroom and returned to his bed when his nurse was ready for us. After the labwork was done, the treatment injection was made up in the pharmacy, and went through a QA check before it could be given; the whole process took a few hours, so the injection wasn't actually given until around 2:45 pm. Around 1:00 pm the pre-meds used to lessen the side effects of the injection were administered; they are Zofran (for nausea), Vistaril (for nausea), Ativan (for nausea/agitation), Tylenol (for fever/headache), and Dilaudid (for headache). When it was time for the injection, Collin's little room filled with medical staff. A needle connected to an IV line was put into the ommaya reservoir in his head (as usual he didn't even flinch!) and then the radioactive 3F8 treatment was injected through that into Collin's CSF. Then we brought him down to Nuclear Medicine, where he was put to sleep for a short scan. After the scan was done and he was back in his bed waking up from anesthesia, poor Collin started throwing up. He had nothing in his stomach since he wasn't allowed to eat after midnight the night before, so he was dry heaving and vomiting stomach bile. He was given fluids and more of the meds for nausea, vomiting, and pain through his IV, but the poor kid kept throwing up. They kept him for observation until around 7:00 pm, but then he was discharged. He was sent home (to the Ronald McDonald House) on a portable IV pump that gave him fluids all night to keep him from getting dehydrated, and I was given all of the meds for nausea, vomiting, and pain so I could give them throughout the night. We walked back to the RMH in the cold rain (it would have been too difficult to get a vomiting kid with an IV pump into a cab) and when we got back to the room, I cried. I was exhausted, worried, and frustrated. I missed Hershey Medical Center, and knew that Collin never would have been sent home from there in the condition he was in. I hated what I had signed Collin up for, but what other choice was there? After about five minutes of my pity party, I pulled myself together. I got Collin into bed, kept cleaning him up after he vomited, and got his medication schedule figured out while my dad got dinner for himself and me. Over the next few hours, I realized I had to stop comparing Sloan-Kettering to Hershey Medical Center, because they are just different places. Sloan-Kettering treats a large volume of patients every day, but has very few inpatient hospital beds. In fact the building pretty much closes down and empties out each night; we even had to exit through a different door when we left that night because the entrance we normally use was locked. Bill pointed out that the word "hospital" isn't in the name Memorial Sloan-Kettering Cancer Center, and the floor where Collin is treated is called the Pediatric "Day" Hospital. There is an Urgent Care Clinic at Sloan-Kettering that is open all night, and I considered calling them, but in the end I knew that Collin was on IV fluids and I was giving him the nausea/pain meds, so there really wasn't much else to do. Finally around 2:30 am, Collin stopped throwing up, and we were able to get a few hours of rest.

Collin got a visit from some funny clowns while waiting for his injection.

Multiple samples of CSF were taken during the test dose, so they kept his ommaya accessed for the day.

Collin ready for the first scan of the week.

Bundled up for the miserable, rainy walk back to RMH.

Thursday morning we had to be back at Sloan-Kettering for another scan. When we walked into the building, Collin immediately started asking to play with the Potato Heads again. I couldn't believe he associated the place with his favorite toy instead of someplace where he got sick! After Collin woke up from the scan, he asked for something to eat (he hadn't eaten since Tuesday night). He ate, played, kept food down, and seemed perfectly fine. Friday he had his last scan, and then we left to come home. We made it home just as Neya got home from school, so we were able to watch her open her birthday gifts and have dinner and cake together. Collin was back to normal except for diarrhea that developed Friday by the time we got home. Saturday we had a small birthday party for Neya, and Collin sang his heart out before Neya blew out her candle! You'd never know that he had been feeling so crummy just a few days before.

This past week both my mom and dad made the trip to NYC with Collin and me. We traveled out Tuesday, and had to be at Sloan-Kettering at 9:00 am Wednesday. The routine was the same as the week before, minus the scans. Collin's port was accessed in the morning for the necessary labwork and to connect his IV fluids, and he was pre-medicated before the injection. Along with the Zofran, Vistaril, Ativan, Tylenol, and Dilaudid given before the injection and as needed afterwards, he is on a few other medications. He is on two daily medications to protect his thyroid from the radiation in the injection. He is on a steroid twice a day the day before, the day of, and two days after the injection, which is to prevent inflammation and nerve pain which can be another unpleasant side effect of the injection. He also gets Zantac with the steroid to prevent it from bothering his stomach. He also gets a dose of antibiotics after the injection to help prevent infection. Of course, there are side effects from taking all of these various drugs. The steroid increases his appetite, and makes him a bit cranky/easily agitated. The diarrhea that started the Friday after the first injection had continued and made Collin's bottom sore and raw, so I mentioned it to the team because I didn't know if it was a side effect of the treatment or one of the many medications. They decided to run labs on a stool sample to rule out a viral or bacterial infection, and sure enough, the labwork showed he has c-diff, so now he's on another antibiotic every six hours. I think I will bring our own toys along and keep him out of the playroom from now on, because since the one dose of antibiotic given after the injection isn't enough to cause the c-diff, he likely picked it up there.

Reading a book with Grandpa last week....

...and Grandma this week.

After this week's injection, which was a higher dose than last week, the radiation safety advisor met with us to discuss our safety. He used a geiger counter to take readings of Collin's levels of radiation at inches, three feet, and six feet away from him. He explained that the closer we got to Collin, the higher the amount of radiation we would be exposed to. The levels of radiation decrease over a few days. So some of the safety guidelines we were given include the following:
-On the day of injection, Collin should be kept a maximum distance from others, and avoid public transportation.
-For one day following the injection, Collin should avoid public places; maximize distance (6 feet) away from other children and pregnant women; and maximize distance (3 feet) from other people.
-For two days following the injection, Collin should sleep 6 feet away from anyone else.
-For three days following the injection, we should not hold Collin for more than 30 minutes per day.
-For four days following the injection, Collin should not sleep with other children or pregnant women.
It's hard, especially for me, to maintain the recommended distance away from Collin, especially when he is awake and getting sick. Once he was sleeping at night, it was easier to move farther away from him. We were also given a card to carry with us that says he had received nuclear medicine and may have detectable levels of radiaton until a certain date. In some areas such as cities, bridges, airports, etc. where there are radiation detectors (normally used to detect things like dirty bombs), it may be possible for Collin to set off these detectors. The garbage trucks in NYC also have radiation detectors on them, so Collin's radioactive diapers must be kept seperate from the rest of the garbage at RMH.

We had been told that the first injection is the worst as far as how sick it would make Collin, even though it is just a small test dose. Typically each subsequent dose is easier. Collin got his injection at 2:00 pm, and by 2:20 he was throwing up. However, it was less frequent and for a shorter duration than the week before. He was discharged earlier than the week before, and had stopped throwing up by the time we returned to our room at RMH. He even wanted to eat dinner once we were back in the room, so I fed him and he kept everything down. He slept well that night, and after making sure he was still ok the next morning, we came home. Thanks to a cab driver who I'm pretty sure was trying to pad his fare, and the ridiculously slow track notification system at Penn Station, it was not the smoothest of trips, but we made it. The traveling back and forth and being away from home is getting tiring quickly. Neya is also feeling more neglected, and is acting out more at home. I will be very glad when this month is over.

A little less sick after the second injection.