Tuesday, May 1, 2012
Tuesday, May 1, 2012
Collin had his MRI this morning, and we met with the doctor this afternoon to review the results. They weren't what we wanted to hear.
The doctor called the MRI "suspicious." It seems there is a new spot, in a new location, that wasn't there before. The problem is, the area doesn't enhance, which means it doesn't get brighter with the contrast dye. So, they're not sure if it is a new tumor, or if it is just some inflammation from the 3F8 treatment in March.
So, over the next few days and weeks, the doctors will be gathering the information that will help us decide what to do next. They sampled Collin's CSF through the ommaya reservoir to see whether there are tumor cells present in it, and will let us know the results tomorrow. If there is enough frozen tissue left from 2010, they will test it for the protein needed for a treatment similar to what he did in March, called 8H9. If his original tumor has the protein, we will move forward with the 8H9 treatment. If not, we may be looking at restarting the metronomic therapy he did before the 3F8 treatment, and then doing cranio spinal radiation sooner than we had hoped. Collin will have another MRI in 3 to 4 weeks to keep a close watch for any any further changes.
Needless to say, I'm scared to death, yet again. I just can't believe this is happening. I don't know how I'm supposed to function over the next few weeks, just waiting......
Sunday, April 29, 2012
Sunday, April 29, 2012
Just a quick update...Collin has been great over the last month. He is feeling well, loves to play, and is getting into everything, just like a typical three-year-old! He finds joy in even the smallest things; it's one of my favorite things about him, and it's a lesson we should all be reminded of. So is his ability to constantly pick himself up and keep going (literally and figuratively!) Every time he stumbles and falls, even if he sheds a few tears because the fall hurt, he gets back up and says, "I ok, I fine!" and keeps going. He's an amazing little guy.
Collin has been on a stronger antibiotic, Vancomycin, to get rid of the c-diff, which finally seems to be improving. He took the antibiotic four times a day (every six hours) for two weeks, then twice a day for a week. This week he will take it once a day every day, and then he will take it three times a week for four weeks. Then hopefully we will be finished dealing with this c-diff! Tomorrow we head back to Sloan Kettering in NY for Collin's post-treatment MRI on Tuesday. I have to believe this treatment worked to kill any lurking cancer cells, but I'd be lying if I said part of me isn't terrified. He's been off treatment for a month now, and he had only been off treatment for about two months before his relapse was found last October. Once cancer is in your life, you can never let your guard down; you always wonder if/when it will creep back in and turn your world upside down again. The fear is always lurking. Please say a prayer that Tuesday's MRI will be clear!
Collin has been on a stronger antibiotic, Vancomycin, to get rid of the c-diff, which finally seems to be improving. He took the antibiotic four times a day (every six hours) for two weeks, then twice a day for a week. This week he will take it once a day every day, and then he will take it three times a week for four weeks. Then hopefully we will be finished dealing with this c-diff! Tomorrow we head back to Sloan Kettering in NY for Collin's post-treatment MRI on Tuesday. I have to believe this treatment worked to kill any lurking cancer cells, but I'd be lying if I said part of me isn't terrified. He's been off treatment for a month now, and he had only been off treatment for about two months before his relapse was found last October. Once cancer is in your life, you can never let your guard down; you always wonder if/when it will creep back in and turn your world upside down again. The fear is always lurking. Please say a prayer that Tuesday's MRI will be clear!
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| 4/27/12 - Collin with his best bud (or should I say "best spud"?) at Tanger Outlets in Hershey. |
Tuesday, April 17, 2012
Tuesday, April 17, 2012
We've been home for a little over two weeks now, and I've managed to keep very busy. I scheduled Collin's therapies to start again in May, because I wanted to give myself and Collin a little break from constantly being on the go. I knew I had to get caught up on things around the house, and that would be easier to do it I wasn't constantly running to various appointments. During the four days every week that Collin and I were home between trips to NY in March, I was so physically, mentally, and emotionally burned out that I wasn't doing much around the house when I was home.
Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!
Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.
Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.
Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!
Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.
Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.
Tuesday, April 3, 2012
Tuesday, April 3, 2012
We returned home from Collin's third treatment on Thursday, March 15, and by that evening I felt like I'd been run over by a truck. Three days earlier, on Monday of that week, Neya had a low-grade fever and a sore throat, so I had kept her home from school and took her to the doctor for a strep test to be on the safe side. The quick test was negative, and by Wednesday the culture was still negative. However, Thursday evening our pediatrician called to say the culture became positive, and right then I knew I had strep throat. Friday, we took Collin to our pediatrician for a strep test, and he swabbed Collin's throat and mine. Collin was negative, but I was positive, so he wrote me a prescription for an antibiotic. Since Collin was still on antibiotics for the c-diff, it seems he was protected against the strep. I spent the weekend fighting high fevers and feeling worse than I have in years, but thankfully I was well enough to head back to NY by Tuesday, March 20.
Collin had his fourth 3F8 treatment on Wednesday, March 21. He was still having problems with diarrhea. When the diarrhea began after the first 3F8 treatment, it didn't have the distinct odor common with c-diff (he's had it twice before so unfortunately this is a smell I have experienced), so I was surprised by the c-diff diagnosis. At that time I questioned whether the diarrhea could have been caused by the treatment or one of the medications he's on to protect his thyroid from the radiation (the paperwork for one says that if diarrhea develops, a dose adjustment may be needed) but was told it wasn't likely. Since the diarrhea was still an issue after two weeks of antibiotics, they checked another stool sample for c-diff, but this time the culture came back negative; however this was expected since he was still on antibiotics. They told me to stop the antibiotics to see what happens, and conceded that perhaps it was being caused by the treatment or one of the medications. I doubt we'll ever know the cause, and nor does it matter; I'm honestly just tired of dealing with it and wish it would go away. Collin's new mantra is "Sore heiny...NO FUN!!!"
The 3F8 injection that day was planned for around 2 pm, so Collin's nausea and pain pre-meds were given accordingly. However, the injection didn't clear the QA process, so they had to prepare another one. This injection wasn't ready until around 4 pm, so by the time it was given, some of the pre-meds were wearing off. So, Collin vomited for a little while after the injection, but once second doses of the nausea meds could be given, he started to feel better. Before he was discharged that evening, Collin was eating again, demanding food because the steroids were making him hungry, as well as cranky and unhappy. Wednesday evening and Thursday morning, Collin was having tantrums and behavior that weren't common for him. Between the constant traveling, being away from home, treatments, and steroids, it wasn't at all surprising, but it was still draining to deal with and frustrating not to be able to help him calm down.
Last Wednesday, March 28, was Collin's last 3F8 treatment. When Collin woke up that morning he seemed fine, but then he barely ate any breakfast, which was a little out of the ordinary. When he was admitted after breakfast for his treatment and his vital signs were taken, we found out he had a slight temperature. His bloodwork was taken, and the nurse brought him a dose of Tylenol to see if it would help the fever go down. As soon as I gave him the Tylenol Collin threw it up, so they decided to draw more blood for cultures, get a urine sample, and planned to take a CSF sample to make sure he didn't have a serious infection brewing. We were also moved to an isolation room. Another dose of Tylenol was given, and thankfully Collin was able to keep it down. They decided that as long as his fever didn't continue to climb (thankfully it didn't!), they would give him his treatment. Of course he threw up almost immediately after the injection was given, but the vomiting didn't last long. Then he slept for a while afterwards. By the time he was discharged, he was ravenous and cranky, just as he was the week before. By then he also had a runny nose, so I figured he had developed a cold and on top of everything else, he just didn't feel well. Thankfully his cultures stayed negative, which meant he had no infections brewing.
Since being home after the final treatment, Collin is much happier. He has finished the steroids, which also helps. He has another week on the thyroid medications, so I'm anxious to see if the diarrhea clears up once he's off them. I think it will be good for his body to get a break from medication. This week we are staying close to home and resting as much as possible. I am trying to get organized again so I can try to get caught up on things that I'm behind on and get back in "control" of my life. Collin's next MRI isn't scheduled yet, but should be sometime in the beginning of May. We have to go back to NYC for it, but we are planning to take an extra day or two to do some fun things in the city with Neya and Collin. Once we know the MRI results, we will discuss with Collin's doctors what comes next in his treatment plan.
Please pray that Collin's next MRI is clear. Please also keep Collin's oncologist in your prayers. She has been fighting cancer in her pediatric patients for 20 + years, but I have recently learned that she is in the middle of her own battle with breast cancer. And, please keep fellow medullo warrior Bree and her family in your prayers. They have been in my heart since her grandma and I met online in 2010 after Bree's diagnosis. Two year old Bree earned her angel wings two days ago, and my heart is broken for her and her family. Oh how I wish cancer would leave our babies alone!
Collin had his fourth 3F8 treatment on Wednesday, March 21. He was still having problems with diarrhea. When the diarrhea began after the first 3F8 treatment, it didn't have the distinct odor common with c-diff (he's had it twice before so unfortunately this is a smell I have experienced), so I was surprised by the c-diff diagnosis. At that time I questioned whether the diarrhea could have been caused by the treatment or one of the medications he's on to protect his thyroid from the radiation (the paperwork for one says that if diarrhea develops, a dose adjustment may be needed) but was told it wasn't likely. Since the diarrhea was still an issue after two weeks of antibiotics, they checked another stool sample for c-diff, but this time the culture came back negative; however this was expected since he was still on antibiotics. They told me to stop the antibiotics to see what happens, and conceded that perhaps it was being caused by the treatment or one of the medications. I doubt we'll ever know the cause, and nor does it matter; I'm honestly just tired of dealing with it and wish it would go away. Collin's new mantra is "Sore heiny...NO FUN!!!"
The 3F8 injection that day was planned for around 2 pm, so Collin's nausea and pain pre-meds were given accordingly. However, the injection didn't clear the QA process, so they had to prepare another one. This injection wasn't ready until around 4 pm, so by the time it was given, some of the pre-meds were wearing off. So, Collin vomited for a little while after the injection, but once second doses of the nausea meds could be given, he started to feel better. Before he was discharged that evening, Collin was eating again, demanding food because the steroids were making him hungry, as well as cranky and unhappy. Wednesday evening and Thursday morning, Collin was having tantrums and behavior that weren't common for him. Between the constant traveling, being away from home, treatments, and steroids, it wasn't at all surprising, but it was still draining to deal with and frustrating not to be able to help him calm down.
Last Wednesday, March 28, was Collin's last 3F8 treatment. When Collin woke up that morning he seemed fine, but then he barely ate any breakfast, which was a little out of the ordinary. When he was admitted after breakfast for his treatment and his vital signs were taken, we found out he had a slight temperature. His bloodwork was taken, and the nurse brought him a dose of Tylenol to see if it would help the fever go down. As soon as I gave him the Tylenol Collin threw it up, so they decided to draw more blood for cultures, get a urine sample, and planned to take a CSF sample to make sure he didn't have a serious infection brewing. We were also moved to an isolation room. Another dose of Tylenol was given, and thankfully Collin was able to keep it down. They decided that as long as his fever didn't continue to climb (thankfully it didn't!), they would give him his treatment. Of course he threw up almost immediately after the injection was given, but the vomiting didn't last long. Then he slept for a while afterwards. By the time he was discharged, he was ravenous and cranky, just as he was the week before. By then he also had a runny nose, so I figured he had developed a cold and on top of everything else, he just didn't feel well. Thankfully his cultures stayed negative, which meant he had no infections brewing.
We were entertaining ourselves with gloves for a while....
Collin rested for quite a while after the final injection.
Please pray that Collin's next MRI is clear. Please also keep Collin's oncologist in your prayers. She has been fighting cancer in her pediatric patients for 20 + years, but I have recently learned that she is in the middle of her own battle with breast cancer. And, please keep fellow medullo warrior Bree and her family in your prayers. They have been in my heart since her grandma and I met online in 2010 after Bree's diagnosis. Two year old Bree earned her angel wings two days ago, and my heart is broken for her and her family. Oh how I wish cancer would leave our babies alone!
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: http://conkerrcancer.org/conkerr-kids-collin-kratzer/
If you enjoy sewing, these pillowcases are simple and a great way to brighten a sick child's day!
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.
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.
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.
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.
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.
-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.
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