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.
Tuesday, February 28, 2012
Monday, February 27, 2012
I've been meaning to update, but the last two weeks have been incredibly busy! The indoor yard sale fundraiser was held on February 11 in a local Knights of Columbus hall. The Knights let us into the hall the night before so donations could be dropped off and we could get things ready, they provided dinner Friday night to everyone who worked to set the yard sale up, and they opened the hall bright and early Saturday morning for the sale. They were extremely generous and accomodating, and we are overwhelmed and very grateful to them for everything they did for us! Some members of the Bishop McDevitt High School girl's softball team helped set up the sale Friday night, and we are thankful for their assistance as well. Thanks to the efforts of many, the sale was a big success. Due to the generosity of so many people, we had more donations of yard sale items and baked goods than we ever could have expected. We sold quite a lot of things, and we were able to donate unsold items to 5 other organizations. The unsold baby clothing and equipment was donated to Morning Star Pregnancy Services, as part of the local Bishop McDevitt High School softball team’s charitable fundraiser. The unsold books were donated to the East Shore Area Library’s book sale to raise funds for the library. Unsold blankets were donated to volunteers who assist homeless people. Unsold furniture was donated to the Salvation Army, and the remaining unsold items were donated to Goodwill. It feels good to know that we were able to help others while receiving help ourselves. And if it wasn't for the amazing kindness and support of some wonderful friends, none of this would have happened. To Michelle and Andy, Susan, MaryBeth, Greer, Payal and Andy, Jen, Pam, Erin, Kelly, JoAnn and Ken..I don't know how to ever thank you!
On Tuesday February 14, Collin was scheduled for a hearing test and hearing aid fitting. Bilateral hearing loss is an expected side effect of high dose chemotherapy, but Collin's slight (high frequency) hearing loss is in his right ear only. Our theory is that the hearing loss is more related to the brain surgery than chemo, since all of the physical deficits that Collin has are on his right side, which was the side affected by his brain surgery. The hearing test in November showed hearing loss in both ears, which is why a hearing aid was sheduled to be fitted. However, this month's hearing test results were consistent with the results from December's test and the tests prior to November, which showed only some loss in the right ear. It's possible that in November Collin could have had fluid in his ears, had an off day, or wasn't responding properly to the test for some other reason. Since all tests but one show only high frequency loss on one side, and it is not impacting his speech, Collin will not be fitted with a hearing aid at this time as expected.
On Thursday February 16, I shared Collin's story at Hershey High School's mini-THON kickoff assembly. Many schools throughout Central Pennsylvania hold their own mini dance marathons, modeled after Penn State University's THON, where students stay on their feet all night to raise money for the Four Diamonds Fund. All together, these mini-THONs raise over $1 million. Hershey High School will spend the rest of February and the month of March fundraising, and their mini-THON will be held from 6 pm March 30 through 6 am March 31. It is their 19th mini-THON. This is the second time I have shared Collin's story at Hershey High. I'm not a seasoned public speaker so I was nervous, but everyone was very friendly and welcoming, and I even ran into someone I haven't seen in years, which made my day! The students were very enthusiastic, and I know they will be successful in their efforts. We are planning to be there on March 30 to cheer them on!
On Friday February 17, we headed up to Penn State to attend our second THON. We were extremely excited for the weekend, and I purposely scheduled Collin's appointments around the weekend because we didn't want to miss it. We needed a little fun family vacation before the next six weeks of traveling and separation. The students in the fundraising organization that we were paired with, Penn State Altoona campus, have become like family to us. They are caring and hardworking, and their level of dedication is amazing to me. I am truly glad that they are role models for my children, especially Neya, who already talks about going to Penn State some day and being involved in THON. Altoona was the second highest-raising Commonwealth campus; they raised $82,872.57 of the record-breaking $10,686,924.83 grand total. We love our Altoona THON family, and are humbled by and proud of their efforts!
On Tuesday February 21, Collin had another MRI; this one had to be done 7-10 days before his first treatment at Sloan-Kettering. The MRI was scheduled for 12:30 pm. After the MRI was finished and Collin woke up from anesthesia, we went home so Collin could have something to eat, and then got on the road for NYC. We got to the Ronald McDonald House in NYC around 11:00 pm. It was a very long day, but everything went very smoothly, and Collin was a great traveler. And best of all, that evening I received the news from Collin's oncologist at Hershey that the MRI was all clear! I was very nervous since Collin had been off all of his maintenance meds for nearly a month; I was so afraid to hear that another tumor had grown in that time that I even had a nightmare about it. So, I was very relieved to hear that the MRI was clear!!
The following day we had to be at Sloan-Kettering for Collin's CSF flow study. In order for this upcoming treatment to work, Collin's cerebral-spinal fluid has to be flowing all throughout his brain and spine to carry the radioactive antibody everywhere it needs to go. There was no reason to think that he would have any problems with this, especially since he does not have a vp shunt, but they needed to make sure. So, they injected a radioactive dye into the ommaya reservoir in Collin's head, and did some sort of scan a few hours after the injection, and then again 24 hours later. Wednesday was a long day of just waiting around, and unfortunately Collin couldn't eat for most of the day since they anesthetised him for the scan, which didn't take place until after noon. But Collin was a trooper and handled everything very well-probably even better than I would have in his shoes. Thursday his scan was a bit earlier, so he didn't have to wait quite as long to eat. Then we were on our way back home. We found out on Friday that the CSF flow study results were good, and Collin was cleared to begin treatment on February 29.
On Friday we also learned that we needed to head back to NYC today. We have an appointment tomorrow to sign treatment consent forms, and then Collin will receive his first treatment on Wednesday. On Thursday and Friday he will have more scans to monitor how long it takes for the radiation to leave his body. Hopefully his scan on Friday will be early enough that we can travel back home afterwards, since it is Neya's 8th birthday, and I'd like to be with her that day!
Please pray that the trip this week is a smooth one, and that Collin's treatment goes well, without making him too sick. Also please keep in your prayers fellow medulloblastoma warrior Bree (www.caringbridge.org/visit/breehaga), who has relapsed and is undergoing another brain surgery today to remove new tumors, and AT/RT warrior Anna Rose (www.caringbridge.org/visit/weloveannarose), who earned her wings Sunday February 19.
On Tuesday February 14, Collin was scheduled for a hearing test and hearing aid fitting. Bilateral hearing loss is an expected side effect of high dose chemotherapy, but Collin's slight (high frequency) hearing loss is in his right ear only. Our theory is that the hearing loss is more related to the brain surgery than chemo, since all of the physical deficits that Collin has are on his right side, which was the side affected by his brain surgery. The hearing test in November showed hearing loss in both ears, which is why a hearing aid was sheduled to be fitted. However, this month's hearing test results were consistent with the results from December's test and the tests prior to November, which showed only some loss in the right ear. It's possible that in November Collin could have had fluid in his ears, had an off day, or wasn't responding properly to the test for some other reason. Since all tests but one show only high frequency loss on one side, and it is not impacting his speech, Collin will not be fitted with a hearing aid at this time as expected.
On Thursday February 16, I shared Collin's story at Hershey High School's mini-THON kickoff assembly. Many schools throughout Central Pennsylvania hold their own mini dance marathons, modeled after Penn State University's THON, where students stay on their feet all night to raise money for the Four Diamonds Fund. All together, these mini-THONs raise over $1 million. Hershey High School will spend the rest of February and the month of March fundraising, and their mini-THON will be held from 6 pm March 30 through 6 am March 31. It is their 19th mini-THON. This is the second time I have shared Collin's story at Hershey High. I'm not a seasoned public speaker so I was nervous, but everyone was very friendly and welcoming, and I even ran into someone I haven't seen in years, which made my day! The students were very enthusiastic, and I know they will be successful in their efforts. We are planning to be there on March 30 to cheer them on!
On Friday February 17, we headed up to Penn State to attend our second THON. We were extremely excited for the weekend, and I purposely scheduled Collin's appointments around the weekend because we didn't want to miss it. We needed a little fun family vacation before the next six weeks of traveling and separation. The students in the fundraising organization that we were paired with, Penn State Altoona campus, have become like family to us. They are caring and hardworking, and their level of dedication is amazing to me. I am truly glad that they are role models for my children, especially Neya, who already talks about going to Penn State some day and being involved in THON. Altoona was the second highest-raising Commonwealth campus; they raised $82,872.57 of the record-breaking $10,686,924.83 grand total. We love our Altoona THON family, and are humbled by and proud of their efforts!
On Tuesday February 21, Collin had another MRI; this one had to be done 7-10 days before his first treatment at Sloan-Kettering. The MRI was scheduled for 12:30 pm. After the MRI was finished and Collin woke up from anesthesia, we went home so Collin could have something to eat, and then got on the road for NYC. We got to the Ronald McDonald House in NYC around 11:00 pm. It was a very long day, but everything went very smoothly, and Collin was a great traveler. And best of all, that evening I received the news from Collin's oncologist at Hershey that the MRI was all clear! I was very nervous since Collin had been off all of his maintenance meds for nearly a month; I was so afraid to hear that another tumor had grown in that time that I even had a nightmare about it. So, I was very relieved to hear that the MRI was clear!!
The following day we had to be at Sloan-Kettering for Collin's CSF flow study. In order for this upcoming treatment to work, Collin's cerebral-spinal fluid has to be flowing all throughout his brain and spine to carry the radioactive antibody everywhere it needs to go. There was no reason to think that he would have any problems with this, especially since he does not have a vp shunt, but they needed to make sure. So, they injected a radioactive dye into the ommaya reservoir in Collin's head, and did some sort of scan a few hours after the injection, and then again 24 hours later. Wednesday was a long day of just waiting around, and unfortunately Collin couldn't eat for most of the day since they anesthetised him for the scan, which didn't take place until after noon. But Collin was a trooper and handled everything very well-probably even better than I would have in his shoes. Thursday his scan was a bit earlier, so he didn't have to wait quite as long to eat. Then we were on our way back home. We found out on Friday that the CSF flow study results were good, and Collin was cleared to begin treatment on February 29.
On Friday we also learned that we needed to head back to NYC today. We have an appointment tomorrow to sign treatment consent forms, and then Collin will receive his first treatment on Wednesday. On Thursday and Friday he will have more scans to monitor how long it takes for the radiation to leave his body. Hopefully his scan on Friday will be early enough that we can travel back home afterwards, since it is Neya's 8th birthday, and I'd like to be with her that day!
Please pray that the trip this week is a smooth one, and that Collin's treatment goes well, without making him too sick. Also please keep in your prayers fellow medulloblastoma warrior Bree (www.caringbridge.org/visit/breehaga), who has relapsed and is undergoing another brain surgery today to remove new tumors, and AT/RT warrior Anna Rose (www.caringbridge.org/visit/weloveannarose), who earned her wings Sunday February 19.
Saturday, February 4, 2012
Friday, February 3, 2012
Friday, February 3, 2012
We checked in at the hospital Wednesday morning for the surgery to place the ommaya reservoir in Collin's head. Everything went very smoothly. As always, I requested to be able to escort him to the OR and stay with him until he was asleep. This kept Collin calm and cooperative, and eliminated the need for pre-medicating him to keep him calm. The surgery went quickly and without complications, and Collin woke up from the anesthesia quickly. He was a little agitated at first because he was hungry. He ate some pudding, and then begged for chicken soup. The PACU nurse got a kick out of that-he said he's never had that request before! Once Collin had his soup, he was much happier. He was then moved to the Same-Day Unit to be observed for a few hours. Originally they were going to have him stay overnight for observation, but since he was eating, playing, and acting normally and didn't seem to have any pain, they let us come home.
Wednesday evening Collin had a low grade fever, but we were told that was not unexpected after surgery. I gave him Tylenol as directed. At around 12:30 Thursday morning, Collin was asleep one minute and projectile vomiting the next. His fever was higher despite the dose of Tylenol an hour and half before. The fever was not quite high enough to meet the neurosurgery protocol for calling after hours, but it was high enough to meet the oncology protocol for calling after hours. I decided to call neurosurgery first, but the person I spoke to wasn't concerned, saying a fever and vomiting was normal and to call back if I couldn't wake Collin. I wasn't comfortable with that though since I know how quickly things can happen in someone who is immuno compromised, so I called the pediatric oncologist on call. He told me he would feel better if they checked Collin out, and was going to have us come into the hospital. He called the hospital to make the arrangements, but then called me back twice, once to tell me there were no open beds and that I should take Collin to the ED, and then again to tell me the ED was backed up by 75 people and that I should keep Collin home and keep watching him, and that unless things got worse overnight, Collin could be seen in the clinic Thursday morning. Thankfully, the vomiting stopped and his fever slowly came down, so Thursday it was decided he didn't need to be seen in the clinic. We went to his therapy appointments instead, and he ended up having one of his best speech therapy sessions yet! He was saying his words really well, was participating enthusiastically, and kept making us laugh. His humorous streak continued in occupational therapy, and it was a really fun morning.
This morning when Collin woke up, the right side of his face was so swollen that his right eye is almost swollen completely closed. I spoke to the neurosurgery fellow who knows him, and although she's surprised the swelling didn't happen until today, she said swelling after surgery isn't uncommon. Collin's ommaya reservoir was placed just behind his forehead on the right side, where the neurosurgeon could use the burr hole/canal made from the external ventricular drain in 2010, so the swelling is most likely just related to the surgery. As long as no fever develops and the swelling doesn't increase, she isn't concerned about it. Hopefully it will subside in the next few days.
We also finally have the schedule for the CSF flow study that has to be done in NY. The second half of February is going to make my head spin. We will be in State College for THON (which is as important as Christmas to us, so we don't want to miss it) from February 17-20. On the afternoon of the 21st he has an MRI in Hershey, and then that evening we will have to travel to NY. On the 22nd he will be put to sleep, be injected with a radio tag dye, and have a scan. Then on the 23rd, twenty-four hours after the dye injection, he will have a second scan, also under anesthesia. I'm not sure if we will be able to come home that same day, or if we will have to meet with the doctor on the 24th before we are able to come home. My parents arrive from Texas the evening of the 24th, and then we will travel back to NY on the 27th so that Collin can start treatment on the 28th. We're not yet sure what day that week we will get to come home.
After reviewing the treatment plan and deciding the treatment is medically necessary, our insurance carrier has agreed to cover it. We are relieved and thankful because the estimated cost we were given for the treatment, which does include worst case scenarios that hopefully won't happen but would help make the cost so high, was over $400 K. Our wonderful friends are still proceeding with fundraising plans to help cover our travel/lodging/food expenses, and because we still don't know what the future holds as far as what treatments Collin will need, but at least we don't need to raise anywhere near $400 K right now! Thank you again for any amount that you are able to contribute, no matter how small. Your help, and your prayers, are very much appreciated!
Wednesday evening Collin had a low grade fever, but we were told that was not unexpected after surgery. I gave him Tylenol as directed. At around 12:30 Thursday morning, Collin was asleep one minute and projectile vomiting the next. His fever was higher despite the dose of Tylenol an hour and half before. The fever was not quite high enough to meet the neurosurgery protocol for calling after hours, but it was high enough to meet the oncology protocol for calling after hours. I decided to call neurosurgery first, but the person I spoke to wasn't concerned, saying a fever and vomiting was normal and to call back if I couldn't wake Collin. I wasn't comfortable with that though since I know how quickly things can happen in someone who is immuno compromised, so I called the pediatric oncologist on call. He told me he would feel better if they checked Collin out, and was going to have us come into the hospital. He called the hospital to make the arrangements, but then called me back twice, once to tell me there were no open beds and that I should take Collin to the ED, and then again to tell me the ED was backed up by 75 people and that I should keep Collin home and keep watching him, and that unless things got worse overnight, Collin could be seen in the clinic Thursday morning. Thankfully, the vomiting stopped and his fever slowly came down, so Thursday it was decided he didn't need to be seen in the clinic. We went to his therapy appointments instead, and he ended up having one of his best speech therapy sessions yet! He was saying his words really well, was participating enthusiastically, and kept making us laugh. His humorous streak continued in occupational therapy, and it was a really fun morning.
This morning when Collin woke up, the right side of his face was so swollen that his right eye is almost swollen completely closed. I spoke to the neurosurgery fellow who knows him, and although she's surprised the swelling didn't happen until today, she said swelling after surgery isn't uncommon. Collin's ommaya reservoir was placed just behind his forehead on the right side, where the neurosurgeon could use the burr hole/canal made from the external ventricular drain in 2010, so the swelling is most likely just related to the surgery. As long as no fever develops and the swelling doesn't increase, she isn't concerned about it. Hopefully it will subside in the next few days.
We also finally have the schedule for the CSF flow study that has to be done in NY. The second half of February is going to make my head spin. We will be in State College for THON (which is as important as Christmas to us, so we don't want to miss it) from February 17-20. On the afternoon of the 21st he has an MRI in Hershey, and then that evening we will have to travel to NY. On the 22nd he will be put to sleep, be injected with a radio tag dye, and have a scan. Then on the 23rd, twenty-four hours after the dye injection, he will have a second scan, also under anesthesia. I'm not sure if we will be able to come home that same day, or if we will have to meet with the doctor on the 24th before we are able to come home. My parents arrive from Texas the evening of the 24th, and then we will travel back to NY on the 27th so that Collin can start treatment on the 28th. We're not yet sure what day that week we will get to come home.
After reviewing the treatment plan and deciding the treatment is medically necessary, our insurance carrier has agreed to cover it. We are relieved and thankful because the estimated cost we were given for the treatment, which does include worst case scenarios that hopefully won't happen but would help make the cost so high, was over $400 K. Our wonderful friends are still proceeding with fundraising plans to help cover our travel/lodging/food expenses, and because we still don't know what the future holds as far as what treatments Collin will need, but at least we don't need to raise anywhere near $400 K right now! Thank you again for any amount that you are able to contribute, no matter how small. Your help, and your prayers, are very much appreciated!
Friday, January 27, 2012
Friday, January 27, 2012
This past Monday, I made a clinic appointment for Collin because he had been fighting a cold for a few weeks, and for almost a week he had drainage from his eyes. He was given antibiotic eye drops (which he hates!) Yesterday afternoon, he woke up from a nap, shivering and kind of wimpering. He felt warm, so I took his temperature, which was 101.2. I called the oncology office, and was told to bring him to the clinic. Blood was taken to check his counts and for cultures, and one of the oncologists checked him over. The labwork showed his white blood cell count to be elevated which means that he's fighting something. Thankfully we were allowed to come home last night. The fever stayed around 100 overnight and this morning. The cultures haven't grown, so I think he's just fighting a cold. Hopefully his fever will go down soon; I don't want anything to interfere with his surgery next week.
Plans are falling into place for Collin's upcoming treatment. He will have the surgery to insert the ommaya reservoir into his head next Wednesday, February 1. We'll have to be at the hospital very early, and there is a chance that he'll have to stay overnight after the surgery. Bill found an animated video explanation of what an ommaya reservoir is; it can be seen here.
Hopefully the procedure will go smoothly, without complications. I'm sad that his little body will have yet another scar, and that his nice round head will now have a permanent bump in it. The ommaya reservoir isn't typically removed, so Collin will always have it. Hopefully it will be less noticeable once his hair is covering it.
Plans are falling into place for Collin's upcoming treatment. He will have the surgery to insert the ommaya reservoir into his head next Wednesday, February 1. We'll have to be at the hospital very early, and there is a chance that he'll have to stay overnight after the surgery. Bill found an animated video explanation of what an ommaya reservoir is; it can be seen here.
Hopefully the procedure will go smoothly, without complications. I'm sad that his little body will have yet another scar, and that his nice round head will now have a permanent bump in it. The ommaya reservoir isn't typically removed, so Collin will always have it. Hopefully it will be less noticeable once his hair is covering it.
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