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.
Tuesday, February 28, 2012
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.
Saturday, January 21, 2012
Saturday, January 21, 2012
Monday afternoon we headed to New York City for Collin's appointments at MSKCC Tuesday. Since Neya had no school Monday and we planned to come home Tuesday after the appointment, we brought her along this time so she could see where Collin would be going for treatment. We also told her we'd take her to FAO Scwartz so we could have a little fun while we were there. We checked into the Ronald McDonald House around 5:30 that evening. It was our first experience staying at a Ronald McDonald House. After we checked in, we were shown to our room, and then given a tour. The staff were extremely friendly and caring, and they really do so much to try to make your stay as comfortable as possible. There are kitchens where you can keep some of your own food in refrigerators, freezers, and pantries, and the kitchens are stocked with utensils so you can cook your own meals if you wish. There is also a community dining room where volunteers come in around five times a week to serve dinner to the families. There is a library, where some different classes are offered. There is a playroom with toys, books, art supplies, video games, computers, etc. There is a patio where during the summer they have cookouts. They have teachers available to help the kids and siblings staying there. People have to travel from all over to different hospitals in New York City for care, so it's nice they have a place to stay while they are there.
Unfortunately, I'm not overly fond of traveling, which combined with my anxiety about why we were there, had me feeling more upset about the negatives than thankful for the positives, so I was in a mood for the whole trip that I had a hard time pulling myself out of. Our room, although large, had two single beds and a fold out sofa, and was like a bare bones dorm room, so it lacked the comforts of home, or even a hotel room. You are expected to clean the room and launder the linens before you leave, which I have no problem doing, but it was difficult to find the time in our schedule to do so since we were there for such a short time. Navigating through the city, train station, etc. with two kids, a stroller, and suitcases, and dealing with the cold and rain while doing so wasn't very fun. I am so familiar with Hershey Medical Center, their staff, and how they do things that I know what to expect; being in a different hospital where I don't know my way around so well and am not familiar with the staff or their procedures was stressful to me. I'm sure I'll become more familiar and comfortable each time I make the trip, and knowing what to expect will make things easier, but it's not a trip I can do by myself with Collin; I'll definitely need another adult with me. And in the end, we spent such a long day at the hospital Tuesday that we never did get to go the the toy store and have a little fun before we left, which left all of us disappointed.
We had to be at the hospital at 8:30 Tuesday morning, and Collin's MRI was scheduled for 10:30. Of course Collin wasn't able to eat after midnight because of the anesthesia, so we were all very hungry (the rest of us didn't eat breakfast because we didn't want to eat in front of him). He was finished in MRI around 12:45, and after some bloodwork, we were in the waiting room by 1:30 waiting for the doctor to meet with us. Unfortunately, she didn't meet with us until 4:45, so we spent all that time sitting around doing nothing. We didn't leave the hospital until around 6:00 pm. Then we caught a cab to Penn Station, took a train back to Edison, and drove the two hours home. We finally got home about 11:30 Tuesday night. Needless to say, it was an exhausting two days.
I don't remember if I've explained this treatment before, so forgive me if I'm repeating myself. Researchers have found that Collin's cancer, medulloblastoma, has a certain protein, called GD2, on it's cells. There is an antibody called 3F8 that attaches to the GD2 protein. They take the 3F8 antibody and combine it with radioactive iodine. Then it is injected into the omaya reservoir, which is like a port in Collin's head. The radioactive antibody travels through Collin's cerebral spinal fluid, attaches to any cancer cells it encounters, and then delivers the radioactive iodine to the cell, radiating and killing it. The radiation only penetrates about one millimeter, which is why Collin had to be at "minimal residual disease" for it to work (it wouldn't be able to completely radiate a tumor larger than 1 millimeter in size). The round of chemo in November and the Gamma Knife procedure in December accomplished this, and the metronomic (daily) therapy that Collin has been taking at home has kept anything from growing back so far. The 3F8 treatment has been used on kids with neuroblastoma for about twenty years; it has been used on medulloblastoma for about five years. The doctor said there has only been one other child that she has used this treatment on who had the same subtype of disease as Collin (similar age at diagnosis, metastasis to the spine, etc.) The good news is that two to three years later, that little girl is still alive and doing well.
It looks like Collin will start the 3F8 treatment at MSKCC on February 28. We are hoping the omaya reservoir can be placed in the very beginning of February; thankfully that can be done in Hershey by Collin's neurosurgeon. Then he will have to have a specific kind of CSF flow study at MSKCC to make sure that his cerebral spinal fluid circulates through his brain and spine well enough to distribute the antibody. I think we will have to stay in NYC for a few days when this test is done. Then we will travel to NYC on Monday February 27, and spend a long day at the hospital on Tuesday February 28 for the first injection. We will have to remain in the city for a few days after the first injection, because they do PET scans and other tests at certain intervals for 48 hours after the first injection. Hopefully we will be home in time for Neya's birthday on March 2. Then we will travel to NYC on Mondays, spend Tuesdays at the hospital, and hopefully come home on Wednesday every week of March. Then about a month later we will have to return to NYC for another MRI.
This is a lot of traveling, and I know it will be exhausting. During this time, Collin will be taking a break from his physical, occupational, and speech therapy so that we can rest for the few days at home between each trip. My parents will fly in and stay with us for the first two weeks of treatment; that way Bill and I can take Collin for his first injection, and they can stay with Neya so that we keep her schedule and routine as normal as possible. Then the following week, my parents will go to NYC with me and Collin, so Bill can stay home with Neya and work. For weeks three and four, my friend's dad will go with me and Collin so that Bill can stay home with Neya and work, and then for treatment number five, Bill, Neya, me and Collin will go to NYC together.
While Collin is having this 3F8 treatment, his tumor tissue for his brain surgery in 2010 can be tested for another protein which has been found on only some medulloblastoma tumors. If his tumor has that particular protein, there is another, similar treatment at MSKCC that he can do after this treatment. It is our hope that one or both of these treatments will allow us to at the very least postpone complete brain and spine radiation; ideally these treatments would eliminate the need for cranio-spinal radiation completely. This week has been hard for me; besides our traveling and trying to work out the logistics of regular trips to NYC, there has been some more losses and hard news for other kids I have come to know. Please pray for Clinton's family as they learn to cope with his loss (http://www.caringbridge.org/visit/clintonmilliken), and for sweet Bree who's scans this week show what is probable recurrence/disease spread (http://www.caringbridge.org/visit/breehaga). Also, please pray for little Grace, the two year old niece of a close friend of mine who was recently diagnosed with an aggressive form of leukemia. I hate cancer.
Unfortunately, I'm not overly fond of traveling, which combined with my anxiety about why we were there, had me feeling more upset about the negatives than thankful for the positives, so I was in a mood for the whole trip that I had a hard time pulling myself out of. Our room, although large, had two single beds and a fold out sofa, and was like a bare bones dorm room, so it lacked the comforts of home, or even a hotel room. You are expected to clean the room and launder the linens before you leave, which I have no problem doing, but it was difficult to find the time in our schedule to do so since we were there for such a short time. Navigating through the city, train station, etc. with two kids, a stroller, and suitcases, and dealing with the cold and rain while doing so wasn't very fun. I am so familiar with Hershey Medical Center, their staff, and how they do things that I know what to expect; being in a different hospital where I don't know my way around so well and am not familiar with the staff or their procedures was stressful to me. I'm sure I'll become more familiar and comfortable each time I make the trip, and knowing what to expect will make things easier, but it's not a trip I can do by myself with Collin; I'll definitely need another adult with me. And in the end, we spent such a long day at the hospital Tuesday that we never did get to go the the toy store and have a little fun before we left, which left all of us disappointed.
We had to be at the hospital at 8:30 Tuesday morning, and Collin's MRI was scheduled for 10:30. Of course Collin wasn't able to eat after midnight because of the anesthesia, so we were all very hungry (the rest of us didn't eat breakfast because we didn't want to eat in front of him). He was finished in MRI around 12:45, and after some bloodwork, we were in the waiting room by 1:30 waiting for the doctor to meet with us. Unfortunately, she didn't meet with us until 4:45, so we spent all that time sitting around doing nothing. We didn't leave the hospital until around 6:00 pm. Then we caught a cab to Penn Station, took a train back to Edison, and drove the two hours home. We finally got home about 11:30 Tuesday night. Needless to say, it was an exhausting two days.
I don't remember if I've explained this treatment before, so forgive me if I'm repeating myself. Researchers have found that Collin's cancer, medulloblastoma, has a certain protein, called GD2, on it's cells. There is an antibody called 3F8 that attaches to the GD2 protein. They take the 3F8 antibody and combine it with radioactive iodine. Then it is injected into the omaya reservoir, which is like a port in Collin's head. The radioactive antibody travels through Collin's cerebral spinal fluid, attaches to any cancer cells it encounters, and then delivers the radioactive iodine to the cell, radiating and killing it. The radiation only penetrates about one millimeter, which is why Collin had to be at "minimal residual disease" for it to work (it wouldn't be able to completely radiate a tumor larger than 1 millimeter in size). The round of chemo in November and the Gamma Knife procedure in December accomplished this, and the metronomic (daily) therapy that Collin has been taking at home has kept anything from growing back so far. The 3F8 treatment has been used on kids with neuroblastoma for about twenty years; it has been used on medulloblastoma for about five years. The doctor said there has only been one other child that she has used this treatment on who had the same subtype of disease as Collin (similar age at diagnosis, metastasis to the spine, etc.) The good news is that two to three years later, that little girl is still alive and doing well.
It looks like Collin will start the 3F8 treatment at MSKCC on February 28. We are hoping the omaya reservoir can be placed in the very beginning of February; thankfully that can be done in Hershey by Collin's neurosurgeon. Then he will have to have a specific kind of CSF flow study at MSKCC to make sure that his cerebral spinal fluid circulates through his brain and spine well enough to distribute the antibody. I think we will have to stay in NYC for a few days when this test is done. Then we will travel to NYC on Monday February 27, and spend a long day at the hospital on Tuesday February 28 for the first injection. We will have to remain in the city for a few days after the first injection, because they do PET scans and other tests at certain intervals for 48 hours after the first injection. Hopefully we will be home in time for Neya's birthday on March 2. Then we will travel to NYC on Mondays, spend Tuesdays at the hospital, and hopefully come home on Wednesday every week of March. Then about a month later we will have to return to NYC for another MRI.
This is a lot of traveling, and I know it will be exhausting. During this time, Collin will be taking a break from his physical, occupational, and speech therapy so that we can rest for the few days at home between each trip. My parents will fly in and stay with us for the first two weeks of treatment; that way Bill and I can take Collin for his first injection, and they can stay with Neya so that we keep her schedule and routine as normal as possible. Then the following week, my parents will go to NYC with me and Collin, so Bill can stay home with Neya and work. For weeks three and four, my friend's dad will go with me and Collin so that Bill can stay home with Neya and work, and then for treatment number five, Bill, Neya, me and Collin will go to NYC together.
While Collin is having this 3F8 treatment, his tumor tissue for his brain surgery in 2010 can be tested for another protein which has been found on only some medulloblastoma tumors. If his tumor has that particular protein, there is another, similar treatment at MSKCC that he can do after this treatment. It is our hope that one or both of these treatments will allow us to at the very least postpone complete brain and spine radiation; ideally these treatments would eliminate the need for cranio-spinal radiation completely. This week has been hard for me; besides our traveling and trying to work out the logistics of regular trips to NYC, there has been some more losses and hard news for other kids I have come to know. Please pray for Clinton's family as they learn to cope with his loss (http://www.caringbridge.org/visit/clintonmilliken), and for sweet Bree who's scans this week show what is probable recurrence/disease spread (http://www.caringbridge.org/visit/breehaga). Also, please pray for little Grace, the two year old niece of a close friend of mine who was recently diagnosed with an aggressive form of leukemia. I hate cancer.
Friday, January 13, 2012
Friday, January 13, 2012
Collin has been feeling fine since his Gamma Knife procedure on December 30. The pin holes have healed, and the stitch in the right side of his forehead is dissolving. He's also been tolerating his daily chemo and other meds very well, with no major side effects. His hair is starting to grow back, so his head is covered in downy fuzz. I envy his energy levels; he's like a little Energizer bunny who just keeps going and going, no matter what is thrown at him treatment-wise, and he does it all with a smile on his face!
The tumor board at Memorial Sloan-Kettering Cancer Center in NYC had approved Collin for their 3F8 treatment after the MRI on December 9 showed the new nodule was gone. He would have to be four weeks past the Gamma Knife procedure to start the treatment, and his oncologist didn't want to stop his maintenance chemo until he had been on it for six weeks. Both of these time periods are finished on January 30. Collin needs to be off chemo for 21 days before starting the 3F8 treatment, which means he could start towards the end of February. There are some other things that have to be taken care of before he can start the treatment: placement of the omaya reservoir, a CSF (cerebral spinal fluid) flow study, and determining insurance coverage. The omaya reservoir will be surgically placed by Collin's neurosurgeon at PS Hershey Children's Hospital, but before that is done we have to meet with another doctor at MSKCC. We found out today that she can see Collin on the 17th, and he will have another MRI of his brain and spine that morning before we meet with the doctor. So, we'll head to NYC sometime Monday after Collin's clinic appointment, and we'll be at MSKCC bright and early Tuesday morning. I'll update as soon as I can after our little trip!
I leave you with wishes for a happy, HEALTHY new year, and a request for continued prayers for all of the little warriors fighting cancer, including Cole (Fight Back! for Cole) who has been having a rough few weeks, Emily (www.EmilyHubbel.com) whose parents received very difficult news recently, and Talon, a sweet baby boy battling Medullobastoma who has come home on hospice, as well as the countless families who've lost their precious children to this beast and the survivors who have been left with lifelong physical and neurological challenges from their cancer treatments. Let's continue to raise awareness in 2012 so childhood cancer research can get more of the funding it desperately needs, because kids get cancer too!
The tumor board at Memorial Sloan-Kettering Cancer Center in NYC had approved Collin for their 3F8 treatment after the MRI on December 9 showed the new nodule was gone. He would have to be four weeks past the Gamma Knife procedure to start the treatment, and his oncologist didn't want to stop his maintenance chemo until he had been on it for six weeks. Both of these time periods are finished on January 30. Collin needs to be off chemo for 21 days before starting the 3F8 treatment, which means he could start towards the end of February. There are some other things that have to be taken care of before he can start the treatment: placement of the omaya reservoir, a CSF (cerebral spinal fluid) flow study, and determining insurance coverage. The omaya reservoir will be surgically placed by Collin's neurosurgeon at PS Hershey Children's Hospital, but before that is done we have to meet with another doctor at MSKCC. We found out today that she can see Collin on the 17th, and he will have another MRI of his brain and spine that morning before we meet with the doctor. So, we'll head to NYC sometime Monday after Collin's clinic appointment, and we'll be at MSKCC bright and early Tuesday morning. I'll update as soon as I can after our little trip!
I leave you with wishes for a happy, HEALTHY new year, and a request for continued prayers for all of the little warriors fighting cancer, including Cole (Fight Back! for Cole) who has been having a rough few weeks, Emily (www.EmilyHubbel.com) whose parents received very difficult news recently, and Talon, a sweet baby boy battling Medullobastoma who has come home on hospice, as well as the countless families who've lost their precious children to this beast and the survivors who have been left with lifelong physical and neurological challenges from their cancer treatments. Let's continue to raise awareness in 2012 so childhood cancer research can get more of the funding it desperately needs, because kids get cancer too!
Friday, December 30, 2011
Gamma Knife
We got to the hospital at 6:30 this morning for Collin's Gamma Knife procedure. He was checked in, we signed another consent form, and by 7:15 we were down in radiology for his MRI. Collin was very content watching a favorite movie on the iPad until he was put to sleep. The anesthesiologist was very kind and listened to my input about what works best for putting Collin to sleep. Collin fights the mask, so we've found that taking the mask off and just holding the hose under his nose works better. The gas has a distinct smell, so this time he used some "laughing gas" first to relax Collin, and then switched to the other gas when the smell wouldn't bother Collin. After that, the mask can be put on without traumatizing him.
Once he was asleep, his port was accessed so the Propofol (anesthetic) could be administered, he had a quick high resolution MRI of his brain, and then they attached a frame to Collin's head that was held in place by four pins. Then he was brought back up to the Gamma Knife clinic, where they put a clear helmet over the frame, and used it to take measurements needed to program the Gamma Knife machine. After about 15 minutes of entering and verifying data in the Gamma Knife machine, Collin was wheeled into the Gamma Knife room, which is completely encased in two feet of lead. They loaded Collin into the machine, and the frame around his head was inserted into a large metal helmet with holes in it. There was a camera positioned on the machine that allowed the procedure to be monitored in the room outside the Gamma Knife room. Once everything was exactly in place, we all left the room and the lead door was closed.
The physicist, radiation oncologist, anesthesiologist, and nurse watched and monitored the procedure on computers outside the lead room. The procedure itself only took about 15 minutes. 201 beams of radiation were put through Collin's head at all different angles so they intersected in the area where the tumor was, to hopefully destroy any microscopic cancer cells that may have been left in the tumor bed. When we had the consultation with the neurosurgeon before Christmas, he said that if they saw any other new tumors on the MRI that they would radiate them too. Thankfully, no new tumors were seen!
After the Gamma Knife procedure was complete, they took Collin out of the machine, and removed the frame from his head. He has four pin holes in his scalp where the frame was attached that are just covered with Band-Aids. One of the four pins went into his skull, so he had a small amount of CSF leaking out. The neurosurgeon put a dissolvable stitch in place to close the hole, and Collin's head is wrapped in a bandage to keep pressure on the hole. Collin woke up quickly and happily, and was trying to sit up right away. He ate some crackers and drank some juice without throwing up, and we were allowed to bring him home around noon. We have to monitor the CSF leak closely, but he really has no restrictions. Kids will self limit, which means they'll do what they feel like doing (whereas adults tend to do more than they should). Collin doesn't seem to be in any pain, and is eating a late lunch as I type this. If his head wasn't wrapped in a bandage, you'd never know he had anything done this morning!
Once he was asleep, his port was accessed so the Propofol (anesthetic) could be administered, he had a quick high resolution MRI of his brain, and then they attached a frame to Collin's head that was held in place by four pins. Then he was brought back up to the Gamma Knife clinic, where they put a clear helmet over the frame, and used it to take measurements needed to program the Gamma Knife machine. After about 15 minutes of entering and verifying data in the Gamma Knife machine, Collin was wheeled into the Gamma Knife room, which is completely encased in two feet of lead. They loaded Collin into the machine, and the frame around his head was inserted into a large metal helmet with holes in it. There was a camera positioned on the machine that allowed the procedure to be monitored in the room outside the Gamma Knife room. Once everything was exactly in place, we all left the room and the lead door was closed.
The physicist, radiation oncologist, anesthesiologist, and nurse watched and monitored the procedure on computers outside the lead room. The procedure itself only took about 15 minutes. 201 beams of radiation were put through Collin's head at all different angles so they intersected in the area where the tumor was, to hopefully destroy any microscopic cancer cells that may have been left in the tumor bed. When we had the consultation with the neurosurgeon before Christmas, he said that if they saw any other new tumors on the MRI that they would radiate them too. Thankfully, no new tumors were seen!
After the Gamma Knife procedure was complete, they took Collin out of the machine, and removed the frame from his head. He has four pin holes in his scalp where the frame was attached that are just covered with Band-Aids. One of the four pins went into his skull, so he had a small amount of CSF leaking out. The neurosurgeon put a dissolvable stitch in place to close the hole, and Collin's head is wrapped in a bandage to keep pressure on the hole. Collin woke up quickly and happily, and was trying to sit up right away. He ate some crackers and drank some juice without throwing up, and we were allowed to bring him home around noon. We have to monitor the CSF leak closely, but he really has no restrictions. Kids will self limit, which means they'll do what they feel like doing (whereas adults tend to do more than they should). Collin doesn't seem to be in any pain, and is eating a late lunch as I type this. If his head wasn't wrapped in a bandage, you'd never know he had anything done this morning!
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