Unbelievable News!
So back in November I posted about my cousin and her daughter whose cancer had returned - http://vineyard-girl.livejournal.com/2010/11/11/
Things were not hopeful then. Jenn and Shayla wound up not going to St. Jude's because it would've been right before Thanksgiving and they would've had to cancel their trip to NY for Thanksgiving. So they took the trip and on the way home they visited Sloan Kettering and CHOP. The Dr. they spoke to at Sloan was very enthusiastic and was talking about a cure, but the treatment was to basically throw HUGE doses of Chemo at the problem (I'm sure I'm not reporting this quite correctly because it was said to me 3rd hand). Then they went to CHOP and they were not as hopeful but they did have a clinical trial they wanted her to try. It involved Shayla being treated in Philadelphia for a few days, every 3 weeks. They decided to go with CHOP, because the treatment wouldn't make Shayla as sick. The plan was that they'd try it for 45 days and see if it was working. If it wasn't they'd move up to Sloan.
So for Shay's first treatment Jenn, Savannah and Shayla all came up for 8 days. They stayed at the Ronald McDonald House in Philly. Chris and I met up with them while they were there. We picked them up at the hospital and wanted to take them out to dinner and I was trying to think of a place that would be fun for kids and was thinking Dave & Buster's would be fun, so we drove over there. When we got there, there was a Hibachi place next door and we decided to go there instead. That was Shay's first day of chemo and they couldn't even make it through dinner. I felt bad that I wasn't thinking about what the patient would be up for. She had a lot of pain in her back and was just miserable so Jenn and Shayla went to the car before diner was actually ready and Chris, Savannah and I stayed and finished up. I hadn't spent anytime with them in years and I was just so impressed with Savannah and how well spoken and caring she was. She never complained about having to cater to her little sister, she just wanted to be there with her and her mom - she was fine missing school and taking her school work with her, she just wanted to be at the hospital with them.
As I said, I hadn't spent much time with them in years, so it was really eye opening. Since Shay got sick (and Jenn had to stop working), we've been sending Jenn money every month. I'm not sure if all the cousins do this but my brother and I each send $50/month and my parents send $100/month. I thought this was helpful and there were a few times when I wondered how long we'd do that for, but after spending a night with them, all I could think was how little we were actually doing and wished we could do more. So they were staying at the Ronald McDonald house (which is the original Ronald McDonald house, btw and it's a gorgeous building that was lit up beautifully for the Holidays) and it's a great deal and very convenient. It's like a normal hotel room, but they have activities/entertainment there every night and it's only $15/night. So that's not bad, but when they can't get into a RMcD House, the options are crazy - there was a special rate at the Sheraton (For $189/night!), but that would add up so quickly. Plus they have to afford all the flights, and food while they are there and taxis to/from the hospital (it's only about 7 blocks away, but often that's just too much for Shayla to walk). I guess I just never thought about all the particulars before. I know that they have a ton of people who love them and help take care of them in NC - their church has raised a lot of money for them to help with their costs and people take in Savannah (and their dog) for weeks at a time when Jenn had to be with Shay for treatment several house away from Asheville. Anyway, it was nice to be able to take them out for a night even if Shay was miserable, it was great to catch up with them, but it did make me realize just how much harder this was for everyone than I had realized. I also let them know that we'd be moving into a house shortly and if they ever wanted to stay with us they could, since Chris drives into work every morning (about 5 blocks from CHOP) it'd be easy for us to take them to the hospital.
So I'm not sure I understand all the particulars of the clinical trial that they are in. If I understand correctly it's a slow-release chemo. So she has a treatment in the hospital. 24 hours later Jenn gives her a shot, then she gets to leave the hospital for 3 weeks. I'm not sure if Jenn is giving shots at home every day or not, but the hope is that the chemo can be administered similarly to the way that insulin is administered to diabetics. Anyway, time flew by (in my world) and I didn't get to see them the last time they were up on 12/27 and 12/28. So this time was their 45 days already and they were doing scans to see if their had been any reduction in the tumor and to see if they should continue treatment or drop her from the study. Well all the tests were amazingly promising. The Radiologist called the doctor and asked if Shay had had surgery - there was NO evidence of the [previously large very fast growing] tumor AT ALL! They also did a bone marrow aspiration yesterday and there was no evidence of cancer there either! I think it was much better news that anyone could've expected. Apparently all the doctors there were thrilled by this too and it just shows how important clinical trials can be. It doesn't mean that she has actually beat the cancer or that she won't need more treatment but it's still pretty amazing progress and is giving everyone a ton of hope!
So last night I went down there to celebrate with them. It was just Jenn and Shayla up for this trip but it was a really fun night! Shay seemed to feel great and she looks adorable with her bald head (side note: when they were up in December everyone got together in Long Island and my brother brought his clippers down to see in Shayla wanted to shave his head, so she did and she shaved my cousin's wife's head too! Gina looks really good with a shaved head - that is such a brave thing to do as a woman who has always had long hair). So Shay said she wanted to go to a game place so we went to Dave & Buster's. She wanted grilled cheese and french fries and macaroni and cheese! And she was thrilled to tell the waiter that she kicked cancer's butt (then she relayed to me the story were she asked her mom if she could say ass because she didn't just want to kick cancer's but, she wanted to kick cancer in the asshole :O)). We also played a ton of games. Shay found a claw game that had like 8 free tries on it and she picked up 4 different stuffed animals and a ton of tickets. Then we played some other games where she got tickets and she was so energetic and excited - it was really fun to watch! Dinner was yummy and we played more games, then we had fondue desert (Shay asked the waiter if they could write kick caner's butt on a cake, but they couldn't do that but they brought her a candle that she could blow out and make a wish and they brought her a cup of whipped cream with more candles to make more wishes). It was very sweet and she seemed to really have a great time and everyone there was so sweet to her! One woman had a $50 game card and she gave that to Shay (up until then we'd played a ton of games with just a $10 game card) and a bunch of people gave her their tickets. By the time we went to leave, she had almost 7000 tickets and was able to get a minion stuffed animal, a kung fu guy and a present for Savannah and still had 4000 tickets left over for another day.
It was a long day for me, but it was really fun and I'm so happy that the news is so good for her. I know Jenn was thrilled, but this means she also has to make a lot of decisions. The protocol for treatment, now that it's working, is to continue this chemo (and coming to CHOP every 3 weeks) for the next 5 years! Jenn was saying she's not sure she can do this for a year let alone 5, but getting to have an 11 year old would be work it (Shay turns 6 next month). So there's the question of do they move to this area where they don't know anyone or move back to Long Island where most of the family is. But they really have a great community of people down in NC that they are really close with, so I'm sure it'll be a really hard decision for them. But yeah, great night :o)
Things were not hopeful then. Jenn and Shayla wound up not going to St. Jude's because it would've been right before Thanksgiving and they would've had to cancel their trip to NY for Thanksgiving. So they took the trip and on the way home they visited Sloan Kettering and CHOP. The Dr. they spoke to at Sloan was very enthusiastic and was talking about a cure, but the treatment was to basically throw HUGE doses of Chemo at the problem (I'm sure I'm not reporting this quite correctly because it was said to me 3rd hand). Then they went to CHOP and they were not as hopeful but they did have a clinical trial they wanted her to try. It involved Shayla being treated in Philadelphia for a few days, every 3 weeks. They decided to go with CHOP, because the treatment wouldn't make Shayla as sick. The plan was that they'd try it for 45 days and see if it was working. If it wasn't they'd move up to Sloan.
So for Shay's first treatment Jenn, Savannah and Shayla all came up for 8 days. They stayed at the Ronald McDonald House in Philly. Chris and I met up with them while they were there. We picked them up at the hospital and wanted to take them out to dinner and I was trying to think of a place that would be fun for kids and was thinking Dave & Buster's would be fun, so we drove over there. When we got there, there was a Hibachi place next door and we decided to go there instead. That was Shay's first day of chemo and they couldn't even make it through dinner. I felt bad that I wasn't thinking about what the patient would be up for. She had a lot of pain in her back and was just miserable so Jenn and Shayla went to the car before diner was actually ready and Chris, Savannah and I stayed and finished up. I hadn't spent anytime with them in years and I was just so impressed with Savannah and how well spoken and caring she was. She never complained about having to cater to her little sister, she just wanted to be there with her and her mom - she was fine missing school and taking her school work with her, she just wanted to be at the hospital with them.
As I said, I hadn't spent much time with them in years, so it was really eye opening. Since Shay got sick (and Jenn had to stop working), we've been sending Jenn money every month. I'm not sure if all the cousins do this but my brother and I each send $50/month and my parents send $100/month. I thought this was helpful and there were a few times when I wondered how long we'd do that for, but after spending a night with them, all I could think was how little we were actually doing and wished we could do more. So they were staying at the Ronald McDonald house (which is the original Ronald McDonald house, btw and it's a gorgeous building that was lit up beautifully for the Holidays) and it's a great deal and very convenient. It's like a normal hotel room, but they have activities/entertainment there every night and it's only $15/night. So that's not bad, but when they can't get into a RMcD House, the options are crazy - there was a special rate at the Sheraton (For $189/night!), but that would add up so quickly. Plus they have to afford all the flights, and food while they are there and taxis to/from the hospital (it's only about 7 blocks away, but often that's just too much for Shayla to walk). I guess I just never thought about all the particulars before. I know that they have a ton of people who love them and help take care of them in NC - their church has raised a lot of money for them to help with their costs and people take in Savannah (and their dog) for weeks at a time when Jenn had to be with Shay for treatment several house away from Asheville. Anyway, it was nice to be able to take them out for a night even if Shay was miserable, it was great to catch up with them, but it did make me realize just how much harder this was for everyone than I had realized. I also let them know that we'd be moving into a house shortly and if they ever wanted to stay with us they could, since Chris drives into work every morning (about 5 blocks from CHOP) it'd be easy for us to take them to the hospital.
So I'm not sure I understand all the particulars of the clinical trial that they are in. If I understand correctly it's a slow-release chemo. So she has a treatment in the hospital. 24 hours later Jenn gives her a shot, then she gets to leave the hospital for 3 weeks. I'm not sure if Jenn is giving shots at home every day or not, but the hope is that the chemo can be administered similarly to the way that insulin is administered to diabetics. Anyway, time flew by (in my world) and I didn't get to see them the last time they were up on 12/27 and 12/28. So this time was their 45 days already and they were doing scans to see if their had been any reduction in the tumor and to see if they should continue treatment or drop her from the study. Well all the tests were amazingly promising. The Radiologist called the doctor and asked if Shay had had surgery - there was NO evidence of the [previously large very fast growing] tumor AT ALL! They also did a bone marrow aspiration yesterday and there was no evidence of cancer there either! I think it was much better news that anyone could've expected. Apparently all the doctors there were thrilled by this too and it just shows how important clinical trials can be. It doesn't mean that she has actually beat the cancer or that she won't need more treatment but it's still pretty amazing progress and is giving everyone a ton of hope!
So last night I went down there to celebrate with them. It was just Jenn and Shayla up for this trip but it was a really fun night! Shay seemed to feel great and she looks adorable with her bald head (side note: when they were up in December everyone got together in Long Island and my brother brought his clippers down to see in Shayla wanted to shave his head, so she did and she shaved my cousin's wife's head too! Gina looks really good with a shaved head - that is such a brave thing to do as a woman who has always had long hair). So Shay said she wanted to go to a game place so we went to Dave & Buster's. She wanted grilled cheese and french fries and macaroni and cheese! And she was thrilled to tell the waiter that she kicked cancer's butt (then she relayed to me the story were she asked her mom if she could say ass because she didn't just want to kick cancer's but, she wanted to kick cancer in the asshole :O)). We also played a ton of games. Shay found a claw game that had like 8 free tries on it and she picked up 4 different stuffed animals and a ton of tickets. Then we played some other games where she got tickets and she was so energetic and excited - it was really fun to watch! Dinner was yummy and we played more games, then we had fondue desert (Shay asked the waiter if they could write kick caner's butt on a cake, but they couldn't do that but they brought her a candle that she could blow out and make a wish and they brought her a cup of whipped cream with more candles to make more wishes). It was very sweet and she seemed to really have a great time and everyone there was so sweet to her! One woman had a $50 game card and she gave that to Shay (up until then we'd played a ton of games with just a $10 game card) and a bunch of people gave her their tickets. By the time we went to leave, she had almost 7000 tickets and was able to get a minion stuffed animal, a kung fu guy and a present for Savannah and still had 4000 tickets left over for another day.
It was a long day for me, but it was really fun and I'm so happy that the news is so good for her. I know Jenn was thrilled, but this means she also has to make a lot of decisions. The protocol for treatment, now that it's working, is to continue this chemo (and coming to CHOP every 3 weeks) for the next 5 years! Jenn was saying she's not sure she can do this for a year let alone 5, but getting to have an 11 year old would be work it (Shay turns 6 next month). So there's the question of do they move to this area where they don't know anyone or move back to Long Island where most of the family is. But they really have a great community of people down in NC that they are really close with, so I'm sure it'll be a really hard decision for them. But yeah, great night :o)