We only received a brief message about the MRI, since Dr MacDonald was booked with clinic appointments and unable to meet with us this morning at the proton center, but the cyst is "stable, if not smaller."
In my mind, that could mean a couple of things. It could be that the cyst expansion we saw before inflated it enough that the catheter is now able to continuously drain it, or the radiation is already working. Either way, it's good news. We just don't want to see it get any bigger.
I think this means Summer won't have to have another MRI here in Boston, but we'll see what Dr MacDonald says when we see her next.
Wednesday, February 16, 2011
Tuesday, February 15, 2011
Daddy!
We were so excited to have Jason come for a visit! Summer tried her hardest to wait up for his arrival, but couldn't hold out past 12:05am. He got to our room around 12:30am Thursday, so she didn't miss him by much!
In the morning, I headed out solo (for the first time in a LONG time) over to the proton center to watch one of the Christopher's Haven families celebrate their final treatment and say goodbye since they were driving home straight from the final treatment. I missed Summer waking up to see Jason for the first time, but they were cuddled up in bed when I got back.
She was very happy to see him and show off all her new toys, and the wait for her Thursday morning appointment (they're always a little later because the anesthesia doctors do their rounds and aren't available until 10 or so) was easier than ever despite the machine running late. Jason went with us into the treatment room and finally got to meet the dancing turtle. I've heard we're allowed to take pictures in the treatment room, so I need to bring my camera over there one of these days and you all can see what it looks like in there.
We had a relaxing and fun few days with Jason, and it all went by way too fast! We had to take him over to the Museum of Science to see the dinosaurs and, of course, the rocks.
On Jason's last night here, we took a trip over to Faneuil Hall. They have the mother of all food courts - the selection was amazing. We had fun just wandering around, looking at all the shops.
(The only picture of the three of us from this trip, and Summer's not looking, Jason's blurry, oh well!)
In the morning, I headed out solo (for the first time in a LONG time) over to the proton center to watch one of the Christopher's Haven families celebrate their final treatment and say goodbye since they were driving home straight from the final treatment. I missed Summer waking up to see Jason for the first time, but they were cuddled up in bed when I got back.
She was very happy to see him and show off all her new toys, and the wait for her Thursday morning appointment (they're always a little later because the anesthesia doctors do their rounds and aren't available until 10 or so) was easier than ever despite the machine running late. Jason went with us into the treatment room and finally got to meet the dancing turtle. I've heard we're allowed to take pictures in the treatment room, so I need to bring my camera over there one of these days and you all can see what it looks like in there.
We had a relaxing and fun few days with Jason, and it all went by way too fast! We had to take him over to the Museum of Science to see the dinosaurs and, of course, the rocks.
(Sneaking a rare bite of actual food. Actual food = anything other than Doritos)
Jason also got to help open a few care packages:
Relaxing with Daddy:
On Jason's last night here, we took a trip over to Faneuil Hall. They have the mother of all food courts - the selection was amazing. We had fun just wandering around, looking at all the shops.
Jason flew home on Sunday evening. It was hard to see him go! Summer slept through the train ride to the airport and the goodbyes. We tried to wake her up, but she was out cold. It made it a little easier on me not to see her get upset by him walking away, but she was very confused when she woke up and he wasn't there anymore. Even this morning, she woke up while I was in the shower and came running into the bathroom calling "Daddy?" because she thought Jason was here.
Thankfully, he comes back on the 24th, so we won't have to go as long without seeing him this time. Thanks, Uncle Steve, for Jason's plane tickets on this trip, and Uncle Jimmy for the next set!
Since Jason left, it's been back to the daily routine. Summer had an MRI this afternoon, so I'll post again tomorrow to let you all know what it shows. It was another HASTE MRI, without anesthesia, and she did great. I had asked for an anesthesia MRI this time since it is pretty stressful for her when they do these longer scans (5-7 minutes), but since she has a cold they don't want to put her under anesthesia twice in one day. She barely cried at all this time, so I think she's getting pretty used to it.
Hope you all had a wonderful Valentine's Day! We sure did.
Saturday, February 12, 2011
Anxiously awaiting Jason's arrival
After Grammy and Papa left, we were back to the normal daily routine - treatment, attempting to get naps in, work, etc. We had no appointments other than treatment this week, so there isn't really anything new to report about the medical side of things.
Summer continues to handle the treatments well, and is now completely used to the daily process. The only real side effects we've encountered at this point are frequent low-grade fevers and a loss of appetite. On most days, she'll nibble throughout the day - a couple of bites here and there - but she really hasn't been eating anything of substance. Her main source of nutrients at this point is yogurt smoothies from Whole Foods. She usually drinks two 6oz bottles a day.
The dietitian at the proton center recommended kids' Boost drinks, which are a calorie intensive drink, and gave us some samples. Summer hasn't really been interested in them though, and I don't blame her - they're not very good at all.
I've completely given up on gluten-free in this past week and will allow her to eat WHATEVER she wants just to get something in her tummy. Mostly she wants very sugary or salty things. The nurses were very excited to see her eat some chocolates she was given as a valentine the other morning, and it's a very odd thing to be so happy that my kid is eating a ton of junk food. Normally I'd be cringing, but that's 220 calories right there!
Summer continues to get wonderful care packages and valentines from all over. This week, she received a cute little Madeline doll and book from Jason's grandma's cousin Carol in Arizona. I'm not sure if you're aware, but apparently Madeline changed her name to Madison. Summer insists on it. I've given up arguing, and call her Madison now too.
She also received some fun valentines goodies from all over - thank you to everyone! Summer is loving all the mail, and the kindness of strangers continues to amaze me. I'm going to have to take a picture of her swimming in her pile of valentines sometime next week.
We spent the week eagerly awaiting Jason's arrival, and kept ourselves busy hanging out with the Christopher's Haven group. We've said few goodbyes this week, as three families finished treatment and headed home. It's a happy kind of sad.
Peter, Pam and Pete...
Nayider, Kamilah and Christian...
and Baby Ellie
We enjoyed spending the last few weeks with all of you! We'll miss you around here, but we're glad to know you're home and on to the next thing. Best of luck, and keep in touch!
As Kamilah would say,"YAAAAAAAAAY!"
Summer continues to handle the treatments well, and is now completely used to the daily process. The only real side effects we've encountered at this point are frequent low-grade fevers and a loss of appetite. On most days, she'll nibble throughout the day - a couple of bites here and there - but she really hasn't been eating anything of substance. Her main source of nutrients at this point is yogurt smoothies from Whole Foods. She usually drinks two 6oz bottles a day.
The dietitian at the proton center recommended kids' Boost drinks, which are a calorie intensive drink, and gave us some samples. Summer hasn't really been interested in them though, and I don't blame her - they're not very good at all.
I've completely given up on gluten-free in this past week and will allow her to eat WHATEVER she wants just to get something in her tummy. Mostly she wants very sugary or salty things. The nurses were very excited to see her eat some chocolates she was given as a valentine the other morning, and it's a very odd thing to be so happy that my kid is eating a ton of junk food. Normally I'd be cringing, but that's 220 calories right there!
Summer continues to get wonderful care packages and valentines from all over. This week, she received a cute little Madeline doll and book from Jason's grandma's cousin Carol in Arizona. I'm not sure if you're aware, but apparently Madeline changed her name to Madison. Summer insists on it. I've given up arguing, and call her Madison now too.
She also received some fun valentines goodies from all over - thank you to everyone! Summer is loving all the mail, and the kindness of strangers continues to amaze me. I'm going to have to take a picture of her swimming in her pile of valentines sometime next week.
A very talented dog named Bandit made this beautiful banner for Summer. Can't wait to hang it in her bedroom, but for now it's gracing our mirror here at Christopher's Haven. Thanks Bandit (and family)!
We spent the week eagerly awaiting Jason's arrival, and kept ourselves busy hanging out with the Christopher's Haven group. We've said few goodbyes this week, as three families finished treatment and headed home. It's a happy kind of sad.
Peter, Pam and Pete...
Nayider, Kamilah and Christian...
and Baby Ellie
We enjoyed spending the last few weeks with all of you! We'll miss you around here, but we're glad to know you're home and on to the next thing. Best of luck, and keep in touch!
As Kamilah would say,"YAAAAAAAAAY!"
A visit from Grammy and Papa
Starting from where I last left off, my dad and Melanie came out last weekend for a visit. We had fun hanging out with Grammy and Papa and showing them some of our favorite Boston places. Here are some of the highlights:
Hanging out at the apartment:
A trip to the Museum of Science:
A walk through the hospital to show my favorite view of Beacon Hill.
Once we hit the subway, Summer was pooped. She pulled her hat down over her eyes and slept all through the subway ride, through the walk to Boston Market and woke up just as we were finishing lunch.
After a long walk through the city, we enjoyed a movie night and ordered dinner in at the apartment. The next morning, we met Grammy and Papa at their hotel for breakfast before heading out to Harvard Square.
I realized that I have no pictures of Grammy on this trip! She really was here, I swear! We had a lot of fun while they were here, and successfully wore Summer out each day, which is quite a feat!
Hanging out at the apartment:
A trip to the Museum of Science:
(standing in Boston and Cambridge at the same time)
A walk through the hospital to show my favorite view of Beacon Hill.
Once we hit the subway, Summer was pooped. She pulled her hat down over her eyes and slept all through the subway ride, through the walk to Boston Market and woke up just as we were finishing lunch.
After a long walk through the city, we enjoyed a movie night and ordered dinner in at the apartment. The next morning, we met Grammy and Papa at their hotel for breakfast before heading out to Harvard Square.
Summer was very excited to see a Curious George shop in Harvard Square:
We ate lunch at Uno's, and Summer never even knew we were there. She fell asleep on Papa's shoulder shortly before we got there, slept all through lunch and the entire trip back to the subway.
I realized that I have no pictures of Grammy on this trip! She really was here, I swear! We had a lot of fun while they were here, and successfully wore Summer out each day, which is quite a feat!
Sunday, February 6, 2011
Halfway done!
I need to blog more frequently, I think. It's too easy to forget everything that has happened in a week when it all flies by so quickly! Let's see...since my last blog post:
Summer received a wonderful care package from the Van Avery family (Jason's mom's cousin Nicole, her husband Dylan and kids Madison, Hunter and Brooke). She gets so excited when we receive packages, and had so much fun opening each individually-wrapped present inside.
We've borrowed Cinderella II from Christopher's Haven, and Summer loves to run around with this wand shouting all kinds of modifications on "Bippity Boppity Boo!"
I'm told the kids picked out and wrapped all the gifts themselves - they did a fabulous job! Summer loved all of it.
Summer has also been receiving Valentines from people almost every day, mostly from people we've never met - friends of friends, friends of friends of friends, and other cancer survivors who have heard her story. She LOVES checking the mail and gets so happy when she has a new card waiting. Thank you to all of you!
We spent last weekend at the Aquarium and Children's Museum. I successfully wore Summer out both days and got to take advantage of some good nap time to work and sleep a little myself, of course. By Sunday, Summer had picked up my cold from last week. She started with a stuffy nose and developed a pretty serious cough, which I never had.
I was worried that she wouldn't be able to have radiation because of her cold and the complications it could cause with anesthesia, but they did end up treating her every day last week. The deciding factors were that 1) her lungs sounded clear, despite the phlegmy cough and 2) she wasn't having problems keeping her oxygen saturation levels up while under anesthesia.
We met with a neurosurgeon on Tuesday afternoon, just to go over her scan from the week before and talk about the possibility of readjusting the shunt flow setting. He felt like the increase in cyst size was minor enough that we shouldn't do anything yet. The risk with setting the flow too high is that the cyst walls can get stuck on the holes in the catheter and plug it up. He thought we should continue to monitor it and re-evaluate if we saw further changes. Since Dr MacDonald had already adjusted Summer's radiation plan to accommodate the slight change in size, this was fine by me.
Even the cold and the radiation still haven't slowed Summer down much. We had a lot of fun with the families at Christopher's Haven this week. On Tuesday evening, we heard some kids out in the hallway and went out to join them. My cheeks were sore by the time we came back to our room from laughing so hard. They had such a great time.
On Wednesday evening, there was a going away celebration for one of the families who had final treatment and moved out on Friday. Even with all the toys and games over at the Christopher's Haven loft, somehow the kids always end up playing in the hallway. Summer's favorite thing is going for rides in the dump truck.
I don't have any pictures of it, but she's great about taking her turn down the hallway and back, and then hopping off to let the next kid have a turn.
We have such a great group of families staying here right now. Some of them are finishing up this week, and while we're happy for them of course, we'll be sad to see them go. At the going away party, I got a chance to talk to Casey (21) who is being treated for a tumor in the same area as Summer's, although hers is a different type of tumor and is wrapped around her optic nerves. She has been feeling very sick from the radiation, so I hadn't seen much of her prior to that night although I'd talked a bit with her mom. It was very interesting to hear her explain what it's been like to have vision issues, since Summer has experienced some loss as well but can't tell us anything about it.
Earlier that day, Summer had another MRI. It went well, other than the fact that somebody--for some unknown reason--canceled Summer's appointment. We had talked about the appointment with neurosurgery the day before, and with the radiation team that morning. There was no doubt in my mind that she was supposed to have an MRI that day, but when we showed up at 11:15 they couldn't find Summer in the schedule.
After almost two hours of waiting, during which Summer was uncharacteristically patient, they squeezed her in. The MRI sequences they had ordered took significantly longer than previous scans. The ones she's had at Children's in Seattle take less than 30 seconds, and the one here last week was a few minutes, but they had to run it several times to get clean images. This time she was in the machine for just over 7 minutes, and it is my understanding that they didn't re-run anything. She tolerated it amazingly well. I was very impressed. If they have to do one that long again, though, I think I will request an anesthesia appointment. Even though she handled it well, it's very stressful for her. With tubey in during the week, she wouldn't even have to get a poke to do a scan with anesthesia.
On Thursday morning, one of the radiation doctors (Dr MacDonald was out of town this week) came and updated us on the scan. It showed the cyst was maybe 1mm larger than the week prior. A very minuscule change. We'll talk to Dr MacDonald about it on Monday, but it sounds like they won't need to alter the plan again and will plan to scan again in another week or two.
Thursday afternoon brought another impromptu running/dump-truck-riding session in the hallway with Spencer. Kamilah (2 months younger than Summer) came out to play too, and the girls were fighting over Spencer's attention. They were pushing him in the dump truck together and kept trying to elbow each other out of the way so they could be the only one pushing him. It was pretty funny!
The kids were having so much fun that before I knew it, it was 7pm and we hadn't eaten dinner yet. I started heating up some leftovers, and before they were even done, Summer had passed out on the bed. I ate by myself and let her sleep for a while. She woke up around 8:30 running a fever of 99.8 and extremely upset. I could tell she was uncomfortable and not feeling well, but she couldn't tell me what was wrong. A fever and a cold are enough to make anyone miserable, but I finally figured out the main source of her discomfort was constipation.
I won't give out the details, but after some juice (with a healthy dose of Miralax), cuddling, and a few trips to the bathroom in the middle of the night, she was feeling a bit better. Made for a rough night, but I'm glad her discomfort was so easily solved, and not something more serious.
Friday was Summer's 14th of 28 treatments, which makes her halfway done! When we got back to the room, we had a package waiting for us from my Aunt Becky and Uncle John. Summer has this package thing down now. When we get it back to our room, she goes and sits on the rug and says "you get the scissors, Mom. Let's open it!" So open it we did.
Summer absolutely loves this kitty! When she unwrapped it, she was hugging and kissing it so frantically that all of the pictures turned out blurry. Except this one.
Poor kitty accidentally took a swim in the toilet on Saturday though - yuck! He promptly had a very soapy bath and is now dry and clean once again.
The aftermath of care packages :)
On Friday evening, my dad and Melanie arrived for a weekend visit. That will have to be a blog post for another day - it's 12:30am and I need to go to bed!
Summer received a wonderful care package from the Van Avery family (Jason's mom's cousin Nicole, her husband Dylan and kids Madison, Hunter and Brooke). She gets so excited when we receive packages, and had so much fun opening each individually-wrapped present inside.
We've borrowed Cinderella II from Christopher's Haven, and Summer loves to run around with this wand shouting all kinds of modifications on "Bippity Boppity Boo!"
(bracelet with a working whistle charm)
I'm told the kids picked out and wrapped all the gifts themselves - they did a fabulous job! Summer loved all of it.
Summer has also been receiving Valentines from people almost every day, mostly from people we've never met - friends of friends, friends of friends of friends, and other cancer survivors who have heard her story. She LOVES checking the mail and gets so happy when she has a new card waiting. Thank you to all of you!
We spent last weekend at the Aquarium and Children's Museum. I successfully wore Summer out both days and got to take advantage of some good nap time to work and sleep a little myself, of course. By Sunday, Summer had picked up my cold from last week. She started with a stuffy nose and developed a pretty serious cough, which I never had.
I was worried that she wouldn't be able to have radiation because of her cold and the complications it could cause with anesthesia, but they did end up treating her every day last week. The deciding factors were that 1) her lungs sounded clear, despite the phlegmy cough and 2) she wasn't having problems keeping her oxygen saturation levels up while under anesthesia.
We met with a neurosurgeon on Tuesday afternoon, just to go over her scan from the week before and talk about the possibility of readjusting the shunt flow setting. He felt like the increase in cyst size was minor enough that we shouldn't do anything yet. The risk with setting the flow too high is that the cyst walls can get stuck on the holes in the catheter and plug it up. He thought we should continue to monitor it and re-evaluate if we saw further changes. Since Dr MacDonald had already adjusted Summer's radiation plan to accommodate the slight change in size, this was fine by me.
Even the cold and the radiation still haven't slowed Summer down much. We had a lot of fun with the families at Christopher's Haven this week. On Tuesday evening, we heard some kids out in the hallway and went out to join them. My cheeks were sore by the time we came back to our room from laughing so hard. They had such a great time.
On Wednesday evening, there was a going away celebration for one of the families who had final treatment and moved out on Friday. Even with all the toys and games over at the Christopher's Haven loft, somehow the kids always end up playing in the hallway. Summer's favorite thing is going for rides in the dump truck.
I don't have any pictures of it, but she's great about taking her turn down the hallway and back, and then hopping off to let the next kid have a turn.
We have such a great group of families staying here right now. Some of them are finishing up this week, and while we're happy for them of course, we'll be sad to see them go. At the going away party, I got a chance to talk to Casey (21) who is being treated for a tumor in the same area as Summer's, although hers is a different type of tumor and is wrapped around her optic nerves. She has been feeling very sick from the radiation, so I hadn't seen much of her prior to that night although I'd talked a bit with her mom. It was very interesting to hear her explain what it's been like to have vision issues, since Summer has experienced some loss as well but can't tell us anything about it.
Earlier that day, Summer had another MRI. It went well, other than the fact that somebody--for some unknown reason--canceled Summer's appointment. We had talked about the appointment with neurosurgery the day before, and with the radiation team that morning. There was no doubt in my mind that she was supposed to have an MRI that day, but when we showed up at 11:15 they couldn't find Summer in the schedule.
After almost two hours of waiting, during which Summer was uncharacteristically patient, they squeezed her in. The MRI sequences they had ordered took significantly longer than previous scans. The ones she's had at Children's in Seattle take less than 30 seconds, and the one here last week was a few minutes, but they had to run it several times to get clean images. This time she was in the machine for just over 7 minutes, and it is my understanding that they didn't re-run anything. She tolerated it amazingly well. I was very impressed. If they have to do one that long again, though, I think I will request an anesthesia appointment. Even though she handled it well, it's very stressful for her. With tubey in during the week, she wouldn't even have to get a poke to do a scan with anesthesia.
On Thursday morning, one of the radiation doctors (Dr MacDonald was out of town this week) came and updated us on the scan. It showed the cyst was maybe 1mm larger than the week prior. A very minuscule change. We'll talk to Dr MacDonald about it on Monday, but it sounds like they won't need to alter the plan again and will plan to scan again in another week or two.
Thursday afternoon brought another impromptu running/dump-truck-riding session in the hallway with Spencer. Kamilah (2 months younger than Summer) came out to play too, and the girls were fighting over Spencer's attention. They were pushing him in the dump truck together and kept trying to elbow each other out of the way so they could be the only one pushing him. It was pretty funny!
The kids were having so much fun that before I knew it, it was 7pm and we hadn't eaten dinner yet. I started heating up some leftovers, and before they were even done, Summer had passed out on the bed. I ate by myself and let her sleep for a while. She woke up around 8:30 running a fever of 99.8 and extremely upset. I could tell she was uncomfortable and not feeling well, but she couldn't tell me what was wrong. A fever and a cold are enough to make anyone miserable, but I finally figured out the main source of her discomfort was constipation.
I won't give out the details, but after some juice (with a healthy dose of Miralax), cuddling, and a few trips to the bathroom in the middle of the night, she was feeling a bit better. Made for a rough night, but I'm glad her discomfort was so easily solved, and not something more serious.
Friday was Summer's 14th of 28 treatments, which makes her halfway done! When we got back to the room, we had a package waiting for us from my Aunt Becky and Uncle John. Summer has this package thing down now. When we get it back to our room, she goes and sits on the rug and says "you get the scissors, Mom. Let's open it!" So open it we did.
This book about a girl who raises a coyote was a gift for me, but I haven't been able to take it back from Summer yet - she loves looking at the pictures of the "puppy."
The aftermath of care packages :)
On Friday evening, my dad and Melanie arrived for a weekend visit. That will have to be a blog post for another day - it's 12:30am and I need to go to bed!
Saturday, January 29, 2011
What a week!
Summer has now finished nine of 28 proton radiation treatments. Hard to believe we're basically a third of the way done - it's going very fast!
This last week was a little crazy. In addition to her morning radiation schedule, we had a lot of afternoon appointments, which really messes with naptime and makes for a grumpy kid. On top of it, I came down with a cold. Thankfully, Summer has managed to avoid getting it from me.
On Tuesday, Summer had the Boston equivalent of a HASTE MRI (the quick one they do without anesthesia). We made it through okay, but it didn't go as smoothly as the ones she's had over at Seattle Children's. MGH is not a children-only hospital, and the nurse admitted they don't have much experience doing this type of MRI for young children, although they'd like to do them more often to avoid giving anesthesia when it's really not necessary. Hopefully the pointers we gave them will help in the future, but part of it is that they just don't have everything they need to get it done efficiently for little kids. Without the forehead strap and pads to hold her head still, they had to run the MRI sequence 4 or 5 times to get good images for Summer. She has another one next week, so we'll see if that goes any easier.
We met with Dr Jones, a neurologist, on Wednesday afternoon. A neurology appointment comes standard with radiation, mainly to connect us with a doctor here in case we start seeing any problems. Sometimes, the neurologist will want to follow the child with visits throughout the radiation process, but Dr Jones didn't see anything in Summer that she thought made frequent visits necessary.
I was especially excited about this appointment because it was our chance to finally get a verdict on weaning Summer off of Keppra, the seizure medication she's been on preventatively since her August craniotomy. We've been ready to wean her off of it for some time, but kept having issues connecting with the neurologist in Seattle. We had an appointment, and then the Boston schedule got changed and we had to cancel it but couldn't get another one in before we left.
Keppra makes kids irritable and amplifies reactions, so we're anxious to get her off of it. It will take 8 weeks to wean completely because weaning too fast can actually cause seizures, but Summer had her first reduced dose on Thursday.
Dr Jones also asked if I had seen the scans from Tuesday. I hadn't yet, assuming we would hear about them after Wednesday's tumor board meeting, so she pulled them up to take a look. I could tell right away there is a little bubble of cyst that is re-accumulating. This is not abnormal - in fact, it's very common for cysts to get bigger during radiation. What's frustrating is that it's not draining with the shunt.
Dr Jones connected us with the pediatric neurosurgeons here at MGH and we have an appointment with Dr Butler this coming Tuesday afternoon to talk about increasing the flow of the shunt to see if it's just accumulating faster than the shunt is draining. The other possibility though, is that now that the cyst is collapsed, this part that is re-accumulating may not be accessible to the shunt catheter.
While that would be unfortunate, it's not really a problem yet. Dr MacDonald (the radiologist) has adjusted Summer's radiation treatment plan just slightly to accomodate the increase in cyst volume. It's such a small increase that she told us some might argue she didn't need to adjust the plan at all, but she would rather be on the safe side. She also sent copies of the scans over to Dr Browd (Summer's neurosurgeon in Seattle who placed the shunt) to see what he thinks about adjusting the flow of the shunt. We'll have more scans throughout the radiation treatment and can continue to adjust the plan as needed.
On Thursday afternoon, Summer had an endocrinology appointment. They had drawn some blood for labs during Summer's first radiation session, so we reviewed the results. Everything looks good, except her thyroid levels are a little off again. Summer has slight hypothyroidism and has been on medication for that since November, but these labs show that her dose was a little too high. They prescribed new pills at a reduced dose and will check her levels again in four weeks to see if the new dose is right.
Her radiation treatments have been a struggle this week. Summer was having waking up very quickly from the anesthesia, but had a very hard time shaking the effects of it. Most days, she would need about two hours before she was back to normal. In those two hours, she was extremely whiny (to the point where sentences were coming out as one big, completely unintelligible whine), irritable, and just plain grouchy.
By Thursday, I was actually beginning to understand the whiny sentences she'd been saying all week. It's like learning a new language and being put into submersion school two hours a day! Every day when we walk into the radiation room, they have a stuffed turtle that to Funky Town when you squeeze it's foot. I didn't realize Summer loved that turtle so much, but every day after waking up from anesthesia, she asks to go see the dancing turtle again. Of course, we can't - someone else is getting treatment by then - so I tell her he's taking a nap and we can't go wake him up, and she seems okay with that.
On Friday, we could really see how comfortable Summer is becoming with the whole process. She was walking around the prep/recovery room and playing with the nurses, and she walked herself all the way down to the radiation room when it was time for treatment.
That day, I asked them to allow me back to the recovery room well before she wakes up to see if having me there as she's waking up would make any difference in her behavior afterward. Normally, they call me when she's stirring, and by the time I get back there she's already awake and in whiny mode. I'm not sure whether it was me being there that helped, because she also woke up a bit more slowly, but she had a much better time on Friday. She was pleasant and talking in actual words.
Summer continues to be very sensitive about her "tubey," and often tells me "Don't touch my tubey, Mom. It's dangerous." Changing clothes is an even bigger battle than usual during the week when tubey is in. I've been trying to get a picture of it to send to Jason since day one of treatment, but she would never let me. UNTIL she was procrastinating at bedtime one day. Then she asked me to come take a picture of it with my phone. This is tubey:
While the weather (we had lots more snow this week), my cold and general grouchiness from skipping naps have kept us from going out much this week, we've kept busy in our apartment.
We got a couple of wonderful care packages from friends, the Kok and Drake families, which Summer thoroughly enjoyed.
Watercolor paints, a beautiful Summer necklace and stickers from Lauren, Ben, Val and Kevin Kok:
A Care Bear book, coloring book, new jammies and candy from Logan, Claire, Casie and Aaron Drake:
On Wednesday evening, we had a get together with some of the other families at Christopher's Haven so they could get some parent/family input on ideas they have for new things to do this year. It was great to get to talk to some of the other parents I hadn't had the chance to meet. There are a couple of older kids here for radiation, and it was interesting to hear about how they're feeling since Summer can't always tell me. Both of the older kids are pretty exhausted most days, and Summer definitely isn't, but they're a bit farther along in treatment, so some fatigue may be in our future.
On Thursday evening, a charity called Our Space came to the Christopher's Haven loft and put on an arts & crafts night for the kids. We had a blast! Summer made a lot of great art pieces - at least one will definitely be going on the wall when we get home (the purple star wand is my favorite) - and had a great time playing with the other kids close to her age. They ended the night with races back and forth down the hallway. All us grown-ups had sore cheeks from laughing so hard all night!
This was a genius idea - foam board that is sticky on one side, so no glue is necessary. Makes for a much neater art project!
My favorite piece of Summer's:
Making a card for Logan and Claire:
Playing trains with Spencer:
This is Spencer (3 years old):
Summer "hiding" and Spencer finding her during a great game of hide-and-seek:
Summer, Spencer and Kamilah (2 months younger than Summer) racing in the hallway:
The finished products:
I'm feeling much better now, and our snow gear has all arrived (we shipped some separately), so we'll probably go out and play in the snow sometime this weekend. Summer has been very anxious to build a snowman!
This last week was a little crazy. In addition to her morning radiation schedule, we had a lot of afternoon appointments, which really messes with naptime and makes for a grumpy kid. On top of it, I came down with a cold. Thankfully, Summer has managed to avoid getting it from me.
On Tuesday, Summer had the Boston equivalent of a HASTE MRI (the quick one they do without anesthesia). We made it through okay, but it didn't go as smoothly as the ones she's had over at Seattle Children's. MGH is not a children-only hospital, and the nurse admitted they don't have much experience doing this type of MRI for young children, although they'd like to do them more often to avoid giving anesthesia when it's really not necessary. Hopefully the pointers we gave them will help in the future, but part of it is that they just don't have everything they need to get it done efficiently for little kids. Without the forehead strap and pads to hold her head still, they had to run the MRI sequence 4 or 5 times to get good images for Summer. She has another one next week, so we'll see if that goes any easier.
We met with Dr Jones, a neurologist, on Wednesday afternoon. A neurology appointment comes standard with radiation, mainly to connect us with a doctor here in case we start seeing any problems. Sometimes, the neurologist will want to follow the child with visits throughout the radiation process, but Dr Jones didn't see anything in Summer that she thought made frequent visits necessary.
I was especially excited about this appointment because it was our chance to finally get a verdict on weaning Summer off of Keppra, the seizure medication she's been on preventatively since her August craniotomy. We've been ready to wean her off of it for some time, but kept having issues connecting with the neurologist in Seattle. We had an appointment, and then the Boston schedule got changed and we had to cancel it but couldn't get another one in before we left.
Keppra makes kids irritable and amplifies reactions, so we're anxious to get her off of it. It will take 8 weeks to wean completely because weaning too fast can actually cause seizures, but Summer had her first reduced dose on Thursday.
Dr Jones also asked if I had seen the scans from Tuesday. I hadn't yet, assuming we would hear about them after Wednesday's tumor board meeting, so she pulled them up to take a look. I could tell right away there is a little bubble of cyst that is re-accumulating. This is not abnormal - in fact, it's very common for cysts to get bigger during radiation. What's frustrating is that it's not draining with the shunt.
Dr Jones connected us with the pediatric neurosurgeons here at MGH and we have an appointment with Dr Butler this coming Tuesday afternoon to talk about increasing the flow of the shunt to see if it's just accumulating faster than the shunt is draining. The other possibility though, is that now that the cyst is collapsed, this part that is re-accumulating may not be accessible to the shunt catheter.
While that would be unfortunate, it's not really a problem yet. Dr MacDonald (the radiologist) has adjusted Summer's radiation treatment plan just slightly to accomodate the increase in cyst volume. It's such a small increase that she told us some might argue she didn't need to adjust the plan at all, but she would rather be on the safe side. She also sent copies of the scans over to Dr Browd (Summer's neurosurgeon in Seattle who placed the shunt) to see what he thinks about adjusting the flow of the shunt. We'll have more scans throughout the radiation treatment and can continue to adjust the plan as needed.
On Thursday afternoon, Summer had an endocrinology appointment. They had drawn some blood for labs during Summer's first radiation session, so we reviewed the results. Everything looks good, except her thyroid levels are a little off again. Summer has slight hypothyroidism and has been on medication for that since November, but these labs show that her dose was a little too high. They prescribed new pills at a reduced dose and will check her levels again in four weeks to see if the new dose is right.
Her radiation treatments have been a struggle this week. Summer was having waking up very quickly from the anesthesia, but had a very hard time shaking the effects of it. Most days, she would need about two hours before she was back to normal. In those two hours, she was extremely whiny (to the point where sentences were coming out as one big, completely unintelligible whine), irritable, and just plain grouchy.
By Thursday, I was actually beginning to understand the whiny sentences she'd been saying all week. It's like learning a new language and being put into submersion school two hours a day! Every day when we walk into the radiation room, they have a stuffed turtle that to Funky Town when you squeeze it's foot. I didn't realize Summer loved that turtle so much, but every day after waking up from anesthesia, she asks to go see the dancing turtle again. Of course, we can't - someone else is getting treatment by then - so I tell her he's taking a nap and we can't go wake him up, and she seems okay with that.
On Friday, we could really see how comfortable Summer is becoming with the whole process. She was walking around the prep/recovery room and playing with the nurses, and she walked herself all the way down to the radiation room when it was time for treatment.
That day, I asked them to allow me back to the recovery room well before she wakes up to see if having me there as she's waking up would make any difference in her behavior afterward. Normally, they call me when she's stirring, and by the time I get back there she's already awake and in whiny mode. I'm not sure whether it was me being there that helped, because she also woke up a bit more slowly, but she had a much better time on Friday. She was pleasant and talking in actual words.
Summer continues to be very sensitive about her "tubey," and often tells me "Don't touch my tubey, Mom. It's dangerous." Changing clothes is an even bigger battle than usual during the week when tubey is in. I've been trying to get a picture of it to send to Jason since day one of treatment, but she would never let me. UNTIL she was procrastinating at bedtime one day. Then she asked me to come take a picture of it with my phone. This is tubey:
While the weather (we had lots more snow this week), my cold and general grouchiness from skipping naps have kept us from going out much this week, we've kept busy in our apartment.
We got a couple of wonderful care packages from friends, the Kok and Drake families, which Summer thoroughly enjoyed.
Watercolor paints, a beautiful Summer necklace and stickers from Lauren, Ben, Val and Kevin Kok:
A Care Bear book, coloring book, new jammies and candy from Logan, Claire, Casie and Aaron Drake:
On Wednesday evening, we had a get together with some of the other families at Christopher's Haven so they could get some parent/family input on ideas they have for new things to do this year. It was great to get to talk to some of the other parents I hadn't had the chance to meet. There are a couple of older kids here for radiation, and it was interesting to hear about how they're feeling since Summer can't always tell me. Both of the older kids are pretty exhausted most days, and Summer definitely isn't, but they're a bit farther along in treatment, so some fatigue may be in our future.
On Thursday evening, a charity called Our Space came to the Christopher's Haven loft and put on an arts & crafts night for the kids. We had a blast! Summer made a lot of great art pieces - at least one will definitely be going on the wall when we get home (the purple star wand is my favorite) - and had a great time playing with the other kids close to her age. They ended the night with races back and forth down the hallway. All us grown-ups had sore cheeks from laughing so hard all night!
This was a genius idea - foam board that is sticky on one side, so no glue is necessary. Makes for a much neater art project!
My favorite piece of Summer's:
Making a card for Logan and Claire:
Playing trains with Spencer:
This is Spencer (3 years old):
Summer "hiding" and Spencer finding her during a great game of hide-and-seek:
Summer, Spencer and Kamilah (2 months younger than Summer) racing in the hallway:
The finished products:
I'm feeling much better now, and our snow gear has all arrived (we shipped some separately), so we'll probably go out and play in the snow sometime this weekend. Summer has been very anxious to build a snowman!
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