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!"
(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."
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!
