Last week was the first camp that either Shelly or Jason have been to. I was never really worried about Shelly. She is incredibly adaptable and goes along with almost anything and she loves to do the type of things that go on at camp. Jason, however, is not that type. He gave me cause to worry about how he would handle camp. He's been away from home before, I wasn't too worried about that. His adventures would come in other forms.
So, it's no surprise that I was a little bit nervous to hear from the counselors how he handled camp. Once we were parked and heading in (with the two little ones in tow), word got out that we were Chomper's family and there was rather a bit of a reaction. This was not reassuring. We had told one of the counselors (Nike) that we were looking for Pillow and Chomper, but somehow Chomper's name was the one that she mentioned to others - I was unsure if this was a good sign or a bad sign...
We headed into the mess hall to meet the kids and Shelly ran up and grabbed Mark to give him a hug. She spent most of the rest of the time showing us the stuff she made and playing with Emily and Annie. Jason was going through his camp stuff at the table when we came in and didn't see us immediately. Once he saw us he excitedly told us all about how much fun he had, the things he got to do and the people he met - at least I think that's what he was telling us. He was talking so fast (and there was a lot of other noise in the room) that it was hard to understand everything he was saying...
Their unit counselor, Bubbles, was nearby, so once I got a break I asked her how the kids did (but I must confess to mostly being curious about Jason - I didn't think Shelly's experience was really in question).
Her response - about Jason: "He was definitely the most rewarding camper." I was pretty sure this was code for challenging. Great reward really only comes with great effort after all...
So, Shelly had changed her name just a few minutes after we left. She went from Pillow to Butterfly (which would explain why only Chomper's name was memorable to Nike when she announcing our arrival - that was reassuring). Jason also changed his name, but he changed his mid-week. Apparently, when a camper or counselor calls someone the wrong name, they have to kiss a tree. Jason somehow figured out a way to take advantage of this and decided that it would be fun to make everyone kiss trees, so in an effort to confuse people and trick them into calling him the wrong name, he changed his name from Chomper to Zombie ... on Wednesday ... and then proceeded to have a great day making everyone kiss a tree...
So, we left a Pillow and a Chomper at camp and came back with a Butterfly and a Zombie...
Shelly did all of the crafts and had a large collection of stuff to show us when we got there. It was fun to watch her show off all of the stuff she made.
Jason only did some of the crafts - but to tell you the truth, I'm impressed they got him to do any at all (one or two of the more 'special' ones someone else did for him, just so he would have one to bring home). He was awesome at the running around games; tag, capture the flag, the treasure hunt, and things like that. He refused to go swimming and spent swim time playing in the nearby playground instead. He also won a huge jar of jelly beans at the carnival. He guessed how many were in the jar (he guessed 1,000) and won!
Showers were also not his thing. (He's still doing baths at home - it's easier to throw him in with the younger girls still - that was our fault) He told Bubbles that he was excited to come back next year, but only if he didn't have to take a shower. Bubbles laughed good and hard about that comment!
Turns out his cabin counselor's name was not Master Po. His name was Mumble. I got the face right but the name mixed up. Mumble was good with Jason too. Both he and Bubbles were so excited with Jason on the last night there. They had finally convinced Jason to participate and he got up on stage during the talent program! They were both way excited by that accomplishment. Turns out Jason was the youngest camper there, which I'm sure added a bit of drama to the personality that is Jason... :)
One of the things Jason told me right at the beginning, while he was still talking in his 'excited about camp' voice, was that he now has a Dream Castle. It's supposed to hold all of the nightmares so they can't get out (at least, I think that's how it went, it was loud and he was talking quickly and his speech issues are at their worst in those situations - and I was distracted). I meant to ask him where he got that from, but I completely forgot until right now, and Mark is getting them dinner while I type, so it will have to wait until later.
Shelly had fun on the way home telling us everything they did at camp. She sang some songs for us, told us about an empowerment circle they did (they all took turns talking and then they got a balloon they could write their worries and fears on and then let the balloons go), she told us how much fun swimming was and that the pool there was only 5 feet deep and she jumped in and touched the bottom of the pool (with her feet) before swimming to the ladder. Somewhere in there she asked if she could stop talking, so we let her take a break.
I believe that's about everything I know about how camp went...
And now you know too (if you actually read that whole thing...)
UPDATE: So, while I was putting the kidlets to bed, Jason mentioned his Dream Castle again. Just as I was about to ask him about it, he showed it to me. It was a dream catcher... (from native american culture - tell me you know what I'm talking about...) Turns out it was a hearing problem on my part and not a nightmare problem on his part requiring therapeutic intervention. That's good news! :)
Friday, August 16, 2013
Wednesday, August 14, 2013
Thanksgiving Point
I recently found out that there are $2 Tuesdays in August at Thanksgiving Point. I had no idea. But since I found this out on Monday night, I actually still remembered the next morning and thought it would be fun to go and take the kids, well at least the two that are left here (Shelly and Jason are at camp).
It was an adventure. We started off by waiting in a rather long line just to get in to the park. Emily had cut her toe the day before and shoes hurt her foot. In typical 4 year old fashion, she had refused to wear flip flops that would not put pressure on her toe, so she got to sit in the stroller with one shoe off.
Once we got in, we got to see a couple of cows and horses, and then the kids saw the pony ride. Emily decided she could wear the flip flops we brought for her, and then refused to go anywhere except in line for the pony ride. So we waited in a long line again... We were finally the next ones in line and Emily announces she needs to use the restroom. I convinced her to wait until after our turn. Annie was super excited to go on the pony ride, and then refused to get on the pony. She would pet it, and eventually held onto the saddle for the last 10 feet. That's about it.
Then Emily took 15 minutes in the bathroom, we saw a few goats (Annie was really funny when a goat would stick it's nose through the fence - she would pet it super quickly and then laugh and say 'I tickled it!'), we saw some sheep and chickens and decided there wasn't much else to see, it was hot and we had been there for over 2 hours and done not a whole lot with not much else to do, and it was time to go get something to eat and cold to drink, so we left.
Turns out we should have planned that better. On our way out we noticed that the line to get in was basically non-existent, and since it was after lunch by that time, we would not have been quite as hungry. Next time we'll know better...
It was an adventure. We started off by waiting in a rather long line just to get in to the park. Emily had cut her toe the day before and shoes hurt her foot. In typical 4 year old fashion, she had refused to wear flip flops that would not put pressure on her toe, so she got to sit in the stroller with one shoe off.
Once we got in, we got to see a couple of cows and horses, and then the kids saw the pony ride. Emily decided she could wear the flip flops we brought for her, and then refused to go anywhere except in line for the pony ride. So we waited in a long line again... We were finally the next ones in line and Emily announces she needs to use the restroom. I convinced her to wait until after our turn. Annie was super excited to go on the pony ride, and then refused to get on the pony. She would pet it, and eventually held onto the saddle for the last 10 feet. That's about it.
Then Emily took 15 minutes in the bathroom, we saw a few goats (Annie was really funny when a goat would stick it's nose through the fence - she would pet it super quickly and then laugh and say 'I tickled it!'), we saw some sheep and chickens and decided there wasn't much else to see, it was hot and we had been there for over 2 hours and done not a whole lot with not much else to do, and it was time to go get something to eat and cold to drink, so we left.
Turns out we should have planned that better. On our way out we noticed that the line to get in was basically non-existent, and since it was after lunch by that time, we would not have been quite as hungry. Next time we'll know better...
Camp Kesem
A couple of months ago my awesome aunt sent me some info about a camp that I had never heard of before. It's a camp for kids who have/had parents with cancer. It's a fun opportunity for the kids to have a great time in the company of other kids who have something in common with them. Camp Kesem is a nation wide thing, and it's basically run by volunteer college students. The one for BYU was long since full by the time we heard about it, but SUU was still looking for campers (and SUU's camp was going to be closer to our house than their campus, so distance wasn't an issue). After looking into it a bit (I didn't want this to give the kids issues they didn't have before going there...) and chatting with my aunt a few times about her thoughts and what she had heard and knew about it, we decided to sign the kids up! The kids have to be at least 6 years old, so only Shelly and Jason were able to go. Emily has had a bit of hard time with that...
Jason and Shelly have been anxiously looking forward to it all summer. I usually don't tell the kids about things too far in advance of big events - I dislike the ups and downs and drama that is kids waiting on pins and needles. This time though, I was worried about Jason and whether he would actually want to go to a camp, so I asked the kids before I even signed them up. This summer has been rather full of questions about when it is, where it is, how they're getting there, what stuff they will do there...
The day finally came! On Sunday we drove up to the camp to drop them off. Poor Shelly got carsick about 5 miles from camp, but even still, she was excited to go. Jason was also excited, until we got out to go register them. Apparently everyone there picks a camp name, any name they want. The people at registration were Chocolate Fury, Master Po, Bubbles, Starburst, Nala, Mufasa, Pumba, M&M - names like that. The idea is that they can be whoever they want to be at camp. None of the paperwork they sent me said anything about that, so I didn't know to warn them about it and give them time to come up with a name. This did not phase Shelly. She came up with a name in under a minute. She chose 'Pillow' to be her camp name. Jason had a harder time coming up with a name. Eventually we decided to do a tour of the camp, pick a bed and come back to name picking later. He spent the next most of an hour telling me he wanted to go home. The councilors there were very good with him. His cabin councilor was Master Po, and was super patient with him when he refused to pick a bed (we finally just picked one for him and moved on - I did tell him that once we were done checking in Shelly, if he still didn't want to stay I wouldn't make him). We then went to hang out on the grass with the kids' unit councilor Bubbles (I have no idea what her actual name is) - Shelly and Jason are in the same activities unit. She was also awesome with him, we played a game and then Bubbles took her kids that were already there (Pillow, Ells, and Pillow's un-named little brother) to the mess hall to see M&M and get a snack. While there Bubbles managed to soften Jason up a bit, ask some questions of the kids and we finally got Jason to the point where he came up with a name that he liked. He chose Chomper (the baby t-rex from the Land Before Time series).
Once Jason had a name he was back to his happy self again, and more than willing to stay at camp. We got him a name tag, kissed the kids goodbye and drove away, confident that the kids were in good hands.
We pick them up on Friday. I confess I'm a little bit curious how Jason will handle camp. He has a bit of a stubborn personality (as I'm sure anyone who's interacted with him for more than 5 minutes has noticed) and is rather strong willed. I think I read somewhere that they will have stuff set up for the kids to show off what they did during camp at pick-up time. I can already picture Shelly's spot full of fun crafts and adventures, and Jason' spot completely empty - with maybe a picture that someone else colored in for him with his name on it... He is not a craft person. I just hope he manages to have fun at least some of the time, and not ruin camp for some poor counselor who gets to sit with him when he's grumpy. I guess we'll find out on Friday...
Jason and Shelly have been anxiously looking forward to it all summer. I usually don't tell the kids about things too far in advance of big events - I dislike the ups and downs and drama that is kids waiting on pins and needles. This time though, I was worried about Jason and whether he would actually want to go to a camp, so I asked the kids before I even signed them up. This summer has been rather full of questions about when it is, where it is, how they're getting there, what stuff they will do there...
The day finally came! On Sunday we drove up to the camp to drop them off. Poor Shelly got carsick about 5 miles from camp, but even still, she was excited to go. Jason was also excited, until we got out to go register them. Apparently everyone there picks a camp name, any name they want. The people at registration were Chocolate Fury, Master Po, Bubbles, Starburst, Nala, Mufasa, Pumba, M&M - names like that. The idea is that they can be whoever they want to be at camp. None of the paperwork they sent me said anything about that, so I didn't know to warn them about it and give them time to come up with a name. This did not phase Shelly. She came up with a name in under a minute. She chose 'Pillow' to be her camp name. Jason had a harder time coming up with a name. Eventually we decided to do a tour of the camp, pick a bed and come back to name picking later. He spent the next most of an hour telling me he wanted to go home. The councilors there were very good with him. His cabin councilor was Master Po, and was super patient with him when he refused to pick a bed (we finally just picked one for him and moved on - I did tell him that once we were done checking in Shelly, if he still didn't want to stay I wouldn't make him). We then went to hang out on the grass with the kids' unit councilor Bubbles (I have no idea what her actual name is) - Shelly and Jason are in the same activities unit. She was also awesome with him, we played a game and then Bubbles took her kids that were already there (Pillow, Ells, and Pillow's un-named little brother) to the mess hall to see M&M and get a snack. While there Bubbles managed to soften Jason up a bit, ask some questions of the kids and we finally got Jason to the point where he came up with a name that he liked. He chose Chomper (the baby t-rex from the Land Before Time series).
Once Jason had a name he was back to his happy self again, and more than willing to stay at camp. We got him a name tag, kissed the kids goodbye and drove away, confident that the kids were in good hands.
We pick them up on Friday. I confess I'm a little bit curious how Jason will handle camp. He has a bit of a stubborn personality (as I'm sure anyone who's interacted with him for more than 5 minutes has noticed) and is rather strong willed. I think I read somewhere that they will have stuff set up for the kids to show off what they did during camp at pick-up time. I can already picture Shelly's spot full of fun crafts and adventures, and Jason' spot completely empty - with maybe a picture that someone else colored in for him with his name on it... He is not a craft person. I just hope he manages to have fun at least some of the time, and not ruin camp for some poor counselor who gets to sit with him when he's grumpy. I guess we'll find out on Friday...
Tuesday, August 13, 2013
It's Been a While...
I'm pretty sure that, for anyone who's followed this blog for longer a few months, it comes as no surprise that I am totally inconsistent in keeping it up. I know if you look back through the dates, it looks like I was pretty good (at least until about 1 year before Mark's tumor), but most of those were done over a weekend and I would do 3-6 months or so at a time and cheat on the dates.... This most recent stretch has been the most consistent I've been in years about it. Go me! Too bad I've failed miserably over the last few weeks...
So, now I'll update several weeks in one shot and hope this makes up for my slacking off.
Mark finished his last radiation treatment on Monday (the 22nd). That Thursday we were back in the office again with Mark complaining of things not tasting good. Turns out he managed to get thrush in his mouth. Apparently it's caused by a fungus (yeast) that most of us have on our bodies naturally anyways. Usually our immune system will help keep its abnormal growth in check, but since Mark's immune system is anything but normal at the moment, the fungus (yeast) got out of control and now he has thrush (and subsequently can't eat too much of anything solid without getting sick)
We have tried a couple of different things to get rid of it. He was on an oral pill for a while, but that didn't even seem to make a dent. After a few slightly frustrating phone calls to the doctors offices (yes, two of them), we were basically told they had no idea what to do about it since that didn't work. On a spur of the moment trip to a women's cancer survivor support group at the radiation office, the nurse there was surprised that who ever I talked to didn't have an answer, and she had me bring Mark back in to see the doctor the next day. Mark got a new prescription for an oral wash. He does not love that stuff (it is so nasty! - I made the mistake of trying just a tiny drop of it - just so I knew what it was I was pushing Mark to do when he didn't want to swish the meds in his mouth - yea, I'm not doing that again...) We thought it was making a difference, and it might be, but it's not enough. He still can't eat. We're coming up on 3 weeks soon.
On a positive note, he's lost a lot of the extra weight the steroids put on him! Somehow I'm sure that not eating for the last few weeks has helped with that...
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Over the last weekend in July we went on our Annual Gardner Campout. Technically, it was the first year, but we're pretending we've been doing this for as long as we can remember... :) We went to Flaming Gorge and had a blast. Mark still couldn't eat, my brother had a rather severe reaction to a bite (bite on his back - face and lips swollen... yea, it was pretty bad), Emily got lost hiking, everyone was filthy - the youngest of us got that the worst, it rained two of the nights, and we brought way too much food with us that we had to sort through to find what we were cooking for any given meal.
Actually, that makes it sound bad, but it really was fun to get to see everyone and most of us have camping gear that rarely gets used, so it was fun to break that out. We even got to see some old friends that we haven't seen in years. Greg and Paula heard of our camping trip and came and spent a night with us. It was fun to see them again and spend some time catching up and playing games. We all got to go to the Dinosaur museum in Vernal (where we randomly ran into friends that Mark knew growing up and that we had gone to church with for a while before we moved). We also got to go the water at Flaming Gorge and played there for a while, some swimming, some toe dipping, some skipping rocks. We made s'mores and wump-ums, roasted starbursts and sour gummy worms (not sure I recommend that last one - it was an experiment for my Dad, but he didn't seem impressed and apparently it was hard to get them to stay on the stick...), we got an astronomy lesson with a laser pointer (on the first night before the clouds started taking over the evenings) and the kids stayed up late and went on many hikes with aunts, uncles, dads, and grandparents (no, I did not go with them, I'm a horrible mother - and I'm many months pregnant - hiking is not currently my thing... I'm just glad that other people were willing to take that part over for me :) )
After all is said done, we're looking forward to next year!
So, now I'll update several weeks in one shot and hope this makes up for my slacking off.
Mark finished his last radiation treatment on Monday (the 22nd). That Thursday we were back in the office again with Mark complaining of things not tasting good. Turns out he managed to get thrush in his mouth. Apparently it's caused by a fungus (yeast) that most of us have on our bodies naturally anyways. Usually our immune system will help keep its abnormal growth in check, but since Mark's immune system is anything but normal at the moment, the fungus (yeast) got out of control and now he has thrush (and subsequently can't eat too much of anything solid without getting sick)
We have tried a couple of different things to get rid of it. He was on an oral pill for a while, but that didn't even seem to make a dent. After a few slightly frustrating phone calls to the doctors offices (yes, two of them), we were basically told they had no idea what to do about it since that didn't work. On a spur of the moment trip to a women's cancer survivor support group at the radiation office, the nurse there was surprised that who ever I talked to didn't have an answer, and she had me bring Mark back in to see the doctor the next day. Mark got a new prescription for an oral wash. He does not love that stuff (it is so nasty! - I made the mistake of trying just a tiny drop of it - just so I knew what it was I was pushing Mark to do when he didn't want to swish the meds in his mouth - yea, I'm not doing that again...) We thought it was making a difference, and it might be, but it's not enough. He still can't eat. We're coming up on 3 weeks soon.
On a positive note, he's lost a lot of the extra weight the steroids put on him! Somehow I'm sure that not eating for the last few weeks has helped with that...
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Over the last weekend in July we went on our Annual Gardner Campout. Technically, it was the first year, but we're pretending we've been doing this for as long as we can remember... :) We went to Flaming Gorge and had a blast. Mark still couldn't eat, my brother had a rather severe reaction to a bite (bite on his back - face and lips swollen... yea, it was pretty bad), Emily got lost hiking, everyone was filthy - the youngest of us got that the worst, it rained two of the nights, and we brought way too much food with us that we had to sort through to find what we were cooking for any given meal.
Actually, that makes it sound bad, but it really was fun to get to see everyone and most of us have camping gear that rarely gets used, so it was fun to break that out. We even got to see some old friends that we haven't seen in years. Greg and Paula heard of our camping trip and came and spent a night with us. It was fun to see them again and spend some time catching up and playing games. We all got to go to the Dinosaur museum in Vernal (where we randomly ran into friends that Mark knew growing up and that we had gone to church with for a while before we moved). We also got to go the water at Flaming Gorge and played there for a while, some swimming, some toe dipping, some skipping rocks. We made s'mores and wump-ums, roasted starbursts and sour gummy worms (not sure I recommend that last one - it was an experiment for my Dad, but he didn't seem impressed and apparently it was hard to get them to stay on the stick...), we got an astronomy lesson with a laser pointer (on the first night before the clouds started taking over the evenings) and the kids stayed up late and went on many hikes with aunts, uncles, dads, and grandparents (no, I did not go with them, I'm a horrible mother - and I'm many months pregnant - hiking is not currently my thing... I'm just glad that other people were willing to take that part over for me :) )
After all is said done, we're looking forward to next year!
Tuesday, July 23, 2013
What Now?
So, yesterday I had my last radiation treatment. I’m all done with radiation! We’re still trying to figure out exactly what that means beyond having our weekday mornings available again. Ironically, that means more time to blog, but less to blog about.
-Mark
-Mark
Monday, July 22, 2013
Last Day!!
Today was the last day of radiation!!!
We went out to celebrate. First Mark had a fasting blood draw. After that Mark and I went out to breakfast. Then we met his family at the office for his last radiation treatment! My mom and sister had come with our kids on Friday, but Mark's parents were out of town, so they came today. It was pretty much the last chance we had to let people see what was going on. I usually wait in the lobby and work on a puzzle or read a book or watch TV, as do pretty much all of the guests of the patients while they're in treatment, so they're not used to having visitors back in the radiation area. The nurses were very patient with us invading their work area.
Then we came home and promptly took a nap! :)
After feeling a little more refreshed, we continued to tackle our shed. When we moved in we had a ton of boxes that had just moved with us from place to place and had never really been gone through. While moving might sound like a great time to go through stuff, it's actually rather full of lots of other stress, so we just ignored the already packed boxes one more time. Our shed was so full you could barely open the door. There was stuff in there from who knows how long ago, and stuff that really did not need to be saved and not all of it was well organized at all. There was also lots of stuff that we had shoved in there intending to go through it later - that hadn't happened yet.
So, while my mom was in town, we commissioned her assistance to help go through it. She has some strange un-earthly amount of energy. I have no idea where she gets it from, but I occasionally find it useful to take advantage of.
The shed has been a project that's been going on for a week or two now, and we are finally almost to the end. Going through the kids' clothes took several days. Mom and Katie were troopers and went through most of the new clothes for me (I had already gone through, organized and bagged TONS of clothes a year of so ago, but we had acquired several bags/boxes of new clothes since then that needed to be sorted). They also boxed everything up (not in bags anymore!) and put it back in the shed in an organized manner. No more bags of clothes everywhere, ripping every time we move it to see what's behind it to find the right size! Exciting!
We have made 3 trips to donate stuff, have quite a large pile of stuff for the trash that might take more than one week to get rid of, emptied and broken down more boxes than will fit in our recycle bin, emptied more boxes that still need to be broken down, and we now have quite a bit of empty shelf space in the shed! There is still some stuff in the house that needs to be organized and re-packed and put back in the shed, but as of tonight, all of the boxes have been gone through!
So, anyways, we had started to make a bit more progress on the rest of the stuff in the shed early this afternoon, but then got a call from some old friends that required us to stop what we were doing and go visit them! Who passes up a chance to visit old friends? Not us! Mark stayed with the kids while Mom, Katie and I went to met them at a nearby restaurant and chatted all afternoon and finally decided we needed to leave when we noticed we were about to be late for our dinner plans.
Last night, as we were realizing that we needed to do something to celebrate Mark being done with radiation, we could not come up with anything to do. It did not help that it was late at night and everyone was exhausted. Finally, in our exhausted, not wanting to put much energy into anything, barely thinking state, we decided we could go out to dinner! (yeah, super original, I know - but we were tired, and let's be honest - letting someone else cook and clean up is always on the menu!) We were on a bit of a time crunch with various schedules that needed to be considered, so we pulled ourselves away from a fun time talking and catching up at one restaurant and moved onto the next one for the day.
And that's about it. I can tell that it's late and my brain is not functioning at full capacity. I'm pretty sure I told that story backwards, starting with the middle and working my way to the beginning, with random trips to the end on the way... I hope you still get the idea:
Mark is done with radiation!! :D
Because he's technically in a study (he's the control group, so he's just getting standard treatment, but he's part of the study anyways) he will have an MRI in 4 weeks. The doctors are fairly certain that this MRI will not be overly helpful. If it were up to them, they'd wait and do a 3 month MRI. His brain should still have swelling from radiation after only 4 weeks so they likely won't be able to determine much. The good news is that we already know what the doctors will say. The test will come back inconclusive due to swelling. :)
The study wants an MRI every 2 months for the first year and every 4 months for the second year and every 6 months after that, so we have our marching orders for the next while. That will be the plan unless things change with his tumor.
Mark has been doing super well! Most people who see him at church and other places are amazed at how well he's doing. Aside from being a tiny bit slower physically (and I really mean a tiny bit) and having a rather large scar on his head, it would be hard to guess that he had brain surgery less than 3 months ago. He has been working one shift a week at his old job (just one shift, it's not what he used to work, but it's good for him to be working, even if it's just a little bit right now) and he is back to school and getting going with an (unpaid...) internship again.
He is also picking up a lot of the slack that I can't do anymore. (Gotta love my pregnancies! Just a few more months until I can fully function again. Yea!! Too bad it will get worse before it gets better. October sounds so far away still...) Mark is amazing with the kids, does more cooking than I do, does bed time more often than me, and willingly does both big and small errands for me, just so I don't have to - and I think because it's helping get his body used to doing stuff again and using muscles that have been dormant for a while.
Mark even ran for the first time since his surgery! We were at Cabella's looking at tents for my parents for our upcoming camping trip. While waiting outside for all the kids to finish with (annoyingly uncoordinated!) bathroom trips, he decided to race the kids to the end of the store. Turns out he can't outrun them yet... But it was so fun to see him running again! He only made one trip up and back willingly. I came out of a second (or third) bathroom trip with some child at the tail end of his run, and was so sad that I missed it! I wanted to see this new skill, so I convinced him that I needed a picture for memories' sake. He did it again just for me, but that was as much as his body could handle for one adventure.
And now, I am going to see if sleep will help this headache I've been fighting all day. Good night! I am very much looking forward to sleeping in tomorrow with no treatment to go to in the morning!
We went out to celebrate. First Mark had a fasting blood draw. After that Mark and I went out to breakfast. Then we met his family at the office for his last radiation treatment! My mom and sister had come with our kids on Friday, but Mark's parents were out of town, so they came today. It was pretty much the last chance we had to let people see what was going on. I usually wait in the lobby and work on a puzzle or read a book or watch TV, as do pretty much all of the guests of the patients while they're in treatment, so they're not used to having visitors back in the radiation area. The nurses were very patient with us invading their work area.
Then we came home and promptly took a nap! :)
After feeling a little more refreshed, we continued to tackle our shed. When we moved in we had a ton of boxes that had just moved with us from place to place and had never really been gone through. While moving might sound like a great time to go through stuff, it's actually rather full of lots of other stress, so we just ignored the already packed boxes one more time. Our shed was so full you could barely open the door. There was stuff in there from who knows how long ago, and stuff that really did not need to be saved and not all of it was well organized at all. There was also lots of stuff that we had shoved in there intending to go through it later - that hadn't happened yet.
So, while my mom was in town, we commissioned her assistance to help go through it. She has some strange un-earthly amount of energy. I have no idea where she gets it from, but I occasionally find it useful to take advantage of.
The shed has been a project that's been going on for a week or two now, and we are finally almost to the end. Going through the kids' clothes took several days. Mom and Katie were troopers and went through most of the new clothes for me (I had already gone through, organized and bagged TONS of clothes a year of so ago, but we had acquired several bags/boxes of new clothes since then that needed to be sorted). They also boxed everything up (not in bags anymore!) and put it back in the shed in an organized manner. No more bags of clothes everywhere, ripping every time we move it to see what's behind it to find the right size! Exciting!
We have made 3 trips to donate stuff, have quite a large pile of stuff for the trash that might take more than one week to get rid of, emptied and broken down more boxes than will fit in our recycle bin, emptied more boxes that still need to be broken down, and we now have quite a bit of empty shelf space in the shed! There is still some stuff in the house that needs to be organized and re-packed and put back in the shed, but as of tonight, all of the boxes have been gone through!
So, anyways, we had started to make a bit more progress on the rest of the stuff in the shed early this afternoon, but then got a call from some old friends that required us to stop what we were doing and go visit them! Who passes up a chance to visit old friends? Not us! Mark stayed with the kids while Mom, Katie and I went to met them at a nearby restaurant and chatted all afternoon and finally decided we needed to leave when we noticed we were about to be late for our dinner plans.
Last night, as we were realizing that we needed to do something to celebrate Mark being done with radiation, we could not come up with anything to do. It did not help that it was late at night and everyone was exhausted. Finally, in our exhausted, not wanting to put much energy into anything, barely thinking state, we decided we could go out to dinner! (yeah, super original, I know - but we were tired, and let's be honest - letting someone else cook and clean up is always on the menu!) We were on a bit of a time crunch with various schedules that needed to be considered, so we pulled ourselves away from a fun time talking and catching up at one restaurant and moved onto the next one for the day.
And that's about it. I can tell that it's late and my brain is not functioning at full capacity. I'm pretty sure I told that story backwards, starting with the middle and working my way to the beginning, with random trips to the end on the way... I hope you still get the idea:
Mark is done with radiation!! :D
Because he's technically in a study (he's the control group, so he's just getting standard treatment, but he's part of the study anyways) he will have an MRI in 4 weeks. The doctors are fairly certain that this MRI will not be overly helpful. If it were up to them, they'd wait and do a 3 month MRI. His brain should still have swelling from radiation after only 4 weeks so they likely won't be able to determine much. The good news is that we already know what the doctors will say. The test will come back inconclusive due to swelling. :)
The study wants an MRI every 2 months for the first year and every 4 months for the second year and every 6 months after that, so we have our marching orders for the next while. That will be the plan unless things change with his tumor.
Mark has been doing super well! Most people who see him at church and other places are amazed at how well he's doing. Aside from being a tiny bit slower physically (and I really mean a tiny bit) and having a rather large scar on his head, it would be hard to guess that he had brain surgery less than 3 months ago. He has been working one shift a week at his old job (just one shift, it's not what he used to work, but it's good for him to be working, even if it's just a little bit right now) and he is back to school and getting going with an (unpaid...) internship again.
He is also picking up a lot of the slack that I can't do anymore. (Gotta love my pregnancies! Just a few more months until I can fully function again. Yea!! Too bad it will get worse before it gets better. October sounds so far away still...) Mark is amazing with the kids, does more cooking than I do, does bed time more often than me, and willingly does both big and small errands for me, just so I don't have to - and I think because it's helping get his body used to doing stuff again and using muscles that have been dormant for a while.
Mark even ran for the first time since his surgery! We were at Cabella's looking at tents for my parents for our upcoming camping trip. While waiting outside for all the kids to finish with (annoyingly uncoordinated!) bathroom trips, he decided to race the kids to the end of the store. Turns out he can't outrun them yet... But it was so fun to see him running again! He only made one trip up and back willingly. I came out of a second (or third) bathroom trip with some child at the tail end of his run, and was so sad that I missed it! I wanted to see this new skill, so I convinced him that I needed a picture for memories' sake. He did it again just for me, but that was as much as his body could handle for one adventure.
And now, I am going to see if sleep will help this headache I've been fighting all day. Good night! I am very much looking forward to sleeping in tomorrow with no treatment to go to in the morning!
Wednesday, July 10, 2013
22 Down - 8 To Go
That's right folks, we're down to single digits! We had our weekly round of Wednesday Doctors Appointments today, and they are all (well ok, both) impressed at how well Mark is doing. His blood work levels are all normal, his energy is great - which is especially weird considering they're attacking his brain (the radiologist was shocked and even mentioned that Mark is very unusual in that regard), and he has pretty much no symptoms from pretty much anything (except for the belly from the steroids and the new hair style).
On Friday they switch the specifics of his radiation and start to go after a smaller part of his brain, so the doctor said the worst of it will be behind him them. We are overly grateful that the 'worst of it' has been so easy. We made a friend who has radiation just before Mark and there were days when she would come in just looking nauseous and unwell (it was really good to see her looking much better a few days later!). We have heard from many how bad this could have been and overheard people in the office talking about horror stories. Truly, we have been blessed!
In fact, Mark is doing so well that the radiologist it having him stop his steroids much sooner than he normally would! He gets to go down to one pill every other day for a week and then be done. Most people would be on them for a while still at this point.
We have taken Mark off of some of the pills that he had been taking at first. He never really needed the nausea pills, so we stopped giving him those, as well as his sleeping pill we were doing for a while to help counter the steroids. When he got cut down to one steroid pill a day last week, he even managed to drop one of his pill cases! (We got him separate pill cases for morning, afternoon, evening and bed time just so we could be flexible - he's down to just morning and evening now). Pretty soon he'll get to drop all of his daily pills and just be on his antibiotic three times a week. Yea for being almost done!!
We had a good 4th of July. My parents flew into town and my sister and her friend, and my brother and his fiance, as well as Mark's family joined us for most of the day. We got up early to go see the hot air balloons, only to find out they were canceled due to weather. After munching on some donuts we had brought for the occasion, we came home and took a nap, ate lunch and then headed out to a colonial festival in town to wander through some period shops, often showing off their craft right there to show how people used to make barrels, clothing, metal works, bread/food and do things like games, chores, school, etc. We came home from that hungry so we had dinner and then did our July 4th Declaration. After that we went to a nearby field to watch fireworks and to let the kids enjoy running around with other excited kids doing fun and crazy stuff. We gave up about 10 minutes before the fireworks actually started and walked home. Once we got the baby (Annie) in bed life was much better and we watched the fireworks show from our front lawn with the three oldest kids.
Mark was able to walk all over the place with us. Almost all of the walking was on grass (which is more of a challenge for him to balance on just because it's uneven), and there was A LOT of walking. He was ready for bed by the end of the night, but he showed no other signs of being tired.
My mom bought all of her family in our area season passes to the nearby water park (the pass also has several other activities on it, which will be fun, especially when the water park closes for the winter). We have gone there a few times. Mark uses the Lazy River to walk laps. He has even graduated from just walking to doing more challenging things, such as walking backwards, crouching while walking, walking sideways both upright and crouched, and getting some hand/arm workouts as well. We also go into the wave pool and have him practice balancing. We have found that if he goes out too far and can't reach the bottom his legs/feet start cramping, and then I get to see how well I can push him back to shallower water before we both drown. That's always fun...
My pregnancy is going as well as can be expected at this point. Thankfully all of this brain tumor stuff started just a few short weeks after the worst of my morning sickness was over, and it seems as if the majority of the radiation and treatment and side effects (if there were any to start with) will be done before the worst of my third trimester starts (you know, where I get so weak I can't move my arms or hold my head up and I have to lie down for 20-60 minutes before I can move again - that stuff). I am grateful that this has been timed just right! The weakness is beginning to creep it's way into my life already, but it's been minimal so far - only happening a few times a week - so that's good. And Mark is functional enough that he can help cover for me when that happens. (Not to mention that my sister is living with us to help out, so neither one of us is over burdened with too much, and my Mom is in town for a few weeks, so we are really well taken care of at the moment!) I'm just excited that it looks like life will be mostly ok and normal for us once everyone moves on to their own lives again.
I'm hopeful that with Mark getting off the steroids he will be able to lose some of the weight soon, which will help him be able to be more physical and get moving again and back into shape. He still hasn't tried running yet, and he's a bit gun shy about going down water slides and things like that in case he knocks his head (this is a good thing - but eventually he should be able to gain some confidence in his ability to go down a slide without falling). Bending is still not easy for him, but that's to be expected with the belly he's sporting :)
Overall, life is still good!
On Friday they switch the specifics of his radiation and start to go after a smaller part of his brain, so the doctor said the worst of it will be behind him them. We are overly grateful that the 'worst of it' has been so easy. We made a friend who has radiation just before Mark and there were days when she would come in just looking nauseous and unwell (it was really good to see her looking much better a few days later!). We have heard from many how bad this could have been and overheard people in the office talking about horror stories. Truly, we have been blessed!
In fact, Mark is doing so well that the radiologist it having him stop his steroids much sooner than he normally would! He gets to go down to one pill every other day for a week and then be done. Most people would be on them for a while still at this point.
We have taken Mark off of some of the pills that he had been taking at first. He never really needed the nausea pills, so we stopped giving him those, as well as his sleeping pill we were doing for a while to help counter the steroids. When he got cut down to one steroid pill a day last week, he even managed to drop one of his pill cases! (We got him separate pill cases for morning, afternoon, evening and bed time just so we could be flexible - he's down to just morning and evening now). Pretty soon he'll get to drop all of his daily pills and just be on his antibiotic three times a week. Yea for being almost done!!
We had a good 4th of July. My parents flew into town and my sister and her friend, and my brother and his fiance, as well as Mark's family joined us for most of the day. We got up early to go see the hot air balloons, only to find out they were canceled due to weather. After munching on some donuts we had brought for the occasion, we came home and took a nap, ate lunch and then headed out to a colonial festival in town to wander through some period shops, often showing off their craft right there to show how people used to make barrels, clothing, metal works, bread/food and do things like games, chores, school, etc. We came home from that hungry so we had dinner and then did our July 4th Declaration. After that we went to a nearby field to watch fireworks and to let the kids enjoy running around with other excited kids doing fun and crazy stuff. We gave up about 10 minutes before the fireworks actually started and walked home. Once we got the baby (Annie) in bed life was much better and we watched the fireworks show from our front lawn with the three oldest kids.
Mark was able to walk all over the place with us. Almost all of the walking was on grass (which is more of a challenge for him to balance on just because it's uneven), and there was A LOT of walking. He was ready for bed by the end of the night, but he showed no other signs of being tired.
My mom bought all of her family in our area season passes to the nearby water park (the pass also has several other activities on it, which will be fun, especially when the water park closes for the winter). We have gone there a few times. Mark uses the Lazy River to walk laps. He has even graduated from just walking to doing more challenging things, such as walking backwards, crouching while walking, walking sideways both upright and crouched, and getting some hand/arm workouts as well. We also go into the wave pool and have him practice balancing. We have found that if he goes out too far and can't reach the bottom his legs/feet start cramping, and then I get to see how well I can push him back to shallower water before we both drown. That's always fun...
My pregnancy is going as well as can be expected at this point. Thankfully all of this brain tumor stuff started just a few short weeks after the worst of my morning sickness was over, and it seems as if the majority of the radiation and treatment and side effects (if there were any to start with) will be done before the worst of my third trimester starts (you know, where I get so weak I can't move my arms or hold my head up and I have to lie down for 20-60 minutes before I can move again - that stuff). I am grateful that this has been timed just right! The weakness is beginning to creep it's way into my life already, but it's been minimal so far - only happening a few times a week - so that's good. And Mark is functional enough that he can help cover for me when that happens. (Not to mention that my sister is living with us to help out, so neither one of us is over burdened with too much, and my Mom is in town for a few weeks, so we are really well taken care of at the moment!) I'm just excited that it looks like life will be mostly ok and normal for us once everyone moves on to their own lives again.
I'm hopeful that with Mark getting off the steroids he will be able to lose some of the weight soon, which will help him be able to be more physical and get moving again and back into shape. He still hasn't tried running yet, and he's a bit gun shy about going down water slides and things like that in case he knocks his head (this is a good thing - but eventually he should be able to gain some confidence in his ability to go down a slide without falling). Bending is still not easy for him, but that's to be expected with the belly he's sporting :)
Overall, life is still good!
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