On Tuesday, February 6, Anna had a scheduled MRI. Although we still wish that the radiologist's report would be NED ("no evidence of disease"), we are grateful that her scans remain very stable.
Since the report time that morning was 6:30 a.m., the rest of the family had minimal disruptions to their schedules. Matt took Kate and Ethan in to school; Ethan went home with a neighborhood preschool buddy for lunch and playtime; Anna and I were home in plenty of time to rest and recharge before leaving to pick Kate up from school at the end of the day.
Monday afternoon was the follow-up neuro-oncology appointment. As with many aspects of Anna's life, this appointment had plenty of ups and downs; the emotional roller coaster continues.
First the good news ... Anna's oncologist has cleared her to go an entire year between subsequent scans. Actually, that's great news!
Not only has this milestone come about a year early and we will no longer be plagued by the MRI appointment schedule in August anymore, but Anna will only need the scans once a year for the next several years. Plus, the medical staff was willing to coordinate the timing of this costly medical procedure so that we can meet our primary insurance medical deductible early in the year (which is partly covered through Anna's secondary Medicaid coverage). It's taken us a few years and some mis-steps to figure out how to work within the system, but we are finally getting comfortable with the various aspects of insurance coverage.
More good news ... the social services staff we see at the neuro-oncology appointments only stops in to say hi. They are pleased with the ongoing collaboration we have with all of the members of Anna's teams (school, therapy, etc.).
Roller coaster #1 ... Anna is scheduled to have another round of neuropsychological testing in early April so see how her unique brain functions. We had our initial interview in the midst of our several hour appointment and came home with plenty of additional paperwork to be filled out. The kinds of questions asked at these times not only remind me of all of the progress Anna has made in the last 3 and a half years, but also of how far she lies outside of the "typically developing" category.
Roller coaster #2 ... We made a deal with Anna's ophthalmologist back in December. Instead of setting up another check-in appointment with him during January or February, we agreed to send him a page while we were all at the hospital at the same time. This way he could just check to see if the cold Anna was experiencing had cleared up and allowed her vision to improve (and we could avoid waiting in his office for upwards of two hours like we did in December).
The cold had cleared up long ago, but her vision is not any better. In fact, it's worse. Her left eye has started drifting outwards again, her styes have returned, and her vision is bad, especially in the left eye. Because of the extreme poor vision in her left eye, Anna's brain is starting to ignore the signals sent from that eye, which is why the eye is drifting.
After talking things through with the doctor, the current theory is that Anna's eyes don't make enough tears. One possible side effect of the type of radiation Anna had is reduced salivary gland production and reduced tear production. We already knew that Anna's salivary glands were affected and now it appears that her tear glands were, too.
I learned yesterday that the surface of our eyes is very sensitive to moisture levels. For most of us, our eyes are continually bathed in tears to lubricate the surface and allow for optimal vision. For some people, there are not enough tears. If it is severe enough, the surface of the eye becomes "scratched" or "chapped" and vision deteriorates. Right now it's almost as if Anna is looking through scratched up glasses, all the time.
Sometimes a person can add artificial tears (generic saline solution) in the form of eye drops to help. If Anna were to try that, she'd need to use the drops every hour or so all the time. Not very practical in our situation.
Yesterday I also learned that doctors can put an artificial plug in the lower tear drain (that little hole in the lower eyelid nearest the nose). If and when that happens, the slow trickle of Anna's tears will be able to fill up her eyes and keep them naturally moisturized. Any excess tears will drain through the upper eyelid.
So we're waiting for a call to schedule that procedure. In the meantime, we will pick up some eyedrops to see if that helps. At least it shouldn't hurt.
Once this problem is reversed, we will see how Anna's eyes are doing. Theoretically, her vision should improve and the styes should go away. Maybe, just maybe, her brain will remember that she has two eyes and will begin to recognize the signals again from her left eye. Maybe, just maybe, when her brain recognizes the signals, it will then also remember to use the muscles controlling her left eye.
Then again, maybe not. And maybe a long-term side effect of Anna's treatments is that she loses vision in her left eye.
Like I said at the start of this post, medical appointments with Anna can be an emotional roller coaster.
Tuesday, February 13, 2018
Monday, February 5, 2018
Welcome to February
February 3rd has come and gone again in our house with few noteworthy moments. Most of the family doesn't seem to notice this particular date on the calendar, but it will probably be a long time before the day passes without my mental attention. Maybe after next year, we will remember it more as Anna's survival day instead of Anna's diagnosis day. We'll see.
The moments and memories of 2014 come to the surface relatively rarely nowadays, but the mental shrapnel of the traumatic times can still catch me off guard every once in awhile.
A particular song over the loudspeaker at a store.
A phrase or mannerism of Ethan's that is reminiscent of Anna at his age.
A dress similar to one Anna wore prior to cancer that I notice another child wearing.
A family with kids roughly the same ages of ours when Anna was diagnosed. (How young they all must have been, especially Ethan!)
These are the little things that encourage certain memories to float to the surface of my mind when I least expect it. Then they drift away as easily as they came.
In our home, we still have open communication about our experiences and memories. I believe that we have dealt with, and continue to deal with, the events in our lives in a healthy manner. Part of that means pausing and acknowledging when these memories arise. So we will continue to talk and remember it seems appropriate, but will work hard not to dwell in the past.
Enough of that.
We made it through one of the few weeks with five school days in the past couple of months. Everyone survived relatively well, with Matt biking to work two days and having two evening phone meetings and one early morning one. By Thursday evening it was nice to finally be able to sit down and eat dinner together as a whole family.
In looking ahead to the next couple of weeks, I realized that if the kids wanted to make valentines for their classmates this year, we would have to do it before the weekend was over. Everyone was amenable to making melted crayon hearts so we spent a good portion of Thursday evening, Friday evening, and parts of Saturday, peeling crayons and addressing valentines. But now they are done! And the kids enjoyed themselves! Hip, hip, hooray!
The girls had some extra work this weekend, too, with Anna slotted to be special person in her classroom this week and Kate needing to make a box for collecting her valentines. Kate is very proud of her box, designed and executed almost exclusively by Kate.
Knowing that snow was predicted for Saturday night, we made sure everyone got (most of) their work done on Saturday. That way Matt was able to take Kate and Ethan sledding on Sunday afternoon before the SuperBowl without any issues. Based on the pictures, videos, and stories, I think the three of them had a great time.
We're anticipating another round of snow tonight, but still cold, cold temperatures. Hopefully, it warms up just a little bit so Ethan and I can get in a few rounds of sledding before the snow melts again!
The moments and memories of 2014 come to the surface relatively rarely nowadays, but the mental shrapnel of the traumatic times can still catch me off guard every once in awhile.
A particular song over the loudspeaker at a store.
A phrase or mannerism of Ethan's that is reminiscent of Anna at his age.
A dress similar to one Anna wore prior to cancer that I notice another child wearing.
A family with kids roughly the same ages of ours when Anna was diagnosed. (How young they all must have been, especially Ethan!)
These are the little things that encourage certain memories to float to the surface of my mind when I least expect it. Then they drift away as easily as they came.
In our home, we still have open communication about our experiences and memories. I believe that we have dealt with, and continue to deal with, the events in our lives in a healthy manner. Part of that means pausing and acknowledging when these memories arise. So we will continue to talk and remember it seems appropriate, but will work hard not to dwell in the past.
Enough of that.
We made it through one of the few weeks with five school days in the past couple of months. Everyone survived relatively well, with Matt biking to work two days and having two evening phone meetings and one early morning one. By Thursday evening it was nice to finally be able to sit down and eat dinner together as a whole family.
In looking ahead to the next couple of weeks, I realized that if the kids wanted to make valentines for their classmates this year, we would have to do it before the weekend was over. Everyone was amenable to making melted crayon hearts so we spent a good portion of Thursday evening, Friday evening, and parts of Saturday, peeling crayons and addressing valentines. But now they are done! And the kids enjoyed themselves! Hip, hip, hooray!
The girls had some extra work this weekend, too, with Anna slotted to be special person in her classroom this week and Kate needing to make a box for collecting her valentines. Kate is very proud of her box, designed and executed almost exclusively by Kate.
Knowing that snow was predicted for Saturday night, we made sure everyone got (most of) their work done on Saturday. That way Matt was able to take Kate and Ethan sledding on Sunday afternoon before the SuperBowl without any issues. Based on the pictures, videos, and stories, I think the three of them had a great time.
We're anticipating another round of snow tonight, but still cold, cold temperatures. Hopefully, it warms up just a little bit so Ethan and I can get in a few rounds of sledding before the snow melts again!
Monday, January 29, 2018
Plugging Along (revised)
We're still working through the season of winter. Our weather has been back and forth, with frigid cold for awhile to near-record warmth to snow to rain and everything in between. The kids haven't had much opportunity to play outside recently and it shows. Not only are we sporting our pale winter skin, but certain members of the family have bundles of energy by the end of the day.
We try and get them outside when we can, but are again extraordinarily thankful that we have an awesome basement set-up to get out some of that winter energy.
Last week was a four day week (again!) due to the end of the quarter. We were thankful (again) for the extra weekend day since all of the kids were dealing with mild colds throughout the week, and we had an extra busy day on Thursday.
Thursday, Ethan and I picked Anna up a little earlier than normal so she could still have her full therapy appointments before the three of us headed to our family doctor for Ethan's 5 year check-up and Anna's pre-op physical.
I'm not sure that I've mentioned how much we have grown to love Anna's Thursday afternoon therapy crew this year. Originally, we had hoped for a Monday morning therapy time slot since Anna is much fresher and energized at the start of the week. But, schedules didn't work out that way and we opted for Thursday afternoons.
Anna is definitely more fatigued by that point of the week, but the community of physical therapists and other patients bring much joy and laughter to the otherwise challenging time slot.
More often than not, the adults outnumber the kids on those days. There are usually three or four PTs, sometimes with a couple of OTs thrown into the mix. The adults are also getting a little tired, and therefore goofy, by the end of the work week. Anna's therapy buddy this school year has been a 6th grade girl who also has motor challenges (although not the same as Anna's), but who is cognitively on par with her peers.
After the therapists had planned different games and activities for the girls do to together in the fall, they took things up a notch this past week. First, the kids did a relay race around the upstairs of the clinic, having each of their laps timed. Not only did Anna and her friend participate, but Ethan joined in the fun, too. He worked about as hard as the girls.
After the upstairs challenge, the therapists informed the kids they were going to do a therapy bootcamp in the downstairs gym. The three kids were to work together to flip one of the therapy tools across the room, with more challenges added as they met different goals. Fun times.
After this rousing (and tiring) afternoon, we ended up at the doctor's office for check-ups. Although Ethan was in the midst of a cold, and had actually woken up in the middle of the night on Wednesday night complaining about severe ear pain, he didn't have an ear infection. This boy's streak of zero antibiotics continues. (update - Ethan came home from preschool on Monday with a terrible earache. God was on our side that afternoon and we were able to get Ethan his first dose of antibiotics by 3:30 without an additional trip to the doctor's office. Although Monday afternoon and evening were really rough for this kid, he was feeling much, much better on Tuesday morning.)
Here's Ethan's stats: height - 43" (50%), weight - 47.5 lbs. (85%). Ethan's process of stretching out is taking longer than his sisters did. But at least his weight percentile continues to creep slowly closer to his height percentile :)
Ethan also received his last round of vaccinations. Hooray! We have finally graduated from the phase of our life during which the kids need periodic shots. However, between Ethan's cold and the immunizations, he slept HARD on Thursday, Friday, and Saturday nights ... averaging about 13 hours a night! But now his body has the tools it needs to fight off many nasty illnesses.
After the business of the afternoon, we met up with Matt and Kate at a local church on Thursday evening since the 4H club was sponsoring one of the church's weekly community meals. On Wednesday night, Kate made some brownies for the meal, with me only in the kitchen to supervise. Way to go, Kate! Not only has she found her confidence with this kind of baking, but she can read my cursive writing on the recipes :)
Friday was our day off. The kids lounged in the morning and Kate had a friend over in the afternoon. Earlier in the month, I knew it may end up being along weekend if we didn't do something out of the house, so the kids and I went to a library program on Saturday afternoon during which we dissected owl pellets. I wish I would have brought a camera!
Kate really enjoyed herself, and at least Ethan and Anna were able to experience something new.
Sunday afternoon Kate and I participated in an open sewing afternoon at church. Both girls had tried this with me last summer, but we learned it was too challenging for Anna at this point. Kate, on the other hand, worked very hard with me to (almost) finish the top of a baby quilt that will get donated to our church's quilting ministry.
It took us a long time, and we had to rip out several seams ... but ... we stuck with it and learned a lot. It was a good experience for the two of us.
And I'll finish up this post with a fun picture of two of the boys in our home. Ethan loves his buddy.
We try and get them outside when we can, but are again extraordinarily thankful that we have an awesome basement set-up to get out some of that winter energy.
Last week was a four day week (again!) due to the end of the quarter. We were thankful (again) for the extra weekend day since all of the kids were dealing with mild colds throughout the week, and we had an extra busy day on Thursday.
Thursday, Ethan and I picked Anna up a little earlier than normal so she could still have her full therapy appointments before the three of us headed to our family doctor for Ethan's 5 year check-up and Anna's pre-op physical.
I'm not sure that I've mentioned how much we have grown to love Anna's Thursday afternoon therapy crew this year. Originally, we had hoped for a Monday morning therapy time slot since Anna is much fresher and energized at the start of the week. But, schedules didn't work out that way and we opted for Thursday afternoons.
Anna is definitely more fatigued by that point of the week, but the community of physical therapists and other patients bring much joy and laughter to the otherwise challenging time slot.
More often than not, the adults outnumber the kids on those days. There are usually three or four PTs, sometimes with a couple of OTs thrown into the mix. The adults are also getting a little tired, and therefore goofy, by the end of the work week. Anna's therapy buddy this school year has been a 6th grade girl who also has motor challenges (although not the same as Anna's), but who is cognitively on par with her peers.
After the therapists had planned different games and activities for the girls do to together in the fall, they took things up a notch this past week. First, the kids did a relay race around the upstairs of the clinic, having each of their laps timed. Not only did Anna and her friend participate, but Ethan joined in the fun, too. He worked about as hard as the girls.
After the upstairs challenge, the therapists informed the kids they were going to do a therapy bootcamp in the downstairs gym. The three kids were to work together to flip one of the therapy tools across the room, with more challenges added as they met different goals. Fun times.
After this rousing (and tiring) afternoon, we ended up at the doctor's office for check-ups. Although Ethan was in the midst of a cold, and had actually woken up in the middle of the night on Wednesday night complaining about severe ear pain, he didn't have an ear infection. This boy's streak of zero antibiotics continues. (update - Ethan came home from preschool on Monday with a terrible earache. God was on our side that afternoon and we were able to get Ethan his first dose of antibiotics by 3:30 without an additional trip to the doctor's office. Although Monday afternoon and evening were really rough for this kid, he was feeling much, much better on Tuesday morning.)
Here's Ethan's stats: height - 43" (50%), weight - 47.5 lbs. (85%). Ethan's process of stretching out is taking longer than his sisters did. But at least his weight percentile continues to creep slowly closer to his height percentile :)
Ethan also received his last round of vaccinations. Hooray! We have finally graduated from the phase of our life during which the kids need periodic shots. However, between Ethan's cold and the immunizations, he slept HARD on Thursday, Friday, and Saturday nights ... averaging about 13 hours a night! But now his body has the tools it needs to fight off many nasty illnesses.
After the business of the afternoon, we met up with Matt and Kate at a local church on Thursday evening since the 4H club was sponsoring one of the church's weekly community meals. On Wednesday night, Kate made some brownies for the meal, with me only in the kitchen to supervise. Way to go, Kate! Not only has she found her confidence with this kind of baking, but she can read my cursive writing on the recipes :)
Friday was our day off. The kids lounged in the morning and Kate had a friend over in the afternoon. Earlier in the month, I knew it may end up being along weekend if we didn't do something out of the house, so the kids and I went to a library program on Saturday afternoon during which we dissected owl pellets. I wish I would have brought a camera!
Kate really enjoyed herself, and at least Ethan and Anna were able to experience something new.
Sunday afternoon Kate and I participated in an open sewing afternoon at church. Both girls had tried this with me last summer, but we learned it was too challenging for Anna at this point. Kate, on the other hand, worked very hard with me to (almost) finish the top of a baby quilt that will get donated to our church's quilting ministry.
It took us a long time, and we had to rip out several seams ... but ... we stuck with it and learned a lot. It was a good experience for the two of us.
And I'll finish up this post with a fun picture of two of the boys in our home. Ethan loves his buddy.
Saturday, January 20, 2018
Updates
Time for some general family updates.
The first weekend of the year we laid low and hung out at home. After getting back into the school/work routine, we were glad to be home and relax again. The kids migrate between the dining room, the bedrooms, and the basement.
Ethan, especially, likes the bungee set-up in the basement.
Last weekend we had a few activities planned to get us out of the house in the cold, January winter weather. Saturday afternoon Anna and Kate took advantage of a Native American cooking class at the Madison Children's Museum while Ethan and Matt played around with the exhibits. Us girls had an enjoyable time making and tasting different foods; the boys played and painted.
On Sunday after church we attended the annual CI Bowling Party with friends and therapists. No bowling ramp was available so all three kids had to figure out how to get the bowling ball down the lane with their own strength.
About the time we were leaving the bowling alley, it started snowing and continued to snow off and on for the next 36 hours. Finally, we were treated to a decent 5-6 inches of snow. Since the kids had off of school on Monday, we were able to enjoy the fresh snow. Kate and Ethan managed the cold quite a bit longer than Anna; although she was excited to get outside to play in the snow, her hands got too cold too soon. (These snowmen were actually made on Friday after school, when the weather had warmed up to the 30s and the snow was better packing snow.)
The other family activity recently was a family introduction evening to our county's 4H program. After a light supper, the adults were ushered off to one room to hear the presentation while the kids were kept in another room participating in a variety of activities. The evening was a little late for some of our kiddos, but they enjoyed the opportunity.
Now for the kid/cat updates.
Ethan - After a few weeks of staying home and playing with family, this boy has had a difficult time transitioning back to the preK routine. I remember a similar occurrence with both of the girls about this time of year; I'm guessing Ethan is not the only one to want to hunker down at home right about now.
But the snow on Monday gave Ethan and I a great excuse to go sledding in the afternoons while the girls were still in school. We braved two different sledding hills and learned that not only is Ethan strong enough and motivated enough to trek up the hills a dozen times or more, but that he also likes steeper hills than mom :)
Kate - Kate is continuing to grow and blossom at school and beyond. Of course she has her challenges, but her comfort level in and out of school continues to increase. This last week she worked pretty hard on a slideshow about Growth Mindset for a small group of which she has been a part for several weeks. This kid has a good eye for visual presentations.
Kate's sadness surrounding Shadow diminished pretty quickly. I think she still misses Shadow's presence sometimes, but her sadness isn't as deep as it was initially.
Anna - In addition to plugging along with the daily and weekly expectations, Anna has had the chance to grow and stretch in different situations recently. At the 4H evening, she was on her own when it came to the kids' camp activities, figuring out how to either participate or self-advocate to the best of her ability. I checked on her at one point and she was doing just fine.
As part of an inquiry activity at school this January, Anna chose to learn more about physical therapists. Her teacher suggested that she interview her clinic PT, so Anna worked with her speech/language therapist to develop her questions and then asked Luke. With the information she gathered, Anna made a google slideshow, but by Thursday still needed to add some pictures. We passed that information along to the therapists, and Anna spent a part of her PT time pulling along her "photography equipment" (ipad on sandbags on scooters) so she could take a variety of pictures and finished up with the slideshow on Thursday afternoon. Friday the kids shared their slideshows with members of their small group. It sounds like it was an enjoyable experience for everyone.
Rusty - This kitty can be full of spunk early in the morning and later in the evening. Having an energized Rusty gives Kate some added motivation for getting up in the morning. So far, he's happy to do whatever anyone wants to do with him ... play, be held, snuggle. One of my favorite things about him is that he loves his people. He often takes naps on the chair in the living room when the house is empty, which means he's waiting at the front door when we get home. Then when the kids go downstairs to play after school, without hesitation Rusty is right down there with them, either playing, too, or lounging on the bed.
We also caught Rusty grooming Ethan the other evening. Hmmm ...
This January is passing more quickly and more smoothly than others in recent years. We will enjoy the relative quiet and calm of these winter months while we can.
The first weekend of the year we laid low and hung out at home. After getting back into the school/work routine, we were glad to be home and relax again. The kids migrate between the dining room, the bedrooms, and the basement.
Ethan, especially, likes the bungee set-up in the basement.
Last weekend we had a few activities planned to get us out of the house in the cold, January winter weather. Saturday afternoon Anna and Kate took advantage of a Native American cooking class at the Madison Children's Museum while Ethan and Matt played around with the exhibits. Us girls had an enjoyable time making and tasting different foods; the boys played and painted.
On Sunday after church we attended the annual CI Bowling Party with friends and therapists. No bowling ramp was available so all three kids had to figure out how to get the bowling ball down the lane with their own strength.
About the time we were leaving the bowling alley, it started snowing and continued to snow off and on for the next 36 hours. Finally, we were treated to a decent 5-6 inches of snow. Since the kids had off of school on Monday, we were able to enjoy the fresh snow. Kate and Ethan managed the cold quite a bit longer than Anna; although she was excited to get outside to play in the snow, her hands got too cold too soon. (These snowmen were actually made on Friday after school, when the weather had warmed up to the 30s and the snow was better packing snow.)
The other family activity recently was a family introduction evening to our county's 4H program. After a light supper, the adults were ushered off to one room to hear the presentation while the kids were kept in another room participating in a variety of activities. The evening was a little late for some of our kiddos, but they enjoyed the opportunity.
Now for the kid/cat updates.
Ethan - After a few weeks of staying home and playing with family, this boy has had a difficult time transitioning back to the preK routine. I remember a similar occurrence with both of the girls about this time of year; I'm guessing Ethan is not the only one to want to hunker down at home right about now.
But the snow on Monday gave Ethan and I a great excuse to go sledding in the afternoons while the girls were still in school. We braved two different sledding hills and learned that not only is Ethan strong enough and motivated enough to trek up the hills a dozen times or more, but that he also likes steeper hills than mom :)
Kate - Kate is continuing to grow and blossom at school and beyond. Of course she has her challenges, but her comfort level in and out of school continues to increase. This last week she worked pretty hard on a slideshow about Growth Mindset for a small group of which she has been a part for several weeks. This kid has a good eye for visual presentations.
Kate's sadness surrounding Shadow diminished pretty quickly. I think she still misses Shadow's presence sometimes, but her sadness isn't as deep as it was initially.
Anna - In addition to plugging along with the daily and weekly expectations, Anna has had the chance to grow and stretch in different situations recently. At the 4H evening, she was on her own when it came to the kids' camp activities, figuring out how to either participate or self-advocate to the best of her ability. I checked on her at one point and she was doing just fine.
As part of an inquiry activity at school this January, Anna chose to learn more about physical therapists. Her teacher suggested that she interview her clinic PT, so Anna worked with her speech/language therapist to develop her questions and then asked Luke. With the information she gathered, Anna made a google slideshow, but by Thursday still needed to add some pictures. We passed that information along to the therapists, and Anna spent a part of her PT time pulling along her "photography equipment" (ipad on sandbags on scooters) so she could take a variety of pictures and finished up with the slideshow on Thursday afternoon. Friday the kids shared their slideshows with members of their small group. It sounds like it was an enjoyable experience for everyone.
Rusty - This kitty can be full of spunk early in the morning and later in the evening. Having an energized Rusty gives Kate some added motivation for getting up in the morning. So far, he's happy to do whatever anyone wants to do with him ... play, be held, snuggle. One of my favorite things about him is that he loves his people. He often takes naps on the chair in the living room when the house is empty, which means he's waiting at the front door when we get home. Then when the kids go downstairs to play after school, without hesitation Rusty is right down there with them, either playing, too, or lounging on the bed.
We also caught Rusty grooming Ethan the other evening. Hmmm ...
This January is passing more quickly and more smoothly than others in recent years. We will enjoy the relative quiet and calm of these winter months while we can.
Monday, January 15, 2018
Saying Good-bye to Shadow
Last Wednesday we had to say good-bye to our cat of 12 1/2 years. Shadow had refused to eat and/or drink for almost a week, even though we tempted her with all of her favorites and she received a hydration treatment at the vet's office on Tuesday. We don't know exactly what the root cause of Shadow's problems were, but we know that she was a very uncomfortable cat towards the end and we chose to end her suffering in a humane way.
Although we were surprised by the speed of her decline in the end, in hindsight we realize we had been seeing symptoms that something wasn't right with Shadow for a little while before Rusty arrives. The timing of Shadow's illness unfortunately coincided with the arrival of the kitten, but (as Ethan and Anna were quick to point out) having Rusty around helped bring us some smiles even when we were feeling sad.
Kate and I probably had the hardest time with saying good-bye. Not only does Kate feel things more deeply than the other kids, but Shadow has always had a special place in Kate's heart. Many time in the last few years when Kate was sad, she would say "I just need Shadow!" and would carry the cat into her room to snuggle for awhile.
For me, I realized last week that Shadow has been a part of my life longer than any of the kids. One of the reasons she earned the name "shadow" was because she followed me around all the time when she was a kitten. She always slept on our bed at night and we often joked that Shadow had a "lap sense" that would tingle whenever anyone in the house sat down. She was the epitome of a lap cat, loving to sit with or on someone while they talked or read.
As part of our grieving/healing, Kate and I looked through some old pictures of Shadow. Here's a few of our favorites.
(The smaller one is Shadow; the larger cat is Shadow's brother, Pounce. We rehomed him several years ago when he started harassing Shadow, often in the middle of the night.)
Shadow transitioned easily to having babies in the house, especially since she had more things to lay on or play with.
Shadow was a very tolerant cat, first with Anna, but then later on with Kate and Ethan, too.
Not only was she tolerant when the kids were babies, but she also received lots of love from them as toddlers and preschoolers, even being content to sit still while someone covered her with stickers.
Kate's relationship with Shadow started early. As a baby, she loved that cat.
As Kate grew, she loved Shadow just as much, but in a different way.
Shadow had no reservations about being included in the different activities and toys of the kids.
As Shadow grew older, she enjoyed snuggling with the kids as they read or rested.
For the last couple of years, Shadow would jump onto Anna's bed early in the morning and snuggle with her until the rest of the house got up.
We will miss our sweet, old cat, but we will cherish our memories of her knowing that she had a good life filled with lots of love.
Although we were surprised by the speed of her decline in the end, in hindsight we realize we had been seeing symptoms that something wasn't right with Shadow for a little while before Rusty arrives. The timing of Shadow's illness unfortunately coincided with the arrival of the kitten, but (as Ethan and Anna were quick to point out) having Rusty around helped bring us some smiles even when we were feeling sad.
Kate and I probably had the hardest time with saying good-bye. Not only does Kate feel things more deeply than the other kids, but Shadow has always had a special place in Kate's heart. Many time in the last few years when Kate was sad, she would say "I just need Shadow!" and would carry the cat into her room to snuggle for awhile.
For me, I realized last week that Shadow has been a part of my life longer than any of the kids. One of the reasons she earned the name "shadow" was because she followed me around all the time when she was a kitten. She always slept on our bed at night and we often joked that Shadow had a "lap sense" that would tingle whenever anyone in the house sat down. She was the epitome of a lap cat, loving to sit with or on someone while they talked or read.
As part of our grieving/healing, Kate and I looked through some old pictures of Shadow. Here's a few of our favorites.
(The smaller one is Shadow; the larger cat is Shadow's brother, Pounce. We rehomed him several years ago when he started harassing Shadow, often in the middle of the night.)
Shadow transitioned easily to having babies in the house, especially since she had more things to lay on or play with.
Shadow was a very tolerant cat, first with Anna, but then later on with Kate and Ethan, too.
Not only was she tolerant when the kids were babies, but she also received lots of love from them as toddlers and preschoolers, even being content to sit still while someone covered her with stickers.
Kate's relationship with Shadow started early. As a baby, she loved that cat.
As Kate grew, she loved Shadow just as much, but in a different way.
Shadow had no reservations about being included in the different activities and toys of the kids.
As Shadow grew older, she enjoyed snuggling with the kids as they read or rested.
For the last couple of years, Shadow would jump onto Anna's bed early in the morning and snuggle with her until the rest of the house got up.
We will miss our sweet, old cat, but we will cherish our memories of her knowing that she had a good life filled with lots of love.
Wednesday, January 10, 2018
"So How's Anna Doing?"
I think these yearly updates about Anna and her health are going to be more helpful for me than they are for others as the years pass. This annual post is a good way for me to compare where Anna has been to where she is and see the progress and the milestones more clearly.
But, as always, it's also a chance for us to communicate with others about how Anna is doing, and to hopefully continue to spread awareness of what it means for a child to be a cancer survivor (of which Anna will not be labeled officially until February, 2019). This year, Anna is one of my editors for this post, since it is mainly about her.
In general, Anna is doing well. She continues to make progress in all goal areas, although that progress is not always particularly visible to the untrained eye. She can still have a wise and mature outlook on life, but also gives her parents a hard time when she's tired or in a bad mood. Her unwavering faith in God gives us more reassurance and hope than any other aspect of who she is.
The first of the specific updates will be about the medical parts of Anna's life. As of November 2017, Anna was considered three years out of treatment. Any changes that have been noted on her scans so far have been a result of treatment, not a recurrence of cancer. Her next scans are scheduled for the beginning of February.
After the two eye surgeries of the last year, Anna's double vision is mostly corrected. My best guess is that her eyes work together as they should about 80% of the time.
Unfortunately, though, Anna's cataracts have grown since this time last year. These were caused by the radiation treatments. We are still hopeful that Anna will not need an additional surgery to remove the cataracts (since that surgery would come with long-term consequences for Anna's vision), but we are aware that they definitely limit her day-to-day vision.
In addition to the cataracts, Anna's eyes do not track as quickly or as smoothly as they should (a.k.a. nystagmus). This is related to Anna's other motor challenges which originate in the damaged cerebellum.
In summary, when Anna is doing things like writing or reading, she can see (for the most part), but in larger or faster moving situations, her vision is poor.
Moving on ... Anna's thyroid gland doesn't work, but her daily thyroid medication has been stable now for several years.
After different tests in 2016 and waiting to see how Anna's body grew, we made the decision this past summer for Anna to start a daily growth hormone injection (the "pen" is similar in appearance and function to an insulin injection, but with a much different medication). Since the growth hormone therapy began, her growth velocity is more typical of a ten year old girl, but now she's a few years behind in terms of her height.
On to the category of food ... Anna is continuing to make progress with her oral intake of foods, thanks in part to a daily appetite stimulant medication that we cycle (three weeks on, one week off), but also due to her continued feeding/speech therapy sessions. My best estimate is that she consistently eats 20-25% of her daily caloric/nutritional needs via her mouth, with the remaining split between formula and homemade purees via her g-tube. Anna will continue to participate in weekly feeding/speech therapy sessions to help her make progress towards or meet various goals that will help her increase the quantity and variety of foods she eats.
Next up is the academic/cognitive aspects of life ... Anna is continuing to do well in the school environment. Her skills and understanding of most concepts are consistently "at grade level or above". Anna's main challenges that affect her ability to learn and participate in a larger group classroom setting are: her mobility disability, her vision challenges, and her slow processing.
Because Anna's motor skills are not where a fifth grader's should be, it takes her much longer to move around a classroom or to write anything. Because Anna has cataracts and nystagmus, everything looks a bit blurry and hard to find. Because the "speed limit" in Anna's brain is so much slower than a typical fifth grader's, she requires longer to think and process.
Put all of this together, and she also often experiences neurological fatigue on a scale most of us rarely experience. Here's a good article that describes neurological fatigue for those who don't have experience with this term.
Objectively speaking, Anna's percentile scores in every category on the Wisconsin State Forward Exam taken each spring improved between the end of third grade and the end of fourth grade. What this means is that she learned more or made more progress than the average WI fourth grade student that year in addition to scoring in the proficient or advanced level for each category tested.
Subjectively speaking, Anna catches on to math concepts quickly, is getting better at asking (and finding the answers to) "I wonder" kinds of questions, and is continuing to use her imagination and creative thinking/reasoning in new and different ways. Her writing skills have also improved tremendously in the last year and a half, thanks to the efforts of Anna's 4th grade resource teacher, the keyboard she attaches to her ipad which allows her to use word prediction software, and the IEP driven ability to dictate her ideas instead of writing them on her own.
Anna is continuing in the same vein as last year with her social life. Although everyone at school and beyond is very kind, nice, and friendly, the reality is that Anna cannot and does not participate in the kinds of activities (running around outside, talking a mile a minute at lunch, chatting before and after school, participating in a variety of after school activities) that foster deep friendships with girls her age.
But, Anna's okay with that. She has friends to sit with each day at lunch and kids to play with on the playground. Most of the girls in her 4th grade homeroom class came to our house last summer for a birthday pool party. Anna is happy with the relationships that she has, both peer and adult. She understands that her differences limit her options. Unless Anna complains about that aspect of life, we're okay with it, too.
Now for the physical piece. The short answer for this one is that Anna has primarily used her walker at school this year and has been transitioning to using her lofstrand crutches at home and in the community. Pluse, I can probably count on one hand the number of times she has used her wheelchair, which is stored at school now, in the past several months.
Here comes the longer answer. Anna is continuing to make progress in her balance, strength, and endurance, but she still has a long way to go. In the summer she participated in the Advance program at CI (a.k.a. CI Summer Camp) during which she became much more skilled at and comfortable with using her crutches. We saw again that during the summer Anna can and will make great strides in her physical skills, but that momentum comes to a stop once school starts.
For those who are interested, here are some of Anna's PT's observations from her last plan-of-care period, which ended in December.
* Anna was able to use her walker to travel approximately 1,500 feet in 6 minutes, including navigating corners.
* Anna was able to use her lofstrand crutches to walk approximately 700 feet in 6 minutes.
* Anna can independently complete a squat to pick an object up off the floor and lift it to a surface in approximately 5/10 attempts. She experiences a greater loss of balance when she is fatigued.
* Anna walked approximately 35 feet without an assistive device prior to loss of balance. She has demonstrated the ability to take slightly larger steps; although for the most part, she continues to take mini-steps.
If you are interested in the background information about what it means for Anna to learn how to walk again, check out the past post called Learning How to Walk.
Back to the original question ... So how is Anna doing? Pretty good for a fifth grader. We'll keep plugging along right next to her.
Time for Prayers
Thanksgiving
Please thank God for the daily gifts he grants us, especially the ability to spend time together as a family of five.
Please give thanks for the continued positive relationships Anna has with her educators, therapists, family, and peers.
Please thank God for all of the progress that Anna made in 2017.
Please give thanks for the supportive and caring community around us that accepts Anna for who she is and rejoices with us when she makes progress.
Please thank God for the continued insights and wisdom of the doctors, nurses, therapists, insurance employees, billing staff, etc., still involved in Anna's care. 2017 did not go by without their help and experience.
Please thank God that Anna's cancer is considered in remission and than she dodged the bullet with regards to some of the radiation/chemotherapy side effects.
Requests
Please pray that Anna can continue to use her intelligence and determination to make progress in all of her goal areas, both physical and cognitive.
Please ask God to continue to surround Anna and our family with people filled with the fruits of the Spirit.
Please pray for the continuing gifts of love, joy, peace, patience, wisdom, and self-control for everyone in our family.
Please pray that God's love can shine through Anna to the people around her in life.
Shoot for the moon time ...
Please pray that Anna learns to eat completely orally ... a.k.a. no g-tube
Please pray that Anna learns to walk independently.
Please pray for the patience to live contentedly until these things happen.
But, as always, it's also a chance for us to communicate with others about how Anna is doing, and to hopefully continue to spread awareness of what it means for a child to be a cancer survivor (of which Anna will not be labeled officially until February, 2019). This year, Anna is one of my editors for this post, since it is mainly about her.
In general, Anna is doing well. She continues to make progress in all goal areas, although that progress is not always particularly visible to the untrained eye. She can still have a wise and mature outlook on life, but also gives her parents a hard time when she's tired or in a bad mood. Her unwavering faith in God gives us more reassurance and hope than any other aspect of who she is.
The first of the specific updates will be about the medical parts of Anna's life. As of November 2017, Anna was considered three years out of treatment. Any changes that have been noted on her scans so far have been a result of treatment, not a recurrence of cancer. Her next scans are scheduled for the beginning of February.
After the two eye surgeries of the last year, Anna's double vision is mostly corrected. My best guess is that her eyes work together as they should about 80% of the time.
Unfortunately, though, Anna's cataracts have grown since this time last year. These were caused by the radiation treatments. We are still hopeful that Anna will not need an additional surgery to remove the cataracts (since that surgery would come with long-term consequences for Anna's vision), but we are aware that they definitely limit her day-to-day vision.
In addition to the cataracts, Anna's eyes do not track as quickly or as smoothly as they should (a.k.a. nystagmus). This is related to Anna's other motor challenges which originate in the damaged cerebellum.
In summary, when Anna is doing things like writing or reading, she can see (for the most part), but in larger or faster moving situations, her vision is poor.
Moving on ... Anna's thyroid gland doesn't work, but her daily thyroid medication has been stable now for several years.
After different tests in 2016 and waiting to see how Anna's body grew, we made the decision this past summer for Anna to start a daily growth hormone injection (the "pen" is similar in appearance and function to an insulin injection, but with a much different medication). Since the growth hormone therapy began, her growth velocity is more typical of a ten year old girl, but now she's a few years behind in terms of her height.
On to the category of food ... Anna is continuing to make progress with her oral intake of foods, thanks in part to a daily appetite stimulant medication that we cycle (three weeks on, one week off), but also due to her continued feeding/speech therapy sessions. My best estimate is that she consistently eats 20-25% of her daily caloric/nutritional needs via her mouth, with the remaining split between formula and homemade purees via her g-tube. Anna will continue to participate in weekly feeding/speech therapy sessions to help her make progress towards or meet various goals that will help her increase the quantity and variety of foods she eats.
Next up is the academic/cognitive aspects of life ... Anna is continuing to do well in the school environment. Her skills and understanding of most concepts are consistently "at grade level or above". Anna's main challenges that affect her ability to learn and participate in a larger group classroom setting are: her mobility disability, her vision challenges, and her slow processing.
Because Anna's motor skills are not where a fifth grader's should be, it takes her much longer to move around a classroom or to write anything. Because Anna has cataracts and nystagmus, everything looks a bit blurry and hard to find. Because the "speed limit" in Anna's brain is so much slower than a typical fifth grader's, she requires longer to think and process.
Put all of this together, and she also often experiences neurological fatigue on a scale most of us rarely experience. Here's a good article that describes neurological fatigue for those who don't have experience with this term.
Objectively speaking, Anna's percentile scores in every category on the Wisconsin State Forward Exam taken each spring improved between the end of third grade and the end of fourth grade. What this means is that she learned more or made more progress than the average WI fourth grade student that year in addition to scoring in the proficient or advanced level for each category tested.
Subjectively speaking, Anna catches on to math concepts quickly, is getting better at asking (and finding the answers to) "I wonder" kinds of questions, and is continuing to use her imagination and creative thinking/reasoning in new and different ways. Her writing skills have also improved tremendously in the last year and a half, thanks to the efforts of Anna's 4th grade resource teacher, the keyboard she attaches to her ipad which allows her to use word prediction software, and the IEP driven ability to dictate her ideas instead of writing them on her own.
Anna is continuing in the same vein as last year with her social life. Although everyone at school and beyond is very kind, nice, and friendly, the reality is that Anna cannot and does not participate in the kinds of activities (running around outside, talking a mile a minute at lunch, chatting before and after school, participating in a variety of after school activities) that foster deep friendships with girls her age.
But, Anna's okay with that. She has friends to sit with each day at lunch and kids to play with on the playground. Most of the girls in her 4th grade homeroom class came to our house last summer for a birthday pool party. Anna is happy with the relationships that she has, both peer and adult. She understands that her differences limit her options. Unless Anna complains about that aspect of life, we're okay with it, too.
Now for the physical piece. The short answer for this one is that Anna has primarily used her walker at school this year and has been transitioning to using her lofstrand crutches at home and in the community. Pluse, I can probably count on one hand the number of times she has used her wheelchair, which is stored at school now, in the past several months.
Here comes the longer answer. Anna is continuing to make progress in her balance, strength, and endurance, but she still has a long way to go. In the summer she participated in the Advance program at CI (a.k.a. CI Summer Camp) during which she became much more skilled at and comfortable with using her crutches. We saw again that during the summer Anna can and will make great strides in her physical skills, but that momentum comes to a stop once school starts.
For those who are interested, here are some of Anna's PT's observations from her last plan-of-care period, which ended in December.
* Anna was able to use her walker to travel approximately 1,500 feet in 6 minutes, including navigating corners.
* Anna was able to use her lofstrand crutches to walk approximately 700 feet in 6 minutes.
* Anna can independently complete a squat to pick an object up off the floor and lift it to a surface in approximately 5/10 attempts. She experiences a greater loss of balance when she is fatigued.
* Anna walked approximately 35 feet without an assistive device prior to loss of balance. She has demonstrated the ability to take slightly larger steps; although for the most part, she continues to take mini-steps.
If you are interested in the background information about what it means for Anna to learn how to walk again, check out the past post called Learning How to Walk.
Back to the original question ... So how is Anna doing? Pretty good for a fifth grader. We'll keep plugging along right next to her.
Time for Prayers
Thanksgiving
Please thank God for the daily gifts he grants us, especially the ability to spend time together as a family of five.
Please give thanks for the continued positive relationships Anna has with her educators, therapists, family, and peers.
Please thank God for all of the progress that Anna made in 2017.
Please give thanks for the supportive and caring community around us that accepts Anna for who she is and rejoices with us when she makes progress.
Please thank God for the continued insights and wisdom of the doctors, nurses, therapists, insurance employees, billing staff, etc., still involved in Anna's care. 2017 did not go by without their help and experience.
Please thank God that Anna's cancer is considered in remission and than she dodged the bullet with regards to some of the radiation/chemotherapy side effects.
Requests
Please pray that Anna can continue to use her intelligence and determination to make progress in all of her goal areas, both physical and cognitive.
Please ask God to continue to surround Anna and our family with people filled with the fruits of the Spirit.
Please pray for the continuing gifts of love, joy, peace, patience, wisdom, and self-control for everyone in our family.
Please pray that God's love can shine through Anna to the people around her in life.
Shoot for the moon time ...
Please pray that Anna learns to eat completely orally ... a.k.a. no g-tube
Please pray that Anna learns to walk independently.
Please pray for the patience to live contentedly until these things happen.
Saturday, January 6, 2018
Happy New Year!
We rounded out the year 2017 with a family trip down to the Wisconsin State Capitol to see the Christmas tree.
Actually, by the end of the week, some of us were itching to get out of the house a little so this was an excuse to break up one of the afternoons.
New Year's Eve and New Year's Day were low-key, per usual, in our home. I think more years than not in the last decade, a child has woken us up right around midnight for one reason or another, and none of those reasons are to ring in the new year. This year's winner was Ethan, who had a bad dream.
Thankfully, the weather warmed up slightly on Monday so that Kate and Ethan could go outside to play in the snow in the front yard. Snow angels, rolling, and sledding were all enjoyable activities when the temperature rose above 10 degrees.
This week the kids all went back to school on Tuesday. Except for a slightly tearful Ethan that morning when he was feeling sad because he missed his sisters, the week went fairly well. The girls resumed their activities and Ethan and I settled into our routines easily.
In fact, Ethan and Rusty seem to be creating a special relationship in the afternoons before the girls come home. Rusty was missing the noise and activity of having everyone home, and Ethan discovered that a kitten can be a very fun companion.
With the holidays and some extra activities at church and elsewhere, our kitchen has been a busy place recently. All of the kids have taken turns helping and baking, including Ethan. He was impressively serious while making some cookies the other day. Gotta teach 'em early.
When not playing with Rusty, toys, or helping me in the kitchen, Ethan can still be found at the piano. Sometimes he likes to make music, while other times he likes to watch how the mechanisms work.
The family realized this morning that the kids only have one full week of school this January. This week was four days, next week will be five, and then they have two more four day weeks. We're looking forward to the shorter, and less tiring, experiences.
Actually, by the end of the week, some of us were itching to get out of the house a little so this was an excuse to break up one of the afternoons.
New Year's Eve and New Year's Day were low-key, per usual, in our home. I think more years than not in the last decade, a child has woken us up right around midnight for one reason or another, and none of those reasons are to ring in the new year. This year's winner was Ethan, who had a bad dream.
Thankfully, the weather warmed up slightly on Monday so that Kate and Ethan could go outside to play in the snow in the front yard. Snow angels, rolling, and sledding were all enjoyable activities when the temperature rose above 10 degrees.
This week the kids all went back to school on Tuesday. Except for a slightly tearful Ethan that morning when he was feeling sad because he missed his sisters, the week went fairly well. The girls resumed their activities and Ethan and I settled into our routines easily.
In fact, Ethan and Rusty seem to be creating a special relationship in the afternoons before the girls come home. Rusty was missing the noise and activity of having everyone home, and Ethan discovered that a kitten can be a very fun companion.
With the holidays and some extra activities at church and elsewhere, our kitchen has been a busy place recently. All of the kids have taken turns helping and baking, including Ethan. He was impressively serious while making some cookies the other day. Gotta teach 'em early.
When not playing with Rusty, toys, or helping me in the kitchen, Ethan can still be found at the piano. Sometimes he likes to make music, while other times he likes to watch how the mechanisms work.
The family realized this morning that the kids only have one full week of school this January. This week was four days, next week will be five, and then they have two more four day weeks. We're looking forward to the shorter, and less tiring, experiences.
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