This life of ours can be overwhelming. When everything is running smoothly and no one is sick, joy and happiness are the overwhelming emotions. However, it doesn't take much to upset our delicately balanced life. Then making it through each moment can feel overwhelming.
This is the time of year when lots of "extras" are thrown into the mix.
Kate had a music program for school one evening the other week; it didn't seem to be too bad until it became the third evening in a week that was thrown off in our family. The other two were due to Anna's medical appointments. Kate was very excited to sing her class song and all of the kindergarteners did a nice job, but still ... one more thing.
Last week was "swim week" for the second graders. As with the other grades in the school, swim week entails each class walking 10 minutes or so to the high school, changing in the locker rooms, spending 30 minutes in the pool under the instruction of their regular gym teacher, changing again, and then walking back to school. What I wouldn't give to be the parent of a "normal" second grader, especially during a week like this. "Anna, make sure you pack your swimming suit, towel, and wear good walking shoes. Don't forget to bring a raincoat in case it rains."
But that's not how it works now. We (all of Anna's team) wanted to give Anna the opportunity to be in the pool with her class whenever possible, but that required multiple emails, phone conversations, and much coordination across the entire district to make it happen, for the only two days that Anna would actually be at school during her class's swim time. In the end, the extra effort was worth it. Anna loved the time in the water and I think her classmates were glad to have her along, too. But still ... one more thing, and this one was a big one.
The next month or so includes several field trips for both the kindergarteners and the 2nd graders. Kate's class trips are easier to deal with ... fill out the form, send in the money, and remember the day before the event. Anna's are trickier ... Is watching an IMAX really in the best interest of someone with Anna's vestibular challenges? (We decided against this trip.) What kind of special transportation will Anna need? How does the field trip affect her feeding schedule? How wheelchair accessible is a farm? And the list goes on.
Then there's the state testing. What kinds of accommodations does Anna need? Who is responsible for them? These extras, at least, don't exactly fall on our shoulders.
Last week Kate came home with four (that's right, FOUR) birthday party invitations for the coming weeks. Plus, we are in the midst of planning Kate's birthday party for the following weekend, and one short week after that is Anna's wish weekend at the Kalahari.
In addition to the extra "stuff" going on, Kate seems to be struggling a bit again. Sometimes we forget just how much Anna's cancer affected Kate, too. We had our mommy-Kate day last Tuesday, but even that day wasn't all about Kate. Ethan had his gymnastics class and then our day was cut short by the need to pick Anna up. During a heart-to-heart talk with dear Kate later in the week, she confessed to me "Sometimes I think I'm going to wake up and realize this has all been a dream." Me, too, Kate. Me, too. That particular afternoon included many overwhelming moments.
To balance out the more difficult aspects of life, however, we are also overwhelmed by some of the positive moments.
Anna went to a birthday party at a bowling alley last weekend and had a great time. The other girls (two of whom she didn't really know) were wonderful about including her in the bowling and other activities ... except the handstands and cartwheels :)
We have gone to a few parks in recent weeks and other kids have voluntarily interacted with Anna. Sunday another 2nd grader from Anna's school came over to say hi and then played with Matt and Anna while they got Anna to go down some slides a handful of times. Sure, lots of people still stare, but not everyone anymore. The kids from school are very used to seeing Anna and interacting with her by this point.
We are still overwhelmed by the willingness of others to rearrange their schedules to help us out when we need it.
I am sometimes caught off-guard by the basic ability of Anna to make progress. Over the course of the last few months, I have come to realize that Anna's situation is SO unique. Unlike many kids with disabilities, Anna was not born with hers. She can get stronger in a much different way than can other children we see on therapy mornings.
At the same time, I realize more and more how completely her treatments wiped her neuro-muscular system clean. Many other kiddos who have received treatment for brain cancer have not been nearly as affected as Anna was. The comparisons, in both directions, can be overwhelming at times.
And then there's Ethan. As a friend told us this week at church, if everyone said "HI!" or "HELLO!" to others like Ethan does (when he's in a good mood), the world would be a much better place. Dear Ethan certainly has a troublesome streak right now, but he obviously brings a lot of joy to those around him.
At times, even the moments when the whole family is laughing together and goofing off can feel overwhelming, but in a good way. I'd rather have these moments together in addition to the difficult ones, than none at all
Time for prayers
Thanksgiving
Please give thanks for the fresh air and exercise our kids have received the last few days; the cold, rainy weather of last week was getting us down.
Please thank God for the people working in our lives. Everyone is still giving Anna their best, as she (usually) gives others her best effort.
Please give thanks for the day Kate and I spent together at home last week.
Please thank God for the wisdom, rest, patience, strength, peace, and joy that He grants.
Requests
Please ask God to continue to grant our family rest in the weeks to come; they have the potential to be busy and stressful.
Please pray for our continued wisdom, strength, patience, peace, and joy.
Please ask God to make our path clear for the summer months.
Please pray for those working with Anna, both at school and at the hospital and at therapy.
Please ask God to be with Anna this Friday as she has surgery to remove her port (!).
Please pray for Anna and her new feeding therapist as they begin their relationship together this week.
Thanks for your continued thoughts and prayers.
Monday, April 27, 2015
Monday, April 20, 2015
Laughter
(For anyone who knows us and our tendency towards humor, often juvenile humor, this information will probably not provide many surprises.)
During Anna's first session with her new occupational therapist at the end of February, he brought out a special "tool" that he thought Anna would enjoy using during her OT sessions. His special tool? A whoopee cushion. Awesome. His idea was to give Anna a little extra motivation to practice standing transfers from one place to another. It turns out she also did a lot of "wheelchair push-ups" with the whoopee cushion, too.
I don't know that Anna had ever seen a whoopee cushion before that Monday, but by the end of the day we were the proud owners of our own whoopee cushion. That first one only lasted about a week in our home; by that point it was so well used that it was falling apart. Even Ethan would push himself up with his arms in his chair at the table, then say "Toot!" with a huge smile on his face.
Last week while at the store I picked up two more to replace our first. Cushion #2 was used just about every day in our home last week, by just about every member of the family. It's already starting to show wear and tear.
Pediatric rehab is tricky. It's true that kids' brains are resilient, but rehab takes a lot of work. Imagine telling a kid to work really hard at something, with no real visible motivation, and see what kind of effort you get. If you bribe the child, you may get a bit more effort. If, however, you make the work fun, then a kid is going to work and work and work, even if they are drop dead tired. As long as they are laughing and don't think of it as work, they will keep going (for the most part).
Whenever Anna has been intrinsically motivated, the lengths to which she pushes herself are incredible. When she pushes herself like this, she makes huge gains.
Take the sand/sensory table, for example. Since Christmas, this child's hand strength, dexterity, and endurance has gotten so much better. We think that a good portion of this improvement is a result of the hours she, Kate, and Ethan spent playing in the sand table on Saturdays this winter. Digging, squeezing, rolling, pouring. Anna was doing all of those "exercises" while having fun.
Our current challenge is to make the work fun when it comes to Anna's legs, hips, feet, core strength, etc. We are trying, but unless it is fun, she won't push herself. As she told me recently, "But my wheelchair is comfortable." In light of where she was last year, I think it's AWESOME that she considers her wheelchair comfortable, but ... we don't want it to be too comfortable.
Anna's new physical therapist is trying different things each week and, so far, has done a great job of finding fun, challenging activities. Anna is usually pretty tired after her PT sessions, but finds them very enjoyable. Anna doesn't really notice that the activities are "work" until near the end of the session when she is getting close to being dog-tired.
With the nice weather last week and over the weekend, we became aware of the different kinds of challenges we will face this summer. This year, as opposed to last year, Anna wants to run around and play with Kate and Ethan; she recognizes the things that are going on around her and wants to participate in them; she can think fast enough to be a part of it. However, she is physically limited in how she can play. I could tell she was feeling a whole host of feelings regarding this over the weekend.
So ... we are going to work on it, all aspects of it. First, what kind of equipment can we have to make Anna more mobile independently outside? Second, what more can we do consciously at home to help with her core/leg strengthening? Third, how can we recognize one another's feelings and alter our own actions/activities to help? (This one will be mainly for me, Kate, and Anna as we approach the summer together.)
Matt and I make a good team. Between the two of us, I am definitely the "planner" and he provides the element of laughter. Over the years, especially the parenting years, we have worked these characteristics into our lives in a fairly effective way. I make sure the children are clothed and fed (among other things, of course), and he makes sure we have fun running around the yard and at the dinner table (among other things, of course). I am confident that our roles and our relationship will continue to grow and evolve, but I hope that we will also continue to keep some of what has stuck with us since we first met 15 years ago.
Now that we recognize this new challenge, Matt will be able to help bring the laughter and humor into the home rehab piece so we can continue to help Anna get stronger and continue to have fun doing it.
Instead of closing with prayers this time, let me close with a reference to Sunday's sermon at our church. Our pastor preached on 1 Corinthians 15 - "The Resurrection Chapter". I won't include the whole chapter here, simply because it is too long. However, I encourage any readers of this blog to read the chapter. The closing verses are as follows:
"Where, O death, is your victory? Where, O death, is your sting?"
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.
Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain."
During Anna's first session with her new occupational therapist at the end of February, he brought out a special "tool" that he thought Anna would enjoy using during her OT sessions. His special tool? A whoopee cushion. Awesome. His idea was to give Anna a little extra motivation to practice standing transfers from one place to another. It turns out she also did a lot of "wheelchair push-ups" with the whoopee cushion, too.
I don't know that Anna had ever seen a whoopee cushion before that Monday, but by the end of the day we were the proud owners of our own whoopee cushion. That first one only lasted about a week in our home; by that point it was so well used that it was falling apart. Even Ethan would push himself up with his arms in his chair at the table, then say "Toot!" with a huge smile on his face.
Last week while at the store I picked up two more to replace our first. Cushion #2 was used just about every day in our home last week, by just about every member of the family. It's already starting to show wear and tear.
Pediatric rehab is tricky. It's true that kids' brains are resilient, but rehab takes a lot of work. Imagine telling a kid to work really hard at something, with no real visible motivation, and see what kind of effort you get. If you bribe the child, you may get a bit more effort. If, however, you make the work fun, then a kid is going to work and work and work, even if they are drop dead tired. As long as they are laughing and don't think of it as work, they will keep going (for the most part).
Whenever Anna has been intrinsically motivated, the lengths to which she pushes herself are incredible. When she pushes herself like this, she makes huge gains.
Take the sand/sensory table, for example. Since Christmas, this child's hand strength, dexterity, and endurance has gotten so much better. We think that a good portion of this improvement is a result of the hours she, Kate, and Ethan spent playing in the sand table on Saturdays this winter. Digging, squeezing, rolling, pouring. Anna was doing all of those "exercises" while having fun.
Our current challenge is to make the work fun when it comes to Anna's legs, hips, feet, core strength, etc. We are trying, but unless it is fun, she won't push herself. As she told me recently, "But my wheelchair is comfortable." In light of where she was last year, I think it's AWESOME that she considers her wheelchair comfortable, but ... we don't want it to be too comfortable.
Anna's new physical therapist is trying different things each week and, so far, has done a great job of finding fun, challenging activities. Anna is usually pretty tired after her PT sessions, but finds them very enjoyable. Anna doesn't really notice that the activities are "work" until near the end of the session when she is getting close to being dog-tired.
With the nice weather last week and over the weekend, we became aware of the different kinds of challenges we will face this summer. This year, as opposed to last year, Anna wants to run around and play with Kate and Ethan; she recognizes the things that are going on around her and wants to participate in them; she can think fast enough to be a part of it. However, she is physically limited in how she can play. I could tell she was feeling a whole host of feelings regarding this over the weekend.
So ... we are going to work on it, all aspects of it. First, what kind of equipment can we have to make Anna more mobile independently outside? Second, what more can we do consciously at home to help with her core/leg strengthening? Third, how can we recognize one another's feelings and alter our own actions/activities to help? (This one will be mainly for me, Kate, and Anna as we approach the summer together.)
Matt and I make a good team. Between the two of us, I am definitely the "planner" and he provides the element of laughter. Over the years, especially the parenting years, we have worked these characteristics into our lives in a fairly effective way. I make sure the children are clothed and fed (among other things, of course), and he makes sure we have fun running around the yard and at the dinner table (among other things, of course). I am confident that our roles and our relationship will continue to grow and evolve, but I hope that we will also continue to keep some of what has stuck with us since we first met 15 years ago.
Now that we recognize this new challenge, Matt will be able to help bring the laughter and humor into the home rehab piece so we can continue to help Anna get stronger and continue to have fun doing it.
Instead of closing with prayers this time, let me close with a reference to Sunday's sermon at our church. Our pastor preached on 1 Corinthians 15 - "The Resurrection Chapter". I won't include the whole chapter here, simply because it is too long. However, I encourage any readers of this blog to read the chapter. The closing verses are as follows:
"Where, O death, is your victory? Where, O death, is your sting?"
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.
Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain."
Friday, April 17, 2015
Updates
Time for some general updates about the kiddos.
The short summary about Anna is that her scans from last week are stable; however, she still doesn't eat orally or walk ... but... overall she is doing really well.
Instead of going system by system for the longer explanation, I'm going to give a few illustrations to show why we think she is doing well.
On Monday afternoon Anna had a follow-up EEG to check her need for anti-seizure medication. The technicians as well as the neurologist asked, with puzzled looks on their faces, "So why was she taking the medication in the first place?" This time, her brain showed no sign of seizure activity. Over the next month and a half she will be weaned off of the anti-seizure medication. Hooray!
(Unfortunately, the EEG procedure itself was pretty traumatic. 23 electrodes had to be glued to Anna's scalp. About the time the technician started on the fourth, Anna was already crying. Then each electrode had a special lubricant injected into it. The sensations were quite disturbing to poor Anna. Many tears and screams led to much vomit :( But I digress.)
In the last couple of weeks, Anna has voluntarily picked books up off the couch to read for fun. Not as homework assignments, not because we have encouraged her to, just because she wants to. After the struggles in attitude and endurance with reading back in December, seeing Anna want to read independently is pretty cool.
At Anna's neuro-oncology appointment on Monday afternoon, her primary oncologist was enthusiastically positive about Anna's overall health and progress. We went through the medication list and reduced several and eliminated some. The list of 14 or so meds Anna came home with last May has been slowly diminishing. She will soon be down to only a couple of supplements at a fraction of the original dosages, her thyroid medication, good ole' zofran (anti-nausea), zantac, and melatonin. Not bad.
This week I took the kids to the Little Gym for an open gym time; we hadn't been able to go in several weeks due to illnesses/tiredness/spring break. This week Anna could crawl and scoot faster and farther than she was able to do a month ago. She could move over and around obstacles, which would have tripped her up previously. We hope to rearrange some furniture in our home soon to provide Anna with more safe and fun opportunities to move around out of her wheelchair these days. That's going to be the best way for her to continue to get stronger.
Last November, Anna would cringe if someone even touched her face or neck; the sensation was incredibly uncomfortable. Last Friday and today Anna's therapist was able to massage her neck muscles. Huge steps here, people.
While at the Little Gym on Wednesday, another family we have seen often during this time was also there playing, although we don't know them outside of the open gym sessions. All the kids started creating a fort with some of the equipment and, with Kate's lead, made Anna her own room in the fort. It was awesome to see Anna able to play and interact imaginatively with other kids.
We are awaiting the phone call regarding Anna's port removal surgery. Hip, hip, hooray! The port has served its purpose for more than a year, but we are ready for this implanted device to come OUT.
In our observations as Anna's parents, her overall endurance is improving as is her speed with her brain functions, both cognitive and muscular. We may not have the official tests and information to back it up, but we probably have more overall experience with Anna.
Besides all of that, one of my favorite things about Anna these days is that she will often ask "Mom, what can I do to help?" I wish I had better answers to that question for her!
Kate's turn. This kid badly needs a "mental health" day off from school. Wednesday evening she made herself a sign that read "please be kind to me. I am tiord!"; she taped it to her shirt. I figure that if adults are allowed to take a day off every now and then, a kid like Kate should have that opportunity, too. Now I just have to find a day that doesn't include any appointments, therapy visits, specific errand days, etc. so it can truly be a "day off" for her.
Ethan's turn. Here is a quick list of some of his more memorable phrases. It's time to write them down before they change again.
"I want to be ALL done." - He says this when he thinks he is done with a meal, shopping trip, church service, other activity, etc. His tone and facial expressions are priceless.
"Wet me fink about dat." - Translated as "Let me think about that." He picked this one up from Anna's speech therapist. Anna uses it now to give herself some more time to put her thoughts together before answering a question instead of just staring into space while she is thinking.
"Are you sad?" - As with our other children, Ethan is very in tune to others' emotions. If I use a certain tone, he wants to know if I am sad, why I might be sad, if someone else is sad, why they might be sad, etc.
"Efand" - This is how Ethan says his name :)
"How are you?" "Good." - A conversation two of Ethan's trains were having with one another last week.
The little stinker is also pushing some limits these days. We have begun using time-outs with him, as well as "breaks" in his room, when necessary. Both seem to be effective for the time being.
Time for prayers
Thanksgiving
Please give thanks for all of the progress that Anna is continuing to make, both visible and invisible.
Please thank God for Anna's continuing motivation.
Please give thanks that Anna's EEG came back conclusive for no seizure activity.
Please thank God that Anna's overall health is stable.
Please give thanks for the overall health and enjoyment of our other children.
Please continue to give thanks for all of those working with Anna and our family; everyone (new and old) is still putting in extra time and energy for this kid.
Please continue to give thanks for the strength, wisdom, peace, patience, and rest that we are receiving.
Requests
Please continue to pray for Anna's educational team, especially as the spring weather effects all of the kids :)
Please continue to pray for Anna's medical team; she is still on their radar.
Please continue to pray for Anna's rehab team, especially as Anna transitions to a new feeding therapist in the coming two weeks.
Please pray that Kate recovers quickly from her cold and that it is a mild one for the rest of us.
Please continue to pray for wisdom, strength, peace, patience, and rest for all of us.
Thanks, as always!
The short summary about Anna is that her scans from last week are stable; however, she still doesn't eat orally or walk ... but... overall she is doing really well.
Instead of going system by system for the longer explanation, I'm going to give a few illustrations to show why we think she is doing well.
On Monday afternoon Anna had a follow-up EEG to check her need for anti-seizure medication. The technicians as well as the neurologist asked, with puzzled looks on their faces, "So why was she taking the medication in the first place?" This time, her brain showed no sign of seizure activity. Over the next month and a half she will be weaned off of the anti-seizure medication. Hooray!
(Unfortunately, the EEG procedure itself was pretty traumatic. 23 electrodes had to be glued to Anna's scalp. About the time the technician started on the fourth, Anna was already crying. Then each electrode had a special lubricant injected into it. The sensations were quite disturbing to poor Anna. Many tears and screams led to much vomit :( But I digress.)
In the last couple of weeks, Anna has voluntarily picked books up off the couch to read for fun. Not as homework assignments, not because we have encouraged her to, just because she wants to. After the struggles in attitude and endurance with reading back in December, seeing Anna want to read independently is pretty cool.
At Anna's neuro-oncology appointment on Monday afternoon, her primary oncologist was enthusiastically positive about Anna's overall health and progress. We went through the medication list and reduced several and eliminated some. The list of 14 or so meds Anna came home with last May has been slowly diminishing. She will soon be down to only a couple of supplements at a fraction of the original dosages, her thyroid medication, good ole' zofran (anti-nausea), zantac, and melatonin. Not bad.
This week I took the kids to the Little Gym for an open gym time; we hadn't been able to go in several weeks due to illnesses/tiredness/spring break. This week Anna could crawl and scoot faster and farther than she was able to do a month ago. She could move over and around obstacles, which would have tripped her up previously. We hope to rearrange some furniture in our home soon to provide Anna with more safe and fun opportunities to move around out of her wheelchair these days. That's going to be the best way for her to continue to get stronger.
Last November, Anna would cringe if someone even touched her face or neck; the sensation was incredibly uncomfortable. Last Friday and today Anna's therapist was able to massage her neck muscles. Huge steps here, people.
While at the Little Gym on Wednesday, another family we have seen often during this time was also there playing, although we don't know them outside of the open gym sessions. All the kids started creating a fort with some of the equipment and, with Kate's lead, made Anna her own room in the fort. It was awesome to see Anna able to play and interact imaginatively with other kids.
We are awaiting the phone call regarding Anna's port removal surgery. Hip, hip, hooray! The port has served its purpose for more than a year, but we are ready for this implanted device to come OUT.
In our observations as Anna's parents, her overall endurance is improving as is her speed with her brain functions, both cognitive and muscular. We may not have the official tests and information to back it up, but we probably have more overall experience with Anna.
Besides all of that, one of my favorite things about Anna these days is that she will often ask "Mom, what can I do to help?" I wish I had better answers to that question for her!
Kate's turn. This kid badly needs a "mental health" day off from school. Wednesday evening she made herself a sign that read "please be kind to me. I am tiord!"; she taped it to her shirt. I figure that if adults are allowed to take a day off every now and then, a kid like Kate should have that opportunity, too. Now I just have to find a day that doesn't include any appointments, therapy visits, specific errand days, etc. so it can truly be a "day off" for her.
Ethan's turn. Here is a quick list of some of his more memorable phrases. It's time to write them down before they change again.
"I want to be ALL done." - He says this when he thinks he is done with a meal, shopping trip, church service, other activity, etc. His tone and facial expressions are priceless.
"Wet me fink about dat." - Translated as "Let me think about that." He picked this one up from Anna's speech therapist. Anna uses it now to give herself some more time to put her thoughts together before answering a question instead of just staring into space while she is thinking.
"Are you sad?" - As with our other children, Ethan is very in tune to others' emotions. If I use a certain tone, he wants to know if I am sad, why I might be sad, if someone else is sad, why they might be sad, etc.
"Efand" - This is how Ethan says his name :)
"How are you?" "Good." - A conversation two of Ethan's trains were having with one another last week.
The little stinker is also pushing some limits these days. We have begun using time-outs with him, as well as "breaks" in his room, when necessary. Both seem to be effective for the time being.
Time for prayers
Thanksgiving
Please give thanks for all of the progress that Anna is continuing to make, both visible and invisible.
Please thank God for Anna's continuing motivation.
Please give thanks that Anna's EEG came back conclusive for no seizure activity.
Please thank God that Anna's overall health is stable.
Please give thanks for the overall health and enjoyment of our other children.
Please continue to give thanks for all of those working with Anna and our family; everyone (new and old) is still putting in extra time and energy for this kid.
Please continue to give thanks for the strength, wisdom, peace, patience, and rest that we are receiving.
Requests
Please continue to pray for Anna's educational team, especially as the spring weather effects all of the kids :)
Please continue to pray for Anna's medical team; she is still on their radar.
Please continue to pray for Anna's rehab team, especially as Anna transitions to a new feeding therapist in the coming two weeks.
Please pray that Kate recovers quickly from her cold and that it is a mild one for the rest of us.
Please continue to pray for wisdom, strength, peace, patience, and rest for all of us.
Thanks, as always!
Tuesday, April 14, 2015
Catching our breath
I keep thinking that one of these days we will be able to stop and catch our breath. But now I'm not so sure. The last week or so has been pretty hectic in our home, with the MRI and the follow-up appointments; this week looks to be busy as well, for different reasons. So many things seem to happen every day in our little family. Part of living in the moment means that the moments pass by quickly, and then the next moment happens, and then the next.
Take Friday for example. We received the good news from Anna's MRI. However, the happiness of the day was tempered by the fact that we learned earlier in the day from Anna's speech/language/feeding therapist that she got a new job and will have only one more session with Anna. We are getting more used to transitions with therapists, but we really liked this one and had a great relationship with her. Not only will Anna soon be working with a new therapist, but her schedule will need to change and our summer plans will also need to shift.
After therapy, Ethan and I managed a big grocery shopping trip. On the way home is when we got the phone call from the hospital.
Friday afternoon was not the best in our home. It had been a long week for the kids and, after being picked up from school in the midst of a brief rainstorm, we had a rough afternoon with lots of emotional moments. Regardless of the extras, we are still the parents of a seven-year-old girl, an emotional almost-six-year-old girl, and a now-testing-the-limits two-year-old boy.
But, we got good news about Anna's MRI.
I have been trying to put the whole idea of the MRI situation into perspective for those who have not lived with cancer and here is my best illustration.
We see our lives as following a path. As we approach a set of scans, we can see our path following two possible directions. The anxiety as we reach the crossroads is about which direction our lives will take; the uncertainty is hard. We have no control over which path we take; the lack of control is also hard, but not as difficult for me anymore.
Both paths have their own ups and downs. As Anna so poignantly put it recently "Mom, it would have been nice to meet Jesus, but I'm glad I get to spend more time with my family." (She was referring to her hospital time last year, not a recurrence of cancer. The kids don't know as much about the chances of recurrence as we do, and we don't even know that much. Ignorance is sometimes better in this regard.)
Once we know which way to step, we go forward with 100% of our energies. Even now, it's hard for me to remember the possibilities of the "other" path; so much has already happened since that crossroads in our life.
Every four months for the coming two years, we will approach this same fork in the road. The comfort we have each and every time is that if the cancer comes back, and treatment is not a realistic option, Jesus (and a great big party of faithful family and friends) is waiting for Anna in heaven.
Not every cancer family has this same faith and perspective.
Time for prayers
Thanksgiving
Please give thanks that Anna's scans all look stable!
Next time I'll post more updates. Like I said, life has been a bit hectic.
Take Friday for example. We received the good news from Anna's MRI. However, the happiness of the day was tempered by the fact that we learned earlier in the day from Anna's speech/language/feeding therapist that she got a new job and will have only one more session with Anna. We are getting more used to transitions with therapists, but we really liked this one and had a great relationship with her. Not only will Anna soon be working with a new therapist, but her schedule will need to change and our summer plans will also need to shift.
After therapy, Ethan and I managed a big grocery shopping trip. On the way home is when we got the phone call from the hospital.
Friday afternoon was not the best in our home. It had been a long week for the kids and, after being picked up from school in the midst of a brief rainstorm, we had a rough afternoon with lots of emotional moments. Regardless of the extras, we are still the parents of a seven-year-old girl, an emotional almost-six-year-old girl, and a now-testing-the-limits two-year-old boy.
But, we got good news about Anna's MRI.
I have been trying to put the whole idea of the MRI situation into perspective for those who have not lived with cancer and here is my best illustration.
We see our lives as following a path. As we approach a set of scans, we can see our path following two possible directions. The anxiety as we reach the crossroads is about which direction our lives will take; the uncertainty is hard. We have no control over which path we take; the lack of control is also hard, but not as difficult for me anymore.
Both paths have their own ups and downs. As Anna so poignantly put it recently "Mom, it would have been nice to meet Jesus, but I'm glad I get to spend more time with my family." (She was referring to her hospital time last year, not a recurrence of cancer. The kids don't know as much about the chances of recurrence as we do, and we don't even know that much. Ignorance is sometimes better in this regard.)
Once we know which way to step, we go forward with 100% of our energies. Even now, it's hard for me to remember the possibilities of the "other" path; so much has already happened since that crossroads in our life.
Every four months for the coming two years, we will approach this same fork in the road. The comfort we have each and every time is that if the cancer comes back, and treatment is not a realistic option, Jesus (and a great big party of faithful family and friends) is waiting for Anna in heaven.
Not every cancer family has this same faith and perspective.
Time for prayers
Thanksgiving
Please give thanks that Anna's scans all look stable!
Next time I'll post more updates. Like I said, life has been a bit hectic.
Friday, April 10, 2015
MRI Results
We got the call late this morning. Anna's scans are unchanged from the ones in December. Whew! Big sigh of relief. Now we will resume planning for the next several months of life (we kind of put "planning" on hold the last few days as we awaited these results).
Anna still has residual spots in her brain and on her spine, but nothing has changed and there is nothing new. Great news.
As we have been told, the further Anna is from treatment, the safer we feel. This set of scans was technically considered to be four months out from treatment, not really very long is the grand scheme of things.
Anna will have another set of scans in about four months. Until then, we will keep plugging along and making the best lemonade out of the lemons we have been given.
Anna still has residual spots in her brain and on her spine, but nothing has changed and there is nothing new. Great news.
As we have been told, the further Anna is from treatment, the safer we feel. This set of scans was technically considered to be four months out from treatment, not really very long is the grand scheme of things.
Anna will have another set of scans in about four months. Until then, we will keep plugging along and making the best lemonade out of the lemons we have been given.
Thursday, April 9, 2015
No news
After probably the smoothest MRI experience thus far for Anna in terms of anesthesia and recovery time, we are in a holding pattern regarding the results. No one with enough seniority was available to give us a preliminary "read" of the results at the end of the day. We anticipate receiving a phone call with the important information sometime on Friday.
Thank you for the prayers for peace and rest. Our anxiety in preparation for this MRI and its results has been present, but not as much as it could be.
Thank you for the prayers for peace and rest. Our anxiety in preparation for this MRI and its results has been present, but not as much as it could be.
Tuesday, April 7, 2015
Easter and more
We had a nice Easter weekend, for the most part. I love the message of Easter and Jesus' Resurrection. This year, in particular, Jesus' victory over death reminds me of the true nature and center of our faith. No matter our present trials, we have eternity with Jesus to look forward to. No cancer, no therapies, no sickness.
Saturday was a family day in our home. In the afternoon, we took advantage of the spring weather to visit the wheelchair accessible playground in Madison, finally. Holy cow, it's awesome! I have a feeling that this location will be a park of choice this summer.
Kate and Ethan loved the different aspects of the playground.
It's been months since we have been to a park together as a family. Slides, climbing equipment, monkey bars ... all outdoors!
Two aspects of the park make it wheelchair friendly. First, and probably most importantly, the surface of the playground is flat and rubberized, which means Anna can move herself around independently on it. I never thought about the difficulty playground surfaces created for wheelchairs until last summer.
The second part of the playground that made it fun for Anna were the ramps. Long, inclined ramps lead up to the upper level of the structure. It's still hard for Anna to wheel herself up these ramps, but she certainly had fun zooming down them once someone pushed her up. She also was able to go down a slide with me. Fun stuff.
Sometime in the last few weeks Kate discovered that she can do monkey bars. Way to go, Kate!
Anna was tired by the end, but that's understandable. Not only was she moving around and playing, but simply being outdoors on a windy day taxes her system.
A few years ago the girls and I came up with a system for rating different parks. As we visited different ones we would call them either a "hit" or a "bust". This one was definitely a "hit" for our family.
Sunday we celebrated Easter at our church with a beautiful service in addition to the traditional Easter brunch. We ended up having some friends over in the afternoon to play and for dinner. The planning was certainly spur of the moment, but that's kind of how we roll these days. It was nice to finally have a chance to reconnect with this family. We met them about thirteen years ago (ahhhh!) when we first moved to Madison and have stayed connected with them this whole time.
I say our Easter weekend was good "for the most part", because we think by Sunday evening Anna finally showed symptoms of the stomach bug that was going around her school. It's hard to say for certain, however, because of the extent of Anna's baseline symptoms these days. We are about 75% sure that her extra nausea and fatigue was caused by a stomach virus.
Monday was kind of a crazy mixed up day, but we made it work.
To be honest, I hope for a simple stomach flu. And yes, I understand the irony in that statement given our recent trials. However, given the other possibilities, I would much rather Anna's symptoms be caused by something as simple as the stomach flu. For the most part, we can handle this kind of virus. It may not be fun, but at least we know how to treat it. And historically, our family/kids handle stomach troubles relatively quickly.
Either way, Anna was home from school on Monday and Tuesday. She was feeling much better by Monday evening and Tuesday has gone well so far. We plan on her going back to school on Wednesday only to be missing most of Thursday due to her scheduled MRI.
Speaking of the MRI, it's on Thursday. I will try to post an update on Thursday evening or Friday morning with the results. However, MRI days suck. Anna still requires anesthesia for the 3-hour procedure (to "protect her airway"); she isn't allowed to have any food or water in the morning prior to the MRI; and she typically has a hard time as she wakes up. Being hungry and slightly dehydrated on top of anesthesia medication make for a grumpy 7-year-old, regardless of who they are. Then we don't get home until later in the evening and still have to do a school night routine with the kids. No matter the results, MRI days are tough.
Time for Prayers
Thanksgiving
Please give thanks for the promise of Easter.
Please give thanks for a wheelchair accessible playground in Madison!
Please thank God for the relatively enjoyable week our family has last week.
Please give thanks for everyone who is working with our family.
Please thank God for friends, new and old.
Please give thanks that our kids typically deal with stomach viruses quickly and easily.
Please thank God for peace, patience, wisdom, rest, and healing.
Requests
Please pray that we experience God's presence and peace this week.
Please continue to pray for wisdom, peace, patience, understanding, and kindness for all those working with Anna.
Please continue to pray for wisdom, patience, and rest for our family.
Please pray that the whole process of the MRI day goes as smoothly as possible.
Thanks!
Saturday was a family day in our home. In the afternoon, we took advantage of the spring weather to visit the wheelchair accessible playground in Madison, finally. Holy cow, it's awesome! I have a feeling that this location will be a park of choice this summer.
Kate and Ethan loved the different aspects of the playground.
It's been months since we have been to a park together as a family. Slides, climbing equipment, monkey bars ... all outdoors!
Two aspects of the park make it wheelchair friendly. First, and probably most importantly, the surface of the playground is flat and rubberized, which means Anna can move herself around independently on it. I never thought about the difficulty playground surfaces created for wheelchairs until last summer.
The second part of the playground that made it fun for Anna were the ramps. Long, inclined ramps lead up to the upper level of the structure. It's still hard for Anna to wheel herself up these ramps, but she certainly had fun zooming down them once someone pushed her up. She also was able to go down a slide with me. Fun stuff.
Sometime in the last few weeks Kate discovered that she can do monkey bars. Way to go, Kate!
Anna was tired by the end, but that's understandable. Not only was she moving around and playing, but simply being outdoors on a windy day taxes her system.
A few years ago the girls and I came up with a system for rating different parks. As we visited different ones we would call them either a "hit" or a "bust". This one was definitely a "hit" for our family.
Sunday we celebrated Easter at our church with a beautiful service in addition to the traditional Easter brunch. We ended up having some friends over in the afternoon to play and for dinner. The planning was certainly spur of the moment, but that's kind of how we roll these days. It was nice to finally have a chance to reconnect with this family. We met them about thirteen years ago (ahhhh!) when we first moved to Madison and have stayed connected with them this whole time.
I say our Easter weekend was good "for the most part", because we think by Sunday evening Anna finally showed symptoms of the stomach bug that was going around her school. It's hard to say for certain, however, because of the extent of Anna's baseline symptoms these days. We are about 75% sure that her extra nausea and fatigue was caused by a stomach virus.
Monday was kind of a crazy mixed up day, but we made it work.
To be honest, I hope for a simple stomach flu. And yes, I understand the irony in that statement given our recent trials. However, given the other possibilities, I would much rather Anna's symptoms be caused by something as simple as the stomach flu. For the most part, we can handle this kind of virus. It may not be fun, but at least we know how to treat it. And historically, our family/kids handle stomach troubles relatively quickly.
Either way, Anna was home from school on Monday and Tuesday. She was feeling much better by Monday evening and Tuesday has gone well so far. We plan on her going back to school on Wednesday only to be missing most of Thursday due to her scheduled MRI.
Speaking of the MRI, it's on Thursday. I will try to post an update on Thursday evening or Friday morning with the results. However, MRI days suck. Anna still requires anesthesia for the 3-hour procedure (to "protect her airway"); she isn't allowed to have any food or water in the morning prior to the MRI; and she typically has a hard time as she wakes up. Being hungry and slightly dehydrated on top of anesthesia medication make for a grumpy 7-year-old, regardless of who they are. Then we don't get home until later in the evening and still have to do a school night routine with the kids. No matter the results, MRI days are tough.
Time for Prayers
Thanksgiving
Please give thanks for the promise of Easter.
Please give thanks for a wheelchair accessible playground in Madison!
Please thank God for the relatively enjoyable week our family has last week.
Please give thanks for everyone who is working with our family.
Please thank God for friends, new and old.
Please give thanks that our kids typically deal with stomach viruses quickly and easily.
Please thank God for peace, patience, wisdom, rest, and healing.
Requests
Please pray that we experience God's presence and peace this week.
Please continue to pray for wisdom, peace, patience, understanding, and kindness for all those working with Anna.
Please continue to pray for wisdom, patience, and rest for our family.
Please pray that the whole process of the MRI day goes as smoothly as possible.
Thanks!
Saturday, April 4, 2015
Back to school
We got back into the swing of things this past week with the girls returning to school and the rest of us resuming our "normal" work and extracurricular activities. Our weekly routines are tiring, but typically happier than when people are sick.
The girls had no school on Friday and, by that point, Kate was READY to be done with the school schedule. In fact, she was in tears before her gymnastic class on Thursday night because she just wanted to "stay home and play". Friday morning Anna had therapy, but after that we were on our own. The kids were thrilled; they love their free time.
One of the extra activities of the week was Anna's parent-teacher conference. The kids went over to a friend's house for the after-school time (our three kids + their four kids = lots of fun) while Matt and I met with Anna's team. Using the term "team" in reference to Anna's school experience and academics is very applicable. No less than eight professionals met with us for the conference, and that does not include Anna's aides or the related arts teachers or the variety of people with whom she interacts in the hall every day. It's amazing how much is accomplished and how well Anna is doing when we work together as a team.
At the conference we discussed Anna's current levels of acheivement, both academically as well as in terms of her various therapies. She is still doing as well as can be expected. Math/critical thinking is definitely one of her strengths, but we were pleased to learn that her reading (comprehension, vocabulary, word attack skills) is at grade level. She is continuing to work on her fluency, but reading aloud takes additional time for Anna because it involves speech and language skills in addition to actual reading skills. As with everything, her stamina and endurance is continually increasing (unless she is sick).
We also discussed some of the nitty-gritty details of the next few months (schedule, field trips, projects, testing, etc.). The final part of the conference was about Anna's transition to 3rd grade: what can be done in the next few months, what could/should be done over the summer, and how parts of third grade might look for her.
On a side note, all of the postcards Anna received in the last year or so, in addition to the map with stars, will be used by some of the 2nd grade classrooms in the coming months. Geography is one of the topics covered in the curriculum. When we learned about the upcoming unit, we offered the resources to Anna's teachers. We figured that they would be used more at school than in our storage room in the basement :)
All in all, it was a good conference. Anna has an incredible "team" this year at school.
Along with school and the medical aspects of life, this is the time when the growing cycle starts again. Hooray! Here's my update on our food stocks and this year's garden. (This is more for my future reference than anyone else.)
This past week we finally ran out of green beans, broccoli, and freezer pickles. We used up the last of the corn a month ago or so. We still have shredded zucchini, butternut squash, and loads of pureed pumpkin in the freezer. Our stock of canned tomato products is good. This coming season I plan on canning more diced tomatoes instead of as much spaghetti sauce. Our applesauce supply is running low, but the grape juice is still being enjoyed. We also have plenty of potatoes left.
I started our broccoli plants a few weeks back; they are doing great. We started tomatoes from seed for the first time this year; we'll see how they do.
Monday afternoon the kids helped me transplant the broccoli plants out of the peat pots into little cups; we had a nice assembly line set up outside. Anna filled the cups with dirt; I transplanted the plants; Kate watered them; Ethan played in the water.
Friday morning we stopped at Aldi after therapy and picked up a couple of flats of strawberries that were on sale. In the past when Aldi's has strawberries on sale for $0.99/lb. this time of year, we buy a good supply, freeze them, and use them throughout the year. We've been watching the fliers, but it doesn't look like the sale is going to be quite as good. However, the sale is still better than most prices for strawberries throughout the year.
The girls helped me slice up the strawberries while Ethan was napping. We taught Kate how to slice strawberries when she was 3 1/2. Maybe not every family would choose to teach their 3 year old how to use a knife, but she was very safe and very, very helpful. This year her efficiency was impressive! I hope I can keep her motivated to help with the garden!
This year I got Anna set up in the stander to help. Again, every therapist might not recommend this activity, but she was safe and helpful.
Most importantly, both girls felt very proud about being able to help this way and were looking forward to ways they can help in the future.
Time for Prayers
Thanksgiving
Please give thanks that we are all healthy right now!
Please thank God for Anna's educational team.
Please give thanks for Anna's medical team.
Please thank God for Anna's therapy team.
Please give thanks that we are getting relatively decent sleep in our house these days.
Please thank God that Anna continues to make progress with all of her rehabilitation.
In this Easter season, please give thanks for Jesus' sacrifice and all that this means for us.
Requests
Please continue to pray for peace, patience, wisdom, strength, and rest for all in our family.
Please continue to pray for these same characteristics for those working with Anna and our family.
Please continue to pray that Anna's strength, coordination, and endurance increases in all areas of her rehabilitation.
Thanks, as always, for all of your support and prayers!
The girls had no school on Friday and, by that point, Kate was READY to be done with the school schedule. In fact, she was in tears before her gymnastic class on Thursday night because she just wanted to "stay home and play". Friday morning Anna had therapy, but after that we were on our own. The kids were thrilled; they love their free time.
One of the extra activities of the week was Anna's parent-teacher conference. The kids went over to a friend's house for the after-school time (our three kids + their four kids = lots of fun) while Matt and I met with Anna's team. Using the term "team" in reference to Anna's school experience and academics is very applicable. No less than eight professionals met with us for the conference, and that does not include Anna's aides or the related arts teachers or the variety of people with whom she interacts in the hall every day. It's amazing how much is accomplished and how well Anna is doing when we work together as a team.
At the conference we discussed Anna's current levels of acheivement, both academically as well as in terms of her various therapies. She is still doing as well as can be expected. Math/critical thinking is definitely one of her strengths, but we were pleased to learn that her reading (comprehension, vocabulary, word attack skills) is at grade level. She is continuing to work on her fluency, but reading aloud takes additional time for Anna because it involves speech and language skills in addition to actual reading skills. As with everything, her stamina and endurance is continually increasing (unless she is sick).
We also discussed some of the nitty-gritty details of the next few months (schedule, field trips, projects, testing, etc.). The final part of the conference was about Anna's transition to 3rd grade: what can be done in the next few months, what could/should be done over the summer, and how parts of third grade might look for her.
On a side note, all of the postcards Anna received in the last year or so, in addition to the map with stars, will be used by some of the 2nd grade classrooms in the coming months. Geography is one of the topics covered in the curriculum. When we learned about the upcoming unit, we offered the resources to Anna's teachers. We figured that they would be used more at school than in our storage room in the basement :)
All in all, it was a good conference. Anna has an incredible "team" this year at school.
Along with school and the medical aspects of life, this is the time when the growing cycle starts again. Hooray! Here's my update on our food stocks and this year's garden. (This is more for my future reference than anyone else.)
This past week we finally ran out of green beans, broccoli, and freezer pickles. We used up the last of the corn a month ago or so. We still have shredded zucchini, butternut squash, and loads of pureed pumpkin in the freezer. Our stock of canned tomato products is good. This coming season I plan on canning more diced tomatoes instead of as much spaghetti sauce. Our applesauce supply is running low, but the grape juice is still being enjoyed. We also have plenty of potatoes left.
I started our broccoli plants a few weeks back; they are doing great. We started tomatoes from seed for the first time this year; we'll see how they do.
Monday afternoon the kids helped me transplant the broccoli plants out of the peat pots into little cups; we had a nice assembly line set up outside. Anna filled the cups with dirt; I transplanted the plants; Kate watered them; Ethan played in the water.
Friday morning we stopped at Aldi after therapy and picked up a couple of flats of strawberries that were on sale. In the past when Aldi's has strawberries on sale for $0.99/lb. this time of year, we buy a good supply, freeze them, and use them throughout the year. We've been watching the fliers, but it doesn't look like the sale is going to be quite as good. However, the sale is still better than most prices for strawberries throughout the year.
The girls helped me slice up the strawberries while Ethan was napping. We taught Kate how to slice strawberries when she was 3 1/2. Maybe not every family would choose to teach their 3 year old how to use a knife, but she was very safe and very, very helpful. This year her efficiency was impressive! I hope I can keep her motivated to help with the garden!
This year I got Anna set up in the stander to help. Again, every therapist might not recommend this activity, but she was safe and helpful.
Most importantly, both girls felt very proud about being able to help this way and were looking forward to ways they can help in the future.
Time for Prayers
Thanksgiving
Please give thanks that we are all healthy right now!
Please thank God for Anna's educational team.
Please give thanks for Anna's medical team.
Please thank God for Anna's therapy team.
Please give thanks that we are getting relatively decent sleep in our house these days.
Please thank God that Anna continues to make progress with all of her rehabilitation.
In this Easter season, please give thanks for Jesus' sacrifice and all that this means for us.
Requests
Please continue to pray for peace, patience, wisdom, strength, and rest for all in our family.
Please continue to pray for these same characteristics for those working with Anna and our family.
Please continue to pray that Anna's strength, coordination, and endurance increases in all areas of her rehabilitation.
Thanks, as always, for all of your support and prayers!
Subscribe to:
Posts (Atom)