Sometimes Matt and I have to take a step back and remind ourselves that we are that family. We get so busy and involved in the day-to-day details of life such that we lose the perspective that our oldest child has brain cancer. Brain cancer. Not something we ever imagined in our wildest dreams.
As everyone is preparing more and more for school, we are also realizing that Anna is now that student. Given the fact that all four of Anna's grandparents were teachers at some point, and that I taught middle school for six years, we have a window into the kinds of work and support that Anna will need during her time at school. It is humbling to know that many people within the school district are having meetings prior to the start of the school year on how best to serve Anna and her needs.
And yet, Anna's entire situation is unique. She is so excited to go back to school. In spite of all of her physical challenges, she is very motivated to work hard, do her best, and honestly enjoys learning new things. We hope that she will be a joy to work with at school just as she has been pleasant for most who have worked with her at the hospital and at home. The transition will be tough and exhausting for her, but she has already shown us that her fierce determination can do her wonders.
Not only is this Anna's week for chemotherapy, but it's also the week before school when teachers and other staff report back to the building. It's a busy week and we, as a family, have a lot on our plate. But Matt was able to take the week off; we have already met with some of Anna's teachers; Kate and Ethan will be spending a day with our McFarland friends to give Matt some time at home to get household work done; and I have a long list of people to speak with at the hospital while Anna is in-patient.
Each day is a day with its own tasks and agenda items; sometimes those days even include canning tomatoes :) Who knows what tomorrow will bring?
Time for prayers
Thanksgiving
Please give thanks that Anna is completely over her cold finally.
Please thank God that Anna's blood counts continue to bounce back, albeit not as quickly as they once did.
Please give thanks that, in spite of all the time Matt had to take off earlier this year, he is still able to be home this week.
Please thank God for Leah; she was truly a gift to our family. Even though her summer job in our home is officially over, we will continue to keep in touch with her and request her help when needed.
Please give thanks for those at Anna's school who are already putting in extra time and effort to make sure her transition back to school is a smooth as can be.
Requests
Please continue to pray for wisdom, strength, and energy as we all prepare our family for the beginning of the school year.
Please continue to pray for those at Anna and Kate's schools who will be working with them in the coming school year.
Please pray for Anna's peers and classmates. As Anna told us tonight at dinner, "I want the other kids to know that even though I am different, it's still okay to be my friend."
Please continue to pray for those who are working with our family in the hospital and beyond.
Please pray that this round of chemotherapy goes as smoothly as possible for all involved.
Please continue to pray that Anna's treatments are 100% effective.
Please pray for my mom and Matt's parents, who will all be traveling this week.
Thank you, especially, for your prayers and support in the next few weeks.
Monday, August 25, 2014
Thursday, August 21, 2014
End of summer
This summer has not gone how we thought it would go, either back in January, or February, or any month up until now. But in reflecting on how everything has played out in the last few months, we know that God had a hand in our lives and we are thankful for the time we have had. Some days have been very, very challenging while others have been good. Most days have had laughter, smiles and happiness at some point; I would like to think that we done our best to make the most of our time.
This past weekend my brother flew in from Colorado to be our "helper" for a few days. He appeared at our home late on Friday night (while we were all sleeping), helped harvest and freeze the sweet corn on Saturday morning (along with some helpful neighbors), played with Kate in the afternoon, and then in the pool with the rest of us. After church on Sunday he helped some more, played some more, and took the younger kids to a park with me in the afternoon. By the time the rest of us woke up on Monday morning, he was already on a plane back to Colorado. As he told me on Saturday, we hadn't really talked since he came to the hospital for a day back in February, so it was good to be able to reconnect with him for a weekend.
One of the benefits of having Adam's help was that Matt was able to finish his newest project for Anna, "Scootie". One piece of rehab equipment that we didn't get for Anna was a corner chair that allows a child to sit on the floor and play, even if they don't have the strength, balance, and coordination to do it on their own. Matt modified Anna's old carseat by attaching it to an altered piano dolly, added some straps, and now Anna and Kate can play on the floor together. As Anna continues to get stronger, she will be able to use her legs and feet to move herself around a little.
We are trying to prepare ourselves for Leah's departure and the transitions to school in several ways. First, we have been in contact with school off and on all summer to try and make sure we can hit the ground running in September. Anna has already missed a lot of school, and she will continue to miss school off and on for the next few months, so we are all working hard to have her make the most of her time in school. If we continue to hope for the best, we want to make sure that Anna has the best opportunity to learn the academics that she should learn.
After Leah and I had a few successful trips out of the house with all the kids, I have been trying to get out a bit with the whole crew on my own some as well. Not very far, however. A trip in to McFarland to run a few errands is about all I can handle for now. Once school starts, I will be doing more and more of the transportation by myself and I want to make sure that we've had some practice with it first.
On Wednesday, we chose to take the kids to the zoo in the morning. Fun and exhausting are the words I would use to describe that experience. There is no way I could handle that kind of a trip with all three kids on my own at this point so I figured we should do it while we still had Leah as our helper. (Pardon the funny expressions in our kids' faces; I was just proud that I took any pictures at all.)
Next week Matt is still planning on taking some time off, but we also have a lot of work to do. Plus, Anna is up for her fourth round of chemotherapy on Tuesday and Wednesday. Besides those two days, we are going to do our best to enjoy being together, even it is includes such tasks as canning salsa and/or spaghetti sauce, before the craziness of school schedules begins.
Time for prayers
Thanksgiving
Please thank God for all of the help and support we have been receiving throughout this summer.
Please give thanks for Anna's "feeling good" time just before her chemotherapy visits.
Please thank God for the bounty of our garden.
Please give thanks for the flexibility and understanding of our school district as we all prepare for Anna to re-enter school.
Requests
Please continue to pray for all those who are working with and for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please pray for teachers and school personnel as they prepare for the coming school year.
Please pray for Anna's teachers, in particular.
Please ask God to help all members of our family through the transitions in the month of September.
Please ask God to protect Anna as she experiences her next round of chemotherapy.
Thanks for everything!
This past weekend my brother flew in from Colorado to be our "helper" for a few days. He appeared at our home late on Friday night (while we were all sleeping), helped harvest and freeze the sweet corn on Saturday morning (along with some helpful neighbors), played with Kate in the afternoon, and then in the pool with the rest of us. After church on Sunday he helped some more, played some more, and took the younger kids to a park with me in the afternoon. By the time the rest of us woke up on Monday morning, he was already on a plane back to Colorado. As he told me on Saturday, we hadn't really talked since he came to the hospital for a day back in February, so it was good to be able to reconnect with him for a weekend.
One of the benefits of having Adam's help was that Matt was able to finish his newest project for Anna, "Scootie". One piece of rehab equipment that we didn't get for Anna was a corner chair that allows a child to sit on the floor and play, even if they don't have the strength, balance, and coordination to do it on their own. Matt modified Anna's old carseat by attaching it to an altered piano dolly, added some straps, and now Anna and Kate can play on the floor together. As Anna continues to get stronger, she will be able to use her legs and feet to move herself around a little.
We are trying to prepare ourselves for Leah's departure and the transitions to school in several ways. First, we have been in contact with school off and on all summer to try and make sure we can hit the ground running in September. Anna has already missed a lot of school, and she will continue to miss school off and on for the next few months, so we are all working hard to have her make the most of her time in school. If we continue to hope for the best, we want to make sure that Anna has the best opportunity to learn the academics that she should learn.
After Leah and I had a few successful trips out of the house with all the kids, I have been trying to get out a bit with the whole crew on my own some as well. Not very far, however. A trip in to McFarland to run a few errands is about all I can handle for now. Once school starts, I will be doing more and more of the transportation by myself and I want to make sure that we've had some practice with it first.
On Wednesday, we chose to take the kids to the zoo in the morning. Fun and exhausting are the words I would use to describe that experience. There is no way I could handle that kind of a trip with all three kids on my own at this point so I figured we should do it while we still had Leah as our helper. (Pardon the funny expressions in our kids' faces; I was just proud that I took any pictures at all.)
Next week Matt is still planning on taking some time off, but we also have a lot of work to do. Plus, Anna is up for her fourth round of chemotherapy on Tuesday and Wednesday. Besides those two days, we are going to do our best to enjoy being together, even it is includes such tasks as canning salsa and/or spaghetti sauce, before the craziness of school schedules begins.
Time for prayers
Thanksgiving
Please thank God for all of the help and support we have been receiving throughout this summer.
Please give thanks for Anna's "feeling good" time just before her chemotherapy visits.
Please thank God for the bounty of our garden.
Please give thanks for the flexibility and understanding of our school district as we all prepare for Anna to re-enter school.
Requests
Please continue to pray for all those who are working with and for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please pray for teachers and school personnel as they prepare for the coming school year.
Please pray for Anna's teachers, in particular.
Please ask God to help all members of our family through the transitions in the month of September.
Please ask God to protect Anna as she experiences her next round of chemotherapy.
Thanks for everything!
Tuesday, August 19, 2014
Pictures
Earlier this summer we had some family pictures taken. We are usually just happy with the snapshots we take, and have only once done any kind of formal portraits of our kids (actually only with Anna and Kate, Ethan wasn't around yet). But this summer is different and we decided to have some professional pictures taken. They turned out great. It will probably be a few months before we do anything more with them besides just sharing the images on this blog and Facebook, but that's okay. At least the pictures have been taken :)
Ethan cooperated (or did not cooperate) about as well as a toddler should; the girls did a great job; and our photographer (a friend from our Valpo days) is one very talented lady.
Ethan cooperated (or did not cooperate) about as well as a toddler should; the girls did a great job; and our photographer (a friend from our Valpo days) is one very talented lady.
Monday, August 18, 2014
MRI results
The images from Anna's MRI on Thursday showed that everything is "continuing to progress towards normal". Her primary oncology doctor is positive about how the treatments are going; the neurosurgeon said that Anna's ventricles are still stable and so she is not in need of a shunt at this time. All good news.
Pardon me for not being overly hopeful and positive; we've learned some hard lessons about getting our hopes too high in the past. We considered this MRI more of a check-in. Unless the images showed big, bad surprises, nothing much was going to change in terms of Anna's current treatments. The more critical MRIs will be when Anna's treatments are all done.
But, we'll take the good news when we get it. So, hooray for chemotherapy that is continuing to work well on those nasty cancer cells! (Even if it is continuing to have its own negative effects on our little girl.)
Pardon me for not being overly hopeful and positive; we've learned some hard lessons about getting our hopes too high in the past. We considered this MRI more of a check-in. Unless the images showed big, bad surprises, nothing much was going to change in terms of Anna's current treatments. The more critical MRIs will be when Anna's treatments are all done.
But, we'll take the good news when we get it. So, hooray for chemotherapy that is continuing to work well on those nasty cancer cells! (Even if it is continuing to have its own negative effects on our little girl.)
Wednesday, August 13, 2014
Midweek update
Even though we have learned much medical information this year, we still have more to learn. This past week our learning curve was about the steroid taper. It turns out Anna's body couldn't quite handle the slow speed of the outlined taper, so we've had to back up a few weeks and go more slowly.
Steroids are an important medication for brain cancer patients. The drugs are good for reducing nausea (which is more prevalent in patients with brain cancer, as opposed to other types of cancer), for reducing swelling and inflammation (such as that occurring in the brain), and for just giving a bit more "feel good feeling" when there are physiological reasons not to feel good. Anna needed steroids in February for obvious reasons. Once she started her radiation treatments, the medication was still very important to help her get through the trauma of having her whole central nervous system undergo radiation on a daily basis. But taking steroids shut down some of her body's natural mechanisms.
As I've said before, analogies work well for me to understand some of what's happening to Anna, and my latest analogy is comparing this steroid taper to giving up coffee.
At the end of February just before her treatments began, Anna's steroid dosage was comparable to drinking a couple of pots of coffee every day. By the time she left the hospital, she was down to just one pot. If someone were to stop that kind of coffee habit cold turkey, they'd feel pretty crummy. Instead, they might cut back to just half a pot, then just a few cups, then just one cup, and so on, thus making it not so traumatic for their system. However, while they are stopping their habit, something may happen one day and they may end up "needing" an extra cup of coffee later in the day. After a few days of getting this extra cup, then they need to back up in the whole cessation process.
With Anna's cold, recent chemo treatment, and the continued cutting back of the steroids, she was feeling really, really crummy. Not just "didn't have your cup of coffee today" kind of crummy, but physiologically crummy. After a few days of not understanding quite why she was feeling so bad, we (doctors, nurses, and us) figured out that cutting back on her steroids as quickly as we were while she was still undergoing her chemo treatments was not working. So we've backed up a few weeks with this medication schedule and have decided to take it all more slowly.
Poor kid. There's always something going on.
But ... yesterday and today she felt much better.
On Thursday Anna has a scheduled set of MRI scans, the long ones that take about 3 hours and require anesthesia, not the quick brain MRI that only takes five minutes. Almost unbelievably, she hasn't had any kind of MRI in about 6 weeks; definitely the longest she has gone without one since February 3. This week's scans will be compared with the ones from the middle of May to assess the overall cancer/tumor as well as continuing to assess her need for a shunt. As we have been told again and again, Anna's "clinical status" is going to show much more than an MRI will, so we do not have any real reason to be concerned. But still ...
Kate had a great weekend with Grandma up at Camp Luther. She came home full of smiles, stories, and happiness. After a few conversations with her this week, I think she may be working through the difficulties she was experiencing last week. I don't think she can quite put into words exactly what she was feeling, but the card she made for Anna yesterday with the two of them smiling and Anna in her wheelchair,
in addition to this scene after dinner tonight,
made my heart happier than it had been in awhile.
With Leah's help, we managed to take advantage of a day last week and a day this week during which there were no nurses, therapists, or others scheduled to come to our home in the morning. We took the kids to a park last week for an hour or so and then to a local farm/petting zoo/activity area for a bit this morning. Kate and Ethan both express their desire to stay longer on these field trips, but Anna just can't handle much more than that yet.
I think I can count on one hand the number of times I/we have taken all three kids somewhere besides church this summer. Although they don't happen often, these trips allow us to make some pretty memorable moments.
Time for prayers
Thanksgiving
Please give thanks for the beautiful weather today that allowed Leah and I to take the kids to the farm.
Please thank God that this whole steroid business seems to be under control, finally.
Please give thanks for all of the support we are continuing to receive.
Please thank God that Kate and Grandma had a safe, fun, and memorable weekend together.
Please give thanks that Kate seems to be working through some of her difficulties.
Requests
Please pray that Thursday's scans do not hold any bad surprises for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all who are working with or for our family.
Please continue to pray for strength, wisdom, peace, patience, and understanding for our family.
Thanks for your prayers.
Steroids are an important medication for brain cancer patients. The drugs are good for reducing nausea (which is more prevalent in patients with brain cancer, as opposed to other types of cancer), for reducing swelling and inflammation (such as that occurring in the brain), and for just giving a bit more "feel good feeling" when there are physiological reasons not to feel good. Anna needed steroids in February for obvious reasons. Once she started her radiation treatments, the medication was still very important to help her get through the trauma of having her whole central nervous system undergo radiation on a daily basis. But taking steroids shut down some of her body's natural mechanisms.
As I've said before, analogies work well for me to understand some of what's happening to Anna, and my latest analogy is comparing this steroid taper to giving up coffee.
At the end of February just before her treatments began, Anna's steroid dosage was comparable to drinking a couple of pots of coffee every day. By the time she left the hospital, she was down to just one pot. If someone were to stop that kind of coffee habit cold turkey, they'd feel pretty crummy. Instead, they might cut back to just half a pot, then just a few cups, then just one cup, and so on, thus making it not so traumatic for their system. However, while they are stopping their habit, something may happen one day and they may end up "needing" an extra cup of coffee later in the day. After a few days of getting this extra cup, then they need to back up in the whole cessation process.
With Anna's cold, recent chemo treatment, and the continued cutting back of the steroids, she was feeling really, really crummy. Not just "didn't have your cup of coffee today" kind of crummy, but physiologically crummy. After a few days of not understanding quite why she was feeling so bad, we (doctors, nurses, and us) figured out that cutting back on her steroids as quickly as we were while she was still undergoing her chemo treatments was not working. So we've backed up a few weeks with this medication schedule and have decided to take it all more slowly.
Poor kid. There's always something going on.
But ... yesterday and today she felt much better.
On Thursday Anna has a scheduled set of MRI scans, the long ones that take about 3 hours and require anesthesia, not the quick brain MRI that only takes five minutes. Almost unbelievably, she hasn't had any kind of MRI in about 6 weeks; definitely the longest she has gone without one since February 3. This week's scans will be compared with the ones from the middle of May to assess the overall cancer/tumor as well as continuing to assess her need for a shunt. As we have been told again and again, Anna's "clinical status" is going to show much more than an MRI will, so we do not have any real reason to be concerned. But still ...
Kate had a great weekend with Grandma up at Camp Luther. She came home full of smiles, stories, and happiness. After a few conversations with her this week, I think she may be working through the difficulties she was experiencing last week. I don't think she can quite put into words exactly what she was feeling, but the card she made for Anna yesterday with the two of them smiling and Anna in her wheelchair,
in addition to this scene after dinner tonight,
made my heart happier than it had been in awhile.
With Leah's help, we managed to take advantage of a day last week and a day this week during which there were no nurses, therapists, or others scheduled to come to our home in the morning. We took the kids to a park last week for an hour or so and then to a local farm/petting zoo/activity area for a bit this morning. Kate and Ethan both express their desire to stay longer on these field trips, but Anna just can't handle much more than that yet.
I think I can count on one hand the number of times I/we have taken all three kids somewhere besides church this summer. Although they don't happen often, these trips allow us to make some pretty memorable moments.
Time for prayers
Thanksgiving
Please give thanks for the beautiful weather today that allowed Leah and I to take the kids to the farm.
Please thank God that this whole steroid business seems to be under control, finally.
Please give thanks for all of the support we are continuing to receive.
Please thank God that Kate and Grandma had a safe, fun, and memorable weekend together.
Please give thanks that Kate seems to be working through some of her difficulties.
Requests
Please pray that Thursday's scans do not hold any bad surprises for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all who are working with or for our family.
Please continue to pray for strength, wisdom, peace, patience, and understanding for our family.
Thanks for your prayers.
Saturday, August 9, 2014
No fever
Anna made it through her low blood counts week without major incident ... Praise God!
She still has her cough, but that is to be expected. Her body stopped fighting the cold about Monday when her white blood cells disappeared and it hasn't had a chance to really start fighting it again until today. But the cough didn't get much worse; that's good.
Anna became symptomatic for anemia on Monday even though her red blood cell counts weren't quite as low as they had been previously, so her clinic visit on Tuesday turned into a blood transfusion day. We (including Anna) were all glad for that, however, because it meant that Anna felt a whole lot better on Wednesday.
Because Anna ended up having her blood drawn and tested on Monday and Tuesday, we opted for her normal Thursday home nursing visit (during which her blood counts are checked again; they're always checked at least twice a week) to happen on Friday. Low and behold, by Friday she had white blood cells again! That means that she no longer needed her GCSF injection in the evening and we could remove the under-the-skin catheter used to inject it.
I guess I misspoke early on in this chemotherapy process when I said that Anna's baseline robust immune system would not count for much. What I should have said was that it doesn't count for much for about 48 hours, but when it bounces back, it does so with a purpose.
Not that any of us have any control over that, though.
I also misspoke last week when I said that Kate was easy to please. She has been struggling lately. Some of the things that she has said have hurt my heart; not my feelings, but my heart. Granted, she has been tired, hungry, and/or emotional when she makes these comments, but I'm guessing that there is some truth behind what she says.
She is our child these days who is not the toddler who needs to be watched continuously, nor is she the rehab patient who needs many of her daily cares done for her. She is the most independent of the three of them and, as such, often gets lost in the middle. Our family unit doesn't seem to be as special to her as it once was.
Before Anna entered kindergarten we read a wonderful book called Going Public that gave us a much needed different perspective about sending our kids to public schools. To be honest, the world is a scary place and we were afraid of the influences that the outside world would have on our children.
The whole idea behind the book is how parents and families can and will be the main teachers and influences for their kids; the importance of family was key. The book also explained how you can use public schools as an extended learning opportunity for your kids. For example, a public school is a great place for kids to start trying out all of the problem solving skills we've been teaching them at home, especially in terms of dealing with other people. The book also emphasized how you can keep your family's core faith values even while navigating the public school years. It's a great book; I highly recommend it.
But this summer has been about survival for our family. We did not even try to make a list of fun activities to do as a family. In fact, the only "tradition" that we have managed to keep intact has been eating dinner together, and even that can be interrupted by a disruptive toddler or the needs of a cancer patient.
So Kate is struggling. She is old enough to remember the fun of summers past and also old enough to miss those times. She also misses having the big sister Anna who could run and jump and climb with her, or could even just sit on the floor to play with her.
This weekend Kate is at Camp Luther with grandma for Grandkids' Camp, something that Anna did when she was 5. We're hoping that not only will Kate have a wonderful time, but that she will come home wanting to be home with us again. Having her away from us for just a day now makes us all miss her smiles, laughter, and energy terribly.
We have also chosen to be intentional about this issue, too. We have explained to our kids that we are each going to pick one special activity that we would like to do as a family before school starts. Granted, these activities will not include trips to waterparks or visits to grandparents' homes or even leaving our yard necessarily, but at least they will, hopefully, be something memorable for us to do as a family this summer that doesn't involve medical lingo. So far the requests are very, very basic. I hope we can make them happen.
Time for prayers
Thanksgiving
Please give thanks that Anna did not develop a fever with this round of chemotherapy.
Please thank God that our day at the hospital on Tuesday went as smoothly and seemlessly as can be expected.
Please give thanks for all of the help that we continue to receive, both from professionals and from friends.
Please thank God for Anna's continued good spirits and improved strength.
Please give thanks that Kate has the opportunity to go to Camp Luther this weekend.
Please thank God that Ethan is young enough to not remember these days.
Requests
Please pray that we are able to experience some good family moments in the coming weeks.
Please pray that Kate and Grandma have a safe and fun time at Grandkids' Camp this weekend.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all who are working with and for our family.
Thank you for all of your prayers and support.
She still has her cough, but that is to be expected. Her body stopped fighting the cold about Monday when her white blood cells disappeared and it hasn't had a chance to really start fighting it again until today. But the cough didn't get much worse; that's good.
Anna became symptomatic for anemia on Monday even though her red blood cell counts weren't quite as low as they had been previously, so her clinic visit on Tuesday turned into a blood transfusion day. We (including Anna) were all glad for that, however, because it meant that Anna felt a whole lot better on Wednesday.
Because Anna ended up having her blood drawn and tested on Monday and Tuesday, we opted for her normal Thursday home nursing visit (during which her blood counts are checked again; they're always checked at least twice a week) to happen on Friday. Low and behold, by Friday she had white blood cells again! That means that she no longer needed her GCSF injection in the evening and we could remove the under-the-skin catheter used to inject it.
I guess I misspoke early on in this chemotherapy process when I said that Anna's baseline robust immune system would not count for much. What I should have said was that it doesn't count for much for about 48 hours, but when it bounces back, it does so with a purpose.
Not that any of us have any control over that, though.
I also misspoke last week when I said that Kate was easy to please. She has been struggling lately. Some of the things that she has said have hurt my heart; not my feelings, but my heart. Granted, she has been tired, hungry, and/or emotional when she makes these comments, but I'm guessing that there is some truth behind what she says.
She is our child these days who is not the toddler who needs to be watched continuously, nor is she the rehab patient who needs many of her daily cares done for her. She is the most independent of the three of them and, as such, often gets lost in the middle. Our family unit doesn't seem to be as special to her as it once was.
Before Anna entered kindergarten we read a wonderful book called Going Public that gave us a much needed different perspective about sending our kids to public schools. To be honest, the world is a scary place and we were afraid of the influences that the outside world would have on our children.
The whole idea behind the book is how parents and families can and will be the main teachers and influences for their kids; the importance of family was key. The book also explained how you can use public schools as an extended learning opportunity for your kids. For example, a public school is a great place for kids to start trying out all of the problem solving skills we've been teaching them at home, especially in terms of dealing with other people. The book also emphasized how you can keep your family's core faith values even while navigating the public school years. It's a great book; I highly recommend it.
But this summer has been about survival for our family. We did not even try to make a list of fun activities to do as a family. In fact, the only "tradition" that we have managed to keep intact has been eating dinner together, and even that can be interrupted by a disruptive toddler or the needs of a cancer patient.
So Kate is struggling. She is old enough to remember the fun of summers past and also old enough to miss those times. She also misses having the big sister Anna who could run and jump and climb with her, or could even just sit on the floor to play with her.
This weekend Kate is at Camp Luther with grandma for Grandkids' Camp, something that Anna did when she was 5. We're hoping that not only will Kate have a wonderful time, but that she will come home wanting to be home with us again. Having her away from us for just a day now makes us all miss her smiles, laughter, and energy terribly.
We have also chosen to be intentional about this issue, too. We have explained to our kids that we are each going to pick one special activity that we would like to do as a family before school starts. Granted, these activities will not include trips to waterparks or visits to grandparents' homes or even leaving our yard necessarily, but at least they will, hopefully, be something memorable for us to do as a family this summer that doesn't involve medical lingo. So far the requests are very, very basic. I hope we can make them happen.
Time for prayers
Thanksgiving
Please give thanks that Anna did not develop a fever with this round of chemotherapy.
Please thank God that our day at the hospital on Tuesday went as smoothly and seemlessly as can be expected.
Please give thanks for all of the help that we continue to receive, both from professionals and from friends.
Please thank God for Anna's continued good spirits and improved strength.
Please give thanks that Kate has the opportunity to go to Camp Luther this weekend.
Please thank God that Ethan is young enough to not remember these days.
Requests
Please pray that we are able to experience some good family moments in the coming weeks.
Please pray that Kate and Grandma have a safe and fun time at Grandkids' Camp this weekend.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all who are working with and for our family.
Thank you for all of your prayers and support.
Monday, August 4, 2014
Stories and pictures
Back to the original purpose of this blog ... to keep some memories of when our kids are little. Here are a few of those stories and pictures to help us remember these days.
Ethan ... He's our silly boy who is definitely developing his own personality. He loves to get a laugh, especially with the things he says now. Reminds me a little of Matt :) Now that he can talk, we are working hard with him on using the right words (and even the right tone) when he wants something, instead of just whining about it; we really, really don't like it when our kids whine at us. We like to train them early.
A few of his fun phrases these days are "shwing higher" which means "I want to swing!" Others are, "I don't know" or "nope" when we ask him a question. He congratulates himself by saying "good job" after he's done something of which he is proud. He's quite the copy cat with his sisters and parents so we have to be careful of what we say. He also started singing the family favorite "Daddy, come home" song that is often sung around the time Matt gets home from work.
Ethan has discovered the novelty of light switches. He can't reach them without a stool or chair yet, however.
Over the weekend, Ethan and Kate played for a long time with the hose. Our little boy loved having control of the water and enjoyed making "rain" for Kate. Later in the day he told Matt "more hose please Daddy" when they were outside together.
Finally, Ethan likes to sit on the commode. We try to discourage him from playing with his trucks and cars on and in this piece of equipment, but it's hard not to smile when he climbs up and buckles himself in.
Kate ... She is quite the resilient kid. Last time with Anna's chemo, she ended up sleeping in the basement a few nights during the overnight hydration period. She was in the midst of Camp Kindergarten; the extra beeping and overnight diaper changes were enough of a disruption to make the basement seem like a good idea, as long as mom slept down there, too. This time she opted to stay in their shared room, but told me that when she starts school, she'll probably want to sleep downstairs when Anna has the overnight hydration to make sure she gets a good night's rest.
On Friday afternoon I convinced Kate that she should help me with the dishes; she actually didn't need much convincing. She's a great kid.
Our five year old is hungry all the time these days, in spite of the fact that it seems as if she eats all day long. Her favorites are cucumbers, cherry tomatoes, green beans and just about anything else stolen straight from the garden. She can't wait until the sweet corn is ripe.
One morning I was working on getting Anna up and ready when I heard Ethan waking up. I asked Kate to go in his room and keep him company until Matt or I had a chance to get him out of his crib. This is how I found them.
Over the weekend Kate and I ran some errands just the two of us. I talked with her about how Matt might take some time off of work at the end of the month; she was disappointed at the time because she had wanted to play with Matt all day instead of going with me to the store. When she heard about Matt being home later on, she became excited and told me that "maybe Daddy and I could go somewhere together". I told her that we weren't doing a vacation this summer, to which she replied, "No, not that. I just thought we could go on a field trip to a park or something!" I'm happy that she is so easy to please.
This is how we found Anna and Matt when we got back from our errands.
Anna ... For the most part, Anna is incredibly cheerful and grateful. If she is not, it usually means that something is not quite right with her physically. I get the sense that she brings a lot of laughter and cheer to those with whom she works, at the hospital and beyond. She is considered one of the "easy" patients these days on P4, both for the nurses and the child life specialists. Ever since her initial discharge, when her hospital therapists and/or nurses come to her room, they almost always end up leaving with more laughter and smiles on their faces than they had when they came in.
Often times when she plays with playdoh or other activities, she will say "Grow, muscles, grow!" If she feels a stretch in her arms or legs while playing, she'll comment about how her therapists would like that because it means she is becoming more flexible.
On Sunday, Anna helped me use our slicer to prepare a whole bucket full of cucumbers for another batch of freezer pickles. She felt so good about being helpful again; she was already coming up with ways she could help out around the house.
At night we always read books, sing songs, and say prayers with our kids before bed. Usually one of us parents takes Ethan, while the other one puts the girls to bed. Lately I've been too tired after I'm done reading to the girls and will ask them who is going to pray and who will sing songs. Kate usually refuses both, but Anna will pick up the responsibility willingly. Last week, she thanked God for her therapists who are helping her get stronger and she also thanked God for things like commodes and standers. She's a pretty cool kid.
Over the weekend she also said "I wish I didn't get brain cancer." That one threw me for a loop. In this whole process, she has never, ever said those words to me. I said something vague at the time, but revisited her comment the next day. One of my favorite parenting phrases I learned in the past few years is "That's interesting; tell me more." So I tried it. She said she didn't want to have brain cancer because she wanted to be playing in the pool with her family. We can deal with that. We have some plans in the works to get her into the pool before the end of the summer, but a few details need to be hashed out first. Plus, I told her that because of her cancer, she has had the opportunity to meet a lot of really interesting, really nice people in the last six months; not many 7 year olds can say that they have as many adult friends as she does :)
But please don't think it's all sunshine and roses here. Anna is still fighting her cold. It's just a virus, but she has a cough with it now. The home health nurse says her lungs are clear, and Anna does not have a fever. However, this is uncharted territory for our family. We don't exactly know how Anna's body will react to having a cold during her low blood counts time. Plus, because of her cough, among other things, no one in our house slept very well after about 1:30 a.m. on Sunday night. Usually our kids are pretty good sleepers, but not that night.
Please pray for us this week, especially. The low blood counts week is scarier in our house than the chemo week; many more things are uncertain. Thanks.
Ethan ... He's our silly boy who is definitely developing his own personality. He loves to get a laugh, especially with the things he says now. Reminds me a little of Matt :) Now that he can talk, we are working hard with him on using the right words (and even the right tone) when he wants something, instead of just whining about it; we really, really don't like it when our kids whine at us. We like to train them early.
A few of his fun phrases these days are "shwing higher" which means "I want to swing!" Others are, "I don't know" or "nope" when we ask him a question. He congratulates himself by saying "good job" after he's done something of which he is proud. He's quite the copy cat with his sisters and parents so we have to be careful of what we say. He also started singing the family favorite "Daddy, come home" song that is often sung around the time Matt gets home from work.
Ethan has discovered the novelty of light switches. He can't reach them without a stool or chair yet, however.
Over the weekend, Ethan and Kate played for a long time with the hose. Our little boy loved having control of the water and enjoyed making "rain" for Kate. Later in the day he told Matt "more hose please Daddy" when they were outside together.
Finally, Ethan likes to sit on the commode. We try to discourage him from playing with his trucks and cars on and in this piece of equipment, but it's hard not to smile when he climbs up and buckles himself in.
Kate ... She is quite the resilient kid. Last time with Anna's chemo, she ended up sleeping in the basement a few nights during the overnight hydration period. She was in the midst of Camp Kindergarten; the extra beeping and overnight diaper changes were enough of a disruption to make the basement seem like a good idea, as long as mom slept down there, too. This time she opted to stay in their shared room, but told me that when she starts school, she'll probably want to sleep downstairs when Anna has the overnight hydration to make sure she gets a good night's rest.
On Friday afternoon I convinced Kate that she should help me with the dishes; she actually didn't need much convincing. She's a great kid.
Our five year old is hungry all the time these days, in spite of the fact that it seems as if she eats all day long. Her favorites are cucumbers, cherry tomatoes, green beans and just about anything else stolen straight from the garden. She can't wait until the sweet corn is ripe.
One morning I was working on getting Anna up and ready when I heard Ethan waking up. I asked Kate to go in his room and keep him company until Matt or I had a chance to get him out of his crib. This is how I found them.
Over the weekend Kate and I ran some errands just the two of us. I talked with her about how Matt might take some time off of work at the end of the month; she was disappointed at the time because she had wanted to play with Matt all day instead of going with me to the store. When she heard about Matt being home later on, she became excited and told me that "maybe Daddy and I could go somewhere together". I told her that we weren't doing a vacation this summer, to which she replied, "No, not that. I just thought we could go on a field trip to a park or something!" I'm happy that she is so easy to please.
This is how we found Anna and Matt when we got back from our errands.
Anna ... For the most part, Anna is incredibly cheerful and grateful. If she is not, it usually means that something is not quite right with her physically. I get the sense that she brings a lot of laughter and cheer to those with whom she works, at the hospital and beyond. She is considered one of the "easy" patients these days on P4, both for the nurses and the child life specialists. Ever since her initial discharge, when her hospital therapists and/or nurses come to her room, they almost always end up leaving with more laughter and smiles on their faces than they had when they came in.
Often times when she plays with playdoh or other activities, she will say "Grow, muscles, grow!" If she feels a stretch in her arms or legs while playing, she'll comment about how her therapists would like that because it means she is becoming more flexible.
On Sunday, Anna helped me use our slicer to prepare a whole bucket full of cucumbers for another batch of freezer pickles. She felt so good about being helpful again; she was already coming up with ways she could help out around the house.
At night we always read books, sing songs, and say prayers with our kids before bed. Usually one of us parents takes Ethan, while the other one puts the girls to bed. Lately I've been too tired after I'm done reading to the girls and will ask them who is going to pray and who will sing songs. Kate usually refuses both, but Anna will pick up the responsibility willingly. Last week, she thanked God for her therapists who are helping her get stronger and she also thanked God for things like commodes and standers. She's a pretty cool kid.
Over the weekend she also said "I wish I didn't get brain cancer." That one threw me for a loop. In this whole process, she has never, ever said those words to me. I said something vague at the time, but revisited her comment the next day. One of my favorite parenting phrases I learned in the past few years is "That's interesting; tell me more." So I tried it. She said she didn't want to have brain cancer because she wanted to be playing in the pool with her family. We can deal with that. We have some plans in the works to get her into the pool before the end of the summer, but a few details need to be hashed out first. Plus, I told her that because of her cancer, she has had the opportunity to meet a lot of really interesting, really nice people in the last six months; not many 7 year olds can say that they have as many adult friends as she does :)
But please don't think it's all sunshine and roses here. Anna is still fighting her cold. It's just a virus, but she has a cough with it now. The home health nurse says her lungs are clear, and Anna does not have a fever. However, this is uncharted territory for our family. We don't exactly know how Anna's body will react to having a cold during her low blood counts time. Plus, because of her cough, among other things, no one in our house slept very well after about 1:30 a.m. on Sunday night. Usually our kids are pretty good sleepers, but not that night.
Please pray for us this week, especially. The low blood counts week is scarier in our house than the chemo week; many more things are uncertain. Thanks.
Subscribe to:
Posts (Atom)