Anna had her quick brain MRI today, then an appointment with her neurosurgeon (who was out of town last week). His opinion is that everything in terms of Anna's ventricles appear to be stable at this point so her next round of chemo is set to begin tomorrow. She and I will head back to the hospital early Tuesday morning; Anna will stay there through Wednesday evening.
A few other random Mischnick family facts ...
Kate is participating in Camp Kindergarten summer school this week and next week in preparation for entering kindergarten this coming fall. Where has the time gone?! She had a few tears this morning when Matt dropped her off, but was fine as soon as she saw her buddy from preschool. She seemed pretty excited to return again tomorrow.
We have had a lot of cloudy, rainy weather here lately, including our fair share of severe weather. We didn't realize quite how much we hadn't seen the sun until one evening a few weeks back when we took a walk after dinner and Ethan was afraid of his own shadow, literally. We struggled not to laugh while he danced around trying to get away from his shadow, but he was petrified to stand whenever his feet touched his own shadow's feet. It took a few days, but we're definitely past this fear now. On Anna's birthday walk, he was playing with his shadow :)
Ethan's language is continuing to explode. Some of our favorites these days are "here go" (here you go - when he hands you something), "mah tuhn" (my turn), "shoe on" (which means he wants to go outside), "mokyko" (motorcycle), and "opain" (airplane). He is also pretty good at imitating snoring. In our home right now people are often tired (Anna ... Mommy ...) and we sometimes show this by closing our eyes and pretending to snore. Ethan then likes to pretend also by saying our name and then making the snoring noise :)
Anna got a good laugh out of her neurosurgeon today by telling him a joke. If you know Dr. Iskandar at all, this will make more sense. If not, it won't, but I want to record it for my own memory.
Knock knock.
Who's there?
Benny.
Benny who?
Benny long time no see.
Time for prayers
Thanksgiving
Please give thanks that Anna is cleared for this round of chemotherapy.
Please thank God for all of the continued help and support our family is receiving.
Please give thanks for strength, wisdom, peace, patience, and guidance for all involved in our life right now.
Please thank God for birthday celebrations.
Please give thanks for friendships, new and old.
Requests
Please continue to pray for physical, mental, emotional, and spiritual strength and wisdom for Matt and me.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care givers both within and without the hospital system.
Please continue to pray for Kate and Ethan as they deal with Anna's illness in their own way.
Thanks, as always, for your continued prayers and support.
Monday, June 30, 2014
Saturday, June 28, 2014
Happy Birthday, Anna!
According to Anna, she had a good 7th birthday :)
Our kids' birthdays tend to be emotional times for me, and this one was no different. In fact, it was probably a bit more emotional than normal. I was struggling with how to share the day on this blog and decided it was probably best to just share it like it was, but maybe without all of the nitty-gritty details.
Anna woke up to a few family members singing Happy Birthday, in addition to finding "7s" hidden around the house, a fun tradition we stole from another family. She opened cards and gifts from family in the morning and played with Kate for awhile at the table after the rest of us had some breakfast.
I was on my own with the kids through lunch and the start of naps, which was hard on many different levels. Those people who have been in our home in the last few months can attest to the fact that mealtimes and therapy visits can be especially tricky times some days, so doing it on my own on Anna's birthday had some rougher moments, but we made it through.
The kids and I took a walk through the neighborhood in the morning, the first I have attempted with all three on my own since Anna has been home. It was slow, but relatively successful. We were home in plenty of time for Anna's occupational therapist to come for a later-than-normal visit. So the kids wanted to play the piano together for a bit.
Not very musical, but cute, nonetheless :)
The lateness of the visit meant that it coincided with Ethan and Kate's (and my) lunch time. So we did lunch in shifts, sort of, while the therapist played a few games with Anna.
Once she left, Anna went down for a nap, I put Ethan down for a nap, and I lay down to rest for a bit while Kate played.
Matt came home early from work and Kate followed him around while I got a bit of work done before the other two woke up. Then I managed to get a quick swim in the pool with Kate and Ethan before some friends came over to play in the afternoon.
Actually, the family who came is one with whom we often meet in McFarland; we have a few friend families in this category. (Mom = my friend; oldest daughter = Anna's friend; next child = son who is Kate's age ... There are a lot of boys in Kate's age group in McFarland.)
Then we had dinner as a family with Anna's favorite foods, even though we knew she wouldn't want to actually eat any of them, plus pumpkin cake for dessert.
She was very tired at the end of the day. When all was said and done, it wasn't a very different day from the other days we had earlier in the week, but Anna told me that it was a good birthday.
Anna enjoyed all of the birthday cards that she received throughout the week and she was SO proud of the money she raised through the fundraising website. A week ago at the hospital and again last Monday she would just beam as she described her plans for her birthday whenever anyone asked her. She can't wait to go again on Monday so she can bring along some of the cash she got to donate as well :)
Happy 7th Birthday to our strong, courageous, faithful, kind, amazing daughter. May God's light continue to shine through your life.
Our kids' birthdays tend to be emotional times for me, and this one was no different. In fact, it was probably a bit more emotional than normal. I was struggling with how to share the day on this blog and decided it was probably best to just share it like it was, but maybe without all of the nitty-gritty details.
Anna woke up to a few family members singing Happy Birthday, in addition to finding "7s" hidden around the house, a fun tradition we stole from another family. She opened cards and gifts from family in the morning and played with Kate for awhile at the table after the rest of us had some breakfast.
I was on my own with the kids through lunch and the start of naps, which was hard on many different levels. Those people who have been in our home in the last few months can attest to the fact that mealtimes and therapy visits can be especially tricky times some days, so doing it on my own on Anna's birthday had some rougher moments, but we made it through.
The kids and I took a walk through the neighborhood in the morning, the first I have attempted with all three on my own since Anna has been home. It was slow, but relatively successful. We were home in plenty of time for Anna's occupational therapist to come for a later-than-normal visit. So the kids wanted to play the piano together for a bit.
Not very musical, but cute, nonetheless :)
The lateness of the visit meant that it coincided with Ethan and Kate's (and my) lunch time. So we did lunch in shifts, sort of, while the therapist played a few games with Anna.
Once she left, Anna went down for a nap, I put Ethan down for a nap, and I lay down to rest for a bit while Kate played.
Matt came home early from work and Kate followed him around while I got a bit of work done before the other two woke up. Then I managed to get a quick swim in the pool with Kate and Ethan before some friends came over to play in the afternoon.
Actually, the family who came is one with whom we often meet in McFarland; we have a few friend families in this category. (Mom = my friend; oldest daughter = Anna's friend; next child = son who is Kate's age ... There are a lot of boys in Kate's age group in McFarland.)
Then we had dinner as a family with Anna's favorite foods, even though we knew she wouldn't want to actually eat any of them, plus pumpkin cake for dessert.
She was very tired at the end of the day. When all was said and done, it wasn't a very different day from the other days we had earlier in the week, but Anna told me that it was a good birthday.
Anna enjoyed all of the birthday cards that she received throughout the week and she was SO proud of the money she raised through the fundraising website. A week ago at the hospital and again last Monday she would just beam as she described her plans for her birthday whenever anyone asked her. She can't wait to go again on Monday so she can bring along some of the cash she got to donate as well :)
Happy 7th Birthday to our strong, courageous, faithful, kind, amazing daughter. May God's light continue to shine through your life.
Tuesday, June 24, 2014
Flexibility and Patience
Last summer the girls and I decided that with an infant in our family, the word for the summer was "flexibility". Often times plans would change at the last minute because Ethan's needs changed at the last minute. I'm glad the family was well versed in the idea of flexibility prior to Anna's diagnosis.
After today's experiences, I asked Anna to remind me of "patience" every time we entered the hospital from now on.
Anna came home tonight without her chemo treatment. She had a quick brain MRI at noon today prior to any chemo starting to assess her need for a shunt. To make a long story short, the results were inconclusive so it was decided to wait a week, have another quick brain on Monday, see where things stand, and then either do a shunt procedure next week or chemo on Tuesday and Wednesday.
Anna and I were at the hospital from 8 until 5. We started the day not knowing what it might hold, but not having any thought that we might both be coming home at the end of the day. Lots of plans and preparations have been made for the remainder of the week in our home in preparation for this chemo treatment.
A lot of conversations happened within the hospital today about Anna, the ventricles in her brain, her chemo treatments, etc., but most of these happened outside of Anna's hospital room. Our nurse today put up with a lot of impatience from me. At least we came prepared with Anna's math workbook, some reading practice, Uno, Skipbo, and the ipad for distraction.
But we were all home for dinner tonight, Kate and Ethan had a fun time with the family who came to watch them today, and we are all sleeping at home tonight. So ... we will enjoy those things while we can.
After today's experiences, I asked Anna to remind me of "patience" every time we entered the hospital from now on.
Anna came home tonight without her chemo treatment. She had a quick brain MRI at noon today prior to any chemo starting to assess her need for a shunt. To make a long story short, the results were inconclusive so it was decided to wait a week, have another quick brain on Monday, see where things stand, and then either do a shunt procedure next week or chemo on Tuesday and Wednesday.
Anna and I were at the hospital from 8 until 5. We started the day not knowing what it might hold, but not having any thought that we might both be coming home at the end of the day. Lots of plans and preparations have been made for the remainder of the week in our home in preparation for this chemo treatment.
A lot of conversations happened within the hospital today about Anna, the ventricles in her brain, her chemo treatments, etc., but most of these happened outside of Anna's hospital room. Our nurse today put up with a lot of impatience from me. At least we came prepared with Anna's math workbook, some reading practice, Uno, Skipbo, and the ipad for distraction.
But we were all home for dinner tonight, Kate and Ethan had a fun time with the family who came to watch them today, and we are all sleeping at home tonight. So ... we will enjoy those things while we can.
Sunday, June 22, 2014
Removing the layers
Anna's case is a complicated one; we were told that in the hospital several times. Many of the layers have been removed in the past two months.
Layer #1 removed ... PRES ... that cleared up in a few weeks with no lingering effects besides the deconditioning of having slept for about a week.
Layer #2 removed ... shunt infection ... that also cleared up in a few weeks. The lingering effects of that were related to having a 103+ fever for more than a week; her muscles were really, really tight from being curled up in the fetal position for a week. However, a positive lingering effect is that she still does not need a shunt. From a neurosurgery standpoint, Anna "got lucky" in this regard.
Layer #3 is being removed ... short term radiation side effects ... these are continuing to clear up. Many of them have already passed, but some of them will take a few more weeks and/or months. For example, Anna still tells us that her spit tastes gross, thus she does not eat anything orally yet. Her speech therapist at the hospital says this is a common complaint of those who have undergone similar kinds of radiation therapy and will take awhile to heal.
That leaves Anna with the continued chemotherapy and medulloblastoma. The effects of the chemotherapy drugs wax and wane, but will continue to take their toll on Anna's body until she is done with her treatments, hopefully in December, but possibly January.
However, as every "after office visit summary" reminds us, Anna's primary diagnosis is medulloblastoma. Everything that is wrong ultimately points back to this disease. I'm trying to learn more about the disease itself, but so far my research is only giving me the basic information. In the next few weeks, I'm hoping to dig deeper and get more details so that I can gain a better understanding. At this point, though, I'll share what I know.
When Anna was initially diagnosed, her medullablastoma was already considered in the high risk category, meaning it had already spread outside of the initial tumor. In fact, it had spread to many other parts of her brain and spinal cord. Then it continued to grow and spread for three weeks before her treatments began. Basically, at the end of February she had a lot of disease throughout her entire central nervous system.
Her treatments have eliminated much of the cancer cells, but the disease has left its mark. From my understanding, the neurological pathways still exist throughout Anna's central nervous system, both from her brain to her body and within her brain. However, the disease affected those pathways making it hard for the messages to get sent, at least until the treatments began.
Once the cancer cells began to die, the messages could again get sent, but it took a lot of work, at least at first, for Anna's system to send messages throughout her central nervous system. I liken it to the stages of a newborn's development, though not necessarily as extreme. First the basic sensory systems need to get acclimated, then motor systems, cognitive, social, etc.
As a specific example, Anna had an ophthalmology appointment the other week. We learned that her eyes are perfectly healthy. However, her vision is not quite right because of the disease. First, she sees double because one of the muscles that pulls her left eye straight is still weak; this should correct itself in the next 3-6 months. Second, when Anna gets tired or tries to strain her eyes by looking at the edge of her field of vision, her vision gets blurry because her eyes literally get fatigued and can't focus anymore. They haven't yet relearned how to handle this skill. Her vision is much, much better in this regard than it was back in March, but it may take months or years for it to be corrected completely.
The main difference between Anna and a newborn, however, is that with Anna all of the learning has already taken place; her brain and body just needs to be reminded and get stronger. As with any learning and strengthening, the more it is practiced, the faster a skill becomes. And much of the basics already happened in the hospital. But the effort required on Anna's body's part is fatiguing. Not tiring, but fatiguing, literally. Anything that her brain has not encountered since her treatments began, whether it's physical, emotional, cognitive, or social, seems to drain her more quickly than it would someone else her age. She takes a nap, every day, and she needs to.
But she's still a smart cookie. After we learned that there's nothing wrong with her eyes, I pulled out the books and we started reading again. Granted, she had four months off of reading and definitely took a backslide in those skills. But we'll work on that. She's working through her math book from the second half of the school year, and she loves it. Hopefully she'll be able to get through that before she begins second grade in the fall. I taught her the game SkipBo the other day and she picked up on the rules in about 5 minutes.
So what does this all mean for Anna? Well, gone are the days when we could take family trips up to Devil's Lake and hike the West Bluff Trail with Anna only getting tired for the last 10 minutes. (Actually, gone are the days when we could take a family field trip to Devil's Lake at all right now; logistically, it just wouldn't work.) Gone are the days when we would go sledding as a family and she would be the one running up the hill again and again while her sister sat at the bottom because she was too tired. And gone are the days when Anna would be one of the top kids academically in her class because she probably won't be able to handle full days of school for awhile.
Although we believe that Anna will walk again, she just may not have the kind of strength and stamina required for the rest of the activities, at least not for a long time. She's still capable of learning and she still loves to learn, but since she tires more quickly than most kids, she can't spend as much time learning new information as another kid her age.
We are told that as Anna's body heals her strength and stamina will increase, but no ones knows to what degree or how long it will take. In fact, no one will have any kind of clue until her treatments are completely over.
Do we ever feel sad about this? Of course. Are we ever mad? You bet. Do we ever long for our days of past years? Well, I'd be lying if I said we didn't. But we try not to dwell on those feelings.
In the end, the limitations don't matter. When Matt and I thought that we were saying good-bye to Anna here on Earth and sending her to be with Jesus, what made us most sad was not that we wouldn't see her again until Heaven. What made us most sad was that Kate and Ethan would be losing time to make memories with their big sister. It broke our hearts that Kate wouldn't have Anna around anymore to be her friend and role model and that Ethan wouldn't be old enough to have any memories of Anna.
For now, at least, Ethan and Kate have the opportunity to have Anna with them every single day. They are blessed to have one of the best big sisters that any kid could have. Whatever Anna's abilities may be, Kate and Ethan are better people to have her in their lives.
Time for prayers
Thanksgiving
Please give thanks for a few quiet days at home in preparation for a crazy week.
Please thank God for the continued help and support our family is receiving.
Please give thanks for a day with some sunshine today after a whole week of clouds and rain.
Please thank God for Anna's upcoming 7th birthday.
Please give thanks for 12 years of marriage that Matt and I are celebrating today.
Requests
Please ask God to be with Anna as she experiences her second round of chemotherapy, physically, spiritually, and emotionally.
Please pray for all of Anna's care providers in the coming week.
Please pray for strength and wisdom in the coming week as we balance life in and out of the hospital for a few days again.
Please pray for Kate and Ethan as they will have different care givers again; our helper had a previous commitment this coming week.
On a final note, when Matt and I were married twelve years ago, only God knew what was in store for us in our marriage. Looking ahead, only God knows what the rest of our journey will bring. However, Matt and I have said multiple times that although neither one of us wants to be on this ride, we would rather be on it together than with anyone else; we work pretty well as a team :)
Layer #1 removed ... PRES ... that cleared up in a few weeks with no lingering effects besides the deconditioning of having slept for about a week.
Layer #2 removed ... shunt infection ... that also cleared up in a few weeks. The lingering effects of that were related to having a 103+ fever for more than a week; her muscles were really, really tight from being curled up in the fetal position for a week. However, a positive lingering effect is that she still does not need a shunt. From a neurosurgery standpoint, Anna "got lucky" in this regard.
Layer #3 is being removed ... short term radiation side effects ... these are continuing to clear up. Many of them have already passed, but some of them will take a few more weeks and/or months. For example, Anna still tells us that her spit tastes gross, thus she does not eat anything orally yet. Her speech therapist at the hospital says this is a common complaint of those who have undergone similar kinds of radiation therapy and will take awhile to heal.
That leaves Anna with the continued chemotherapy and medulloblastoma. The effects of the chemotherapy drugs wax and wane, but will continue to take their toll on Anna's body until she is done with her treatments, hopefully in December, but possibly January.
However, as every "after office visit summary" reminds us, Anna's primary diagnosis is medulloblastoma. Everything that is wrong ultimately points back to this disease. I'm trying to learn more about the disease itself, but so far my research is only giving me the basic information. In the next few weeks, I'm hoping to dig deeper and get more details so that I can gain a better understanding. At this point, though, I'll share what I know.
When Anna was initially diagnosed, her medullablastoma was already considered in the high risk category, meaning it had already spread outside of the initial tumor. In fact, it had spread to many other parts of her brain and spinal cord. Then it continued to grow and spread for three weeks before her treatments began. Basically, at the end of February she had a lot of disease throughout her entire central nervous system.
Her treatments have eliminated much of the cancer cells, but the disease has left its mark. From my understanding, the neurological pathways still exist throughout Anna's central nervous system, both from her brain to her body and within her brain. However, the disease affected those pathways making it hard for the messages to get sent, at least until the treatments began.
Once the cancer cells began to die, the messages could again get sent, but it took a lot of work, at least at first, for Anna's system to send messages throughout her central nervous system. I liken it to the stages of a newborn's development, though not necessarily as extreme. First the basic sensory systems need to get acclimated, then motor systems, cognitive, social, etc.
As a specific example, Anna had an ophthalmology appointment the other week. We learned that her eyes are perfectly healthy. However, her vision is not quite right because of the disease. First, she sees double because one of the muscles that pulls her left eye straight is still weak; this should correct itself in the next 3-6 months. Second, when Anna gets tired or tries to strain her eyes by looking at the edge of her field of vision, her vision gets blurry because her eyes literally get fatigued and can't focus anymore. They haven't yet relearned how to handle this skill. Her vision is much, much better in this regard than it was back in March, but it may take months or years for it to be corrected completely.
The main difference between Anna and a newborn, however, is that with Anna all of the learning has already taken place; her brain and body just needs to be reminded and get stronger. As with any learning and strengthening, the more it is practiced, the faster a skill becomes. And much of the basics already happened in the hospital. But the effort required on Anna's body's part is fatiguing. Not tiring, but fatiguing, literally. Anything that her brain has not encountered since her treatments began, whether it's physical, emotional, cognitive, or social, seems to drain her more quickly than it would someone else her age. She takes a nap, every day, and she needs to.
But she's still a smart cookie. After we learned that there's nothing wrong with her eyes, I pulled out the books and we started reading again. Granted, she had four months off of reading and definitely took a backslide in those skills. But we'll work on that. She's working through her math book from the second half of the school year, and she loves it. Hopefully she'll be able to get through that before she begins second grade in the fall. I taught her the game SkipBo the other day and she picked up on the rules in about 5 minutes.
So what does this all mean for Anna? Well, gone are the days when we could take family trips up to Devil's Lake and hike the West Bluff Trail with Anna only getting tired for the last 10 minutes. (Actually, gone are the days when we could take a family field trip to Devil's Lake at all right now; logistically, it just wouldn't work.) Gone are the days when we would go sledding as a family and she would be the one running up the hill again and again while her sister sat at the bottom because she was too tired. And gone are the days when Anna would be one of the top kids academically in her class because she probably won't be able to handle full days of school for awhile.
Although we believe that Anna will walk again, she just may not have the kind of strength and stamina required for the rest of the activities, at least not for a long time. She's still capable of learning and she still loves to learn, but since she tires more quickly than most kids, she can't spend as much time learning new information as another kid her age.
We are told that as Anna's body heals her strength and stamina will increase, but no ones knows to what degree or how long it will take. In fact, no one will have any kind of clue until her treatments are completely over.
Do we ever feel sad about this? Of course. Are we ever mad? You bet. Do we ever long for our days of past years? Well, I'd be lying if I said we didn't. But we try not to dwell on those feelings.
In the end, the limitations don't matter. When Matt and I thought that we were saying good-bye to Anna here on Earth and sending her to be with Jesus, what made us most sad was not that we wouldn't see her again until Heaven. What made us most sad was that Kate and Ethan would be losing time to make memories with their big sister. It broke our hearts that Kate wouldn't have Anna around anymore to be her friend and role model and that Ethan wouldn't be old enough to have any memories of Anna.
For now, at least, Ethan and Kate have the opportunity to have Anna with them every single day. They are blessed to have one of the best big sisters that any kid could have. Whatever Anna's abilities may be, Kate and Ethan are better people to have her in their lives.
Time for prayers
Thanksgiving
Please give thanks for a few quiet days at home in preparation for a crazy week.
Please thank God for the continued help and support our family is receiving.
Please give thanks for a day with some sunshine today after a whole week of clouds and rain.
Please thank God for Anna's upcoming 7th birthday.
Please give thanks for 12 years of marriage that Matt and I are celebrating today.
Requests
Please ask God to be with Anna as she experiences her second round of chemotherapy, physically, spiritually, and emotionally.
Please pray for all of Anna's care providers in the coming week.
Please pray for strength and wisdom in the coming week as we balance life in and out of the hospital for a few days again.
Please pray for Kate and Ethan as they will have different care givers again; our helper had a previous commitment this coming week.
On a final note, when Matt and I were married twelve years ago, only God knew what was in store for us in our marriage. Looking ahead, only God knows what the rest of our journey will bring. However, Matt and I have said multiple times that although neither one of us wants to be on this ride, we would rather be on it together than with anyone else; we work pretty well as a team :)
Thursday, June 19, 2014
Updates
Anna's hospital stay was exactly 24 hours, her shortest overnight one yet :) However, I was about to go nuts during that short period dealing with "hospital time" again; I don't know how we did it for three whole months.
Medically speaking, Anna's g-tube placement went just fine. However, it was still surgery on her abdominal muscles and she's just a kid, so she was in a bit of pain and pretty grumpy about the whole ordeal for the first 36 hours or so. On top of the actual surgery, throw in a totally mixed up schedule for a kid who thrives on routines, plus a week of nights with overnight thunderstorms, and you've got a tired family here.
But when we got home a little after noon on Tuesday, I was trying hard to think of the positives while Anna was crying herself to sleep for a nap. Here were a few big ones ... #1 - she was throwing a fit in the privacy of our own home in her own bed, and #2 - we did not have to worry about her screaming to the point of her throwing up and having an ng-tube coming out (which had happened previously).
As a random side note, Anna learned what happens when the tornado sirens go off in the middle of the night at a children's hospital on Monday night. For patients who are able, they are moved into the bathrooms in their rooms. For the rest of the patients, they are wheeled in their beds into the hallways until the warning is passed. Apparently, Anna was wide awake and quite chatty with the nurses when this happened. (We were at home in the basement with Kate and Ethan for an hour and a half listening to the weather radio go off again and again and again; we don't sleep at the hospital anymore unless we absolutely must.)
Every day this week has been a bit better for Anna, but she's still sore at times, especially if she's asked to use those tender abs. At first we were told she'd be back to her normal pre-surgery activity in a few days, but her therapists today told us realistically it would be more like a week. However, today at noon Miss Anna voluntarily opted out of her Tylenol and she hasn't taken any of the narcotics since it upset her stomach with the first dose post-hospital stay, so who knows?
Next Tuesday and Wednesday will be Anna's next round of in-patient chemotherapy. There were so many other factors with the first round that we're not quite sure if we can expect the same kind of reaction from her body with the second round.
As for the rest of us, we're doing our best to make this work. Things seem to be working well with our helper; Kate and Ethan like her a lot so that's good :) And she does whatever I ask of her, and more.
Last Friday was one of the first days in a long, long time that we didn't have anyone scheduled to come to our house and we didn't have anywhere that we had to be, so we did a Mommy and kids field trip to Olbrich Gardens. Fun times. I miss being able to do activities like this with our kids, but at least now I know that it's possible to do them every so often. We'll be able to make these kinds of memories again, just in a different way.
Saturday morning I even managed to take all three kids to Pick n' Save in town to grab a few groceries. Ethan rode in the cart and Kate pushed Anna in the wheelchair. I think she only ran into someone else's cart one time ... oops.
Time for prayers
Thanksgiving
Please give thanks for that we were able to find such a great fit in our family helper; I still need to ask her if it's okay to share her name!
Please thank God that Anna's surgery went so smoothly.
Please give thanks for the continued support that we are receiving as a family.
Please thank God for keeping friends and family safe in the recent severe weather.
Please give thanks for rainy days that help make things grow.
Please thank God for the baseline health of all of our family.
Please give thanks for the healing that comes with love and laughter.
Please thank God for all of Anna's care givers.
Requests
Please pray for continued healing from Anna's surgery this week.
Please ask God for restful sleep in the coming nights before Anna's hospital stay next week.
Please pray for a smooth treatment experience next week for Anna.
Please pray for continued peace, patience, strength, wisdom, and rest for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff, both within the hospital and out.
Thank you, as always, for your prayers and support.
Medically speaking, Anna's g-tube placement went just fine. However, it was still surgery on her abdominal muscles and she's just a kid, so she was in a bit of pain and pretty grumpy about the whole ordeal for the first 36 hours or so. On top of the actual surgery, throw in a totally mixed up schedule for a kid who thrives on routines, plus a week of nights with overnight thunderstorms, and you've got a tired family here.
But when we got home a little after noon on Tuesday, I was trying hard to think of the positives while Anna was crying herself to sleep for a nap. Here were a few big ones ... #1 - she was throwing a fit in the privacy of our own home in her own bed, and #2 - we did not have to worry about her screaming to the point of her throwing up and having an ng-tube coming out (which had happened previously).
As a random side note, Anna learned what happens when the tornado sirens go off in the middle of the night at a children's hospital on Monday night. For patients who are able, they are moved into the bathrooms in their rooms. For the rest of the patients, they are wheeled in their beds into the hallways until the warning is passed. Apparently, Anna was wide awake and quite chatty with the nurses when this happened. (We were at home in the basement with Kate and Ethan for an hour and a half listening to the weather radio go off again and again and again; we don't sleep at the hospital anymore unless we absolutely must.)
Every day this week has been a bit better for Anna, but she's still sore at times, especially if she's asked to use those tender abs. At first we were told she'd be back to her normal pre-surgery activity in a few days, but her therapists today told us realistically it would be more like a week. However, today at noon Miss Anna voluntarily opted out of her Tylenol and she hasn't taken any of the narcotics since it upset her stomach with the first dose post-hospital stay, so who knows?
Next Tuesday and Wednesday will be Anna's next round of in-patient chemotherapy. There were so many other factors with the first round that we're not quite sure if we can expect the same kind of reaction from her body with the second round.
As for the rest of us, we're doing our best to make this work. Things seem to be working well with our helper; Kate and Ethan like her a lot so that's good :) And she does whatever I ask of her, and more.
Last Friday was one of the first days in a long, long time that we didn't have anyone scheduled to come to our house and we didn't have anywhere that we had to be, so we did a Mommy and kids field trip to Olbrich Gardens. Fun times. I miss being able to do activities like this with our kids, but at least now I know that it's possible to do them every so often. We'll be able to make these kinds of memories again, just in a different way.
Saturday morning I even managed to take all three kids to Pick n' Save in town to grab a few groceries. Ethan rode in the cart and Kate pushed Anna in the wheelchair. I think she only ran into someone else's cart one time ... oops.
Time for prayers
Thanksgiving
Please give thanks for that we were able to find such a great fit in our family helper; I still need to ask her if it's okay to share her name!
Please thank God that Anna's surgery went so smoothly.
Please give thanks for the continued support that we are receiving as a family.
Please thank God for keeping friends and family safe in the recent severe weather.
Please give thanks for rainy days that help make things grow.
Please thank God for the baseline health of all of our family.
Please give thanks for the healing that comes with love and laughter.
Please thank God for all of Anna's care givers.
Requests
Please pray for continued healing from Anna's surgery this week.
Please ask God for restful sleep in the coming nights before Anna's hospital stay next week.
Please pray for a smooth treatment experience next week for Anna.
Please pray for continued peace, patience, strength, wisdom, and rest for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff, both within the hospital and out.
Thank you, as always, for your prayers and support.
Sunday, June 15, 2014
G-tube surgery
Just a quick prayer request tonight.
Anna will be having surgery on Monday at 1 p.m. to have a g-tube placed; no more ng-tube for this girl. The doctors and nurses assure us that this type of surgery is minor, especially in comparison to all that Anna has experienced. However, please keep her in your prayers considering the fact that it is still surgery; it still requires anesthesia; and she will need to be hospitalized for one night for observation.
On a side note, this surgery was scheduled twice before, once at the end of February and once in the middle of May, but then things happened. Surgeons cancel this kind of surgery when their patients are unexpectedly placed on a ventilator for a week and then again when they have a shunt infection.
We'll all be glad when the ng-tube is taken out of the equation :)
Anna will be having surgery on Monday at 1 p.m. to have a g-tube placed; no more ng-tube for this girl. The doctors and nurses assure us that this type of surgery is minor, especially in comparison to all that Anna has experienced. However, please keep her in your prayers considering the fact that it is still surgery; it still requires anesthesia; and she will need to be hospitalized for one night for observation.
On a side note, this surgery was scheduled twice before, once at the end of February and once in the middle of May, but then things happened. Surgeons cancel this kind of surgery when their patients are unexpectedly placed on a ventilator for a week and then again when they have a shunt infection.
We'll all be glad when the ng-tube is taken out of the equation :)
Friday, June 13, 2014
"Celebrating Seven"
As some of you know, Anna will be celebrating her seventh birthday in a few weeks. More than once in the past few months, we were unsure if this celebration would happen for her, but now we're pretty confident that it will. Only God knows what next year will bring, so we'll enjoy number seven for what it is.
However, since June 27th falls a few days after Anna's second round of chemo, we're planning on keeping things pretty low key around here, as we did for Kate and Matt's birthdays this year.
Feel free to send Anna a birthday card because what kid doesn't love getting birthday cards in the mail? Gifts, however, are not necessary. In fact, last year Anna asked friends to give a donation to a charity through our church instead of bringing her a gift for her birthday party. And, to be honest, we have received enough gifts over the course of the last several months to last us several birthday seasons :)
Anna and I talked things over on the way to a doctor's appointment this past week and decided that she would like to set up a fundraising site through the Children's Hospital for her seventh birthday. We found a great fund on the UW Hospital website called the "Beat Childhood Cancer Research Fund" that she chose. Originally, she picked $100 as her fundraising goal, but I encouraged her to shoot for the moon and pick $500 as her goal.
So ... if you would like to give Anna a birthday present this year AND indirectly help another child by furthering childhood cancer research, please visit Anna's "Celebrating Seven" fundraising website at the link below.
http://connect.uwhealth.org/goto/Anna_Mischnick
Anna (and the rest of us) thank you in advance.
However, since June 27th falls a few days after Anna's second round of chemo, we're planning on keeping things pretty low key around here, as we did for Kate and Matt's birthdays this year.
Feel free to send Anna a birthday card because what kid doesn't love getting birthday cards in the mail? Gifts, however, are not necessary. In fact, last year Anna asked friends to give a donation to a charity through our church instead of bringing her a gift for her birthday party. And, to be honest, we have received enough gifts over the course of the last several months to last us several birthday seasons :)
Anna and I talked things over on the way to a doctor's appointment this past week and decided that she would like to set up a fundraising site through the Children's Hospital for her seventh birthday. We found a great fund on the UW Hospital website called the "Beat Childhood Cancer Research Fund" that she chose. Originally, she picked $100 as her fundraising goal, but I encouraged her to shoot for the moon and pick $500 as her goal.
So ... if you would like to give Anna a birthday present this year AND indirectly help another child by furthering childhood cancer research, please visit Anna's "Celebrating Seven" fundraising website at the link below.
http://connect.uwhealth.org/goto/Anna_Mischnick
Anna (and the rest of us) thank you in advance.
Wednesday, June 11, 2014
Counting our blessings
We cannot even begin to express how grateful we are for the many gifts, both tangible and intangible, our family has received over the past few months. Yesterday at Anna's clinic appointment the nurse practitioner asked me if people were still bringing us food; she had jokingly asked me if people were bringing us any meals when Anna was first discharged. Ha! If she only knew the kinds of help we have been getting and were still receiving! Then she asked if I was the one coordinating it. Ha! So I had to let her in on the Take-them-a-meal website, and that we didn't even set it up.
Seriously, though. Last week someone weeded my onions; I love gardening, but I loathe weeding my onions. Some other people hauled and spread leaf mulch on my garden. Another friend helped Matt set up the pool. Someone else played with the kids while these things were going on. And yesterday a different friend watched Kate and Ethan while I was with Anna at the hospital for her clinic appointment. And dozens upon dozens of people have brought us food, some of them multiple times. And hundreds upon hundreds of people have prayed for our little family. We certainly don't deserve any of this.
Here are a few more blessings ... it looks like Anna's baseline robust immune system is bouncing back. Her immune system trackers and her platelet counts from yesterday are back to "normal"; how about that? Her red blood cell counts are hovering low, but she is getting blood drawn twice a week for labs, so her body has to make that up each week anyway. Since things seem to be going well enough for Anna and our family at home, once her next round of chemo is past, she will graduate out of her weekly clinic visits. Hooray! She and I will still be back at the hospital quite a bit for transfusions post chemo, but at least not quite as much during the "healthy" weeks.
In our time and interactions at the hospital, I have learned to read and trust the doctors' reactions and expressions pretty well. The stoic looks from the first few weeks in February, often accompanied with a quick grab at a box of Kleenex before they took us to a separate room, were usually bad signs. The obvious joyful looks and smiles that we have seen in the last month have given us lots of hope, again. I think these marked changes started with the MRI results back in May and haven't really stopped since. Of course, our hope started earlier than that, when we started seeing the improvements with Anna, but seeing the hope on the doctors' faces is very reassuring to us as well.
As for some fun activities, we went to the zoo Friday night after hours for a "Night at the Zoo" event. Back in March or April, I can't remember details anymore, I put Anna's name in a drawing at the hospital for this special event at the zoo. Low and behold, her name was drawn.
We weren't sure until a few days before the event whether or not we'd actually attend, but we finally decided to make a go of it. We didn't last too long, but it was worth it to do a "meet and greet" with a penguin, meet the Henry the Lion mascot, see the real lion and pet a few reptiles, and ride the train and carousel. Since it was a closed event with multiple wheelchair kiddos, it was a nice outing for our little family.
Monday Anna and I also made a visit to the 1st grade picnic at a local park. This was the first time Anna has seen many of her classmates since January and she was SO excited; turns out many of them were just as excited to see her :) She said hi to a few, had her face painted, and then was ready to go home to take a nap. She's looking forward to seeing some friends over the summer months before the school year starts in the fall.
When we moved to McFarland, we didn't realize quite how blessed we were to live in this community. In fact, until this whole experience with Anna's cancer, I don't think we knew the extent of amazing support we had here in town. People at the hospital have told us that small communities really come together during a time like this, but I'm not sure that they realize quite how wonderful everyone has been. Anna, and our family, couldn't be in a better place for her to make the transition back into school in the coming year.
One more blessing ... we hired our family helper. Not a babysitter, not a nanny, not a nursing assistant. I've decided to call her a family helper; that way Kate won't monopolize her time like she wants to :) She started today and we all think we've found a very good fit.
Time for prayers
Thanksgiving
Please give thanks that we have a family helper hired.
Please thank God for a successful and relatively uneventful clinic visit this week.
Please give thanks for the help of church friends and neighbors in the past few weeks.
Please thank God for the nursing assistants, home health nurses, and home therapists who have been coming to our home; they have been wonderful.
Please give thanks for the continued support of our friends and family.
Please thank God for the opportunity between chemo treatments for Anna to heal and regain strength.
Please give thanks for peace, patience, strength, rest, wisdom, and all of those other things that we don't even realize are coming from God during these times.
Requests
Please pray that Anna's opthamology appointment on Thursday afternoon goes smoothly and that a solution is found for her continued vision issues.
Please ask God for a smooth transition for our family as we work with our new employee.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care givers within the hospital and without.
Please continue to pray for peace, patience, strength, rest, wisdom, and all of those other things that we need :)
Seriously, though. Last week someone weeded my onions; I love gardening, but I loathe weeding my onions. Some other people hauled and spread leaf mulch on my garden. Another friend helped Matt set up the pool. Someone else played with the kids while these things were going on. And yesterday a different friend watched Kate and Ethan while I was with Anna at the hospital for her clinic appointment. And dozens upon dozens of people have brought us food, some of them multiple times. And hundreds upon hundreds of people have prayed for our little family. We certainly don't deserve any of this.
Here are a few more blessings ... it looks like Anna's baseline robust immune system is bouncing back. Her immune system trackers and her platelet counts from yesterday are back to "normal"; how about that? Her red blood cell counts are hovering low, but she is getting blood drawn twice a week for labs, so her body has to make that up each week anyway. Since things seem to be going well enough for Anna and our family at home, once her next round of chemo is past, she will graduate out of her weekly clinic visits. Hooray! She and I will still be back at the hospital quite a bit for transfusions post chemo, but at least not quite as much during the "healthy" weeks.
In our time and interactions at the hospital, I have learned to read and trust the doctors' reactions and expressions pretty well. The stoic looks from the first few weeks in February, often accompanied with a quick grab at a box of Kleenex before they took us to a separate room, were usually bad signs. The obvious joyful looks and smiles that we have seen in the last month have given us lots of hope, again. I think these marked changes started with the MRI results back in May and haven't really stopped since. Of course, our hope started earlier than that, when we started seeing the improvements with Anna, but seeing the hope on the doctors' faces is very reassuring to us as well.
As for some fun activities, we went to the zoo Friday night after hours for a "Night at the Zoo" event. Back in March or April, I can't remember details anymore, I put Anna's name in a drawing at the hospital for this special event at the zoo. Low and behold, her name was drawn.
We weren't sure until a few days before the event whether or not we'd actually attend, but we finally decided to make a go of it. We didn't last too long, but it was worth it to do a "meet and greet" with a penguin, meet the Henry the Lion mascot, see the real lion and pet a few reptiles, and ride the train and carousel. Since it was a closed event with multiple wheelchair kiddos, it was a nice outing for our little family.
Monday Anna and I also made a visit to the 1st grade picnic at a local park. This was the first time Anna has seen many of her classmates since January and she was SO excited; turns out many of them were just as excited to see her :) She said hi to a few, had her face painted, and then was ready to go home to take a nap. She's looking forward to seeing some friends over the summer months before the school year starts in the fall.
When we moved to McFarland, we didn't realize quite how blessed we were to live in this community. In fact, until this whole experience with Anna's cancer, I don't think we knew the extent of amazing support we had here in town. People at the hospital have told us that small communities really come together during a time like this, but I'm not sure that they realize quite how wonderful everyone has been. Anna, and our family, couldn't be in a better place for her to make the transition back into school in the coming year.
One more blessing ... we hired our family helper. Not a babysitter, not a nanny, not a nursing assistant. I've decided to call her a family helper; that way Kate won't monopolize her time like she wants to :) She started today and we all think we've found a very good fit.
Time for prayers
Thanksgiving
Please give thanks that we have a family helper hired.
Please thank God for a successful and relatively uneventful clinic visit this week.
Please give thanks for the help of church friends and neighbors in the past few weeks.
Please thank God for the nursing assistants, home health nurses, and home therapists who have been coming to our home; they have been wonderful.
Please give thanks for the continued support of our friends and family.
Please thank God for the opportunity between chemo treatments for Anna to heal and regain strength.
Please give thanks for peace, patience, strength, rest, wisdom, and all of those other things that we don't even realize are coming from God during these times.
Requests
Please pray that Anna's opthamology appointment on Thursday afternoon goes smoothly and that a solution is found for her continued vision issues.
Please ask God for a smooth transition for our family as we work with our new employee.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care givers within the hospital and without.
Please continue to pray for peace, patience, strength, rest, wisdom, and all of those other things that we need :)
Saturday, June 7, 2014
Going public
As many of you know, our six year old daughter, Anna, was diagnosed with brain cancer in February and has been undergoing treatments since that time. She will continue to undergo chemotherapy treatments for the next six months. During her time in the hospital, Anna underwent major brain surgery and intensive radiation and chemotherapy treatments in addition to some out of the ordinary set-backs. Anna looks and acts much different than most soon-to-be seven year olds,
and she looks and acts much different than she did before she was
admitted to the hospital four months ago.
However, she is the same Anna, even if she looks and sounds a lot different. This blog post is my attempt to educate as many people as I can so they can help educate their families and children so that we can all work together to prevent any teasing that might occur in the weeks and months to come, not just towards Anna, but towards any kids who might be different.
Since her diagnosis Anna has been for the most part isolated from her peers and community. Now that she is past the most intensive parts of her treatment and is living at home with us, she will be joining our family whenever possible wherever we might go ... to Culver's ... to the zoo ... to the park. As much as we would like to protect Anna from any additional pain, emotional or otherwise, sheltering her until she has reached her full potential would not be in anyone's best interest.
Maybe I am trying to be a bit too controlling, but, as when Anna was first diagnosed, I think it's easier to be direct with everyone, instead of having awkward interactions with friends and acquaintances. So we're just going to have to jump right in and do what we can to educate the world on Anna's condition and help her through this next phase of life.
As Anna continues to re-enter "normal" life, we want her to feel comfortable and accepted for who she is. We know that she will be stared at because, hey, she IS different, and people, especially kids, stare at someone who is different. But once the initial "staring time" is over, we want Anna to be treated like any other kid. We're doing our part to help with that at home, but we'd like everyone else to do theirs, too. So here is my attempt to offer some advice for "Anna etiquette".
Basically, please interact with Anna as you normally would have done before this all started. She's a kid and should be treated like a kid, even if she can't run and jump and play actively ... yet.
And here are some basic kid-friendly guidelines that you may want to share with any children you know who may have questions about Anna's illness and/or appearance:
*You can't catch cancer like you can catch a cold.
*Cancer doesn't make your hair fall out; the medicine they give you to make you better makes your hair fall out.
*The medicine they give you makes you not want to eat, so the doctors have to give you your food another way, that's why Anna has a tube in her nose right now. She won't have it there for much longer, though.
*Not all kids with cancer are in wheelchairs. Anna is in a wheelchair because of the kind of cancer she has. The doctors had to do surgery in the part of her brain that moves her muscles so her body has to relearn how to use her muscles.
*Wheelchairs are tools, not toys or furniture. Please treat them with the respect that you would treat a part of someone’s body.
Most importantly, please feel free to ask us questions. We like sharing what we have learned and would rather people learn something new than be afraid to ask. If we don't know the answer, mostly likely we know someone who does.
In our home, we have very open and age appropriate conversations about cancer. It's real here and we live with it every day. But we also have to laugh. For example, Anna jokes with us that she won't have to go with Kate and I to get her hair cut for awhile because she doesn't have any hair :)
We hope that we have helped give our daughter a solid enough foundation to help her weather whatever social and emotional difficulties may come as she continues to go through her chemotherapy treatments and her rehabilitation therapies. A book given to our family by our church's Sunday School several years back sums up our perspective pretty well.
Jesus Loves Me by Joni Walker
I don't look like other people I see,
But I know Jesus still loves me.
My hair is straight.
My skin is brown.
My eyes are blue.
My face is round.
My hair is red.
My face is small.
My skin is yellow.
Jesus loves us all.
My hair stands up.
My skin is white.
My nose has freckles,
and that's all right.
My hair is curly.
My eyes are green.
My nose is little.
My face is clean.
Jesus dies to take our sins away.
If we look different, that's okay.
Different faces, big or small,
It doesn't matter, Jesus loves us all!
(The best part about this book right now is that the very first girl pictured in the book is in a wheelchair.)
For those of you who have been following this blog all along, here are the prayers.
Thanksgiving
Please give thanks for the continued support our family is receiving!
Please thank God that Anna's blood counts are on the rise.
Please give thanks for all of the care givers, inside the hospital and outside, who are supporting our family.
Please thank God for the continued flexibility of Matt's job during this time in our lives.
Please give thanks that our family is all home together.
Please thank God for peace, strength, wisdom, patience, and healing.
Please give thanks that Uncle Chris had a successful ride today in honor of Anna!
Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray that we are able to hire the right helper for our family soon.
Please continue to ask God to grant us strength, peace, patience, healing, rest, and wisdom.
Please continue to pray for all those who are responsible for Anna's medical care, both in the hospital and out.
However, she is the same Anna, even if she looks and sounds a lot different. This blog post is my attempt to educate as many people as I can so they can help educate their families and children so that we can all work together to prevent any teasing that might occur in the weeks and months to come, not just towards Anna, but towards any kids who might be different.
Since her diagnosis Anna has been for the most part isolated from her peers and community. Now that she is past the most intensive parts of her treatment and is living at home with us, she will be joining our family whenever possible wherever we might go ... to Culver's ... to the zoo ... to the park. As much as we would like to protect Anna from any additional pain, emotional or otherwise, sheltering her until she has reached her full potential would not be in anyone's best interest.
Maybe I am trying to be a bit too controlling, but, as when Anna was first diagnosed, I think it's easier to be direct with everyone, instead of having awkward interactions with friends and acquaintances. So we're just going to have to jump right in and do what we can to educate the world on Anna's condition and help her through this next phase of life.
As Anna continues to re-enter "normal" life, we want her to feel comfortable and accepted for who she is. We know that she will be stared at because, hey, she IS different, and people, especially kids, stare at someone who is different. But once the initial "staring time" is over, we want Anna to be treated like any other kid. We're doing our part to help with that at home, but we'd like everyone else to do theirs, too. So here is my attempt to offer some advice for "Anna etiquette".
Basically, please interact with Anna as you normally would have done before this all started. She's a kid and should be treated like a kid, even if she can't run and jump and play actively ... yet.
And here are some basic kid-friendly guidelines that you may want to share with any children you know who may have questions about Anna's illness and/or appearance:
*You can't catch cancer like you can catch a cold.
*Cancer doesn't make your hair fall out; the medicine they give you to make you better makes your hair fall out.
*The medicine they give you makes you not want to eat, so the doctors have to give you your food another way, that's why Anna has a tube in her nose right now. She won't have it there for much longer, though.
*Not all kids with cancer are in wheelchairs. Anna is in a wheelchair because of the kind of cancer she has. The doctors had to do surgery in the part of her brain that moves her muscles so her body has to relearn how to use her muscles.
*Wheelchairs are tools, not toys or furniture. Please treat them with the respect that you would treat a part of someone’s body.
Most importantly, please feel free to ask us questions. We like sharing what we have learned and would rather people learn something new than be afraid to ask. If we don't know the answer, mostly likely we know someone who does.
In our home, we have very open and age appropriate conversations about cancer. It's real here and we live with it every day. But we also have to laugh. For example, Anna jokes with us that she won't have to go with Kate and I to get her hair cut for awhile because she doesn't have any hair :)
We hope that we have helped give our daughter a solid enough foundation to help her weather whatever social and emotional difficulties may come as she continues to go through her chemotherapy treatments and her rehabilitation therapies. A book given to our family by our church's Sunday School several years back sums up our perspective pretty well.
Jesus Loves Me by Joni Walker
I don't look like other people I see,
But I know Jesus still loves me.
My hair is straight.
My skin is brown.
My eyes are blue.
My face is round.
My hair is red.
My face is small.
My skin is yellow.
Jesus loves us all.
My hair stands up.
My skin is white.
My nose has freckles,
and that's all right.
My hair is curly.
My eyes are green.
My nose is little.
My face is clean.
Jesus dies to take our sins away.
If we look different, that's okay.
Different faces, big or small,
It doesn't matter, Jesus loves us all!
(The best part about this book right now is that the very first girl pictured in the book is in a wheelchair.)
For those of you who have been following this blog all along, here are the prayers.
Thanksgiving
Please give thanks for the continued support our family is receiving!
Please thank God that Anna's blood counts are on the rise.
Please give thanks for all of the care givers, inside the hospital and outside, who are supporting our family.
Please thank God for the continued flexibility of Matt's job during this time in our lives.
Please give thanks that our family is all home together.
Please thank God for peace, strength, wisdom, patience, and healing.
Please give thanks that Uncle Chris had a successful ride today in honor of Anna!
Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray that we are able to hire the right helper for our family soon.
Please continue to ask God to grant us strength, peace, patience, healing, rest, and wisdom.
Please continue to pray for all those who are responsible for Anna's medical care, both in the hospital and out.
Tuesday, June 3, 2014
Clinic visits
Monday afternoon Anna had a clinic visit with the cardiologists to have a follow-up echocardiogram and an EKG. Both looked just fine and any issues with her heart muscle from the prolonged tachycardia are clearing up and healing ... hooray! One of her blood pressure medications was even removed ... double hooray!
However, while in that particular specialty clinic, I asked the nurse to see if we could view Anna's lab results from the blood that was drawn earlier in the day by the home health nurse. The lab results were in.
Good news ... Anna has white blood cells again! Hooray!
Bad news ... she didn't have enough platelets.
It turns out the nurse practitioner in the oncology clinic was trying to get ahold of us at home to bring Anna in for a platelet transfusion. So another clinic visit that was supposed to be short turned out to be long, but only 5 hours long instead of 7 hours long this time.
Tuesday morning Anna had her weekly oncology clinic visit. We were in and out within an hour :)
On a different note, Anna's uncle, Chris Navurskis, is an avid cyclist and has joined the UW Health team for the MACC TREK 100. He is riding for Anna and in memory of another friend. The ride is on June 7 in Waterloo, WI (short notice, I know!). If anyone is planning to ride anyhow, or looking for a cause for which to ride, feel free to join him. Thanks, Chris!
However, while in that particular specialty clinic, I asked the nurse to see if we could view Anna's lab results from the blood that was drawn earlier in the day by the home health nurse. The lab results were in.
Good news ... Anna has white blood cells again! Hooray!
Bad news ... she didn't have enough platelets.
It turns out the nurse practitioner in the oncology clinic was trying to get ahold of us at home to bring Anna in for a platelet transfusion. So another clinic visit that was supposed to be short turned out to be long, but only 5 hours long instead of 7 hours long this time.
Tuesday morning Anna had her weekly oncology clinic visit. We were in and out within an hour :)
On a different note, Anna's uncle, Chris Navurskis, is an avid cyclist and has joined the UW Health team for the MACC TREK 100. He is riding for Anna and in memory of another friend. The ride is on June 7 in Waterloo, WI (short notice, I know!). If anyone is planning to ride anyhow, or looking for a cause for which to ride, feel free to join him. Thanks, Chris!
Sunday, June 1, 2014
Silly stories
Matt told me that the last post had too much information and not enough fun, so here are a few random stories about the kids.
Ethan loves all kinds of motorized vehicles. The tractor coming to plant the field behind our home was a highlight for this little boy. He likes to point to the field right away in the morning now and say "tacktoe?" He also recognizes all sorts of machine sounds. "Moher" - mower. "Ahdn" - airplane. "Cuy" - car. If he is upset about something, he will often calm down instantly if he hears one of these sounds out the window.
Ethan has also learned through his experiences that it is best to be easy going. We like it when he responds with "o-tay" when we ask him a question, or when we hear him drop a toy or fall down in the other room and he responds with "Whoa!" instead of crying :)
This 18-month old also has a pretty good medical vocabulary. He has words for doctor, hospital, and, our personal favorite, IV pole ("IB poe").
We get the sense that he is going to be a fast talker as his words come easier and more quickly; he seems in a hurry to keep up with his sisters and is trying very hard to get his point across, but right now it comes out as "ahdn! ahdn! ahdn! dada! dada! dada! ahdn! ahdn! mama! mama!" especially if he is excited.
Kate, like many 5 year old girls, can sing most of the Disney Frozen songs. However, it usually makes us laugh when she chooses to sing "Let It Go" while she's going to the bathroom. :)
Kate has taken on a new role in helping Anna as her sister. One of the hard parts recently for Anna here at home has been an injection that she needs to have each night for a week or so after her chemo treatments. Matt doesn't have to actually inject her skin, but just insert the needle into an injection port already placed by the nurses at the hospital. However, Anna has told us that the medicine stings when it goes in. For the first several nights of this there were lots of tears and screams.
Thursday night Kate asked if she could hold Anna's hand since she had just had her 5-year-old shots and she knew how it felt to have a shot. She talked Anna through the experience. Since then, she has held Anna's hand for each of the injections and talked her through it by saying things like "I'm glad that I had my shots today so that I would be able to help you feel brave" and "You go ahead and squeeze my hand just as tight as you need to". No more tears. Awesome on so many levels :)
Tonight Kate and Ethan amused themselved outside by making a tunnel out of the gym mat. Kate pretended she was a dragon and "did dragon things" while Ethan crawled through the tunnel. These two are at the point of the year of needing daily baths because they get so dirty outside every day.
I'll try to remember to include more of these kinds of stories in the future. That's what this blog was originally about anyway.
Ethan loves all kinds of motorized vehicles. The tractor coming to plant the field behind our home was a highlight for this little boy. He likes to point to the field right away in the morning now and say "tacktoe?" He also recognizes all sorts of machine sounds. "Moher" - mower. "Ahdn" - airplane. "Cuy" - car. If he is upset about something, he will often calm down instantly if he hears one of these sounds out the window.
Ethan has also learned through his experiences that it is best to be easy going. We like it when he responds with "o-tay" when we ask him a question, or when we hear him drop a toy or fall down in the other room and he responds with "Whoa!" instead of crying :)
This 18-month old also has a pretty good medical vocabulary. He has words for doctor, hospital, and, our personal favorite, IV pole ("IB poe").
We get the sense that he is going to be a fast talker as his words come easier and more quickly; he seems in a hurry to keep up with his sisters and is trying very hard to get his point across, but right now it comes out as "ahdn! ahdn! ahdn! dada! dada! dada! ahdn! ahdn! mama! mama!" especially if he is excited.
Kate, like many 5 year old girls, can sing most of the Disney Frozen songs. However, it usually makes us laugh when she chooses to sing "Let It Go" while she's going to the bathroom. :)
Kate has taken on a new role in helping Anna as her sister. One of the hard parts recently for Anna here at home has been an injection that she needs to have each night for a week or so after her chemo treatments. Matt doesn't have to actually inject her skin, but just insert the needle into an injection port already placed by the nurses at the hospital. However, Anna has told us that the medicine stings when it goes in. For the first several nights of this there were lots of tears and screams.
Thursday night Kate asked if she could hold Anna's hand since she had just had her 5-year-old shots and she knew how it felt to have a shot. She talked Anna through the experience. Since then, she has held Anna's hand for each of the injections and talked her through it by saying things like "I'm glad that I had my shots today so that I would be able to help you feel brave" and "You go ahead and squeeze my hand just as tight as you need to". No more tears. Awesome on so many levels :)
Tonight Kate and Ethan amused themselved outside by making a tunnel out of the gym mat. Kate pretended she was a dragon and "did dragon things" while Ethan crawled through the tunnel. These two are at the point of the year of needing daily baths because they get so dirty outside every day.
I'll try to remember to include more of these kinds of stories in the future. That's what this blog was originally about anyway.
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