Real quick ...
The oncology team will be meeting with us this afternoon at 3. Please pray for good news. Please pray that God gives us strength and wisdom.
Whatever Matt ate last night at the hospital cafeteria didn't agree with him and he didn't get much sleep. He's resting now in one of the sleep rooms. Please pray that he gets some rest before our meeting.
Anna's improving all the time. She's doing well with having her ventricular drain clamped today. If her body does well with that in the next 24 hours, she may be moved from the PICU to a "regular" room by mid-week.
Anna has a big afternoon with the speech therapist and the OT/PT coming in back to back. Please pray that she has some rest before then so that the therapists can see what she's capable of doing when she's relatively well rested.
Thanks again!
Monday, February 10, 2014
Sunday, February 9, 2014
Sunday Night
First I'll give a brief update on Anna's condition. Anna has made much improvement in the last 36 hours. She's communicating a LOT with us and the hospital staff about what she needs and wants and also about her particular pains. All of her labs are coming back more in the normal range; her body seems to have figured out some of those involuntary processes again. She was much more awake and alert today. All good things. She understands more now about why her body isn't moving the way she wants it to. Dear Anna finds it very frustrating, but right now is determined to get her muscles back under her control.
I feel that now that we're past the crisis point, and we've had more time to reflect on matters, I need to give an update about where Matt and I stand at this time regarding this whole situation. We both deeply and firmly believe that God has a hand in what is going on, and that perhaps we are just a small part of something bigger that He has in mind.
We also firmly believe that God has been preparing our family for this journey for awhile, although we didn't know. Here are a few examples:
Our family had an awesome summer and fall last year. Matt and I were exhausted most days, but we have so many happy memories of things we did as a family. Matt and I decided to do many things intentionally as a family and we will never regret how much work it was to make some of those things happen.
Last summer we were able to spend extended time in South Dakota with Matt's parents and one of his sister's families. About 2 weeks before Ethan's birthday in November, we extended an invitation to family to come for a little celebration. Matt's parents, his other sister's family, and my parents were all able to come. We saw my parents and my brother at Christmas. For those of you who know us better, you'll realize how amazing it is that we saw ALL of our family within 6 months.
Last fall we made a decision as a family that Saturdays were special and turned down many offers for activities simply because we wanted Anna and Kate to have that time to play together. They had an unforgettable time together almost every weekend.
Through the chaos of the December holiday season, we intentionally did all of our family Christmas traditions as well as a few new ones. To me it almost felt like too much, but I just had a feeling that I needed to "get it all in". At one point I remember being in the van with Matt and someone was crabbing in the back about something. I turned to Matt and quoted a great line from a favorite movie from our college years. In Can't Hardly Wait, an overenthusiastic cheerleader is trying to get everyone to sign her yearbook and when no one wants to sign it, she yells out "These are happy memories we are making here, people!" That's about how I felt. But I don't regret a minute of it.
Anna was able to randomly spend an afternoon with her godmother the week she started getting headaches. We'd been trying to set up a time for them to hang out for months, and this one just happened out of the blue.
Moving closer to the present. The last time I was at the library with Kate and Ethan, I saw the book "Heaven is for Real for Kids" and threw it in our bag on a whim. We read it with both girls in the week prior to Anna's diagnosis. Reading it with the girls reminded me how much I enjoyed the original book. While I was still recovering from my stomach bug, I checked downstairs to see if I still had the book, grabbed it, and read it last Friday and Saturday. God wanted to give my faith a jump-start before our life was disrupted.
We also firmly believe that God has been present in our lives since Anna became sick. There are too many examples for me to share them all, but our morning at church today was the epitome. My mom offered to stay with Anna so the rest of us could go to worship together. I got to church a bit before the others, flagged down Cindy and the pastor in charge to give them a heads up. Matt showed up, but there was no parking left, so a friend offered to park the van for him. We, surprisingly, found seats together on a Sunday morning extra busy with a presentation by our church's preschool. Today's sermon spoke to our hearts. During the Sunday School hour, I was able to spent about 40 minutes with two of my best girl friends. We haven't been able to do that in months. In other words, all of the details just worked themselves out and I, personally, got some much needed spiritual and emotional support.
Don't get me wrong, this sucks. It's not fair ... to Anna, to Ethan, to Kate, to Matt, to me, to all sorts of people. But bad stuff happens. It's completely out of our control. However, we still know that God is in control. So we take a deep breath and ask "Where do we go from here?"
Time for prayers.
Thanksgiving
Please give thanks that Anna is talking.
Please give thanks for our wisdom and strength as we interact with the doctors and nurses.
Please give thanks for the amazing care that Anna is receiving at the Children's Hospital.
Please give thanks that Anna is making great improvements every day.
Please give thanks that Anna passed the swallow test yesterday afternoon so that she can now drink water and eat applesauce (or pear sauce, if she prefers). Did you know there are people who are "swallow specialists"? I didn't know that before this past weekend.
Please give thanks for Anna's incredible determination and self-awareness. These personality traits are already doing wonders for her.
Requests
Please pray for good news from the pathology report and the oncology team. We've had enough bad news to last us awhile. We anticipate meeting with the team on Tuesday or Wednesday.
Please pray that Anna soon passes the next feeding test (I think it's for chewing), so that she can add more foods to her diet.
Please pray for continued strength for Anna, physically, mentally, emotionally, and spiritually. She really just wants to go home right now :(
Please pray that Anna's catheter stays out!
Please pray that God gives Matt and I the words on Monday as we meet again with many of the therapists and other hospital "helpers" with whom we will be working.
Two final things. We appreciate the cards and items that have been sent to Anna's room. At this point, I think she would most enjoy pictures that other kids have drawn for her (nature scenes, animals, people, rainbows, etc.) or notes about random things in life (like the Olympics or a silly joke or a little poem). Our church family has given Anna a binder in which to keep these drawings and notes.
We are beginning to get an understanding of the financial needs that we will have in the weeks and months to come. For example, we will need to hire someone to help out on the home front. My parents have been great, but we want them to remain grandparents, not caregivers. We don't want to ask for money because we could probably find ways to make things work. However, if you feel moved to help us financially, a fund has been set up at our church. You can contact Cindy Light at cindylight87@gmail.com for more information. We will strive to be good stewards of the gifts given us.
Thank you again for all of your thoughts and prayers. Don't doubt their effectiveness.
I feel that now that we're past the crisis point, and we've had more time to reflect on matters, I need to give an update about where Matt and I stand at this time regarding this whole situation. We both deeply and firmly believe that God has a hand in what is going on, and that perhaps we are just a small part of something bigger that He has in mind.
We also firmly believe that God has been preparing our family for this journey for awhile, although we didn't know. Here are a few examples:
Our family had an awesome summer and fall last year. Matt and I were exhausted most days, but we have so many happy memories of things we did as a family. Matt and I decided to do many things intentionally as a family and we will never regret how much work it was to make some of those things happen.
Last summer we were able to spend extended time in South Dakota with Matt's parents and one of his sister's families. About 2 weeks before Ethan's birthday in November, we extended an invitation to family to come for a little celebration. Matt's parents, his other sister's family, and my parents were all able to come. We saw my parents and my brother at Christmas. For those of you who know us better, you'll realize how amazing it is that we saw ALL of our family within 6 months.
Last fall we made a decision as a family that Saturdays were special and turned down many offers for activities simply because we wanted Anna and Kate to have that time to play together. They had an unforgettable time together almost every weekend.
Through the chaos of the December holiday season, we intentionally did all of our family Christmas traditions as well as a few new ones. To me it almost felt like too much, but I just had a feeling that I needed to "get it all in". At one point I remember being in the van with Matt and someone was crabbing in the back about something. I turned to Matt and quoted a great line from a favorite movie from our college years. In Can't Hardly Wait, an overenthusiastic cheerleader is trying to get everyone to sign her yearbook and when no one wants to sign it, she yells out "These are happy memories we are making here, people!" That's about how I felt. But I don't regret a minute of it.
Anna was able to randomly spend an afternoon with her godmother the week she started getting headaches. We'd been trying to set up a time for them to hang out for months, and this one just happened out of the blue.
Moving closer to the present. The last time I was at the library with Kate and Ethan, I saw the book "Heaven is for Real for Kids" and threw it in our bag on a whim. We read it with both girls in the week prior to Anna's diagnosis. Reading it with the girls reminded me how much I enjoyed the original book. While I was still recovering from my stomach bug, I checked downstairs to see if I still had the book, grabbed it, and read it last Friday and Saturday. God wanted to give my faith a jump-start before our life was disrupted.
We also firmly believe that God has been present in our lives since Anna became sick. There are too many examples for me to share them all, but our morning at church today was the epitome. My mom offered to stay with Anna so the rest of us could go to worship together. I got to church a bit before the others, flagged down Cindy and the pastor in charge to give them a heads up. Matt showed up, but there was no parking left, so a friend offered to park the van for him. We, surprisingly, found seats together on a Sunday morning extra busy with a presentation by our church's preschool. Today's sermon spoke to our hearts. During the Sunday School hour, I was able to spent about 40 minutes with two of my best girl friends. We haven't been able to do that in months. In other words, all of the details just worked themselves out and I, personally, got some much needed spiritual and emotional support.
Don't get me wrong, this sucks. It's not fair ... to Anna, to Ethan, to Kate, to Matt, to me, to all sorts of people. But bad stuff happens. It's completely out of our control. However, we still know that God is in control. So we take a deep breath and ask "Where do we go from here?"
Time for prayers.
Thanksgiving
Please give thanks that Anna is talking.
Please give thanks for our wisdom and strength as we interact with the doctors and nurses.
Please give thanks for the amazing care that Anna is receiving at the Children's Hospital.
Please give thanks that Anna is making great improvements every day.
Please give thanks that Anna passed the swallow test yesterday afternoon so that she can now drink water and eat applesauce (or pear sauce, if she prefers). Did you know there are people who are "swallow specialists"? I didn't know that before this past weekend.
Please give thanks for Anna's incredible determination and self-awareness. These personality traits are already doing wonders for her.
Requests
Please pray for good news from the pathology report and the oncology team. We've had enough bad news to last us awhile. We anticipate meeting with the team on Tuesday or Wednesday.
Please pray that Anna soon passes the next feeding test (I think it's for chewing), so that she can add more foods to her diet.
Please pray for continued strength for Anna, physically, mentally, emotionally, and spiritually. She really just wants to go home right now :(
Please pray that Anna's catheter stays out!
Please pray that God gives Matt and I the words on Monday as we meet again with many of the therapists and other hospital "helpers" with whom we will be working.
Two final things. We appreciate the cards and items that have been sent to Anna's room. At this point, I think she would most enjoy pictures that other kids have drawn for her (nature scenes, animals, people, rainbows, etc.) or notes about random things in life (like the Olympics or a silly joke or a little poem). Our church family has given Anna a binder in which to keep these drawings and notes.
We are beginning to get an understanding of the financial needs that we will have in the weeks and months to come. For example, we will need to hire someone to help out on the home front. My parents have been great, but we want them to remain grandparents, not caregivers. We don't want to ask for money because we could probably find ways to make things work. However, if you feel moved to help us financially, a fund has been set up at our church. You can contact Cindy Light at cindylight87@gmail.com for more information. We will strive to be good stewards of the gifts given us.
Thank you again for all of your thoughts and prayers. Don't doubt their effectiveness.
Saturday, February 8, 2014
Saturday noon
Anna and Matt had another relatively uneventful night in the PICU. Kate, Ethan, and I stayed at home together. My parents left this morning to go home; my mom is coming back this evening to continue helping out until we have more permanent plans in place. This morning I got to have a "normal" morning with Kate and Ethan; the three of us needed that. Melissa, Anna's godmother, will be helping out until my mom gets back later today.
Matt and I have been getting our medical information in stages. At this point we're relying on what we see in Anna and what the doctors tell us. Neither of us have done any outside research, nor do we plan to any time soon. We think that's best right now.
So here's a summary of what we know. Granted, neither of us are neurologists, but we can get some of the basic ideas. Some of this may be inaccurate, but it's what we know about Anna's situation right now.
Anna's tumor was located in her cerebellum and was touching the brain stem. The cerebellum is responsible for muscle coordination. The balance issues she was experiencing in the week prior to her diagnosis were a result of the tumor. Her other symptoms (nausea, headache, fatigue) were a result of the spinal fluid building up in her brain (inter-cranial pressure or ICP is the fancy term). With the removal of the tumor and the placement of the drain on Monday night, her nausea and headache have diminished. She's still tired, but for other reasons.
Brain surgery is a big deal, for a lot of reasons. Anna's was additionally challenging because of the exact location of the tumor. The neurosurgeon is confident that there were no nerves cut or permanently damaged during the surgery. However, many of the nerves around the site of Anna's tumor were stunned. The nerve pathways still exist, but they need to be reminded of how to function. The nerves that were stunned have no connection to cognition. Anna's personality, memories, intelligence, etc. is still intact. The nerves that were stunned were the ones in charge of her muscles. She is going to have to remind her body how to do a lot of muscular movements. She has feeling and movement in all of her extremities and face, which is great. However, reminding her body how to work is going to take a long time and a lot of work on Anna's part. To put it in perspective, it took Anna 6 1/2 years to learn how to do all of the things that she could do two weeks ago. It will probably take several months for her body to remember all of those skills.
In other words, we're at the start of a long journey. We appreciate all of the support and offers for help this past week, but Anna and the rest of the family will need continued support in the months come. We'll keep everyone updated about what those specific needs will be.
Today's plan for Anna is to continue making baby steps in helping her body heal from the surgery. We hope that Kate, Ethan, and I will be back at the hospital this afternoon and Matt plans on coming home with them this evening.
Time for prayers.
Thanksgiving
Please give thanks that I was able to be home with the other kids last night and this morning. Like I said before, the three of us needed that.
Please give thanks that my voice has somewhat returned and Matt's cold isn't too bad.
Please give thanks for the wonderful support we have received this past week.
Please give thanks that the therapists who visited with Anna yesterday received clear signals that Anna was not yet ready to drink.
Please give thanks that Kate and I got home safely last night with all of the parts of the Honda. (Our old Honda has always had issues with its exhaust system and the troublesome exhaust has been getting louder during this past week. Matt warned me of this and when Kate and I left, and we thought we heard something from the car dragging while on University Ave. Kate and I prayed that we would make it home with all of the car's parts. The dragging sound stopped and when my dad checked things this morning, he said that everything was still there. Hooray!)
Requests
Please pray that Anna is able to better communicate with us each day. She talks a little more every day, especially if she's feisty about something (like when a nurse was treating her like a preschooler, instead of a bright 1st grader or when I thought I figured out the answer to our 20 questions game, but she had to tell me I was wrong :)
Please pray for Anna's emotional and spiritual state. Since she can't tell us what she's feeling and thinking yet, we don't really know how she's responding to the situation.
Please continue to pray for strength for Matt and me.
Please continue to pray for Kate and Ethan.
Maybe this is too much information, but please pray for Anna's urination. For those of you who know Anna better, you know that she's a "holder" when it comes to peeing, and just doesn't need to go to the bathroom as much as, say, her younger sister :) This characteristic isn't doing her any favors in the hospital. Please pray that Anna is able to have an easier time relaxing and using her muscles so that she doesn't need a catheter. I hope that Anna doesn't mind me sharing this kind of information when she's older and wants to look back at this blog/journal. Oh, well. We'll cross that bridge when we come to it :)
We're, hopefully, at a more stable point right now than we were a few days ago so I don't plan on updating this blog until sometime on Monday, when there is more news to report. We are also anticipating meeting with the oncology team early next week to see where we go from here.
We will continue to funnel specific needs through Cindy at church. Thank you all again for your continued thoughts and prayer.
Matt and I have been getting our medical information in stages. At this point we're relying on what we see in Anna and what the doctors tell us. Neither of us have done any outside research, nor do we plan to any time soon. We think that's best right now.
So here's a summary of what we know. Granted, neither of us are neurologists, but we can get some of the basic ideas. Some of this may be inaccurate, but it's what we know about Anna's situation right now.
Anna's tumor was located in her cerebellum and was touching the brain stem. The cerebellum is responsible for muscle coordination. The balance issues she was experiencing in the week prior to her diagnosis were a result of the tumor. Her other symptoms (nausea, headache, fatigue) were a result of the spinal fluid building up in her brain (inter-cranial pressure or ICP is the fancy term). With the removal of the tumor and the placement of the drain on Monday night, her nausea and headache have diminished. She's still tired, but for other reasons.
Brain surgery is a big deal, for a lot of reasons. Anna's was additionally challenging because of the exact location of the tumor. The neurosurgeon is confident that there were no nerves cut or permanently damaged during the surgery. However, many of the nerves around the site of Anna's tumor were stunned. The nerve pathways still exist, but they need to be reminded of how to function. The nerves that were stunned have no connection to cognition. Anna's personality, memories, intelligence, etc. is still intact. The nerves that were stunned were the ones in charge of her muscles. She is going to have to remind her body how to do a lot of muscular movements. She has feeling and movement in all of her extremities and face, which is great. However, reminding her body how to work is going to take a long time and a lot of work on Anna's part. To put it in perspective, it took Anna 6 1/2 years to learn how to do all of the things that she could do two weeks ago. It will probably take several months for her body to remember all of those skills.
In other words, we're at the start of a long journey. We appreciate all of the support and offers for help this past week, but Anna and the rest of the family will need continued support in the months come. We'll keep everyone updated about what those specific needs will be.
Today's plan for Anna is to continue making baby steps in helping her body heal from the surgery. We hope that Kate, Ethan, and I will be back at the hospital this afternoon and Matt plans on coming home with them this evening.
Time for prayers.
Thanksgiving
Please give thanks that I was able to be home with the other kids last night and this morning. Like I said before, the three of us needed that.
Please give thanks that my voice has somewhat returned and Matt's cold isn't too bad.
Please give thanks for the wonderful support we have received this past week.
Please give thanks that the therapists who visited with Anna yesterday received clear signals that Anna was not yet ready to drink.
Please give thanks that Kate and I got home safely last night with all of the parts of the Honda. (Our old Honda has always had issues with its exhaust system and the troublesome exhaust has been getting louder during this past week. Matt warned me of this and when Kate and I left, and we thought we heard something from the car dragging while on University Ave. Kate and I prayed that we would make it home with all of the car's parts. The dragging sound stopped and when my dad checked things this morning, he said that everything was still there. Hooray!)
Requests
Please pray that Anna is able to better communicate with us each day. She talks a little more every day, especially if she's feisty about something (like when a nurse was treating her like a preschooler, instead of a bright 1st grader or when I thought I figured out the answer to our 20 questions game, but she had to tell me I was wrong :)
Please pray for Anna's emotional and spiritual state. Since she can't tell us what she's feeling and thinking yet, we don't really know how she's responding to the situation.
Please continue to pray for strength for Matt and me.
Please continue to pray for Kate and Ethan.
Maybe this is too much information, but please pray for Anna's urination. For those of you who know Anna better, you know that she's a "holder" when it comes to peeing, and just doesn't need to go to the bathroom as much as, say, her younger sister :) This characteristic isn't doing her any favors in the hospital. Please pray that Anna is able to have an easier time relaxing and using her muscles so that she doesn't need a catheter. I hope that Anna doesn't mind me sharing this kind of information when she's older and wants to look back at this blog/journal. Oh, well. We'll cross that bridge when we come to it :)
We're, hopefully, at a more stable point right now than we were a few days ago so I don't plan on updating this blog until sometime on Monday, when there is more news to report. We are also anticipating meeting with the oncology team early next week to see where we go from here.
We will continue to funnel specific needs through Cindy at church. Thank you all again for your continued thoughts and prayer.
Friday, February 7, 2014
Friday morning
As the resident doctor has told me the last two mornings, any uneventful night in the PICU is a good night. Last night was a good night for Anna. She was able to get some sleep, albeit not much.
Yesterday's MRI confirmed what the surgeons had thought after surgery. They got most of the large tumor, but a small bit remained. This is not of any additional concern, however; the neurosurgeon informed us that as long as they get at least 95% of the tumor, Anna's chances remain the same as if they got 100%, especially considering that she will be undergoing some pretty intensive radiation and chemotherapy.
Yesterday afternoon Anna got to see all four of her grandparents as well as Kate and Ethan. Those visits from close family cheer her up a bit, but she's not ready for other visitors yet, nor are we. During the day, we're lucky to get 30 minutes without any visitors from hospital staff. The extent of the support system here at Children's Hospital for kids like Anna is incredible. We have met SO many people whose job it is to help kids like Anna and families like ours.
The "big things" happening today are regarding Anna's nutrition and communication. Yesterday afternoon the nurses placed a feeding tube in Anna so that she could start getting some calories and nutrition to help her body heal. She will have a speech evaluation sometime today to check her swallowing skills. Once that is done, then Anna can start drinking and eating a little bit at a time. We realize that she will probably have the feeding tube in for a little while until she can get all of her calories and nutrition orally.
Right now Anna doesn't talk much. (How many times over the past few years have I wished for that? Just a reminder to be careful what you wish for :) She can communicate, however. Yesterday there was a little concern about whether or not she experienced a rare side effect of this kind of brain surgery in which a person becomes mute for a few weeks. I think that concern has passed, though, since Anna has talked to me today a few times with words. Right now her main communication is through hand squeezes, but she surprised us all by using the baby signs for "drink, please" earlier today. Having a little brother who is learning how to talk has it's own advantages in situations like this.
Anna and I had a relatively long conversation earlier this morning. From it I surmised that she is fully aware of everything that is going on, and more importantly for the short term, that she is getting a bit bored of lying around and staring at the ceiling. So we're working on that. Some options are movies, books on CD, music (which she's been listening to almost non-stop since Monday), games, flash-cards, etc. The child life specialists here at the hospital have lots of resources for now, but somewhere down the line it might be nice to have some other choices, too.
At the moment, Matt and I are very hopeful. Anyone who knows Anna like we do knows that she can be a very determined little girl. We believe that this particular personality trait can serve her well.
Time for prayers
Thanksgiving
Matt was able to rest relatively well in the sleep room last night.
The nutrition component was figured out quickly and easily yesterday and Anna is now receiving adequate nutrition.
Anna is able to communicate with me. I prayed hard about this one last night.
Kate and Ethan were able to come to the hospital yesterday to spend some time with me and to see Anna.
Thank you, personally, for all of the prayers for strength and wisdom for Matt and me. When I start asking the doctors and nurses questions, I know the words are coming from God. There's no way I would be able to do what I'm doing without God's help.
Requests
Please pray that Anna's physical therapy visit today is successful enough so that the speech therapist can assess her ability to swallow so that Anna can drink some water if she wants to. I know that's a little much, so how about just pray that she can drink water this weekend.
Please pray that Anna is able to get some rest today and tonight so that her body continues to heal.
Please pray that we can help Anna focus her incredible determination skills into helping her heal.
Please pray that I get my voice back. Because of everything, including the dry air of hospitals, I have lost my voice a bit. It'd be nice to be able to talk more easily :)
Please pray that I am able to spend the night at home tonight with Kate and Ethan; Kate really needs that right now.
Please pray that Matt's cold that just seems to be starting goes through him quickly and easily so that it doesn't hamper anything with regards to Anna.
We realize that many of you want to help. Up until now, your prayers have been all we needed. We're starting to get more of a sense of what we need beyond prayers. If you're interested in helping, you can contact Cindy Light at Lutheran Church of the Living Christ (cindylight87@gmail.com) or CLM at the McFarland Lutheran Church. Both will be informed of specific needs that we may have. Thank you in advance for all of the support and help.
I will close with a quote from the Lutheran Hours Ministries daily devotions. I signed up for these last year, but honestly haven't been reading them for a few months even though they get sent to me every day. This morning I opened up the email and found encouragement in the words. We feel God's presence with us very closely during this journey.
"The question is what will you do when you cannot stand to deal with any more problems and feel overwhelmed by the difficulties of life?
Now I cannot tell what kind of problem or difficulty may be yours. Possibly it is bad friends, or drink, or drugs or, well, it could be just about anything, couldn't it? And the worst part is every time you think you've fixed your problems they seem to come back stronger than ever.
If that is your situation, I am pleased to say there is Someone who can help. Understand, He is not a temporary solution. The changes He proposes are permanent.
Of course, I am speaking about Jesus. He is the One who encourages us to "Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your soul."
Since He is the Son of God He is always ready to help you, always prepared to give you strength and guidance, so you may face the daily struggle. Come to Him in prayer. The Holy Spirit will open your heart, so you may tell the Savior your problems. And if you're wondering if you can be sure, remember He is your best Friend. He died on a cross to forgive your sins and give you eternal life. What greater proof of love can He offer than that?
THE PRAYER: Lord, I need Your help in my day-to-day problems. Guide me and enable me to find the rest my Savior has promised. In Jesus' Name I ask it. Amen.
And all God's people said "Amen"!
Yesterday's MRI confirmed what the surgeons had thought after surgery. They got most of the large tumor, but a small bit remained. This is not of any additional concern, however; the neurosurgeon informed us that as long as they get at least 95% of the tumor, Anna's chances remain the same as if they got 100%, especially considering that she will be undergoing some pretty intensive radiation and chemotherapy.
Yesterday afternoon Anna got to see all four of her grandparents as well as Kate and Ethan. Those visits from close family cheer her up a bit, but she's not ready for other visitors yet, nor are we. During the day, we're lucky to get 30 minutes without any visitors from hospital staff. The extent of the support system here at Children's Hospital for kids like Anna is incredible. We have met SO many people whose job it is to help kids like Anna and families like ours.
The "big things" happening today are regarding Anna's nutrition and communication. Yesterday afternoon the nurses placed a feeding tube in Anna so that she could start getting some calories and nutrition to help her body heal. She will have a speech evaluation sometime today to check her swallowing skills. Once that is done, then Anna can start drinking and eating a little bit at a time. We realize that she will probably have the feeding tube in for a little while until she can get all of her calories and nutrition orally.
Right now Anna doesn't talk much. (How many times over the past few years have I wished for that? Just a reminder to be careful what you wish for :) She can communicate, however. Yesterday there was a little concern about whether or not she experienced a rare side effect of this kind of brain surgery in which a person becomes mute for a few weeks. I think that concern has passed, though, since Anna has talked to me today a few times with words. Right now her main communication is through hand squeezes, but she surprised us all by using the baby signs for "drink, please" earlier today. Having a little brother who is learning how to talk has it's own advantages in situations like this.
Anna and I had a relatively long conversation earlier this morning. From it I surmised that she is fully aware of everything that is going on, and more importantly for the short term, that she is getting a bit bored of lying around and staring at the ceiling. So we're working on that. Some options are movies, books on CD, music (which she's been listening to almost non-stop since Monday), games, flash-cards, etc. The child life specialists here at the hospital have lots of resources for now, but somewhere down the line it might be nice to have some other choices, too.
At the moment, Matt and I are very hopeful. Anyone who knows Anna like we do knows that she can be a very determined little girl. We believe that this particular personality trait can serve her well.
Time for prayers
Thanksgiving
Matt was able to rest relatively well in the sleep room last night.
The nutrition component was figured out quickly and easily yesterday and Anna is now receiving adequate nutrition.
Anna is able to communicate with me. I prayed hard about this one last night.
Kate and Ethan were able to come to the hospital yesterday to spend some time with me and to see Anna.
Thank you, personally, for all of the prayers for strength and wisdom for Matt and me. When I start asking the doctors and nurses questions, I know the words are coming from God. There's no way I would be able to do what I'm doing without God's help.
Requests
Please pray that Anna's physical therapy visit today is successful enough so that the speech therapist can assess her ability to swallow so that Anna can drink some water if she wants to. I know that's a little much, so how about just pray that she can drink water this weekend.
Please pray that Anna is able to get some rest today and tonight so that her body continues to heal.
Please pray that we can help Anna focus her incredible determination skills into helping her heal.
Please pray that I get my voice back. Because of everything, including the dry air of hospitals, I have lost my voice a bit. It'd be nice to be able to talk more easily :)
Please pray that I am able to spend the night at home tonight with Kate and Ethan; Kate really needs that right now.
Please pray that Matt's cold that just seems to be starting goes through him quickly and easily so that it doesn't hamper anything with regards to Anna.
We realize that many of you want to help. Up until now, your prayers have been all we needed. We're starting to get more of a sense of what we need beyond prayers. If you're interested in helping, you can contact Cindy Light at Lutheran Church of the Living Christ (cindylight87@gmail.com) or CLM at the McFarland Lutheran Church. Both will be informed of specific needs that we may have. Thank you in advance for all of the support and help.
I will close with a quote from the Lutheran Hours Ministries daily devotions. I signed up for these last year, but honestly haven't been reading them for a few months even though they get sent to me every day. This morning I opened up the email and found encouragement in the words. We feel God's presence with us very closely during this journey.
"The question is what will you do when you cannot stand to deal with any more problems and feel overwhelmed by the difficulties of life?
Now I cannot tell what kind of problem or difficulty may be yours. Possibly it is bad friends, or drink, or drugs or, well, it could be just about anything, couldn't it? And the worst part is every time you think you've fixed your problems they seem to come back stronger than ever.
If that is your situation, I am pleased to say there is Someone who can help. Understand, He is not a temporary solution. The changes He proposes are permanent.
Of course, I am speaking about Jesus. He is the One who encourages us to "Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your soul."
Since He is the Son of God He is always ready to help you, always prepared to give you strength and guidance, so you may face the daily struggle. Come to Him in prayer. The Holy Spirit will open your heart, so you may tell the Savior your problems. And if you're wondering if you can be sure, remember He is your best Friend. He died on a cross to forgive your sins and give you eternal life. What greater proof of love can He offer than that?
THE PRAYER: Lord, I need Your help in my day-to-day problems. Guide me and enable me to find the rest my Savior has promised. In Jesus' Name I ask it. Amen.
And all God's people said "Amen"!
Thursday, February 6, 2014
Update - Thursday mid-day
Last night went as well as can be expected for a little girl who just had brain surgery.
Anna was brought back to the room before she was awakened so Matt and I were the first faces she saw when she woke up. She was doing well enough that the doctors decided to extubate her last night instead of keeping her sedated overnight. Once the breathing tube was out, Anna was responsive and able to talk to us a little bit.
She complained of her stomach hurting overnight some, but the anti-nausea medicine seemed to help her out with that.
This morning Anna had a follow-up MRI done. We will probably get the results back later this afternoon.
The next step for Miss Anna is getting some calories and nutrition in her system so that she can heal from the surgery and build up some strength. There are a few options regarding her nutritional component and we'll know more later today about how everyone will proceed with that.
Thanksgiving prayers
Anna's nausea subsided overnight and her pain seems to be under control.
I was able to sleep decently last night so I feel a bit more like I can function today.
The other kids are heading over here to the hospital this afternoon so that I can spend some time with them.
Prayer requests
Please pray that Anna stays comfortable and calm.
Please pray that the course of action regarding Anna's nutrition is clear and effective.
Please continue to pray for Kate and Ethan as life is pretty disruptive for them these days.
Please continue to pray for strength and wisdom for Matt and me.
We will be using our church to coordinate our family's non-medical needs. I will post the email address and/or phone number of the woman in charge once I've had a chance to work some things out with her.
Thank you again for all of your thoughts and prayers.
Anna was brought back to the room before she was awakened so Matt and I were the first faces she saw when she woke up. She was doing well enough that the doctors decided to extubate her last night instead of keeping her sedated overnight. Once the breathing tube was out, Anna was responsive and able to talk to us a little bit.
She complained of her stomach hurting overnight some, but the anti-nausea medicine seemed to help her out with that.
This morning Anna had a follow-up MRI done. We will probably get the results back later this afternoon.
The next step for Miss Anna is getting some calories and nutrition in her system so that she can heal from the surgery and build up some strength. There are a few options regarding her nutritional component and we'll know more later today about how everyone will proceed with that.
Thanksgiving prayers
Anna's nausea subsided overnight and her pain seems to be under control.
I was able to sleep decently last night so I feel a bit more like I can function today.
The other kids are heading over here to the hospital this afternoon so that I can spend some time with them.
Prayer requests
Please pray that Anna stays comfortable and calm.
Please pray that the course of action regarding Anna's nutrition is clear and effective.
Please continue to pray for Kate and Ethan as life is pretty disruptive for them these days.
Please continue to pray for strength and wisdom for Matt and me.
We will be using our church to coordinate our family's non-medical needs. I will post the email address and/or phone number of the woman in charge once I've had a chance to work some things out with her.
Thank you again for all of your thoughts and prayers.
Wednesday, February 5, 2014
Out of surgery
Anna is out of surgery. Everything went as well as expected considering the circumstances. She will be sedated overnight to keep her calm and let her rest.
Thank you for your thoughts and prayers.
Thank you for your thoughts and prayers.
Update
Anna is in surgery right now and so far everything is going smoothly with that.
However, there is bad news. The pediatric oncology team met with Matt and I earlier today with the results from Monday night's MRI. Nothing is known for certain until the pathology reports come back, but the doctors are pretty certain that Anna has Medulloblastoma. Not only that, but the cancer is not localized to the tumor. Basically, Anna has one large tumor that they are in the process of removing, and lots of little cancer spots around her brain and spinal cord.
The current plan is to get her through the surgery today, help her heal from the trauma of the last few days, and then start a course of treatment which includes radiation and chemotherapy.
Good news. Kids with this kind of cancer can be cured. We are in one of the best possible facilities for dealing with this kind of problem. As a family, we have already experienced the incredible support network we have here in Dane County and around the country. The doctors and nurses here are literally some of the best around. The doctors still assure us that there is nothing different that we or the doctors could have done in the past days and weeks that would have made this any easier.
Bad news. Since Anna is considered in the "high-risk" category for Medulloblastoma because of the spread of the cancer, she will need to undergo some pretty intensive radiation treatments. This means that it's not a question of "if" there will be long term side effects, but instead the questions are "what kinds of long term side effects will there be" and "how extensive will they be?"
So here's the current prayer requests.
Please continue to pray that the surgery today safely gets all of the big tumor.
Please pray that Anna does not experience any side effects from being under anesthesia, specifically no more nausea or headaches.
Please pray that Anna gets a bit of an appetite back tomorrow and starts eating again.
Please pray that Kate finds words to express what she's feeling and that we can help her find strategies to cope with the situation. All she knows is that Anna is sick and needs to be in the hospital, but she's having a hard time in her own way.
Please pray that Ethan stays strong and resilient.
Please pray that I am able to get some restful sleep tonight. Matt and I will be at the hospital over night; Matt will be in Anna's room, but I will be down the hall in a "sleep room". I haven't had much sleep in the last few days and was already pretty tired and empty before this past weekend began.
Thanksgiving prayers ... Anna's nausea subsided a bit overnight so she was able to rest a bit. Matt and my parents were able to sleep well at our home last night. Instead of struggling to get Anna to urinate, a catheter was easily placed overnight.
Also, Matt and I are trying to keep life as stable and constant for Kate and Ethan as we can. This means that we may be doing things with those kids out in the community and you may run into us. This may sound weird, but if this were happening to another family, I'd like to know what to do or say if I ran into them somewhere. Now that it's happening to us, here are some ideas. Feel free to say hi. Feel free to ask about Kate and Ethan and how they're doing on that particular day. Please don't ask how we are doing or how Anna is doing. Please realize that if we're with Kate, we're probably trying to put in some "Kate time" and want to keep our focus mainly on her so we won't want to talk with other adults for very long. Any "Kate time" that we have had with her since Sunday has been very disjointed and has had lots of interruptions. Thank you for your understanding.
We're starting to get some ideas of how we'll need help to get through the days and weeks to come, but will probably use someone from our church to coordinate that. Stay tuned to this blog for more information.
We are going to stop using Facebook to communicate and will strictly be using this blog from now on.
Thank you so much for your thoughts and prayers. We know that there are literally thousands of people all around the country thinking about us and praying for Anna.
Life is just not fair right now, but we know and trust that God is in control. He will continue to be with us and our family in the days and weeks to come.
However, there is bad news. The pediatric oncology team met with Matt and I earlier today with the results from Monday night's MRI. Nothing is known for certain until the pathology reports come back, but the doctors are pretty certain that Anna has Medulloblastoma. Not only that, but the cancer is not localized to the tumor. Basically, Anna has one large tumor that they are in the process of removing, and lots of little cancer spots around her brain and spinal cord.
The current plan is to get her through the surgery today, help her heal from the trauma of the last few days, and then start a course of treatment which includes radiation and chemotherapy.
Good news. Kids with this kind of cancer can be cured. We are in one of the best possible facilities for dealing with this kind of problem. As a family, we have already experienced the incredible support network we have here in Dane County and around the country. The doctors and nurses here are literally some of the best around. The doctors still assure us that there is nothing different that we or the doctors could have done in the past days and weeks that would have made this any easier.
Bad news. Since Anna is considered in the "high-risk" category for Medulloblastoma because of the spread of the cancer, she will need to undergo some pretty intensive radiation treatments. This means that it's not a question of "if" there will be long term side effects, but instead the questions are "what kinds of long term side effects will there be" and "how extensive will they be?"
So here's the current prayer requests.
Please continue to pray that the surgery today safely gets all of the big tumor.
Please pray that Anna does not experience any side effects from being under anesthesia, specifically no more nausea or headaches.
Please pray that Anna gets a bit of an appetite back tomorrow and starts eating again.
Please pray that Kate finds words to express what she's feeling and that we can help her find strategies to cope with the situation. All she knows is that Anna is sick and needs to be in the hospital, but she's having a hard time in her own way.
Please pray that Ethan stays strong and resilient.
Please pray that I am able to get some restful sleep tonight. Matt and I will be at the hospital over night; Matt will be in Anna's room, but I will be down the hall in a "sleep room". I haven't had much sleep in the last few days and was already pretty tired and empty before this past weekend began.
Thanksgiving prayers ... Anna's nausea subsided a bit overnight so she was able to rest a bit. Matt and my parents were able to sleep well at our home last night. Instead of struggling to get Anna to urinate, a catheter was easily placed overnight.
Also, Matt and I are trying to keep life as stable and constant for Kate and Ethan as we can. This means that we may be doing things with those kids out in the community and you may run into us. This may sound weird, but if this were happening to another family, I'd like to know what to do or say if I ran into them somewhere. Now that it's happening to us, here are some ideas. Feel free to say hi. Feel free to ask about Kate and Ethan and how they're doing on that particular day. Please don't ask how we are doing or how Anna is doing. Please realize that if we're with Kate, we're probably trying to put in some "Kate time" and want to keep our focus mainly on her so we won't want to talk with other adults for very long. Any "Kate time" that we have had with her since Sunday has been very disjointed and has had lots of interruptions. Thank you for your understanding.
We're starting to get some ideas of how we'll need help to get through the days and weeks to come, but will probably use someone from our church to coordinate that. Stay tuned to this blog for more information.
We are going to stop using Facebook to communicate and will strictly be using this blog from now on.
Thank you so much for your thoughts and prayers. We know that there are literally thousands of people all around the country thinking about us and praying for Anna.
Life is just not fair right now, but we know and trust that God is in control. He will continue to be with us and our family in the days and weeks to come.
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