This morning Ethan and I headed to the hospital to visit Anna and check in with the medical team. Lynne, Anna's critical care nurse practitioner, assures me that Anna is doing as well as can be expected considering the circumstances. Anna is calm, safe, and comfortable.
She had a slight fever at one point over night, but her temperature came back down on its own. The doctors started her on some antibiotics as a preventative measure anyway.
Today Anna will have the rest of the long MRI that she was scheduled to have this week anyway. On Tuesday night they only took the images that were absolutely necessary, so today they need to take images of her spine to see how that all looks.
This weekend Anna will continue to be kept safe and comfortable. We have complete trust in the doctors and nurses working with Anna. Because of the level of care she needs, she is very high on everyone's priority lists. In addition, lots of people at the hospital have been touched by Anna and are keeping an extra vigilant eye on her.
The "plan" is to keep Anna on a ventilator until Tuesday. At that point she will have received five radiation treatments and four chemotherapy treatments. The doctors would like to extubate her as soon as possible to be able to see how the cancer is responding to the radiation. They may not know enough on Tuesday so she may have to be re-intubated if it looks like her body can't handle its breathing processes on its own yet. We'll cross that bridge when we come to it. But as we're learning, plans can change in a heartbeat.
As for the rest of the family, we're doing okay, all things considered. It's a relief right now to be able to be at home and know that Anna is being well taken care of. Matt took Kate this morning to Destination Discovery in McFarland and they both had a good time. I took Ethan with me to the hospital and he is also finding his way into people's hearts. No 15-month-old should ever be expected to feel this comfortable in the PICU, but Ethan is dealing with it like a champ. I think his presence is a bit refreshing to the doctors and nurses who work with very sick kids every day. Plus, he's a cutie who is learning how to flirt with strangers :)
Kate and Ethan both had to deal with the upheaval of life again this week. Ethan did pretty well, especially since he's gotten much more comfortable with Melissa's presence in our house lately. Kate had a harder time. She was pretty emotional about little things on Wednesday evening and Thursday morning, and she wasn't sleeping very well, either. Yesterday was theraputic for both her and me. I told her a "Kat, Hannah, and Wheat Thin" story (based on Kate, Anna, and Ethan) that cheered her up. Then while Ethan was napping, she and I cuddled up downstairs to watch The Lion King together. I think both of those things helped her sort out life again.
We're planning on taking a family field trip tomorrow morning to the hospital to visit Anna and record some more stories for her. Lynne suggested that we record our voices for Anna since she can hear, even if she isn't aware of much right now. Last night we found a voice recording app for one of the ipads and recorded a handful of books and songs for her, plus Ethan talking as much as he can. We're leaving that ipad at the hospital and the nurses will play those for Anna periodically. When we're there tomorrow we can add more to the repertoire.
Depending on what our "guts tell us", we may or may not go back to the hospital until Tuesday morning. We'll just have to wait and see. Although Anna is in safe hands, it would feel like a really long time to be away.
Time for prayers
Thanksgiving
Please thank God that Matt and I can sleep at home for a few nights.
Please thank God that Anna is calm, safe, and comfortable.
Please give thanks that all of this is happening in Madison, not Chicago.
Please give thanks for the exceptional quality of care that Anna is receiving.
Requests
Please pray that Anna continues to be calm, safe, and comfortable.
Please pray that our family can enjoy this weekend together.
Please pray for wisdom and strength for all of the medical professionals involved in Anna's care.
Please pray again for baby Charlie and his family. He is the fourth child of a college friend and, at only 3 months old, is on a heart transplant list. After being cleared to return home with his family to await a heart, they had to return to St. Louis after only 36 hours and will be there until Charlie's new heart is found. My heart aches for their family as we know all too well what kind of a roller coaster ride they are on.
Thank you again for your thoughts, prayers, and support. We wouldn't be able to do this on our own.
Friday, February 28, 2014
How to help our family
It has been brought to our attention that lots of people want to help our family, but don't exactly know how. This post will hopefully consolidate some of the information that may be buried within other blog posts.
Cindy Light at our church is coordinating efforts for our family here in Madison. Food, transportation for Kate, snow removal, and other goods and services are her realm. Cindy's email is cindylight87@gmail.com.
If you are interested in helping our family with the financial costs of Anna's medical treatment, you could do one of three things.
1) You could send a check to our church, Lutheran Church of the Living Christ, with "Anna Mischnick Fund" in the memo line.
Living Christ
Attention: Cindy Light
110 N. Gammon Road
Madison, WI 53717
2) You could come to "Songs for Anna", the benefit concert being put on by some of our close friends. It will be held on Sunday, March 9, from 3 until 6 p.m. at the McFarland High School. The suggested donation is $5 per child, $10 per adult ($20 per family maximum) at the door. There will be food, music, children's arts and crafts, a silent auction, and a bake sale. If you are interested in donating items for the auction or bake sale, you can contact our neighbor, Jenny, at jentravg@gmail.com.
3) You could wait until early next week when an online fundraising website will be set up for our family on Go Fund Me. I will post information about that site as soon as it becomes available.
As I mentioned before, we could probably make things work financially if we had to, but we will have many added expenses at this time because of Anna's disease, including childcare for the other children, transportation, and medical costs. We will strive to be good stewards with the gifts given us.
Cindy Light at our church is coordinating efforts for our family here in Madison. Food, transportation for Kate, snow removal, and other goods and services are her realm. Cindy's email is cindylight87@gmail.com.
If you are interested in helping our family with the financial costs of Anna's medical treatment, you could do one of three things.
1) You could send a check to our church, Lutheran Church of the Living Christ, with "Anna Mischnick Fund" in the memo line.
Living Christ
Attention: Cindy Light
110 N. Gammon Road
Madison, WI 53717
2) You could come to "Songs for Anna", the benefit concert being put on by some of our close friends. It will be held on Sunday, March 9, from 3 until 6 p.m. at the McFarland High School. The suggested donation is $5 per child, $10 per adult ($20 per family maximum) at the door. There will be food, music, children's arts and crafts, a silent auction, and a bake sale. If you are interested in donating items for the auction or bake sale, you can contact our neighbor, Jenny, at jentravg@gmail.com.
3) You could wait until early next week when an online fundraising website will be set up for our family on Go Fund Me. I will post information about that site as soon as it becomes available.
As I mentioned before, we could probably make things work financially if we had to, but we will have many added expenses at this time because of Anna's disease, including childcare for the other children, transportation, and medical costs. We will strive to be good stewards with the gifts given us.
Thursday, February 27, 2014
A new day
Anna has been at the hospital "alone" for the longest time since she was first admitted. "Alone" is a very relative term. Not only does she have many, many people employed by the hospital watching over her, but she always has Jesus with her.
Still, it's the longest time that we have been away from the hospital in weeks and it feels kind of weird.
I just spoke with Anna's palliative care nurse practitioner (yet another person who is watching over Anna, although her job is to coordinate and keep an eye on Anna's overall care and comfort). Lynne said Anna is doing great. She tolerated her radiation and chemotherapy very well this morning and is very comfortable. Lynne said that while Anna was having her bath this morning, she woke up slightly and was able to respond to the nurse by squeezing her hand appropriately. Lynne said this means that Anna is exactly where they want her to be ... calm and comfortable, but not so sedated that she's completely unaware. Whew. Relief.
I will probably head to the hospital tomorrow morning just to be there in person for the morning rounds, but otherwise we're not planning on having a sustained presence at the hospital again until Anna is awake and alert (and we're not feeling guilty about that decision). Selfishly, I'm looking forward to having a break from the back and forth routines of the last few weeks. It's going to feel really good to ride in a vehicle with Matt again and to sleep in our own bed for a few consecutive nights :)
In reflecting on the experiences of Tuesday evening and overnight on Tuesday, we do not regret any decisions we made. They were the right decisions to make at the time with the information that was available to everyone at the time. However, the head neurosurgeon stopped by our room at one point yesterday and apologized for how some things were presented to us on Tuesday night. We were not given much hope at that point and I think he would have liked to have presented information to us differently. But that is all in the past and today is a new day.
Now we have hope. After witnessing Anna's motivation, determination, and progress during her therapy sessions early this week, and now realizing the kind of pain she must have been in at that time, we know that Anna will make amazing progress when the cancer is gone. It will still be a long road, but now we (and others at the hospital) know what she is capable of.
Time for prayers
Thanksgiving
Please give thanks that Anna is safe and comfortable.
Please give thanks that Anna's radiation and chemotherapy has already started!
Please give thanks that the rest of our family gets a bit of a break from the crazy routines (or lack there of).
Please give thanks that we will not be having to travel back and forth to Chicago for treatments.
Please thank God for the strength Matt and I had to get through the wild ride on Tuesday and Wednesday.
Please give thanks for the amazing nurses Anna has had this week. As I've said before, they are all good. However, this week Anna's nurses have been exceptional.
Requests
Please ask God to watch over Anna's safety and comfort while she is on the respirator.
Please pray that the radiation and chemotherapy completely wipe out the cancer cells invading Anna's body.
Please pray for continued wisdom and strength for Matt, me, and all of Anna's care providers.
Please ask God to bless our family time this weekend, and to give us some much needed physical and emotional rest.
Please pray for those who are coordinating the benefit for Anna next weekend. It looks like some of us may be able to attend now that we're not in Chicago!
At the start of this journey my mom reminded me of a poem that had been on her mind. I'd like to share it now because I think it contains a good message. We realized afresh this week how God has his own plans for our family and we have no clue what they might be. For example, if we had been headed to Chicago this past Monday, things could have turned out very differently for Anna. God knows more than we could ever hope to understand.
"The Weaver"
My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
Still, it's the longest time that we have been away from the hospital in weeks and it feels kind of weird.
I just spoke with Anna's palliative care nurse practitioner (yet another person who is watching over Anna, although her job is to coordinate and keep an eye on Anna's overall care and comfort). Lynne said Anna is doing great. She tolerated her radiation and chemotherapy very well this morning and is very comfortable. Lynne said that while Anna was having her bath this morning, she woke up slightly and was able to respond to the nurse by squeezing her hand appropriately. Lynne said this means that Anna is exactly where they want her to be ... calm and comfortable, but not so sedated that she's completely unaware. Whew. Relief.
I will probably head to the hospital tomorrow morning just to be there in person for the morning rounds, but otherwise we're not planning on having a sustained presence at the hospital again until Anna is awake and alert (and we're not feeling guilty about that decision). Selfishly, I'm looking forward to having a break from the back and forth routines of the last few weeks. It's going to feel really good to ride in a vehicle with Matt again and to sleep in our own bed for a few consecutive nights :)
In reflecting on the experiences of Tuesday evening and overnight on Tuesday, we do not regret any decisions we made. They were the right decisions to make at the time with the information that was available to everyone at the time. However, the head neurosurgeon stopped by our room at one point yesterday and apologized for how some things were presented to us on Tuesday night. We were not given much hope at that point and I think he would have liked to have presented information to us differently. But that is all in the past and today is a new day.
Now we have hope. After witnessing Anna's motivation, determination, and progress during her therapy sessions early this week, and now realizing the kind of pain she must have been in at that time, we know that Anna will make amazing progress when the cancer is gone. It will still be a long road, but now we (and others at the hospital) know what she is capable of.
Time for prayers
Thanksgiving
Please give thanks that Anna is safe and comfortable.
Please give thanks that Anna's radiation and chemotherapy has already started!
Please give thanks that the rest of our family gets a bit of a break from the crazy routines (or lack there of).
Please give thanks that we will not be having to travel back and forth to Chicago for treatments.
Please thank God for the strength Matt and I had to get through the wild ride on Tuesday and Wednesday.
Please give thanks for the amazing nurses Anna has had this week. As I've said before, they are all good. However, this week Anna's nurses have been exceptional.
Requests
Please ask God to watch over Anna's safety and comfort while she is on the respirator.
Please pray that the radiation and chemotherapy completely wipe out the cancer cells invading Anna's body.
Please pray for continued wisdom and strength for Matt, me, and all of Anna's care providers.
Please ask God to bless our family time this weekend, and to give us some much needed physical and emotional rest.
Please pray for those who are coordinating the benefit for Anna next weekend. It looks like some of us may be able to attend now that we're not in Chicago!
At the start of this journey my mom reminded me of a poem that had been on her mind. I'd like to share it now because I think it contains a good message. We realized afresh this week how God has his own plans for our family and we have no clue what they might be. For example, if we had been headed to Chicago this past Monday, things could have turned out very differently for Anna. God knows more than we could ever hope to understand.
"The Weaver"
My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
Wednesday, February 26, 2014
Renewed hope
Early this morning the radiation oncologist here came and met with us to talk about Anna's treatment and prospects. Then it was decided that all of the big wigs involved in Anna's care should have a care conference and meet with us once they all got on the same page.
Here's what we learned. Anna's cancer is still treatable. Her chances of cure are not as high as they once were, but they are still significant. However, her treatment needs to start as soon as possible because of the way her brain is dealing with the added pressures that are not being taken care of via the ventricular shunt. In addition, Anna's safety was of primary concern because of her erratic breathing.
So it was decided by everyone that the safest and most comfortable thing for Anna at this time was to have her intubated and placed on a ventilator until we can see how her particular cancer reacts to the radiation. Today at about noon she went to the OR, was placed under general anesthesia, intubated, taken to the radiation center here at UW Hospital to have her "planning" CT done, and then she was given an initial burst of radiation to her brain to try to stop the growth of the tumor and cancer.
Anna will continue to be sedated until the effectiveness of the radiation is apparent and clear signs show that Anna's body could control its own breathing processes. We're not sure exactly how long this will be, but probably somewhere between 1 and 2 weeks.
Good things ...
We're not in Chicago right now.
We're going to be in Madison for awhile.
Anna's safety is the first concern.
This kind of cancer is very receptive to radiation therapy.
Anna is going to have the best and most expensive "baby sitters" until she wakes up. This means that Matt and I are not only cleared, but encouraged, to go home and get some rest.
Bad things ...
Anna's on a ventilator.
The rate of growth of the tumor was unexpected by many of the specialists here.
We're kind of in a holding pattern for a week or two.
As Matt and the nurse practitioner reassure me that we made the best decisions we could with the information available at the time. Things happened so fast yesterday evening; no one was really expecting Anna to decline so rapidly.
Thank you for all of your support, prayers, and hope. We still feel strongly that if the disease can be eradicated, Anna will make a full recovery. However, this next step is completely out of our hands. It's in God's hands and the hands of the workers here.
Here's what we learned. Anna's cancer is still treatable. Her chances of cure are not as high as they once were, but they are still significant. However, her treatment needs to start as soon as possible because of the way her brain is dealing with the added pressures that are not being taken care of via the ventricular shunt. In addition, Anna's safety was of primary concern because of her erratic breathing.
So it was decided by everyone that the safest and most comfortable thing for Anna at this time was to have her intubated and placed on a ventilator until we can see how her particular cancer reacts to the radiation. Today at about noon she went to the OR, was placed under general anesthesia, intubated, taken to the radiation center here at UW Hospital to have her "planning" CT done, and then she was given an initial burst of radiation to her brain to try to stop the growth of the tumor and cancer.
Anna will continue to be sedated until the effectiveness of the radiation is apparent and clear signs show that Anna's body could control its own breathing processes. We're not sure exactly how long this will be, but probably somewhere between 1 and 2 weeks.
Good things ...
We're not in Chicago right now.
We're going to be in Madison for awhile.
Anna's safety is the first concern.
This kind of cancer is very receptive to radiation therapy.
Anna is going to have the best and most expensive "baby sitters" until she wakes up. This means that Matt and I are not only cleared, but encouraged, to go home and get some rest.
Bad things ...
Anna's on a ventilator.
The rate of growth of the tumor was unexpected by many of the specialists here.
We're kind of in a holding pattern for a week or two.
As Matt and the nurse practitioner reassure me that we made the best decisions we could with the information available at the time. Things happened so fast yesterday evening; no one was really expecting Anna to decline so rapidly.
Thank you for all of your support, prayers, and hope. We still feel strongly that if the disease can be eradicated, Anna will make a full recovery. However, this next step is completely out of our hands. It's in God's hands and the hands of the workers here.
Hard Decisions
Things are not good for Anna.
Yesterday Anna started showing symptoms of increased intracranial pressure again. The doctors were pretty concerned that her shunt might be clogged. She had a quick brain MRI, but that came back showing that the shunt was working properly. The next step was to see if Anna had contracted some type of infection. Some spinal fluid was drawn via the shunt and she was started on a heavy dose of antibiotics. She hasn't had a fever and the initial results show that it wasn't an infection.
During this time Anna's breathing became very erratic, even to the point of not breathing for 5-10 seconds at a time. The doctors wanted to do a long MRI to see what was going on inside Anna's head, but they were concerned about putting her under general anesthesia given her shallow breaths. They decided to let Anna stay awake during the MRI and Matt and I were allowed to be in the room with her. Anna did a good job staying still for the hour long procedure, but Matt and I were about a minute away from pressing our "panic button" towards the end because of the slowness of Anna's breaths.
We returned to the PICU after the MRI. Anna was started on a super dose of steroids to try and take care of the apparent swelling inside her brain.
Then we received the bad news. In the three weeks since Anna had her last, long MRI, the cancer has grown and spread. This is very uncommon. The disease itself is putting pressure on Anna's brainstem which is why she has been having trouble breathing, among other things.
Last night we had to make two hard decisions. We decided that should Anna's breathing stop, we did not want her intubated. That would have been the last resort, anyway, but we opted to stop just short of this invasive procedure. Thankfully, Anna needed no external help breathing overnight.
The other hard decision we made was that should Anna's heart stop overnight, we chose not to have it restarted. Since the problem lies in the brain, not the heart, restarting her heart would not have made much difference. Thankfully, Anna's heart was fine overnight.
Anna's only hope would be to start intensive radiation therapy today here in Madison to try to kill all of the cancer cells invading her body. We will be meeting with everyone sometime this morning to discuss this option. We are told there is still hope for Anna's recovery, but her chances are much lower now.
At this point we do not want to speak with anyone outside our immediate families, but we wanted to share this latest step in Anna's journey with those who care and are praying.
Please pray today that God gives Matt and I clear guidance and wisdom with any decisions we have to make.
Please pray today that Anna is peaceful and without pain. In spite of her obvious pain yesterday, she was a rockstar during her therapy sessions. Her head really, really hurts whenever she is awake.
Anna has touched so many people's lives here in the hospital, in addition to those who know and love her outside of this building.
Yesterday Anna started showing symptoms of increased intracranial pressure again. The doctors were pretty concerned that her shunt might be clogged. She had a quick brain MRI, but that came back showing that the shunt was working properly. The next step was to see if Anna had contracted some type of infection. Some spinal fluid was drawn via the shunt and she was started on a heavy dose of antibiotics. She hasn't had a fever and the initial results show that it wasn't an infection.
During this time Anna's breathing became very erratic, even to the point of not breathing for 5-10 seconds at a time. The doctors wanted to do a long MRI to see what was going on inside Anna's head, but they were concerned about putting her under general anesthesia given her shallow breaths. They decided to let Anna stay awake during the MRI and Matt and I were allowed to be in the room with her. Anna did a good job staying still for the hour long procedure, but Matt and I were about a minute away from pressing our "panic button" towards the end because of the slowness of Anna's breaths.
We returned to the PICU after the MRI. Anna was started on a super dose of steroids to try and take care of the apparent swelling inside her brain.
Then we received the bad news. In the three weeks since Anna had her last, long MRI, the cancer has grown and spread. This is very uncommon. The disease itself is putting pressure on Anna's brainstem which is why she has been having trouble breathing, among other things.
Last night we had to make two hard decisions. We decided that should Anna's breathing stop, we did not want her intubated. That would have been the last resort, anyway, but we opted to stop just short of this invasive procedure. Thankfully, Anna needed no external help breathing overnight.
The other hard decision we made was that should Anna's heart stop overnight, we chose not to have it restarted. Since the problem lies in the brain, not the heart, restarting her heart would not have made much difference. Thankfully, Anna's heart was fine overnight.
Anna's only hope would be to start intensive radiation therapy today here in Madison to try to kill all of the cancer cells invading her body. We will be meeting with everyone sometime this morning to discuss this option. We are told there is still hope for Anna's recovery, but her chances are much lower now.
At this point we do not want to speak with anyone outside our immediate families, but we wanted to share this latest step in Anna's journey with those who care and are praying.
Please pray today that God gives Matt and I clear guidance and wisdom with any decisions we have to make.
Please pray today that Anna is peaceful and without pain. In spite of her obvious pain yesterday, she was a rockstar during her therapy sessions. Her head really, really hurts whenever she is awake.
Anna has touched so many people's lives here in the hospital, in addition to those who know and love her outside of this building.
Monday, February 24, 2014
Songs for Anna
A few of our good friends have put together a benefit concert for our family to help out with medical related expenses.
"Songs for Anna" will take place on Sunday, March 9 from 3 until 6 p.m. at the McFarland High School. Count This Penny and the Oak Street Ramblers will be performing. (I can't vouch for Count This Penny, who I have never seen, but I know the Ramblers are pretty good!)
The suggested donation is $5 per child or $10 per adult with a maximum of $20 per family with all of the tickets purchased at the door. The event includes food, music, a children's art/craft table, a bake sale, and a silent auction.
I'm taking this information straight off of the Facebook event page; I actually don't know much more about it than that. If anyone is interested in helping with the bake sale or auction, you can contact our neighbor, Jenny, via email (jentravg@gmail.com).
To be honest, I'm not sure if anyone from our immediate family will be attending, but I'm sure it will be a lot of fun. I can pretty much guarantee that Anna and I won't be there, but the other three may be on their way back from Chicago. To me, the 9th of March seems like a long time from now.
Today was an active day for Anna. She had two big physical therapy sessions, got her stitches and dressings removed from her scalp, and got a nice hair washing treatment this evening. She is pretty wiped out. Let's hope she sleeps well tonight.
The physical and occupational therapists were impressed with Anna, and as the speech therapist told us, they see lots of sick kids every day, so it's a good sign if these two ladies are impressed. They are planning on seeing Anna two times a day every day this week.
Unfortunately, we've hit a bit of a bump with this week's plan. Initially, everyone was on board with this week being set aside for Anna to recover and regain some strength and skills. However, that may not happen. The doctors want to do another long MRI (with anesthesia) as well as place a "G-tube" (instead of the "ng-tube" she currently has). Apparently, these things would have to be done on Thursday. That would kind of take away Anna's chance to recuperate at the end of this week.
There are too many factors surrounding the situation to go through them all on this blog. We understand that Anna's doctors have her interests in mind, but we're her parents, and we worked really hard for this week of "rest" here in Madison. We may be at one of the first crossroads where we don't know exactly what we should do. Please pray for wisdom for us tonight and peace tomorrow as I speak with Anna's primary care doctor here.
Time for the rest of the prayers
Thanksgiving
Please give thanks for our nurse today. Not only was he from McFarland, but he was very in tune with our family's needs.
Please give thanks for the understanding and compassion shown us today by the attending pediatric oncologist. As I've said before, all of the doctors here are good, but some mesh better with us than others.
Please give thanks that Anna was truly able to have her hair washed tonight; she loved it.
Please thank God that Melissa is able to help our family; consistency for Kate and Ethan is really important right now.
Please give thanks that we're still able to "make it work" for our family.
Requests
Please pray for restful sleep for Anna. She seems to have been sleeping more peacefully this evening than she has recently; this kid really needs it.
Please ask God to settle Anna's tummy and increase her appetite. Her stomach was unsettled again today. Whenever this happens, she loses out on the calories her body needs.
Please pray for wisdom and peace regarding any decisions we need to make regarding Anna's care this week.
Please pray for wisdom and insight for Anna's pediatric oncologist.
Please ask God to continue to bless us with exceptional nurses.
Please pray for Matt as he is juggling work, home, and hospital again this week.
Thank you for your continued support.
"Songs for Anna" will take place on Sunday, March 9 from 3 until 6 p.m. at the McFarland High School. Count This Penny and the Oak Street Ramblers will be performing. (I can't vouch for Count This Penny, who I have never seen, but I know the Ramblers are pretty good!)
The suggested donation is $5 per child or $10 per adult with a maximum of $20 per family with all of the tickets purchased at the door. The event includes food, music, a children's art/craft table, a bake sale, and a silent auction.
I'm taking this information straight off of the Facebook event page; I actually don't know much more about it than that. If anyone is interested in helping with the bake sale or auction, you can contact our neighbor, Jenny, via email (jentravg@gmail.com).
To be honest, I'm not sure if anyone from our immediate family will be attending, but I'm sure it will be a lot of fun. I can pretty much guarantee that Anna and I won't be there, but the other three may be on their way back from Chicago. To me, the 9th of March seems like a long time from now.
Today was an active day for Anna. She had two big physical therapy sessions, got her stitches and dressings removed from her scalp, and got a nice hair washing treatment this evening. She is pretty wiped out. Let's hope she sleeps well tonight.
The physical and occupational therapists were impressed with Anna, and as the speech therapist told us, they see lots of sick kids every day, so it's a good sign if these two ladies are impressed. They are planning on seeing Anna two times a day every day this week.
Unfortunately, we've hit a bit of a bump with this week's plan. Initially, everyone was on board with this week being set aside for Anna to recover and regain some strength and skills. However, that may not happen. The doctors want to do another long MRI (with anesthesia) as well as place a "G-tube" (instead of the "ng-tube" she currently has). Apparently, these things would have to be done on Thursday. That would kind of take away Anna's chance to recuperate at the end of this week.
There are too many factors surrounding the situation to go through them all on this blog. We understand that Anna's doctors have her interests in mind, but we're her parents, and we worked really hard for this week of "rest" here in Madison. We may be at one of the first crossroads where we don't know exactly what we should do. Please pray for wisdom for us tonight and peace tomorrow as I speak with Anna's primary care doctor here.
Time for the rest of the prayers
Thanksgiving
Please give thanks for our nurse today. Not only was he from McFarland, but he was very in tune with our family's needs.
Please give thanks for the understanding and compassion shown us today by the attending pediatric oncologist. As I've said before, all of the doctors here are good, but some mesh better with us than others.
Please give thanks that Anna was truly able to have her hair washed tonight; she loved it.
Please thank God that Melissa is able to help our family; consistency for Kate and Ethan is really important right now.
Please give thanks that we're still able to "make it work" for our family.
Requests
Please pray for restful sleep for Anna. She seems to have been sleeping more peacefully this evening than she has recently; this kid really needs it.
Please ask God to settle Anna's tummy and increase her appetite. Her stomach was unsettled again today. Whenever this happens, she loses out on the calories her body needs.
Please pray for wisdom and peace regarding any decisions we need to make regarding Anna's care this week.
Please pray for wisdom and insight for Anna's pediatric oncologist.
Please ask God to continue to bless us with exceptional nurses.
Please pray for Matt as he is juggling work, home, and hospital again this week.
Thank you for your continued support.
Sunday, February 23, 2014
Baby steps
Matt and I (and probably Kate and Ethan) are getting a little tired of living this way. Taking nightly turns at the hospital; eating meals wherever seems most convenient; dealing with all of the extra work and paperwork; not being home all together. It's taking it's toll. We're planning on my mom staying at the hospital overnight this coming Thursday so that Matt, Kate, Ethan, and I can all be home together for at least one night. Hopefully it goes as planned.
Medically speaking, Anna is fairly stable right now. She's been put on a medication to keep her blood pressure in check; it's been running high whenever she is on steroids for the brain swelling after surgeries. Hopefully the steroids will be done soon and then she can stop the blood pressure meds, too.
Matt and I both tend to be a bit discouraged when we first spend time with Anna after spending time with the other two kids. It's just hard to go from seeing Kate and Ethan running around, jumping, playing, yelling, etc. to seeing Anna barely able to move her limbs and struggling to talk. Neither Matt nor I realized how much of a setback Anna would have after the placement of the shunt on Tuesday. It was almost like starting back at the beginning. But I guess that's understandable; placing a device inside someone's brain is also brain surgery and it also comes with swelling and nerve stunning, just at a different level.
But Anna is progressing more and more each day. It will be interesting to see the therapists' reactions after not having worked with her all weekend. Hopefully they are impressed :)
We experienced a few "firsts" today that haven't happened in several weeks. First, Anna spend some time with other kids this morning while we were at church! A woman from our church who works as an occupational therapist at the UW hospitals offered to sit with Anna while we were at church. Her daughters really wanted to come along. When I asked Anna what she thought of that, she said "That would be fun." These were the first non-family kids with whom Anna has interacted since her admission to the hospital. Hopefully we can get a few more "playdates" worked out for this peer-deprived kiddo this week.
Another first was that Anna only took two short catnaps during the day. We're hoping that this means she'll sleep better overnight tonight. Her days and nights have gotten wildly mixed up over the course of the last few weeks.
Tonight our family had our first dinner with all five of us present and accounted for since this whole thing began. Matt brought along some lasagna from home, we packed Anna up in her wheelchair, and sat on the first floor of the hospital having dinner as a family. It felt good :) Anna even ate a few bites of the lasagna, a piece of broccoli, and a bowl of peaches. Food from home can be so appealing.
During the last few days Matt and I have been trying to take more of an active role in Anna's care at the hospital, which means that we're helping her shift positions in bed and trying to lift her in and out of the wheelchair. Prior to Tuesday's surgery, we did not feel safe doing these things because of all of the tubes going in and out of Anna. On Wednesday and Thursday Anna was still too sore and weak for us to be of much help. However, this evening, I was able to transfer Anna pretty much independently into her wheelchair. Hooray! We still need to have at least one nurse in the room for these transfers to make sure everyone is safe, but it feels good to have some of this care responsibility back.
Every day has it's challenges and successes. I cannot even remember how many people this morning at church told us they were praying for us, and I know that our church represents only a small percentage of those who are keeping our family in their prayers. When I feel like I have absolutely nothing left inside to go on, I know I can always rely on the army of angels surrounding us.
Time for prayers
Thanksgiving
Please give thanks that Anna is continuing to get stronger.
Please give thanks that Anna was able to have some stimulating interaction with other kids this morning.
Please give thanks that, even though Anna is on "isolation" status, we were still able to have a family dinner outside of her room tonight.
Please thank God that Matt and I seem to have a bottomless source of mental and physical strength right now.
Please thank God for hope.
Requests
Please pray that Anna's internal clock gets reset and that she can sleep all night without pain.
Please pray that Anna is able to spend the whole week getting stronger, without any other setbacks.
Please pray that Matt and I have the strength and wisdom to make it through one more day, one more week, living like we are.
Please ask God to gift us with great nurses this week.
Please ask God to be with any of Anna's friends who may come for playdates at the hospital; it might be a challenging experience for them.
I think I'm going to go to bed now.
Medically speaking, Anna is fairly stable right now. She's been put on a medication to keep her blood pressure in check; it's been running high whenever she is on steroids for the brain swelling after surgeries. Hopefully the steroids will be done soon and then she can stop the blood pressure meds, too.
Matt and I both tend to be a bit discouraged when we first spend time with Anna after spending time with the other two kids. It's just hard to go from seeing Kate and Ethan running around, jumping, playing, yelling, etc. to seeing Anna barely able to move her limbs and struggling to talk. Neither Matt nor I realized how much of a setback Anna would have after the placement of the shunt on Tuesday. It was almost like starting back at the beginning. But I guess that's understandable; placing a device inside someone's brain is also brain surgery and it also comes with swelling and nerve stunning, just at a different level.
But Anna is progressing more and more each day. It will be interesting to see the therapists' reactions after not having worked with her all weekend. Hopefully they are impressed :)
We experienced a few "firsts" today that haven't happened in several weeks. First, Anna spend some time with other kids this morning while we were at church! A woman from our church who works as an occupational therapist at the UW hospitals offered to sit with Anna while we were at church. Her daughters really wanted to come along. When I asked Anna what she thought of that, she said "That would be fun." These were the first non-family kids with whom Anna has interacted since her admission to the hospital. Hopefully we can get a few more "playdates" worked out for this peer-deprived kiddo this week.
Another first was that Anna only took two short catnaps during the day. We're hoping that this means she'll sleep better overnight tonight. Her days and nights have gotten wildly mixed up over the course of the last few weeks.
Tonight our family had our first dinner with all five of us present and accounted for since this whole thing began. Matt brought along some lasagna from home, we packed Anna up in her wheelchair, and sat on the first floor of the hospital having dinner as a family. It felt good :) Anna even ate a few bites of the lasagna, a piece of broccoli, and a bowl of peaches. Food from home can be so appealing.
During the last few days Matt and I have been trying to take more of an active role in Anna's care at the hospital, which means that we're helping her shift positions in bed and trying to lift her in and out of the wheelchair. Prior to Tuesday's surgery, we did not feel safe doing these things because of all of the tubes going in and out of Anna. On Wednesday and Thursday Anna was still too sore and weak for us to be of much help. However, this evening, I was able to transfer Anna pretty much independently into her wheelchair. Hooray! We still need to have at least one nurse in the room for these transfers to make sure everyone is safe, but it feels good to have some of this care responsibility back.
Every day has it's challenges and successes. I cannot even remember how many people this morning at church told us they were praying for us, and I know that our church represents only a small percentage of those who are keeping our family in their prayers. When I feel like I have absolutely nothing left inside to go on, I know I can always rely on the army of angels surrounding us.
Time for prayers
Thanksgiving
Please give thanks that Anna is continuing to get stronger.
Please give thanks that Anna was able to have some stimulating interaction with other kids this morning.
Please give thanks that, even though Anna is on "isolation" status, we were still able to have a family dinner outside of her room tonight.
Please thank God that Matt and I seem to have a bottomless source of mental and physical strength right now.
Please thank God for hope.
Requests
Please pray that Anna's internal clock gets reset and that she can sleep all night without pain.
Please pray that Anna is able to spend the whole week getting stronger, without any other setbacks.
Please pray that Matt and I have the strength and wisdom to make it through one more day, one more week, living like we are.
Please ask God to gift us with great nurses this week.
Please ask God to be with any of Anna's friends who may come for playdates at the hospital; it might be a challenging experience for them.
I think I'm going to go to bed now.
Saturday, February 22, 2014
Undeserved blessings
Things are relatively status quo for Anna right now. We're incredibly thankful that she has a whole week to just work on getting stronger. We're very hopeful that this opportunity to rest and recuperate will do her wonders.
On a different note, we've been the recipients of some pretty amazing experiences and opportunities because of Anna's situation.
Last week, or at least I think it was last week, the days are kind of running together now ... one evening while I was here at the hospital, a few of the UW Men's Hockey players came by for a visit. Our family does not usually follow many UW sporting events, but it was exciting nonetheless.
Earlier this week our family was gifted two ipads to use during this time. Within 24 hours of having access to them, our kids had facetime with one another and us at least 4 times :) I'm guessing that these generous gifts will be used every day for the next few months.
Today while my mom was staying with Anna, Phillip Phillips, the 2012 American Idol winner, stopped by for a visit. He has a benefit show later today and was spending the day with kids here at the hospital. Who would have thought that Anna would ever get to meet someone like him?
On a different note, we've been the recipients of some pretty amazing experiences and opportunities because of Anna's situation.
Last week, or at least I think it was last week, the days are kind of running together now ... one evening while I was here at the hospital, a few of the UW Men's Hockey players came by for a visit. Our family does not usually follow many UW sporting events, but it was exciting nonetheless.
Earlier this week our family was gifted two ipads to use during this time. Within 24 hours of having access to them, our kids had facetime with one another and us at least 4 times :) I'm guessing that these generous gifts will be used every day for the next few months.
Today while my mom was staying with Anna, Phillip Phillips, the 2012 American Idol winner, stopped by for a visit. He has a benefit show later today and was spending the day with kids here at the hospital. Who would have thought that Anna would ever get to meet someone like him?
Time for prayers
Thanksgiving
Please give thanks that my mom was able to be with Anna today so that Matt and I could be at our house together for a short period of time.
Please give thanks that Anna is no longer in the PICU :)
Please give thanks that Anna will not be transferred to Chicago on Monday.
Please give thanks that Anna has not been nauseous for more than 24 hours.
Requests
Please pray that Anna continues to get stronger each day.
Please pray that Anna starts putting on some weight.
Please pray that Anna finds her inner strength and puts it to good use in the days to come.
I'd like to add a few other prayer requests that will go in a "shoot for the moon" category. When Anna was in Kindergarten she was given the opportunity to "shoot for the moon" with assignments or other work. Without fail, Anna would choose to shoot for the moon. Now that we know that God can and will work miracles for Anna, I'd like to ask for some. So here are a few "shoot for the moon" prayer requests.
Please pray that Anna becomes strong enough to ride safely in a carseat by this coming weekend.
Please pray for Anna's swift and complete recovery from her brain surgeries.
Please pray that the radiation and chemotherapy are 100% effective for Anna.
Thank you all for your continued prayers and support.
Friday, February 21, 2014
Thank you!
Thank you for all of your prayers and support!
We are now settled in our "general floor" room instead of in the PICU and we will be here for at least 7 days!
Many, many people here at the hospital were working overtime to make the change of plans happen and we are very grateful to all who helped, especially to those of you who have been praying.
Although we would have really liked to be going home this weekend for a day or two with Anna, staying in the hospital for some more intensive rehab for another week is probably second best, maybe even best, for her right now.
Since we've passed this big hurdle, we now pray that Anna shows everyone what she's really made of and makes some incredible, miraculous progress in the next week :) Part of that will hinge on some good rest for this kid; please pray that she can SLEEP at night and take a few good naps during the day.
Thank you again for your prayers for Anna, her care team, and myself today. Only God could have moved this mountain. Our God is an awesome God.
We are now settled in our "general floor" room instead of in the PICU and we will be here for at least 7 days!
Many, many people here at the hospital were working overtime to make the change of plans happen and we are very grateful to all who helped, especially to those of you who have been praying.
Although we would have really liked to be going home this weekend for a day or two with Anna, staying in the hospital for some more intensive rehab for another week is probably second best, maybe even best, for her right now.
Since we've passed this big hurdle, we now pray that Anna shows everyone what she's really made of and makes some incredible, miraculous progress in the next week :) Part of that will hinge on some good rest for this kid; please pray that she can SLEEP at night and take a few good naps during the day.
Thank you again for your prayers for Anna, her care team, and myself today. Only God could have moved this mountain. Our God is an awesome God.
Thursday, February 20, 2014
Not fair.
Anna will not be coming home this weekend. Nor will she be coming home before her treatment in Chicago. Unfortunately for her, we left our house 2 1/2 weeks ago for a trip to Urgent Care because we were worried about dehydration and she won't be home until May ... maybe later.
Am I discouraged? Yes. Am I pissed off? Yes. Do I wish things were different? Yes. Do I have any control? No.
After what seemed like a pretty good morning here for Anna with more movement and activity than she has had in awhile, the rehabilitation team wanted to meet with me this afternoon. The timing was terrible. I had just arrived with the other two kids and we were trying to figure out how and when my mom was going to get them home. So I said a quick good-bye to them and then headed to the meeting room to hear the plan.
Their plan was/is to transport Anna via ambulance to Lurie Children's Hospital in Chicago on Monday, have her undergo a whole series of tests and procedures that afternoon and evening, spend the night there, then be transported to CDH Proton Center on Tuesday for her radiation simulation, then be transported to an inpatient rehabilitation center nearby CDH for about two weeks until her radiation treatments start on March 10.
I was told this information by a whole team of hospital workers/support personnel who understandably have Anna's overall health and safety in mind, but who don't exactly know Anna or our family.
When I called Matt after the meeting to break the news to him, he was also understandably upset. However, he was thinking a bit more clearly than I was and suggested that Anna do a week of rehab here in Madison first before being transported down to Chicago. Our poor daughter hasn't gone more than 48 hours without major surgery, vomiting, diarrhea, and/or severe constipation. No one here knows what she is actually capable of given the chance. If she were to be transported to Chicago on Monday and have the days like they are planning, she will just have more regression and little to no progress.
So ... I talked (rather emotionally, I may say) to our day nurse, who paged the oncology pediatrician who is calling most of the shots. The doctor agreed that it was a good idea and is going to see what she can do to get things moved around.
However, there are lots and lots of people involved in Anna's care and it would require cooperation and extra work from many people in different places for this change of plans to actually work.
So I have one prayer request tonight, and one only.
Please pray that Anna can stay in Madison for a week of rehabilitation before being transported to Chicago.
Thank you.
Am I discouraged? Yes. Am I pissed off? Yes. Do I wish things were different? Yes. Do I have any control? No.
After what seemed like a pretty good morning here for Anna with more movement and activity than she has had in awhile, the rehabilitation team wanted to meet with me this afternoon. The timing was terrible. I had just arrived with the other two kids and we were trying to figure out how and when my mom was going to get them home. So I said a quick good-bye to them and then headed to the meeting room to hear the plan.
Their plan was/is to transport Anna via ambulance to Lurie Children's Hospital in Chicago on Monday, have her undergo a whole series of tests and procedures that afternoon and evening, spend the night there, then be transported to CDH Proton Center on Tuesday for her radiation simulation, then be transported to an inpatient rehabilitation center nearby CDH for about two weeks until her radiation treatments start on March 10.
I was told this information by a whole team of hospital workers/support personnel who understandably have Anna's overall health and safety in mind, but who don't exactly know Anna or our family.
When I called Matt after the meeting to break the news to him, he was also understandably upset. However, he was thinking a bit more clearly than I was and suggested that Anna do a week of rehab here in Madison first before being transported down to Chicago. Our poor daughter hasn't gone more than 48 hours without major surgery, vomiting, diarrhea, and/or severe constipation. No one here knows what she is actually capable of given the chance. If she were to be transported to Chicago on Monday and have the days like they are planning, she will just have more regression and little to no progress.
So ... I talked (rather emotionally, I may say) to our day nurse, who paged the oncology pediatrician who is calling most of the shots. The doctor agreed that it was a good idea and is going to see what she can do to get things moved around.
However, there are lots and lots of people involved in Anna's care and it would require cooperation and extra work from many people in different places for this change of plans to actually work.
So I have one prayer request tonight, and one only.
Please pray that Anna can stay in Madison for a week of rehabilitation before being transported to Chicago.
Thank you.
Roller Coaster Ride
Sometimes this journey feels a bit like a roller coaster ride. I started the day yesterday full of hope and expectation, but ended the day feeling very discouraged. Yet again, today things are looking up.
So far, everything still seems to be falling in place for us to get Anna home sometime this weekend. The necessary equipment (wheelchair, feeding supplies, etc.) is being delivered to the hospital this afternoon; Anna has been "released" from the PICU and is on "general floor care" as of yesterday (but still in the same room because there aren't any other beds available right now); and her most recent incision is healing nicely. I think we are just waiting for everyone's final stamp of approval.
However, yesterday Anna's spirit was empty. She had been steadily improving and using lots of spunk and gumption up until Sunday evening. Then her spirits sagged. Because of the constipation pain and the new surgery, she was feeling very unmotivated to do anything. When I talked with her yesterday afternoon about how she was going to be home this weekend, about how people are moving mountains to make this happen, her response was "I don't want to go home. I don't want to get better. I just want to lie in bed." That was really hard for me to hear.
I shared Anna's attitude with her nurse yesterday and her therapists in the afternoon and we came to the conclusion that she needed to get out of her room. This poor kid has been in some kind of (often miserable) pain constantly for the last 3-4 weeks and has spent the last 2+ weeks either in a hospital room, an operating room, an MRI or CT scan room, or on the way to or from one of these places. Yesterday afternoon after her therapy session, her nurse and I took Anna on a "field trip" around the 4th floor of the hospital. It certainly wasn't much from a normal 6 year old's standard, but it was huge for Miss Anna. We think it perked her up a bit, too.
This morning after her therapies, she went on an extended field trip to the first floor of Children's, plus across the sky-walk to the cafeteria. We have hopes that she'll get another trip in this afternoon when Kate and Ethan are around for a visit, too.
My mom is helping us out today at the hospital and told me that Anna seemed to get a bit of her determination back, that she was cooperating more readily with everyone and actually had the desire to do some of her exercises. What a relief that was for me to hear! As I told Anna yesterday, we will do all we can in our power to help her along this journey, but she is the only one who has the ultimate control of her body. If she doesn't want to get better, she won't.
Most likely, her poor attitude was just another stage. Each of us has probably gone through that hopeless stage at some point since Anna's initial diagnosis, but I know that in our family, we've moved through that point back to hope. I hope and pray that Anna makes it there, too.
Time for prayers
Thanksgiving
Please thank God for the relative health of the rest of our family. Both Kate and Ethan have had days here and there with runny noses and/or coughs, but neither has had any fevers or long-lasting colds.
Please praise God that Kate and Ethan are sleeping wonderfully at night right now; this means that when Matt or I take our turn sleeping at home, we can actually sleep well.
Please give thanks that my mom and Anna's nurse today have been able to get Anna up and moving around a bit more.
Please give thanks for the opportunity for me to be home with Kate and Ethan today; we've been having a nice, low-key day with lots of productive work.
Please thank God that everything is continuing to fall into place for Anna's discharge from the hospital and for our coming visit to Chicago.
Please give thanks that the only "tube" connected to Anna right now is her feeding tube!
Requests
Please continue to pray that we are home this weekend.
Please continue to pray for Anna's spirit, that she can move her attitude back towards hope.
Please continue to pray for wisdom and strength for Matt and me as we work to prepare Anna for the long journey ahead.
Please ask God to be with our family's adjustments to when Anna comes home, since it will be much different than when Anna was home before her surgery.
This morning as I was reading to Kate and Ethan, I came across a little toddler devotion that was very fitting to my feelings yesterday.
"To rejoice is to be happy. But sometimes it's not easy to be happy. When things go wrong, we can be sad. But remember, God is there with us no matter what happens. For that we can always rejoice!"
In the words of my Grandpa Colba ... "Rejoice!"
So far, everything still seems to be falling in place for us to get Anna home sometime this weekend. The necessary equipment (wheelchair, feeding supplies, etc.) is being delivered to the hospital this afternoon; Anna has been "released" from the PICU and is on "general floor care" as of yesterday (but still in the same room because there aren't any other beds available right now); and her most recent incision is healing nicely. I think we are just waiting for everyone's final stamp of approval.
However, yesterday Anna's spirit was empty. She had been steadily improving and using lots of spunk and gumption up until Sunday evening. Then her spirits sagged. Because of the constipation pain and the new surgery, she was feeling very unmotivated to do anything. When I talked with her yesterday afternoon about how she was going to be home this weekend, about how people are moving mountains to make this happen, her response was "I don't want to go home. I don't want to get better. I just want to lie in bed." That was really hard for me to hear.
I shared Anna's attitude with her nurse yesterday and her therapists in the afternoon and we came to the conclusion that she needed to get out of her room. This poor kid has been in some kind of (often miserable) pain constantly for the last 3-4 weeks and has spent the last 2+ weeks either in a hospital room, an operating room, an MRI or CT scan room, or on the way to or from one of these places. Yesterday afternoon after her therapy session, her nurse and I took Anna on a "field trip" around the 4th floor of the hospital. It certainly wasn't much from a normal 6 year old's standard, but it was huge for Miss Anna. We think it perked her up a bit, too.
This morning after her therapies, she went on an extended field trip to the first floor of Children's, plus across the sky-walk to the cafeteria. We have hopes that she'll get another trip in this afternoon when Kate and Ethan are around for a visit, too.
My mom is helping us out today at the hospital and told me that Anna seemed to get a bit of her determination back, that she was cooperating more readily with everyone and actually had the desire to do some of her exercises. What a relief that was for me to hear! As I told Anna yesterday, we will do all we can in our power to help her along this journey, but she is the only one who has the ultimate control of her body. If she doesn't want to get better, she won't.
Most likely, her poor attitude was just another stage. Each of us has probably gone through that hopeless stage at some point since Anna's initial diagnosis, but I know that in our family, we've moved through that point back to hope. I hope and pray that Anna makes it there, too.
Time for prayers
Thanksgiving
Please thank God for the relative health of the rest of our family. Both Kate and Ethan have had days here and there with runny noses and/or coughs, but neither has had any fevers or long-lasting colds.
Please praise God that Kate and Ethan are sleeping wonderfully at night right now; this means that when Matt or I take our turn sleeping at home, we can actually sleep well.
Please give thanks that my mom and Anna's nurse today have been able to get Anna up and moving around a bit more.
Please give thanks for the opportunity for me to be home with Kate and Ethan today; we've been having a nice, low-key day with lots of productive work.
Please thank God that everything is continuing to fall into place for Anna's discharge from the hospital and for our coming visit to Chicago.
Please give thanks that the only "tube" connected to Anna right now is her feeding tube!
Requests
Please continue to pray that we are home this weekend.
Please continue to pray for Anna's spirit, that she can move her attitude back towards hope.
Please continue to pray for wisdom and strength for Matt and me as we work to prepare Anna for the long journey ahead.
Please ask God to be with our family's adjustments to when Anna comes home, since it will be much different than when Anna was home before her surgery.
This morning as I was reading to Kate and Ethan, I came across a little toddler devotion that was very fitting to my feelings yesterday.
"To rejoice is to be happy. But sometimes it's not easy to be happy. When things go wrong, we can be sad. But remember, God is there with us no matter what happens. For that we can always rejoice!"
In the words of my Grandpa Colba ... "Rejoice!"
Wednesday, February 19, 2014
Feeling blessed
Yesterday had some incredible moments in it and Matt and I are feeling very hopeful right now.
First, Anna's surgery was shorter than expected and everything went smoothly. Since it didn't take place until the afternoon, she was still able to have a therapy session in the morning and have a conversation with a psychologist, albeit a short and rather grumpy one. Between the therapies and the surgery, Anna got in a nice nap. Anna was very hungry all day, but wasn't allowed to eat until after the anesthesia wore off. I'm hoping for a nice, hungry girl today :)
A few other blessings from yesterday include:
~Matt and I spending almost 4 hours together at the hospital with minimal distractions (!),
~an amazing resource given to us by the psychologist, specifically designed to help childhood cancer patients and their families learn to deal with their experiences through relaxation imagery,
~a phone call from someone within our insurance company who is going to be a go-to person for billing questions - hallelujah! - (apparently the company doesn't exactly have a position like this in place, but through my conversations with people on Monday, we were able to work around/within the system),
~a great conversation with the head of the pediatric department at St. Mary's during which I was able to express our family's gratitude for the service we received there, and
~learning that just about everyone is on board for getting us home sometime this weekend ... I hope, I hope, I hope!
In addition to those blessings, we continue to be amazed by the generosity shown to our family by people around Dane County and the country.
Today's plan is to continue with Anna's therapies, with the goal of being home by Sunday. We're very hopeful that with the placement of the shunt yesterday, her head pain will be diminished, thus making some of her physical therapies a little easier for her. I'm also hopeful that Anna will be cleared to eat more food; last night she chewed up about a cupful of ice so I think the speech therapist can do her "chewing" test today.
Time for prayers
Thanksgiving
Please give thanks for the continued development of Matt and Anna's relationship; their night on Monday night was much easier for them both.
Please give thanks for the smoothness and timing of Anna's surgery yesterday; everything went better than expected from our standpoint.
Please give thanks that we had the same night nurse for four nights in a row; that kind of consistency makes things just a little bit easier.
Please give thanks for the smoothness of transitions thus far with Melissa.
Please give thanks for all of the generosity and support we have been receiving.
Please give thanks that we only need to talk to one person at Aetna from now on, instead of always having to call the 800 number and explain the situation again and again!
Please give thanks that everyone is doing their best to help us meet our goal of being home on Sunday.
Please give thanks that both Ethan and Kate seem to have gotten over the stranger anxiety that they were experiencing back in January; those two are no longer quite as shy :)
Requests
Please pray that Anna's abdominal muscles heal quickly from the surgery. Anna's biggest complaint overnight was about her tummy muscles. The neurosurgeon told me that's because they had to "stretch" some of her muscles to place the end of the shunt. She said it's like having a big bruise and it should get better in a few days. Please pray that those "few days" are minimized for Anna.
Please pray that Anna continues to be hungry and is able to eat different kinds of food today.
Please pray for strength and balance for Matt as he is trying to juggle work, home life, and hospital life this week.
Please pray for Kate, especially, as she is being shuffled around a lot more this week.
Please continue to pray that everything falls into place for us to be able to be home before the appointments in Chicago next week.
Please continue to pray for strength and wisdom for Matt and me as we work to channel Anna's energies towards healing.
I'd like to share a blessing prayer that one of the chaplains here at the hospital gave us.
O God, with all our hearts and souls, we pray for Anna. May your love fill Anna's whole body and spirit that she may be filled with Your peace and comfort. May her family abide in Your peace during Anna's treatments and recovery. May the minds and hands and skills of the doctors and nurses be guided for healing to take place. May Your love be the power forever guiding her light. God bless Anna, and keep her, God's love shine within her. In Jesus' Name. Amen.
First, Anna's surgery was shorter than expected and everything went smoothly. Since it didn't take place until the afternoon, she was still able to have a therapy session in the morning and have a conversation with a psychologist, albeit a short and rather grumpy one. Between the therapies and the surgery, Anna got in a nice nap. Anna was very hungry all day, but wasn't allowed to eat until after the anesthesia wore off. I'm hoping for a nice, hungry girl today :)
A few other blessings from yesterday include:
~Matt and I spending almost 4 hours together at the hospital with minimal distractions (!),
~an amazing resource given to us by the psychologist, specifically designed to help childhood cancer patients and their families learn to deal with their experiences through relaxation imagery,
~a phone call from someone within our insurance company who is going to be a go-to person for billing questions - hallelujah! - (apparently the company doesn't exactly have a position like this in place, but through my conversations with people on Monday, we were able to work around/within the system),
~a great conversation with the head of the pediatric department at St. Mary's during which I was able to express our family's gratitude for the service we received there, and
~learning that just about everyone is on board for getting us home sometime this weekend ... I hope, I hope, I hope!
In addition to those blessings, we continue to be amazed by the generosity shown to our family by people around Dane County and the country.
Today's plan is to continue with Anna's therapies, with the goal of being home by Sunday. We're very hopeful that with the placement of the shunt yesterday, her head pain will be diminished, thus making some of her physical therapies a little easier for her. I'm also hopeful that Anna will be cleared to eat more food; last night she chewed up about a cupful of ice so I think the speech therapist can do her "chewing" test today.
Time for prayers
Thanksgiving
Please give thanks for the continued development of Matt and Anna's relationship; their night on Monday night was much easier for them both.
Please give thanks for the smoothness and timing of Anna's surgery yesterday; everything went better than expected from our standpoint.
Please give thanks that we had the same night nurse for four nights in a row; that kind of consistency makes things just a little bit easier.
Please give thanks for the smoothness of transitions thus far with Melissa.
Please give thanks for all of the generosity and support we have been receiving.
Please give thanks that we only need to talk to one person at Aetna from now on, instead of always having to call the 800 number and explain the situation again and again!
Please give thanks that everyone is doing their best to help us meet our goal of being home on Sunday.
Please give thanks that both Ethan and Kate seem to have gotten over the stranger anxiety that they were experiencing back in January; those two are no longer quite as shy :)
Requests
Please pray that Anna's abdominal muscles heal quickly from the surgery. Anna's biggest complaint overnight was about her tummy muscles. The neurosurgeon told me that's because they had to "stretch" some of her muscles to place the end of the shunt. She said it's like having a big bruise and it should get better in a few days. Please pray that those "few days" are minimized for Anna.
Please pray that Anna continues to be hungry and is able to eat different kinds of food today.
Please pray for strength and balance for Matt as he is trying to juggle work, home life, and hospital life this week.
Please pray for Kate, especially, as she is being shuffled around a lot more this week.
Please continue to pray that everything falls into place for us to be able to be home before the appointments in Chicago next week.
Please continue to pray for strength and wisdom for Matt and me as we work to channel Anna's energies towards healing.
I'd like to share a blessing prayer that one of the chaplains here at the hospital gave us.
O God, with all our hearts and souls, we pray for Anna. May your love fill Anna's whole body and spirit that she may be filled with Your peace and comfort. May her family abide in Your peace during Anna's treatments and recovery. May the minds and hands and skills of the doctors and nurses be guided for healing to take place. May Your love be the power forever guiding her light. God bless Anna, and keep her, God's love shine within her. In Jesus' Name. Amen.
Tuesday, February 18, 2014
Pictures
Previously on this blog, I tried to keep up-to-date with pictures. Life is different now so of course that is more challenging. Still, I would like to include a few pictures from the last month or so.
But before I do that, one of last night's prayers was already answered. Anna had an abdominal x-ray last night and everyone discovered that her system was really plugged up. The doctors worked with her over night and things are moving again. We are pretty certain this was the cause of her recent nausea. However, she is still complaining of her head today. Hopefully the shunt will answer that prayer!
Here's a few pictures, finally!
The Saturday before Anna was admitted to the hospital, Kate and Matt made a very elaborate train set-up.
But before I do that, one of last night's prayers was already answered. Anna had an abdominal x-ray last night and everyone discovered that her system was really plugged up. The doctors worked with her over night and things are moving again. We are pretty certain this was the cause of her recent nausea. However, she is still complaining of her head today. Hopefully the shunt will answer that prayer!
Here's a few pictures, finally!
Matt and Kate have enjoyed playing legos together in the past few weeks. This is a picture of their lego parade they made one day.
Here's a picture of Kate's bitty baby all doctored up. She likes playing hospital with Melissa.
Ethan's favorite thing to do in Anna's room is to play in the bathroom, especially with the doors.
Kate has fun playing with the balloons in Anna's room.
And here is Miss Anna, reclining in her wheelchair with us during our family Valentine's party.
Monday, February 17, 2014
Exhausting
Today was exhausting, as will be the rest of this week. With my mom back at home and Matt trying to get some time in at work this week, Melissa is now on board to help us out. But this week is going to be tough ... and tiring.
This morning my goal was to speak with everyone I knew connected to Anna's care at the hospital and tell them that we really, really, really want to spend at least 24 hours at home as a family before Anna has her first appointments in Chicago next Tuesday and Wednesday. That means that we want her home by Sunday at the latest. Certainly a lofty goal, but so far almost everyone seems to be on our side about it. The only person who wasn't backing us completely was the neurosurgeon. He wants to wait and see how Anna reacts to the brain shunt operation tomorrow. Anna's safety comes first, of course, but it would do wonders for all of our spirits to be able to spend just a little time at home together as a family before Anna and I head to Chicago for a few days next week. The "plan" is for us to come back home for a few more days before her treatments begin in early March. But we all know that plans change.
To give some perspective, today I needed to consult with the pediatricians, dietician, psychologist, social worker, case manager, speech therapist, occupational therapist, physical therapist, and neurosurgeon. Whew! Good thing my brother was around today to give me a bit of support :) Plus, Anna's nurse today was awesome. Granted, all of the nurses are good nurses, but this one was one of the better ones :)
Adam was able to fly into Madison last night, stay at a hotel close to the hospital, and spend the day with me. Anna was not in a happy place today so she didn't care too much that Uncle Adam was around, but his presence was good for me. Not only did he listen to me talk to all of the care staff (plus two long conversations with the insurance company - we're starting to get somewhere with them), but he also brought me an ice cream snack in the afternoon ... yum!
Melissa brought Kate and Ethan to the hospital after preschool so they could have a chance to run around with their uncle before Matt showed up and we did a "family dinner" down in the cafeteria while Anna was sleeping. They came up to Anna's room for just a little while before I needed to get them home to bed.
As for Anna, today was not a particularly good day for her. She was nauseous this morning around 4:30 a.m. and needed all of her bedding changed at that time. She was at least able to get back to sleep, but was still pretty grumpy and out of sorts throughout the day. She complained about her head more today than she has in a few days and had tummy trouble again around lunch time. Both Anna's nurse and I were a little concerned, but we have been assured and reassured by the neurologist that this is not related to the cancer. It may be related to her ICP, or possibly constipation, or maybe because her feeding was off a bit yesterday and last night. We're all hoping that her surgery tomorrow to place the shunt clears up the pressure discomfort and that her bowels start moving again. At least if those two things happen and she's still experiencing pain, then we'll know it's something else. The CT scan yesterday showed that all of the "fluid spaces" in her brain are communicating which means that when the cancer is gone, her body could theoretically do the re-absorption of the the spinal fluid without the shunt.
Speaking of Anna's surgery (now everyone is using that word instead of "procedure"), tomorrow she will have a shunt placed as well as an infus-a-port to use for chemotherapy treatments. The basic idea behind an infus-a-port is that it allows doctors quick access to one of her blood vessels, while still keeping the skin closed, so that she doesn't need a new IV placed every time she receives chemo. We are unclear about when exactly the surgery may take place .. maybe morning, maybe afternoon. At least we're flexible.
Time for prayers
Thanksgiving
Please give thanks that Anna got a nice nap yesterday before the CT scan and that the whole process went smoothly.
Please give thanks that Anna was feeling well enough yesterday to play a game of war with me after her CT scan. I miss this kid :(
Please give thanks for the strength I felt today as I worked through my day. Please also give thanks for the words I was able to use while I spoke with the insurance company :)
Please give thanks for our nurse today; she was awesome.
Please give thanks that everything fell into place so that Adam could spend the day with me. God even placed a former UW nurse next to Adam on his flight out who told him of a great deal at a hotel close to the hospital. Incredible, huh?
Requests
Please pray for a smooth night for Matt and Anna at the hospital. We've often joked in our family that the two of them are like gas and matches, especially when either one of them is tired. This whole overnight hospital experience has been challenging for their relationship.
Please pray that Anna's surgery tomorrow goes smoothly.
Please pray that Anna's bowels start moving again. I know, I know, this is probably too much information, but it's certainly a need. Sorry, teenage Anna.
Please pray that Anna's pain and discomfort diminish.
This may seem selfish, but please pray that everything falls into place so that we can be home as a family this weekend. I know this may not be in God's plan, but I really, really want it to be ...
Thanks again for all of the support and prayers. I am amazed as I look back at the previous blog entry each time and realize that our prayers are being answered ... every day.
This morning my goal was to speak with everyone I knew connected to Anna's care at the hospital and tell them that we really, really, really want to spend at least 24 hours at home as a family before Anna has her first appointments in Chicago next Tuesday and Wednesday. That means that we want her home by Sunday at the latest. Certainly a lofty goal, but so far almost everyone seems to be on our side about it. The only person who wasn't backing us completely was the neurosurgeon. He wants to wait and see how Anna reacts to the brain shunt operation tomorrow. Anna's safety comes first, of course, but it would do wonders for all of our spirits to be able to spend just a little time at home together as a family before Anna and I head to Chicago for a few days next week. The "plan" is for us to come back home for a few more days before her treatments begin in early March. But we all know that plans change.
To give some perspective, today I needed to consult with the pediatricians, dietician, psychologist, social worker, case manager, speech therapist, occupational therapist, physical therapist, and neurosurgeon. Whew! Good thing my brother was around today to give me a bit of support :) Plus, Anna's nurse today was awesome. Granted, all of the nurses are good nurses, but this one was one of the better ones :)
Adam was able to fly into Madison last night, stay at a hotel close to the hospital, and spend the day with me. Anna was not in a happy place today so she didn't care too much that Uncle Adam was around, but his presence was good for me. Not only did he listen to me talk to all of the care staff (plus two long conversations with the insurance company - we're starting to get somewhere with them), but he also brought me an ice cream snack in the afternoon ... yum!
Melissa brought Kate and Ethan to the hospital after preschool so they could have a chance to run around with their uncle before Matt showed up and we did a "family dinner" down in the cafeteria while Anna was sleeping. They came up to Anna's room for just a little while before I needed to get them home to bed.
As for Anna, today was not a particularly good day for her. She was nauseous this morning around 4:30 a.m. and needed all of her bedding changed at that time. She was at least able to get back to sleep, but was still pretty grumpy and out of sorts throughout the day. She complained about her head more today than she has in a few days and had tummy trouble again around lunch time. Both Anna's nurse and I were a little concerned, but we have been assured and reassured by the neurologist that this is not related to the cancer. It may be related to her ICP, or possibly constipation, or maybe because her feeding was off a bit yesterday and last night. We're all hoping that her surgery tomorrow to place the shunt clears up the pressure discomfort and that her bowels start moving again. At least if those two things happen and she's still experiencing pain, then we'll know it's something else. The CT scan yesterday showed that all of the "fluid spaces" in her brain are communicating which means that when the cancer is gone, her body could theoretically do the re-absorption of the the spinal fluid without the shunt.
Speaking of Anna's surgery (now everyone is using that word instead of "procedure"), tomorrow she will have a shunt placed as well as an infus-a-port to use for chemotherapy treatments. The basic idea behind an infus-a-port is that it allows doctors quick access to one of her blood vessels, while still keeping the skin closed, so that she doesn't need a new IV placed every time she receives chemo. We are unclear about when exactly the surgery may take place .. maybe morning, maybe afternoon. At least we're flexible.
Time for prayers
Thanksgiving
Please give thanks that Anna got a nice nap yesterday before the CT scan and that the whole process went smoothly.
Please give thanks that Anna was feeling well enough yesterday to play a game of war with me after her CT scan. I miss this kid :(
Please give thanks for the strength I felt today as I worked through my day. Please also give thanks for the words I was able to use while I spoke with the insurance company :)
Please give thanks for our nurse today; she was awesome.
Please give thanks that everything fell into place so that Adam could spend the day with me. God even placed a former UW nurse next to Adam on his flight out who told him of a great deal at a hotel close to the hospital. Incredible, huh?
Requests
Please pray for a smooth night for Matt and Anna at the hospital. We've often joked in our family that the two of them are like gas and matches, especially when either one of them is tired. This whole overnight hospital experience has been challenging for their relationship.
Please pray that Anna's surgery tomorrow goes smoothly.
Please pray that Anna's bowels start moving again. I know, I know, this is probably too much information, but it's certainly a need. Sorry, teenage Anna.
Please pray that Anna's pain and discomfort diminish.
This may seem selfish, but please pray that everything falls into place so that we can be home as a family this weekend. I know this may not be in God's plan, but I really, really want it to be ...
Thanks again for all of the support and prayers. I am amazed as I look back at the previous blog entry each time and realize that our prayers are being answered ... every day.
Sunday, February 16, 2014
Hurts
My evening and morning alone at home with Kate and Ethan was rough for me. I think I had too much time to think. I became more aware of the different "hurts" that we've been experiencing.
Our bodies hurt. Not just Anna's. Sleeping off and on at a hospital; eating hospital food off and on; having our energies be focused almost entirely on other people. All these things have taken a toll on our bodies.
Our minds hurt. I've always enjoyed logic puzzles, but the immensity of coordinating schedules, vehicles, food, people, needs, etc. challenges my skills. I'm learning to let go of control over a lot of things, but Matt and I still want to be in charge of many major decisions and it's taking a lot of work.
Mostly, our hearts hurt. I've always told our kids that it makes me sad when any of my babies are sick or hurting. All of our kids are hurting in their own way right now, but mostly Anna. Her body still hurts (often times a lot), but her spirit hurts, too. She's frustrated that she can't do the things she wants to do and she doesn't like having her body be treated like a baby's body. It's a lot for anyone to cope with, let alone a 6 1/2 year old.
We still feel God's presence in our daily walk and we still know that He has a plan for our lives, but it doesn't make the journey any easier.
Speaking of difficult journeys, Anna has been experiencing more head pain over the past few days and she had a recurrence of nausea yesterday morning. The neurosurgeon was mildly concerned and has ordered a CT scan for sometime today or tomorrow to check the flow of fluid in and around Anna's brain. The resurfacing of pain could be caused by any number of factors and we would just like to get to the bottom of it while keeping Anna comfortable at the same time.
Time for prayers
Thanksgiving
Please give thanks for Melissa's presence yesterday with Anna; both have some fond memories of the day.
Please give thanks for our "business day" at home yesterday; we were able to get on top of some of the paperwork we needed to do as well as take care of some much needed haircuts for Matt and Ethan.
Please give thanks that our friend, Mary, also a nurse here at the hospital, was able to spend the morning with Anna so that the rest of us could worship together at church.
Please give thanks for the patience exhibited by those who have worked with Anna in the last few days. God worked this one in an amazing way. It turns out one of Anna's therapists today lives in our neighborhood and she was able to make some connections with Anna during the therapy session that no one else would have been able to make. That helped Anna relax a bit.
Please give thanks for the continued support that we are experiencing every day from family and friends.
Requests
Please pray that the doctors are able to get to the bottom of Anna's continued pain and develop an effective pain management plan.
Please pray that Anna can rest some before her CT scan.
Please pray for strength and wisdom for me tomorrow as I need to work with more and more people regarding Anna's care.
Please pray for a 6 month old baby connected with our church who is hospitalized for a respiratory illness. I don't even know the baby's name, but I know that the mother, Jessica, wore some of my maternity clothes. The baby's great-aunt and great-great-grandmother were part of a women's Bible Study that I attended for several year.
Please pray for my brother who has been waiting patiently until we told him that it would be a good time for him to fly in from Denver to visit. He may be traveling this week to see us.
I'd like to close with the words from the song "Siyahamba", which we sang as our closing hymn this morning at church. (Forgive me if they are not completely accurate, but I think this works :) This particular song has had a special place in my heart ever since my college years. It was fitting that our church hand-bell choir played it during communion and then we sang it at the end of the service.
We are walking in the light of God; we are walking in the light of God.
We are singing for the Lord is our God; we are singing for the Lord is our God.
We are praying to the Lord our God; we are praying to the Lord our God.
Our bodies hurt. Not just Anna's. Sleeping off and on at a hospital; eating hospital food off and on; having our energies be focused almost entirely on other people. All these things have taken a toll on our bodies.
Our minds hurt. I've always enjoyed logic puzzles, but the immensity of coordinating schedules, vehicles, food, people, needs, etc. challenges my skills. I'm learning to let go of control over a lot of things, but Matt and I still want to be in charge of many major decisions and it's taking a lot of work.
Mostly, our hearts hurt. I've always told our kids that it makes me sad when any of my babies are sick or hurting. All of our kids are hurting in their own way right now, but mostly Anna. Her body still hurts (often times a lot), but her spirit hurts, too. She's frustrated that she can't do the things she wants to do and she doesn't like having her body be treated like a baby's body. It's a lot for anyone to cope with, let alone a 6 1/2 year old.
We still feel God's presence in our daily walk and we still know that He has a plan for our lives, but it doesn't make the journey any easier.
Speaking of difficult journeys, Anna has been experiencing more head pain over the past few days and she had a recurrence of nausea yesterday morning. The neurosurgeon was mildly concerned and has ordered a CT scan for sometime today or tomorrow to check the flow of fluid in and around Anna's brain. The resurfacing of pain could be caused by any number of factors and we would just like to get to the bottom of it while keeping Anna comfortable at the same time.
Time for prayers
Thanksgiving
Please give thanks for Melissa's presence yesterday with Anna; both have some fond memories of the day.
Please give thanks for our "business day" at home yesterday; we were able to get on top of some of the paperwork we needed to do as well as take care of some much needed haircuts for Matt and Ethan.
Please give thanks that our friend, Mary, also a nurse here at the hospital, was able to spend the morning with Anna so that the rest of us could worship together at church.
Please give thanks for the patience exhibited by those who have worked with Anna in the last few days. God worked this one in an amazing way. It turns out one of Anna's therapists today lives in our neighborhood and she was able to make some connections with Anna during the therapy session that no one else would have been able to make. That helped Anna relax a bit.
Please give thanks for the continued support that we are experiencing every day from family and friends.
Requests
Please pray that the doctors are able to get to the bottom of Anna's continued pain and develop an effective pain management plan.
Please pray that Anna can rest some before her CT scan.
Please pray for strength and wisdom for me tomorrow as I need to work with more and more people regarding Anna's care.
Please pray for a 6 month old baby connected with our church who is hospitalized for a respiratory illness. I don't even know the baby's name, but I know that the mother, Jessica, wore some of my maternity clothes. The baby's great-aunt and great-great-grandmother were part of a women's Bible Study that I attended for several year.
Please pray for my brother who has been waiting patiently until we told him that it would be a good time for him to fly in from Denver to visit. He may be traveling this week to see us.
I'd like to close with the words from the song "Siyahamba", which we sang as our closing hymn this morning at church. (Forgive me if they are not completely accurate, but I think this works :) This particular song has had a special place in my heart ever since my college years. It was fitting that our church hand-bell choir played it during communion and then we sang it at the end of the service.
We are walking in the light of God; we are walking in the light of God.
We are singing for the Lord is our God; we are singing for the Lord is our God.
We are praying to the Lord our God; we are praying to the Lord our God.
Saturday, February 15, 2014
Nights at the hospital
Last night was my turn to sleep at the hospital with Anna. From what Matt has shared with me, last night seems to have gone better than the previous nights, but we're still taking baby steps in this regard, too. Anna has been experiencing pain and discomfort in the middle of the night due to her ICPs and her stiff/sore muscles. In my experience, she whines and cries about it for a little bit, but then goes back to sleep. In Matt's experience, she whines and cries for longer and then he leaves to finish the night in a sleep room. As anyone who has experienced extended time in a hospital can tell you, when you need the sleep the most, you can't get it. We're hoping that each night is better than the one before.
Although Anna's follow-up MRI isn't until a little later this morning, it sounds like she will need a shunt. The doctors started unclamping her once an hour yesterday during the day, but when that wasn't enough they decided to just leave the drain open again. We trust the doctors implicitly, but I think that this will probably be best for Anna.
Our family Valentine's celebration yesterday afternoon was lots of fun, relatively speaking. We had some pumpkin cake, exchanged Valentine's cards, and laughed as a family. Anna was able to sit in a wheelchair the whole time, which was pretty impressive for her. She was wiped out by the end of our party, so Matt and I took the other kids down to the cafeteria for a family dinner. Our version of "normal" has changed.
Anna and I were able to talk yesterday evening. I have been sharing things with her in stages and this conversation included the fact that her treatments will be in Chicago. We're hoping to make the most of these trips and spend some time in Chicago "seeing the sites" with the other kids, too.
One comment that Anna made during our conversation while I was sharing the newest stack of cards was "I don't feel like I deserve all of this (referring to the cards and gifts)." She also asked "How did all these people know that I was in the hospital?" I had to let her in on this blog and facebook :)
Her first comment, however, struck a cord with me because I have been feeling the same way at times. For those of you who don't know our family as well, let me give you a bit of perspective. A lot of the clothes our kids wear are hand-me-downs. Many of the toys in our home came from garage sales. My newest winter coat was from St. Vinny's. (It's a GREAT coat and it was a bargain!) These aspects of our lifestyle are not strictly out of necessity, although having three kids on one income plays into the equation. We have made many of these decisions consciously and we like living this way. For one thing, no one cares too much if clothes get stained or toys get broken :) But as parents, Matt and I have worked to keep our kids sheltered from some of the more materialistic aspects of our society. We're going to do our best to continue to instill these values.
I share this first because I want people to know that we are very thankful for the gifts we have received in the last few weeks. But also so you realize that some of the gifts given to us may be passed along to others who have more of a need for them. Trust me, everything will find a good home, but that home just may not be ours.
So again, thank you for everything. But please don't be offended if some of the gifts don't stay in our home.
Time for prayers
Thanksgiving
Please give thanks for Matt's successful day at the hospital yesterday. He especially did a great job setting up Anna's chore chart.
Please give thanks for safe travel for my mom yesterday afternoon.
Please give thanks that we were able to have a nice Valentine's celebration yesterday as a family.
Please give thanks for the wisdom and words to say as I continue to communicate with more and more people about Anna's care.
Requests
Please pray for wisdom and strength for Melissa as she spends the day with Anna today.
Please pray for peace and wisdom for Matt and I as we start working on some paperwork at home today.
Please ask God to give us a case manager with our insurance company who is sensitive to our family's needs. We will be working very closely with our insurance company in the months and years to come so it would be really helpful to have someone inside Aetna who is on our side.
Please pray for patience for the nurses and doctors dealing with Anna. As her parents, we have had several years of experience dealing with Anna's ornery verbalizing when she is mad, in pain, or frustrated. The people here haven't. Most are okay with it, but it does take some getting used to.
Please pray that Anna's sleep continues to improve.
Please pray that Anna continues to feel hungrier every day and can eat more and more each day. It would be a lot easier for us if she didn't have a feeding tube when she came home, but we know that God's plan is best.
I'll close this morning with Luther's Morning Prayer. My eighth grade teacher included this in our class's memory work long ago. More recently, we have used this prayer periodically as a family and I have used it much more regularly (but still not as often as I should) in the past few years.
"We thank you, our Heavenly Father, through Jesus Christ, your dear Son, that you have kept us this night from all harm and danger; and we pray that you would keep us this day also from sin and every evil, that all our doings and life may please you. For into your hands we commend ourselves, our bodies and souls and all things. Let your holy angel be with us, that the evil foe may have no power over us. Amen."
Although Anna's follow-up MRI isn't until a little later this morning, it sounds like she will need a shunt. The doctors started unclamping her once an hour yesterday during the day, but when that wasn't enough they decided to just leave the drain open again. We trust the doctors implicitly, but I think that this will probably be best for Anna.
Our family Valentine's celebration yesterday afternoon was lots of fun, relatively speaking. We had some pumpkin cake, exchanged Valentine's cards, and laughed as a family. Anna was able to sit in a wheelchair the whole time, which was pretty impressive for her. She was wiped out by the end of our party, so Matt and I took the other kids down to the cafeteria for a family dinner. Our version of "normal" has changed.
Anna and I were able to talk yesterday evening. I have been sharing things with her in stages and this conversation included the fact that her treatments will be in Chicago. We're hoping to make the most of these trips and spend some time in Chicago "seeing the sites" with the other kids, too.
One comment that Anna made during our conversation while I was sharing the newest stack of cards was "I don't feel like I deserve all of this (referring to the cards and gifts)." She also asked "How did all these people know that I was in the hospital?" I had to let her in on this blog and facebook :)
Her first comment, however, struck a cord with me because I have been feeling the same way at times. For those of you who don't know our family as well, let me give you a bit of perspective. A lot of the clothes our kids wear are hand-me-downs. Many of the toys in our home came from garage sales. My newest winter coat was from St. Vinny's. (It's a GREAT coat and it was a bargain!) These aspects of our lifestyle are not strictly out of necessity, although having three kids on one income plays into the equation. We have made many of these decisions consciously and we like living this way. For one thing, no one cares too much if clothes get stained or toys get broken :) But as parents, Matt and I have worked to keep our kids sheltered from some of the more materialistic aspects of our society. We're going to do our best to continue to instill these values.
I share this first because I want people to know that we are very thankful for the gifts we have received in the last few weeks. But also so you realize that some of the gifts given to us may be passed along to others who have more of a need for them. Trust me, everything will find a good home, but that home just may not be ours.
So again, thank you for everything. But please don't be offended if some of the gifts don't stay in our home.
Time for prayers
Thanksgiving
Please give thanks for Matt's successful day at the hospital yesterday. He especially did a great job setting up Anna's chore chart.
Please give thanks for safe travel for my mom yesterday afternoon.
Please give thanks that we were able to have a nice Valentine's celebration yesterday as a family.
Please give thanks for the wisdom and words to say as I continue to communicate with more and more people about Anna's care.
Requests
Please pray for wisdom and strength for Melissa as she spends the day with Anna today.
Please pray for peace and wisdom for Matt and I as we start working on some paperwork at home today.
Please ask God to give us a case manager with our insurance company who is sensitive to our family's needs. We will be working very closely with our insurance company in the months and years to come so it would be really helpful to have someone inside Aetna who is on our side.
Please pray for patience for the nurses and doctors dealing with Anna. As her parents, we have had several years of experience dealing with Anna's ornery verbalizing when she is mad, in pain, or frustrated. The people here haven't. Most are okay with it, but it does take some getting used to.
Please pray that Anna's sleep continues to improve.
Please pray that Anna continues to feel hungrier every day and can eat more and more each day. It would be a lot easier for us if she didn't have a feeding tube when she came home, but we know that God's plan is best.
I'll close this morning with Luther's Morning Prayer. My eighth grade teacher included this in our class's memory work long ago. More recently, we have used this prayer periodically as a family and I have used it much more regularly (but still not as often as I should) in the past few years.
"We thank you, our Heavenly Father, through Jesus Christ, your dear Son, that you have kept us this night from all harm and danger; and we pray that you would keep us this day also from sin and every evil, that all our doings and life may please you. For into your hands we commend ourselves, our bodies and souls and all things. Let your holy angel be with us, that the evil foe may have no power over us. Amen."
Friday, February 14, 2014
Overwhelming
The best word I can use to describe my day yesterday was "overwhelming".
First, we have been overwhelmed by the generosity and support of people here in Dane County and around the country. We continue to receive notes and cards from people in other places who let us know that Anna has been added to their church's prayer list or that they are keeping our family in their prayers. Someday, (not just yet), it may be a fun geography lesson for our kids to have postcards sent to us from these places around the states :)
Second, we have been overwhelmed by the sheer number of people who are employed through the University of Wisconsin helping us. To give an idea of my day yesterday (which started at 5:30 with the nurse telling me Anna needed an MRI), here are some of the people with whom I met or spoke on the phone ... neurosurgeons, pediatricians, a psychologist, a child life specialist, physical therapists, an occupational therapist, a speech therapist, a teacher at the hospital who will be our liaison with McFarland schools, a social worker, someone at UW in charge of radiation therapy, a chemo specialist at UW, a nurse practitioner, someone with our insurance company, and nurses, nurses, and more nurses. When I walked in the door last night, my mom told me that someone from the Chicago facility called and I should call them back right away. So my first job at home was to talk to Kay in Chicago. Then I lay down on the floor for about an hour and let Kate and Ethan crawl over me.
Just prior to Anna's diagnosis I read an article via Facebook about having three kids. What resonated most with me from that article at the time was when the parents reflected on the challenges of meeting the needs of three different kids who are at three developmental stages. And that was before this all started. Now we are feeling a bit overwhelmed with trying to manage everyone's needs. With the help of God and everyone who has said "yes!" whenever we've asked for any kind of help, we're keeping our heads above water in this regard, but it's exhausting. We couldn't have done it without my mom's help. Not only has she been a caregiver for Kate and Ethan, but she's also done cooking and laundry at our house. We have lots and lots of meals in our freezer right now and all of the clothes are clean :)
I haven't spoken with Matt this morning about how last night went for Anna, but unless something unexpected happened, my guess is that today will be much like yesterday. Anna is continuing to make progress with her mobility and her strength. Yesterday afternoon she was cleared to use a special commode for her toileting needs. We're hoping that this will be a good motivator for her to continue to get her upright since she really dislikes using a pull-up or bedpan. The first few times Anna uses the commode will be hard and painful simply because her body has to be moved from the hospital bed; most movement involving her head still hurts. We're hoping that each time she uses it, everything will get easier.
Everyone will continue to monitor Anna's ICP levels. The plan is for her to have a follow-up MRI on Saturday morning and then make the decision about the drain. Next Tuesday is being planned as a "procedure day" for Anna. We're not quite sure of everything that will happen that day, but we'll be sure to keep this blog informed.
This morning I get to spend at home while Matt is at the hospital. My mom is planning on going home this afternoon. I'll bring the younger kids to the hospital later and we're going to have a mini-Valentine's party with Anna. Then Matt will come home with Kate and Ethan while I stay overnight at the hospital tonight. Melissa will get to spend the day with Anna tomorrow while Matt and I stay home to take care of some business on the home front.
Time for prayers
Thanksgiving
Please give thanks that we are receiving all the help we need right now to meet the needs of our family.
Please give thanks that Anna's digestive illness seems to have passed and that no other kids got sick.
Please give thanks that my mom has had the strength and motivation to help in all the ways she has.
Please give thanks for the continued progress that Anna is making.
Please give thanks that Anna slept for 1.5 hours yesterday before any of her therapies.
Please give thanks for Matt's successful grocery shopping trip!
Requests
Please pray for all involved in getting Anna to and from the commode, that Anna is safe and relatively comfortable the first few times she uses it.
Please pray for strength and wisdom for Matt as he spends the day interacting with everyone at the hospital.
Please pray for safe travel for my mom this afternoon and for a restful weekend for my parents.
Please pray that our family has an easy transition in the next few days without my mom around to help.
Please ask God to be with Melissa and our family as we begin to work together much more closely than we ever have.
Please continue to pray that the ICP/drain/clamp/shunt stuff gets taken care of safely and smoothly.
Please ask God to give us a happy Valentine's Day celebration at the hospital :)
"We can do all things through Christ who strengthens me." Philippians 4:13
First, we have been overwhelmed by the generosity and support of people here in Dane County and around the country. We continue to receive notes and cards from people in other places who let us know that Anna has been added to their church's prayer list or that they are keeping our family in their prayers. Someday, (not just yet), it may be a fun geography lesson for our kids to have postcards sent to us from these places around the states :)
Second, we have been overwhelmed by the sheer number of people who are employed through the University of Wisconsin helping us. To give an idea of my day yesterday (which started at 5:30 with the nurse telling me Anna needed an MRI), here are some of the people with whom I met or spoke on the phone ... neurosurgeons, pediatricians, a psychologist, a child life specialist, physical therapists, an occupational therapist, a speech therapist, a teacher at the hospital who will be our liaison with McFarland schools, a social worker, someone at UW in charge of radiation therapy, a chemo specialist at UW, a nurse practitioner, someone with our insurance company, and nurses, nurses, and more nurses. When I walked in the door last night, my mom told me that someone from the Chicago facility called and I should call them back right away. So my first job at home was to talk to Kay in Chicago. Then I lay down on the floor for about an hour and let Kate and Ethan crawl over me.
Just prior to Anna's diagnosis I read an article via Facebook about having three kids. What resonated most with me from that article at the time was when the parents reflected on the challenges of meeting the needs of three different kids who are at three developmental stages. And that was before this all started. Now we are feeling a bit overwhelmed with trying to manage everyone's needs. With the help of God and everyone who has said "yes!" whenever we've asked for any kind of help, we're keeping our heads above water in this regard, but it's exhausting. We couldn't have done it without my mom's help. Not only has she been a caregiver for Kate and Ethan, but she's also done cooking and laundry at our house. We have lots and lots of meals in our freezer right now and all of the clothes are clean :)
I haven't spoken with Matt this morning about how last night went for Anna, but unless something unexpected happened, my guess is that today will be much like yesterday. Anna is continuing to make progress with her mobility and her strength. Yesterday afternoon she was cleared to use a special commode for her toileting needs. We're hoping that this will be a good motivator for her to continue to get her upright since she really dislikes using a pull-up or bedpan. The first few times Anna uses the commode will be hard and painful simply because her body has to be moved from the hospital bed; most movement involving her head still hurts. We're hoping that each time she uses it, everything will get easier.
Everyone will continue to monitor Anna's ICP levels. The plan is for her to have a follow-up MRI on Saturday morning and then make the decision about the drain. Next Tuesday is being planned as a "procedure day" for Anna. We're not quite sure of everything that will happen that day, but we'll be sure to keep this blog informed.
This morning I get to spend at home while Matt is at the hospital. My mom is planning on going home this afternoon. I'll bring the younger kids to the hospital later and we're going to have a mini-Valentine's party with Anna. Then Matt will come home with Kate and Ethan while I stay overnight at the hospital tonight. Melissa will get to spend the day with Anna tomorrow while Matt and I stay home to take care of some business on the home front.
Time for prayers
Thanksgiving
Please give thanks that we are receiving all the help we need right now to meet the needs of our family.
Please give thanks that Anna's digestive illness seems to have passed and that no other kids got sick.
Please give thanks that my mom has had the strength and motivation to help in all the ways she has.
Please give thanks for the continued progress that Anna is making.
Please give thanks that Anna slept for 1.5 hours yesterday before any of her therapies.
Please give thanks for Matt's successful grocery shopping trip!
Requests
Please pray for all involved in getting Anna to and from the commode, that Anna is safe and relatively comfortable the first few times she uses it.
Please pray for strength and wisdom for Matt as he spends the day interacting with everyone at the hospital.
Please pray for safe travel for my mom this afternoon and for a restful weekend for my parents.
Please pray that our family has an easy transition in the next few days without my mom around to help.
Please ask God to be with Melissa and our family as we begin to work together much more closely than we ever have.
Please continue to pray that the ICP/drain/clamp/shunt stuff gets taken care of safely and smoothly.
Please ask God to give us a happy Valentine's Day celebration at the hospital :)
"We can do all things through Christ who strengthens me." Philippians 4:13
Thursday, February 13, 2014
Thursday morning
I wanted to do a quick post this morning to get some specific prayer requests out before the day really begins. As I've said before, an uneventful night on the PICU is a good thing. In terms of Anna's overall health and safety, last night was a good night. She was able to rest a bit better, probably in part because she was cleared to have some Benadryl. All of her "normal" signs and processes are mellowing out.
However, her ICP numbers were up a bit and she was complaining of a bad headache at the same time. To understand this better, I need to give a bit more background information and detail. As I said before, Anna's initial ICP numbers were pretty high because the tumor was blocking the normal flow and circulation of her spinal fluid. The pressures leveled out a bit after the ventricular drain was put in place last Monday, and then even more so as she has recovered from last Wednesday's surgery.
On Monday morning the drain was "clamped", to see how well Anna's body could control the re-absorption and recirculation of the spinal fluid. For most kids with brain surgery, this is not a problem and after 24-48 hours, the drain is removed. However, Anna's case is different because of how the cancer is already spread and distributed around her central nervous system. The doctor isn't sure that Anna's body will be able to deal with the recirculation of the spinal fluid.
After the neurosurgeons learned about the headache and elevated ICP numbers, they ordered an MRI for bright and early this morning. Anna was awakened before 6am and wheeled down to the MRI floor. The pictures were taken and she was back up in her room by 6:30. With all of Anna's previous MRIs, she was always sedated; this was the first one for which she was wide awake. She did AWESOME! I was able to be with her up until they wheeled her into the actual MRI room. She stayed very still and calm, even though she admitted to me afterwards that she was scared by the loud sounds.
We're awaiting the results and further instructions. If it turns out that Anna's body can't handle the spinal fluid processes, then the doctors will unclamp her drain and she'll have a shunt placed sometime this weekend. I've been reassured that this procedure would be quite easy, especially in comparison to all that Anna has been through in the last few weeks.
Otherwise, since I've been back here at the hospital with Anna, she has been much more like herself. Hooray! Granted, if any of us were tired and in pain and unable to do the things that we always used to be able to do, we'd be pretty grumpy. However, Anna seems to be working through some of her frustrations. We looked through cards and pictures last night and had some otherwise good and healthy conversations. She is sounding more and more like herself every day, both in the words she chooses to use and in the sound of her actual voice. Ethan was able to get a bit of a laugh out of Anna last night when he was here pushing the wheelchair around her room, and Anna was downright cheerful for a period this morning, smiling at some of the jokes I was making during her breakfast :)
The plan for today includes the ICP stuff as well as working with Anna on her nutrition. Basically, she is in the process of being weaned off of the feeds. After having recently gone through the weaning process with Ethan, it sounds like it's very similar, but will happen in the matter of a few days, instead of 6 months.
Also, we decided to go with the proton treatment in Chicago. Thank you to those in the Chicago area who have offered up your homes to our family. However, there is actually a whole team of people whose job is to help us with housing. We'll get the word out if we need help, but I think we're in good hands :)
Time for prayers
Thanksgiving
Please give thanks that my mom had strength and wisdom yesterday while she was here with Anna; she did an awesome job interacting with everyone.
Please give thanks that Anna can now have Benadryl to help her rest at night.
Please give thanks that I was able to rest relatively well in her room last night.
Please give thanks that Anna is feeling hungry and wants to eat. Even though she'll be taking baby steps with her foods, she just told me "I want cherry tomatoes. I just want to eat meat!"
Please give thanks that Anna was able to weather the MRI stuff this morning so well. Knowing that she can handle it awake will make the next months and years easier.
Requests
Please pray that this whole ICP stuff gets cleared up safely and easily. Whether or not Anna needs a shunt put in, we just want it to go smoothly.
Please pray that Anna can sleep some this morning before her therapies start.
Please ask God to be with Matt and I this morning as I try to guide him through a grocery trip to Woodman's. Help us to find humor in the situation :)
Please ask God to continue to reveal His presence to Matt and me during this journey.
Please pray that we are able to get a good case manager with our insurance company; that will make one aspect of life much easier in the months and years to come.
Thanks again for everything. As we look for things to be thankful for, one that comes to mind for me is at least this hospital stay is happening during one of the cruddiest times of one of the cruddiest winters. It's not like we're missing out on spring :)
However, her ICP numbers were up a bit and she was complaining of a bad headache at the same time. To understand this better, I need to give a bit more background information and detail. As I said before, Anna's initial ICP numbers were pretty high because the tumor was blocking the normal flow and circulation of her spinal fluid. The pressures leveled out a bit after the ventricular drain was put in place last Monday, and then even more so as she has recovered from last Wednesday's surgery.
On Monday morning the drain was "clamped", to see how well Anna's body could control the re-absorption and recirculation of the spinal fluid. For most kids with brain surgery, this is not a problem and after 24-48 hours, the drain is removed. However, Anna's case is different because of how the cancer is already spread and distributed around her central nervous system. The doctor isn't sure that Anna's body will be able to deal with the recirculation of the spinal fluid.
After the neurosurgeons learned about the headache and elevated ICP numbers, they ordered an MRI for bright and early this morning. Anna was awakened before 6am and wheeled down to the MRI floor. The pictures were taken and she was back up in her room by 6:30. With all of Anna's previous MRIs, she was always sedated; this was the first one for which she was wide awake. She did AWESOME! I was able to be with her up until they wheeled her into the actual MRI room. She stayed very still and calm, even though she admitted to me afterwards that she was scared by the loud sounds.
We're awaiting the results and further instructions. If it turns out that Anna's body can't handle the spinal fluid processes, then the doctors will unclamp her drain and she'll have a shunt placed sometime this weekend. I've been reassured that this procedure would be quite easy, especially in comparison to all that Anna has been through in the last few weeks.
Otherwise, since I've been back here at the hospital with Anna, she has been much more like herself. Hooray! Granted, if any of us were tired and in pain and unable to do the things that we always used to be able to do, we'd be pretty grumpy. However, Anna seems to be working through some of her frustrations. We looked through cards and pictures last night and had some otherwise good and healthy conversations. She is sounding more and more like herself every day, both in the words she chooses to use and in the sound of her actual voice. Ethan was able to get a bit of a laugh out of Anna last night when he was here pushing the wheelchair around her room, and Anna was downright cheerful for a period this morning, smiling at some of the jokes I was making during her breakfast :)
The plan for today includes the ICP stuff as well as working with Anna on her nutrition. Basically, she is in the process of being weaned off of the feeds. After having recently gone through the weaning process with Ethan, it sounds like it's very similar, but will happen in the matter of a few days, instead of 6 months.
Also, we decided to go with the proton treatment in Chicago. Thank you to those in the Chicago area who have offered up your homes to our family. However, there is actually a whole team of people whose job is to help us with housing. We'll get the word out if we need help, but I think we're in good hands :)
Time for prayers
Thanksgiving
Please give thanks that my mom had strength and wisdom yesterday while she was here with Anna; she did an awesome job interacting with everyone.
Please give thanks that Anna can now have Benadryl to help her rest at night.
Please give thanks that I was able to rest relatively well in her room last night.
Please give thanks that Anna is feeling hungry and wants to eat. Even though she'll be taking baby steps with her foods, she just told me "I want cherry tomatoes. I just want to eat meat!"
Please give thanks that Anna was able to weather the MRI stuff this morning so well. Knowing that she can handle it awake will make the next months and years easier.
Requests
Please pray that this whole ICP stuff gets cleared up safely and easily. Whether or not Anna needs a shunt put in, we just want it to go smoothly.
Please pray that Anna can sleep some this morning before her therapies start.
Please ask God to be with Matt and I this morning as I try to guide him through a grocery trip to Woodman's. Help us to find humor in the situation :)
Please ask God to continue to reveal His presence to Matt and me during this journey.
Please pray that we are able to get a good case manager with our insurance company; that will make one aspect of life much easier in the months and years to come.
Thanks again for everything. As we look for things to be thankful for, one that comes to mind for me is at least this hospital stay is happening during one of the cruddiest times of one of the cruddiest winters. It's not like we're missing out on spring :)
Wednesday, February 12, 2014
The rest of the family
Once upon a time this blog was about things other than Anna's cancer. We originally started it to keep close family and friends up to date on Anna's daily activities and milestones when she was a baby. Since then it turned into more of a journal for me personally, a way in which to record our lives and preserve memories from when our kids are young. I'd like to continue to keep those goals in mind and make sure that I have a record of Ethan's toddlerhood and Kate's preschool life. So ...
Ethan's a lot of fun right now. I have always really enjoyed this stage of toddler development when babies have learned to walk and are learning to talk. Ethan's a bit of a goof; he likes to make us laugh. His walking is getting faster and faster; I don't think it will be too long before he can run. He LOVES books. Last week my dad said that he must have read at least 50 books with Ethan. His favorite books are ones about trucks and trains; he's all boy :)
Kate has taught Ethan a variety of animal sounds and machine sounds. Some favorites of ours are what cats say ("ye-ow!"), the way Ethan says "woo-woo" for trains, and how he sometimes can now say "mommy" instead of just "mama". We love this little guy.
He seems to be weathering the current storm pretty well. He misses his mama and his dada, but at least we're reassured that he won't remember these days. He's resilient.
Kate has been coping with everything very well. We've tried to keep life as consistent as possible for her. She's still going to preschool Mondays, Tuesdays, and Wednesdays. She has a dance class on Wednesday mornings, story time at the library on Thursday mornings, and Destination Discovery in McFarland on Friday mornings.
We've always said that Kate lives in the moment and that particular personality trait is serving her well these days. She's still able to have lots of fun every day. She misses us when we're gone, but is thrilled to see us again when she can.
Kate is dealing with Anna's illness in very age appropriate ways. She's asking lots of questions, often at random times. Some of our favorites were "Where do Mommy and Daddy sleep when they're at the hospital?" and "What color was Anna's tumor?" If we can't answer her questions, we tell her that we'll ask the doctors. Dr. Iskandar said to tell Kate that the tumor was gray :)
Kate has played "hospital" and "doctor" a bit with cars, trucks, dolls, babies, etc. One of the child life specialists at the hospital gave Kate a doll with a hospital gown that she could use however she wanted. Melissa and Kate decorated it to look like Anna. Kate calls it her "Anna doll" and told us that when she misses Anna, she can hug her Anna doll.
Last night while I was having dinner with the younger kids and my mom, Kate said "I miss having dinner with our family" or something like that. She's also had a few bad dreams, which is typical for her when she's under stress. She's also resilient.
Matt is doing great, considering the circumstances. He and I have learned a lot about each other in the past week. God was working in our relationship prior to Anna's illness as well. My mom wanted to make sure everyone knew how well Matt has done taking over at home while I have been at the hospital, and how he has been a good teacher for my mom in regards to the little things at home (laundry, cooking, cleaning, etc.)
He's planning on going back to work next week. Matt's colleagues have been very understanding so far, but since we don't know exactly what this year holds, we don't want him to use all of this sick/leave time at the start of the calendar year.
My mom has been a huge help. I think God has been preparing my mom (and dad, too) for this experience for awhile now. My mom and I have always been grateful for our relationship, especially since I became a mom, but I don't think there are words to describe how blessed we both feel to have each other right now.
As for me, I'm okay, everything considered. As the nurses keep reminding me, I need to take care of myself. Saturday morning running errands with Kate and Ethan was good for me; Sunday morning worship was good for me; today having a "normal" Wednesday will be good for me. Last night my mom got me a Reese's Peanut Butter Cup concrete from Culver's. That was good for me :)
Yesterday I realized that our role as Anna's parents has evolved. God is guiding us to be her advocates in the days and weeks to come.
Speaking of the future, we will be hiring our good friend, Melissa Wimmler, to help out in the coming months. I believe that God has had a hand in this during the last few years. We met Melissa a few years before Anna was born after she had graduated from UW with a degree in Agronomy (I think?). We were just starting a GIFT group at church and she was the first person we invited to join our group. God led us to ask Melissa to be Anna's godmother and their relationship has been a blessing to both Melissa and Anna. Melissa decided to go back to school a few years back to become an elementary teacher. She graduated a year ago in January and began substituting teaching. This past summer Melissa came over several times to help out with the kids and the garden. (Side note, I think we're still going to have our big garden this year for my benefit and to keep things as close to "normal" as we can. But I'm going to need help weeding, picking, and preserving. Just keep that in mind :)
Melissa didn't find a full time position last fall and continued substituting. In our current Bible Study group (which is lead by Andrew and Karen Malone, also Valpo grads), we would pray for Melissa and her job search. The long term positions just didn't seem to happen for her. And now we know why. Melissa will still continue to sub a few times a week, but will also be helping us out with the kids.
Now here's my shameless plug. Melissa told me that she really needs to have a full-time job next fall. She's a wonderful person; I can't really say much more than that about her personally. In terms of her teaching abilities, although I haven't actually seen her teach in a classroom, I can guarantee that she is an amazing teacher and any school would be blessed to have her. Please keep that in mind in the months to come :)
Time for prayers
Thanksgiving
Please give thanks that the younger kids and I slept well last night.
Please give thanks for the help that my parents (especially my mom) have given us.
Please give thanks that Matt and I will be able to be home together for awhile today; my mom will be with Anna.
Requests
Please pray for Anna's emotional, mental, and spiritual state, specifically that she can work through her frustration and anger and then soon get past it. We're going to need to help her tap into the sweet, kind, caring Anna that we all know.
Please pray for my mom today, specifically that she has the strength and wisdom as she interacts with Anna, and the doctors and nurses.
Please pray for Melissa and us as we work out the details of the coming weeks.
Please pray for Charlie Flemming, the fourth child of my junior year college roommate, and his family, including parents Kendra and Mike. He is barely two months old and is currently in a St. Louis hospital awaiting a heart transplant. I believe that God has a reason for the particular timing of our respective families journeys.
I'll close today with a VeggieTales song that I often sing with the kids.
Thank you, God, for this day,
For the sun in the sky,
For my mom and my dad,
For a piece of apple pie,
For my home on the ground,
For His love that's all around.
That's why we say thanks every day.
Because a thankful heart
Is a happy heart.
I'm glad for what I've got
That's an easy way to start.
For the love that He shares
'Cuz He listens to our prayers.
That's why we say thanks every day.
Ethan's a lot of fun right now. I have always really enjoyed this stage of toddler development when babies have learned to walk and are learning to talk. Ethan's a bit of a goof; he likes to make us laugh. His walking is getting faster and faster; I don't think it will be too long before he can run. He LOVES books. Last week my dad said that he must have read at least 50 books with Ethan. His favorite books are ones about trucks and trains; he's all boy :)
Kate has taught Ethan a variety of animal sounds and machine sounds. Some favorites of ours are what cats say ("ye-ow!"), the way Ethan says "woo-woo" for trains, and how he sometimes can now say "mommy" instead of just "mama". We love this little guy.
He seems to be weathering the current storm pretty well. He misses his mama and his dada, but at least we're reassured that he won't remember these days. He's resilient.
Kate has been coping with everything very well. We've tried to keep life as consistent as possible for her. She's still going to preschool Mondays, Tuesdays, and Wednesdays. She has a dance class on Wednesday mornings, story time at the library on Thursday mornings, and Destination Discovery in McFarland on Friday mornings.
We've always said that Kate lives in the moment and that particular personality trait is serving her well these days. She's still able to have lots of fun every day. She misses us when we're gone, but is thrilled to see us again when she can.
Kate is dealing with Anna's illness in very age appropriate ways. She's asking lots of questions, often at random times. Some of our favorites were "Where do Mommy and Daddy sleep when they're at the hospital?" and "What color was Anna's tumor?" If we can't answer her questions, we tell her that we'll ask the doctors. Dr. Iskandar said to tell Kate that the tumor was gray :)
Kate has played "hospital" and "doctor" a bit with cars, trucks, dolls, babies, etc. One of the child life specialists at the hospital gave Kate a doll with a hospital gown that she could use however she wanted. Melissa and Kate decorated it to look like Anna. Kate calls it her "Anna doll" and told us that when she misses Anna, she can hug her Anna doll.
Last night while I was having dinner with the younger kids and my mom, Kate said "I miss having dinner with our family" or something like that. She's also had a few bad dreams, which is typical for her when she's under stress. She's also resilient.
Matt is doing great, considering the circumstances. He and I have learned a lot about each other in the past week. God was working in our relationship prior to Anna's illness as well. My mom wanted to make sure everyone knew how well Matt has done taking over at home while I have been at the hospital, and how he has been a good teacher for my mom in regards to the little things at home (laundry, cooking, cleaning, etc.)
He's planning on going back to work next week. Matt's colleagues have been very understanding so far, but since we don't know exactly what this year holds, we don't want him to use all of this sick/leave time at the start of the calendar year.
My mom has been a huge help. I think God has been preparing my mom (and dad, too) for this experience for awhile now. My mom and I have always been grateful for our relationship, especially since I became a mom, but I don't think there are words to describe how blessed we both feel to have each other right now.
As for me, I'm okay, everything considered. As the nurses keep reminding me, I need to take care of myself. Saturday morning running errands with Kate and Ethan was good for me; Sunday morning worship was good for me; today having a "normal" Wednesday will be good for me. Last night my mom got me a Reese's Peanut Butter Cup concrete from Culver's. That was good for me :)
Yesterday I realized that our role as Anna's parents has evolved. God is guiding us to be her advocates in the days and weeks to come.
Speaking of the future, we will be hiring our good friend, Melissa Wimmler, to help out in the coming months. I believe that God has had a hand in this during the last few years. We met Melissa a few years before Anna was born after she had graduated from UW with a degree in Agronomy (I think?). We were just starting a GIFT group at church and she was the first person we invited to join our group. God led us to ask Melissa to be Anna's godmother and their relationship has been a blessing to both Melissa and Anna. Melissa decided to go back to school a few years back to become an elementary teacher. She graduated a year ago in January and began substituting teaching. This past summer Melissa came over several times to help out with the kids and the garden. (Side note, I think we're still going to have our big garden this year for my benefit and to keep things as close to "normal" as we can. But I'm going to need help weeding, picking, and preserving. Just keep that in mind :)
Melissa didn't find a full time position last fall and continued substituting. In our current Bible Study group (which is lead by Andrew and Karen Malone, also Valpo grads), we would pray for Melissa and her job search. The long term positions just didn't seem to happen for her. And now we know why. Melissa will still continue to sub a few times a week, but will also be helping us out with the kids.
Now here's my shameless plug. Melissa told me that she really needs to have a full-time job next fall. She's a wonderful person; I can't really say much more than that about her personally. In terms of her teaching abilities, although I haven't actually seen her teach in a classroom, I can guarantee that she is an amazing teacher and any school would be blessed to have her. Please keep that in mind in the months to come :)
Time for prayers
Thanksgiving
Please give thanks that the younger kids and I slept well last night.
Please give thanks for the help that my parents (especially my mom) have given us.
Please give thanks that Matt and I will be able to be home together for awhile today; my mom will be with Anna.
Requests
Please pray for Anna's emotional, mental, and spiritual state, specifically that she can work through her frustration and anger and then soon get past it. We're going to need to help her tap into the sweet, kind, caring Anna that we all know.
Please pray for my mom today, specifically that she has the strength and wisdom as she interacts with Anna, and the doctors and nurses.
Please pray for Melissa and us as we work out the details of the coming weeks.
Please pray for Charlie Flemming, the fourth child of my junior year college roommate, and his family, including parents Kendra and Mike. He is barely two months old and is currently in a St. Louis hospital awaiting a heart transplant. I believe that God has a reason for the particular timing of our respective families journeys.
I'll close today with a VeggieTales song that I often sing with the kids.
Thank you, God, for this day,
For the sun in the sky,
For my mom and my dad,
For a piece of apple pie,
For my home on the ground,
For His love that's all around.
That's why we say thanks every day.
Because a thankful heart
Is a happy heart.
I'm glad for what I've got
That's an easy way to start.
For the love that He shares
'Cuz He listens to our prayers.
That's why we say thanks every day.
Tuesday, February 11, 2014
Tuesday evening
I just spoke with Matt (who's staying with Anna tonight at the hospital) and he said that she's pretty grumpy, but otherwise doing okay physically. Her tummy seems to have settled down a bit and she ate more food today than she has in more than a week, which isn't saying too much, but still improvement.
One of the things that's bugging Anna the most right now is the "turban" she has to wear to protect the drain that's still in place for at least three more days. The "turban" is basically a helmet made of gauze and tape that's wrapped around and around her head. It kind of reminds me of the old leather football helmets. Not too bad until you realize that she has to wear it all the time, and until today it hadn't come off since last Wednesday's surgery. Anna was getting pretty itchy under there and just plain uncomfortable.
Sometime mid-morning, one of the neurosurgeons who is a little lower on the totem pole came in to re-wrap her head. After the procedure, I kind of felt like his bedside manner could use a little work, but I was at least glad that he let me scratch Anna's head for awhile before he re-wrapped things.
Apparently, when the head neurosurgeon came in late in the day to check on Anna, one of the first things he said was "That's a terrible turban!" Not only did he offer to re-wrap her head himself (he's kind of an expert when it comes to this kind of thing), but he also allowed Anna to have her hair washed first! Hooray! And I guess they decorated it up a bit with some pink gauze. Matt said that Anna griped and complained through the whole ordeal, but that's probably because the actual process was a bit uncomfortable. Hopefully this will ease some of her discomfort.
Time for prayers
Thanksgiving
Please give thanks that Anna's tummy seems to be settling down.
Please give thanks that Kate, Ethan, and Matt were able to rest well last night.
Please give thanks that Anna's turban was taken care of by the best of the best.
Please give thanks that the digestive illness seems to be contained to our room for the moment.
Requests
Please pray that Anna is able to rest well overnight.
Please pray that Anna continues to grow stronger.
Please pray for wisdom for Matt and me as we make some big decisions about Anna's course of treatment.
Please pray that I sleep well tonight at home; this momma needs some rest.
Thank you especially tonight to those of you who have sent us Bible verses in the last few days. They offer some much needed encouragement during the darker parts of our journey.
One of the things that's bugging Anna the most right now is the "turban" she has to wear to protect the drain that's still in place for at least three more days. The "turban" is basically a helmet made of gauze and tape that's wrapped around and around her head. It kind of reminds me of the old leather football helmets. Not too bad until you realize that she has to wear it all the time, and until today it hadn't come off since last Wednesday's surgery. Anna was getting pretty itchy under there and just plain uncomfortable.
Sometime mid-morning, one of the neurosurgeons who is a little lower on the totem pole came in to re-wrap her head. After the procedure, I kind of felt like his bedside manner could use a little work, but I was at least glad that he let me scratch Anna's head for awhile before he re-wrapped things.
Apparently, when the head neurosurgeon came in late in the day to check on Anna, one of the first things he said was "That's a terrible turban!" Not only did he offer to re-wrap her head himself (he's kind of an expert when it comes to this kind of thing), but he also allowed Anna to have her hair washed first! Hooray! And I guess they decorated it up a bit with some pink gauze. Matt said that Anna griped and complained through the whole ordeal, but that's probably because the actual process was a bit uncomfortable. Hopefully this will ease some of her discomfort.
Time for prayers
Thanksgiving
Please give thanks that Anna's tummy seems to be settling down.
Please give thanks that Kate, Ethan, and Matt were able to rest well last night.
Please give thanks that Anna's turban was taken care of by the best of the best.
Please give thanks that the digestive illness seems to be contained to our room for the moment.
Requests
Please pray that Anna is able to rest well overnight.
Please pray that Anna continues to grow stronger.
Please pray for wisdom for Matt and me as we make some big decisions about Anna's course of treatment.
Please pray that I sleep well tonight at home; this momma needs some rest.
Thank you especially tonight to those of you who have sent us Bible verses in the last few days. They offer some much needed encouragement during the darker parts of our journey.
A little setback
In terms of Anna's recovery from the surgery, she had another good night. However, it was unfortunately an eventful night in Anna's room last night for other reasons.
Because of her undernourishment leading up to her surgery and because she's been on antibiotics now for over a week, our poor little girl's digestive system is all out of whack. After a bit of a rough night, Anna's stools were tested for a certain nasty bacteria and the results came back positive. To put it bluntly, the bad bacteria have taken over and are making her very, very uncomfortable.
The only things that will help will be the cessation of the antibiotics and Anna starting to replace the good bacteria by eating lots of yogurt. We have no control over the antibiotic usage; that depends on when the neurosurgeon says it's okay to take out her drain. As soon as Anna wakes up, we're going to offer her a smorgasbord of yogurt options. She seemed interested in that before she fell asleep.
Please give thanks that Anna is able to roll around in bed a bit now and get herself more comfortable.
Please give thanks that Anna is now remembering to use the words "please" and "thank you" sometimes.
Please pray that Anna's little tummy and digestive system are able to get back in balance, whether or not the antibiotics are stopped.
Please pray that this illness doesn't spread to other parts of the PICU. For most people who have normal digestion going on, it's not a big deal if they get a little sick. But for the kids on the PICU, it could be a big deal if they catch it.
Please pray for the doctors and nurses as they are required to take extra caution now as they enter and exit Anna's room.
Because of her undernourishment leading up to her surgery and because she's been on antibiotics now for over a week, our poor little girl's digestive system is all out of whack. After a bit of a rough night, Anna's stools were tested for a certain nasty bacteria and the results came back positive. To put it bluntly, the bad bacteria have taken over and are making her very, very uncomfortable.
The only things that will help will be the cessation of the antibiotics and Anna starting to replace the good bacteria by eating lots of yogurt. We have no control over the antibiotic usage; that depends on when the neurosurgeon says it's okay to take out her drain. As soon as Anna wakes up, we're going to offer her a smorgasbord of yogurt options. She seemed interested in that before she fell asleep.
Please give thanks that Anna is able to roll around in bed a bit now and get herself more comfortable.
Please give thanks that Anna is now remembering to use the words "please" and "thank you" sometimes.
Please pray that Anna's little tummy and digestive system are able to get back in balance, whether or not the antibiotics are stopped.
Please pray that this illness doesn't spread to other parts of the PICU. For most people who have normal digestion going on, it's not a big deal if they get a little sick. But for the kids on the PICU, it could be a big deal if they catch it.
Please pray for the doctors and nurses as they are required to take extra caution now as they enter and exit Anna's room.
Monday, February 10, 2014
Praise God!
Two weeks ago I would not have thought that the news we received today would be considered good news. But given all of the bad news we heard last week, I would consider the news we received today to be great news! So thank you in advance for all of your thoughts and prayers. We still have a long road ahead of us, but it's starting to look a bit more manageable.
Anna's tumor is definitely Medulloblastoma. The treatment for this kind of cancer requires surgery (done!), a brief respite for Anna's body to heal and recover a bit from the surgery (2-3 weeks), then a 6 week intensive treatment of radiation and chemotherapy, another respite (6 weeks), and then a 6 month course of chemotherapy, four days a month.
Are you ready for the good news? All of the radiation and chemo is outpatient! That means that Anna may be home in a few weeks time and the first intensive treatment will be "done" by summer ... hooray! (Matt thinks the oncologists told us this when they met with us last Wednesday, but for some reason I don't remember that part of the conversation.) Of course, all of this is dependent on things continuing to progress smoothly.
Matt and I will have a tough decision to make this week, however. We have two options when it comes to the radiation therapy: a newer type of treatment referred to as protons and the more traditional radiation referred to as photons. Without getting into the messy details, the protons treatment has the potential for fewer long term side effects. It hasn't been around long enough for published studies to show this, but the theory behind it backs up this idea. Unfortunately, the closest facility that provides the proton treatment is just outside of Chicago. Anna would need to be in Chicago every Monday through Friday for six weeks.
So ... we have to decide. It will be a difficult decision, but we believe that God will lead us to the right one for our family.
Speaking of long term side effects, here's what we're in for. The biggest concerns are related to the intensive radiation needed on Anna's whole brain and on her spinal column. Anna's brain and spinal column will be effected negatively by the radiation. First it will affect Anna's growth. Her spine isn't going to be as long as it would have otherwise become. Then it will also affect her brain. To say it simply, the 25 year old Anna after this series of events will be different from the 25 year old Anna that she would have become if this hadn't happened. To what extent her cognitive abilities will be altered, no one can say. We do know that Anna has a few things in her favor with regards to this. She's pretty smart for a 6 year old and she is normally in very good health. Plus, we already have evidence to how amazing her support network is. We'll just have to wait an see how she is affected.
The radiation has other potential side effects, but they can be monitored as Anna gets older. The doctors are pretty good at treating most of them.
Time for prayers
Thanksgiving
Please give thanks for the good news that Anna will be home probably within a month!
Please give thanks that Anna's catheter has continued to stay out!
Please give thanks that Matt and I were able to have our wits about us for our meeting with the oncology/radiation team. We were amazed at the kinds of questions we were able to ask.
Please give thanks for all of the little things that have just fallen into place during the last few days with regards to the details of our everyday lives.
Please give thanks for the uplifting dinner I just had with a fellow PICU mom. We met randomly (okay, God planned it) in the kitchen, struck up a conversation, and ended up praying together.
Please continue to give thanks for the amazing care Anna is receiving here.
Requests
Please pray for wisdom and guidance as Matt and I make our decision in the coming days.
Please pray for continued strength for Anna, physically, mentally, emotionally, and spiritually.
Please pray for a good night's rest for our whole family; we all need it.
Please pray for a little baby girl, Avyn, and her family who have been in and out of the PICU for a few months now. Her mom is the woman I met at dinner.
Please pray for strength for my mom. She's not used to being the caregiver for Ethan and Kate. It was tiring for me on normal days, and these aren't "normal" days.
Thank you again for all of your support and prayers. The last week has been a rough one, but I think things are beginning to look up.
Anna's tumor is definitely Medulloblastoma. The treatment for this kind of cancer requires surgery (done!), a brief respite for Anna's body to heal and recover a bit from the surgery (2-3 weeks), then a 6 week intensive treatment of radiation and chemotherapy, another respite (6 weeks), and then a 6 month course of chemotherapy, four days a month.
Are you ready for the good news? All of the radiation and chemo is outpatient! That means that Anna may be home in a few weeks time and the first intensive treatment will be "done" by summer ... hooray! (Matt thinks the oncologists told us this when they met with us last Wednesday, but for some reason I don't remember that part of the conversation.) Of course, all of this is dependent on things continuing to progress smoothly.
Matt and I will have a tough decision to make this week, however. We have two options when it comes to the radiation therapy: a newer type of treatment referred to as protons and the more traditional radiation referred to as photons. Without getting into the messy details, the protons treatment has the potential for fewer long term side effects. It hasn't been around long enough for published studies to show this, but the theory behind it backs up this idea. Unfortunately, the closest facility that provides the proton treatment is just outside of Chicago. Anna would need to be in Chicago every Monday through Friday for six weeks.
So ... we have to decide. It will be a difficult decision, but we believe that God will lead us to the right one for our family.
Speaking of long term side effects, here's what we're in for. The biggest concerns are related to the intensive radiation needed on Anna's whole brain and on her spinal column. Anna's brain and spinal column will be effected negatively by the radiation. First it will affect Anna's growth. Her spine isn't going to be as long as it would have otherwise become. Then it will also affect her brain. To say it simply, the 25 year old Anna after this series of events will be different from the 25 year old Anna that she would have become if this hadn't happened. To what extent her cognitive abilities will be altered, no one can say. We do know that Anna has a few things in her favor with regards to this. She's pretty smart for a 6 year old and she is normally in very good health. Plus, we already have evidence to how amazing her support network is. We'll just have to wait an see how she is affected.
The radiation has other potential side effects, but they can be monitored as Anna gets older. The doctors are pretty good at treating most of them.
Time for prayers
Thanksgiving
Please give thanks for the good news that Anna will be home probably within a month!
Please give thanks that Anna's catheter has continued to stay out!
Please give thanks that Matt and I were able to have our wits about us for our meeting with the oncology/radiation team. We were amazed at the kinds of questions we were able to ask.
Please give thanks for all of the little things that have just fallen into place during the last few days with regards to the details of our everyday lives.
Please give thanks for the uplifting dinner I just had with a fellow PICU mom. We met randomly (okay, God planned it) in the kitchen, struck up a conversation, and ended up praying together.
Please continue to give thanks for the amazing care Anna is receiving here.
Requests
Please pray for wisdom and guidance as Matt and I make our decision in the coming days.
Please pray for continued strength for Anna, physically, mentally, emotionally, and spiritually.
Please pray for a good night's rest for our whole family; we all need it.
Please pray for a little baby girl, Avyn, and her family who have been in and out of the PICU for a few months now. Her mom is the woman I met at dinner.
Please pray for strength for my mom. She's not used to being the caregiver for Ethan and Kate. It was tiring for me on normal days, and these aren't "normal" days.
Thank you again for all of your support and prayers. The last week has been a rough one, but I think things are beginning to look up.
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