In spite of having a rough night, due in part to the steroids Anna is taking, she had a great day. She started with her XRT without anesthesia ... hip, hip, hooray! We are slowly, but surely, removing the layers that have been holding Anna back ... tumor, cancer, sedation medications, c.diff., anitbiotics for c.diff., daily anesthesia, etc. Though Anna was still tired after her treatments, she did a wonderful job and impressed many people here with here abilities and self-control.
Other parts of her day included some time in the stander to keep working on those legs and feet, speech time (during which she still doesn't want to eat because it hurts her throat, but she refused to try some of the "magic mouthwash"), a nap, a productive OT/PT time, a field trip outside and around the first floor, a visit from Kate and Carly, another field trip back to the PICU, and a couple of VeggieTales. This kid was full of good cheer and plenty of smiles for lots of different people today; it's SO nice to see our Anna coming through.
All of this after a pretty rough night last night during which she just physically could not sleep for long stretches of time. Imagine what she'll be like when she can sleep again :)
The plan for the week is to try to taper her TPN needs and get her strictly to formula and anything she is willing to take orally, to cut back a little on her steroids to (hopefully) help her sleep bettter, and to add some extra OT/PT time since she doesn't have to recover from anesthesia anymore. We also have a care conference planned on Wednesday to (again, hopefully) make sure everything is in place for Anna's hospital dischrage next Tuesday after her last XRT.
Speaking of Anna's discharge, we are experiencing a wide range of emotions as we prepare for the end of Anna's radiation treatment and her hospital discharge.
We are excited. It will be wonderful to have our family at our home without having to return to the hospital; we really, really miss being home together.
We are anxious. Up until now, the nurses have been only a button away; the doctors only a page away. We have had the experts at our fingertips for almost two months and, though they will only be a phone call away, we will be more on our own than we have been in months.
We are afraid. During treatment, everything is being done to fight the cancer. When the first big push is over, we are left with the question "What if the cancer isn't all gone?" Even though Anna still has six more months of chemo, the term used for that treatment is "maintenance chemotherapy"; the radiation is supposed to get the bulk of the disease. In about a month, Anna will have an MRI to see how everything on the inside looks. However, we have been informed that Anna will never again have a "normal" looking MRI; there will always be scar tissue or residual spots. The doctors will focus more on any changes in the MRI scans.
We are nervous. Caring for Anna is going to take a lot of work here at the beginning. In addition, Kate and Ethan are also going to have certain needs as we adjust to having Anna home with us 24 hours a day. Plus, we will be meeting a home health nurse who will do Anna's blood draws and keep checking in to make sure that everything is going smoothly. We will also be building relationships with three different home therapists (speech, OT, and PT) who will be visiting our home two or three times a week each to continue with Anna's rehab.
We are sad (more me, than Matt). I have been living at the hospital off and on for almost two months and have built relationships. I was joking with Matt last week that I couldn't even walk down to get my breakfast in the cafeteria without running into one (or more) faces that I recognized and names that I knew. Because of the kinds of schedules that people keep around here, it will be hard for me to get any kind of closure with many of the doctors, nurses, nursing assistants, residents, etc. But it's not about me :)
We are thankful. To God. For the doctors, nurses, therapists, technicians, etc. For our family, friends, church, and community. For all of the physical, emotional, spiritual, and financial support we have received.
We are relieved. For most of the month of February, Anna's condition was worsening. For most of the month of March, Anna's condition was improving. It is a relief to know that the experts here trust us enough to send us home to care for Anna and her needs.
Time for prayers
Thanksgiving
Please give thanks that Anna is doing better each and every day.
Please thank God for Anna's cheerfulness and silliness that the doctors and nurses are finally being able to see.
Please give thanks for all of the amazing care that Anna has received during the last 8 weeks. Has it really been 8 weeks?
Please thank God for the opportunity for me to be at the hospital for several days in a row this week.
Please give thanks that Matt's parents are willing and able to help out at home all week this week.
Please thank God for the support that we have been receiving from everyone during this challenging time.
Requests
Please pray that Anna is able to sleep better. When I ask her what bothers her the most right now, she says she just wants to sleep.
Please pray that Anna's skin sensitivity diminishes now that her spinal radiation is over.
Please ask God to heal Anna's digestive system well enough for her to eat food orally again and tolerate all of her feeds.
Please continue to pray that Anna's treatments are 100% effective and that she experiences few side effects.
Please continue to pray for strength and wisdom for Matt and me, especially as we prepare for life at home again.
Please continue to pray for Anna's caregivers at the hospital. A new week brings new faces and new perspectives.
Please pray for strength for Matt's parents as they are Kate and Ethan's primary care givers this week.
Please pray for Kate and Ethan as we enter the home stretch of our time apart as a family; they both are missing their momma.
Thanks, as always, for your prayers and support. And postcards! Today Anna received another 25 or so in the mail, bringing the total up to almost 150 ... that's a lot of stickers on our map!
Monday, March 31, 2014
Sunday, March 30, 2014
Pictures
Here are a few pictures from Kate and Ethan's visit to Grandpa and Grandma Colba's.
Grandma and Ethan pose by "Ethan's path" while Grandpa forges ahead in the Kubota to collect some more maple sap.
Ethan and Kate relax for a bit on the log swing on Grandpa and Grandma's deck.
When not outside, Kate built an incredible town with blocks, cars, plastic eggs, etc.
Our tree-huggin' sap-stealing Kate :)
Here is a photo of Anna and Kate last weekend during Anna's first visit home. (Yes, Kate was wearing shorts and a tank top ... crazy child.)
Recently, Ethan has finally been able to explore our yard as a walking man. It didn't take him long to find a truck, haul it up on a picnic table, and watch its wheels.
Miss Kate likes to pose with her rainbow hat.
Grandma and Ethan pose by "Ethan's path" while Grandpa forges ahead in the Kubota to collect some more maple sap.
Ethan and Kate relax for a bit on the log swing on Grandpa and Grandma's deck.
When not outside, Kate built an incredible town with blocks, cars, plastic eggs, etc.
Our tree-huggin' sap-stealing Kate :)
Here is a photo of Anna and Kate last weekend during Anna's first visit home. (Yes, Kate was wearing shorts and a tank top ... crazy child.)
Recently, Ethan has finally been able to explore our yard as a walking man. It didn't take him long to find a truck, haul it up on a picnic table, and watch its wheels.
Miss Kate likes to pose with her rainbow hat.
Ethan has already figured out how to climb up the tower, as long as a parent is around to spot him. Spring and summer are going to be a lot of fun with this little guy.
Saturday, March 29, 2014
Changes
Kate and Ethan got back this morning from a rousing few days up at their grandparents' home. Collecting maple sap, taking kubota rides, building with blocks, watching basketball with Uncle Adam, and having four adults dote on them were all good for the two of them. Previously, we would have hesitated before sending one of our toddlers away from us for a few nights, but by this point, we were glad for the break :)
The two of them came home this morning to two parents and one big sister. Anna was given day passes again for both days this weekend, so now that we knew a bit more what to expect, we picked her up "early" at the hospital, were home by 9:30, and didn't get back to her hospital room until a little after 6 this evening. Again, Matt and I really enjoyed having our whole family home. We managed to have two meals together (although Anna's throat hurts too much from her treatments right now to want to eat anything), watched Frozen (finally!) while Ethan was napping, and stayed outdoors for as long as Anna's emaciated body could handle it (even after being covered in a winter coat, hat, gloves, blankets, etc.).
Spending time at home with Anna opens our eyes to how life will be different when she is home for good. Besides Anna's physical challenges and limitations at this point, her whole cancer experience has changed her, and will continue to change her, profoundly. Someone reminded me recently that the little girl we had two months ago is gone; Anna will never be quite the same.
One of our favorite children's authors/illustrators is Bill Peet. Both Kate and Anna claimed him as their favorite when they were interviewed at school; Kate knows exactly where to find the "Bill Peet" books at our local library. Each girl has their favorite titles, but both enjoy The Wump World. Without going into all of the details, a peaceful, calm planet is invaded by a foreign people who pollute the natural green world until it is unrecognizable. When the other people finally leave the planet, the wumps come out of hiding to find their world utterly destroyed. They search for any remnants of their former world until they find a small clearing with trees and grass. The last page of the book reads "In time, the murky skies would clear up and the rain would wash the scum from the rivers and lakes. The tall buildings would come tumbling down and the freeways would crumble away. And in time the green growth would find its way through the rubble, but the wump world would never be quite the same." I couldn't read this book during most of the month of Febrary without crying at the end.
Matt and I are learning to take things as they come and plan accordingly, but every so often we think about what our life could have been like had Anna not had cancer. We are not bitter about how life has turned out for our family, and we plan to make the most of our time together, wherever and whenever we are with each other.
Anna is without a parent tonight at the hospital, but we plan on picking her up tomorrow after early church so we can have as much time at home together as possible ... again :)
Anna had a radiation simulation yesterday afternoon to see how she would do with the mask set-up during her treatments next week. She did great! Hopefully, this means she won't need a daily dose of anesthesia anymore.
Yesterday while at the hospital I started asking questions about Anna's anticipated discharge date, because we want to make sure that everything is in place for her to come home on the last day of her treatment (Tuesday, April 8 for those of you keeping track). So far so good, although the last few weeks of treatment is often when kids experiences setbacks that delay discharges. Maybe our map will get a few more stickers on it by then.
Prayers
Thanksgiving
Please give thanks for a safe and happy visit for Kate and Ethan with my parents.
Please give thanks for safe travels so far for Matt's parents, as they are en route to Madison.
Please thank God for a happy day at home together as a family.
Please give thanks for weekend breaks from radiation and chemotherapy.
Please thank God that Anna's radiation simulation without anesthesia went well yesterday.
Please give thanks for Anna's continuing strength and endurance.
Requests
Please pray that Anna is able to be off of TPN by the time she is discharged from the hospital.
Please continue to pray for strength and wisdom for Matt and me.
Please continue to pray for all of Anna's care staff at the hospital.
Please pray for strength for Matt's parents in this coming week as they will be helping us out quite a bit.
Please ask God to bless our family day tomorrow.
Please continue to pray that Anna's treatments are 100% effective and that she experiences few side effects.
When we got to the hospital this evening, Anna's nurses had created this guy to welcome her back :)
Thursday, March 27, 2014
Looking Up
Things always look a little bit brighter after a relatively decent night's sleep, at least for me they do. This all still sucks, but I'm, personally, feeling more up to the challenge than I was yesterday.
A few things have helped my attitude. First, Matt and I were able to be home together last night with Kate and Ethan; we haven't been around each other much since the weekend and we miss one another. Second, Anna seems to be less agitated than she was yesterday morning; she and I had a comforting time together this afternoon and evening. Third, we are being continually reassured that Anna is tolerating all of her treatments remarkably well and that her rehab work is going at least as well as can be expected, if not better. Additionally, all of the "clinical signs" are pointing to the fact that the cancer is receding; we can only hope and pray that it is completely taken care of by the end of the full course of chemotherapy.
Finally, I feel a bit more at peace about the coming two weeks because of a decision Matt and I made yesterday and today. We decided that instead of doing the daily back and forth transitions to and from the hospital, I will pretty much camp out here at the hospital for the remainder of Anna's radiation treatments.
We think this will be best for Anna, so that she can have some consistency during this difficult emotional time. We also think this will be best for me, so that I don't have to spend time and energy prepping another adult for a day with Anna, prepping the therapists/nurses for Anna having a different companion, or spend time debriefing with these various people at the end of the day. Also, we think this will be best for Kate and Ethan, since on the days that I have been home with them recently, I can't keep my mind or body engaged in what is going on with them.
For my health and sanity, I don't plan on sleeping more than two nights in a row in Anna's room, but I will plan on being with her during the "work day" tomorrow and four days next week. Matt is still planning on taking a day next week to be with Anna as well.
In terms of Anna's gains, she has been getting more and more formula each day, instead of the TPN, with the goal of being off of TPN by the beginning of next week. So far, her digestive system is tolerating the feeds very nicely.
Anna also was in the stander for almost a half hour today. The therapists trained me on how to use it, so now Anna will have some time in the stander outside of her therapy sessions; that way the therapists can use their time with Anna more effectively.
I took Anna for a walk around the hospital this evening, ending with a visual scavengar hunt that the child life specialist set up for her on P4. With all of the other action going on in her life today, it is impressive that she was able to still have a field trip like this at the end of the day. Anna's strength and stamina are certainly increasing.
In additon, we have made our wishes clear that we want to give Anna the opportunity to deal with and express her emotions without any additional medication, even if some of her mood swings are a side effect of life here at the hospital. If Anna seems to struggle with her anger and frustration after our attempts, then at least we know that medication is an option. Anna's occupational therapist had some good ideas to help get the anger out, and this evening Anna did some "mood coloring" during which she picked different colors to represent different feelings. Both of these activities have seemed to help. Unfortunately, though, Anna's recent outbursts have caused her to lose her voice :(
Every day is a new day with new struggles, but as long as we can keep our eyes focused on Jesus, we know we will get through this time.
Time for prayers
Thanksgiving
Please give thanks for my renewed strength after a night at home.
Please thank God that Anna is continuing to tolerate all of her treatments very well and that she is experiencing few side effects.
Please give thanks that Anna's body is handling her feeds again.
Please thank God for the miracles of modern medicine.
Please give thanks that my parents were willing and able to take Kate and Ethan up to their place for a few nights so that Matt and I can have a brief respite from the total package.
Please thank God that Matt's parents are willing and able to come and help us out next week.
Please give thanks that Anna's treatments are working effectively on her cancer.
Please thank God for the peace that only He can give.
Requests
Please pray for my parents, my brother, Kate, and Ethan, as they all spend 48 hours together without Matt, Anna, or me. Pray for everyone's health and safety, as well as asking God to bless their time together.
Please continue to pray for strength and wisdom for Matt and me.
Please continue to ask God to heal our daughter's broken body.
Please pray for peace for Anna.
Please continue to pray for strength, wisdom, and compassion for Anna's caregivers here at the hospital.
Anna asks you to pray that she gets a restful night's sleep at the hospital.
Please ask God to bless our weekend as a family as we anticipate having two day passes again.
Thank you, again, for your continued support and prayers. And postcards! One of these days I'll take a picture of our map to share :)
A few things have helped my attitude. First, Matt and I were able to be home together last night with Kate and Ethan; we haven't been around each other much since the weekend and we miss one another. Second, Anna seems to be less agitated than she was yesterday morning; she and I had a comforting time together this afternoon and evening. Third, we are being continually reassured that Anna is tolerating all of her treatments remarkably well and that her rehab work is going at least as well as can be expected, if not better. Additionally, all of the "clinical signs" are pointing to the fact that the cancer is receding; we can only hope and pray that it is completely taken care of by the end of the full course of chemotherapy.
Finally, I feel a bit more at peace about the coming two weeks because of a decision Matt and I made yesterday and today. We decided that instead of doing the daily back and forth transitions to and from the hospital, I will pretty much camp out here at the hospital for the remainder of Anna's radiation treatments.
We think this will be best for Anna, so that she can have some consistency during this difficult emotional time. We also think this will be best for me, so that I don't have to spend time and energy prepping another adult for a day with Anna, prepping the therapists/nurses for Anna having a different companion, or spend time debriefing with these various people at the end of the day. Also, we think this will be best for Kate and Ethan, since on the days that I have been home with them recently, I can't keep my mind or body engaged in what is going on with them.
For my health and sanity, I don't plan on sleeping more than two nights in a row in Anna's room, but I will plan on being with her during the "work day" tomorrow and four days next week. Matt is still planning on taking a day next week to be with Anna as well.
In terms of Anna's gains, she has been getting more and more formula each day, instead of the TPN, with the goal of being off of TPN by the beginning of next week. So far, her digestive system is tolerating the feeds very nicely.
Anna also was in the stander for almost a half hour today. The therapists trained me on how to use it, so now Anna will have some time in the stander outside of her therapy sessions; that way the therapists can use their time with Anna more effectively.
I took Anna for a walk around the hospital this evening, ending with a visual scavengar hunt that the child life specialist set up for her on P4. With all of the other action going on in her life today, it is impressive that she was able to still have a field trip like this at the end of the day. Anna's strength and stamina are certainly increasing.
In additon, we have made our wishes clear that we want to give Anna the opportunity to deal with and express her emotions without any additional medication, even if some of her mood swings are a side effect of life here at the hospital. If Anna seems to struggle with her anger and frustration after our attempts, then at least we know that medication is an option. Anna's occupational therapist had some good ideas to help get the anger out, and this evening Anna did some "mood coloring" during which she picked different colors to represent different feelings. Both of these activities have seemed to help. Unfortunately, though, Anna's recent outbursts have caused her to lose her voice :(
Every day is a new day with new struggles, but as long as we can keep our eyes focused on Jesus, we know we will get through this time.
Time for prayers
Thanksgiving
Please give thanks for my renewed strength after a night at home.
Please thank God that Anna is continuing to tolerate all of her treatments very well and that she is experiencing few side effects.
Please give thanks that Anna's body is handling her feeds again.
Please thank God for the miracles of modern medicine.
Please give thanks that my parents were willing and able to take Kate and Ethan up to their place for a few nights so that Matt and I can have a brief respite from the total package.
Please thank God that Matt's parents are willing and able to come and help us out next week.
Please give thanks that Anna's treatments are working effectively on her cancer.
Please thank God for the peace that only He can give.
Requests
Please pray for my parents, my brother, Kate, and Ethan, as they all spend 48 hours together without Matt, Anna, or me. Pray for everyone's health and safety, as well as asking God to bless their time together.
Please continue to pray for strength and wisdom for Matt and me.
Please continue to ask God to heal our daughter's broken body.
Please pray for peace for Anna.
Please continue to pray for strength, wisdom, and compassion for Anna's caregivers here at the hospital.
Anna asks you to pray that she gets a restful night's sleep at the hospital.
Please ask God to bless our weekend as a family as we anticipate having two day passes again.
Thank you, again, for your continued support and prayers. And postcards! One of these days I'll take a picture of our map to share :)
Wednesday, March 26, 2014
This sucks.
If you are hoping for an uplifting or positive update, this post is not for you. I am too weary to be hopeful right now. Please forgive me for the following tirade.
This sucks. This really, really sucks. Not just the cancer part, but everything. It's not fair. If I could get off this train and find a quiet hole in which to sleep for a few weeks, I would. But I can't.
Mostly, this sucks for Anna. I bet she wishes she could get off the ride, too. But she can't either.
A friend recently recommended a book called The Invisible Girls. I usually stay away from good fiction these days because I don't have the time to get sucked into a book. But this one was written by a cancer survivor and I thought it sounded interesting. So I got started reading it and couldn't put it down, but maybe that was a good thing.
I would highly recommend the book, and not just because of the cancer piece, although the author's experiences with her cancer treatments were eye-opening for me. Sarah Thebarge was diagnosed at age 27 with a very aggressive form of breast cancer and at one point, she underwent a series of treatments very similar to what Anna is experiencing. For an otherwise healthy adult who was very educated and who, at least at the start of her treatment, had a good support network, the radiation and chemotherapy were really rough. She was very angry, very frustrated, and very sad for a long time.
Anna is going through the same kind of treatment, but she does not have the life experience or maturity that an adult has. In addition, Anna is also undergoing some very intensive rehabilitation - the kind that pushes her as far as she can go, and then some, each and every day. The rehab itself would wipe out most adults.
And yet Anna is doing both of these things simultaneously.
It sucks.
It's not fair.
This morning Anna was very angry, and understandably so.
For those of you who know Anna better, some of the following may be surprising, but then again, it may not be. When Anna was a toddler and preschooler, her tantrums were very long and involved. We're talking about 30+ minutes of screaming, crying, and yelling. There was not much that would get her out of it. She was the kind of kid who would hold it all in until she just couldn't anymore, and then her pressure valve would blow. After watching Kate, and now Ethan, go through the toddler and preschool stages, we realize that Anna was certainly a different kid with different kinds of needs.
Anyway, we worked with Anna a lot on figuring out what strategies would help her deal with life. By the winter of her kindergarten year, she was doing great. In fact, I remember at the second conference with her kindergarten teacher, we all agreed that she had just seemed to "settle". And the start of first grade was great. Most people who see Anna and interact with her would never guess at the struggles we had with her.
Some of the strategies that have worked for Anna are routines, getting lots of outside time, lots of physical activity, having opportunities to play creatively, and also helping out around the home, especially by helping out with her younger brother - the same kinds of things that work for any kid. In fact, we decided that her consequences this year for misbehavior included lots of dusting and/or cleaning.
However, none of those coping strategies are really options for her right now. How do you help a kid deal with their anger and frustration in this kind of situation? (This is a rhetorical question; we're not looking for specific answers or advice. Please don't send us anything; we do not have the time or energy to sift through another layer.)
This morning was hard. The doctors and nurses are doing their best to be helpful, by suggesting a health/psych consult, or letting us know that often times kids on chemo/radiation end up taking mood stabilizers. One of the last things Anna needs right now is more medication. Besides, a mood stabilizer would take away the highs that Anna is feeling, as well as the lows. What she needs is to be able to feel the things she is feeling, know that it is okay to feel those emotions, and yet have a safe and healthy way to deal with and cope with those emotions.
We have always worked with our kids on communicating about their feelings. We want them to know that it is okay to be angry, sad, frustrated, happy, etc. But we want them to know that they have to be careful of what they do when they are angry and frustrated, that they need to make sure they are not hurting themselves or others with their actions when they are mad.
With the help of Anna's therapists, doctors, and nurses, we are working on ways for Anna to safely express her emotions. Hopefully we can find something that works.
On a more positive note, my mom told me that Anna was not as angry later in the day today as she was with me at the start of the day. However, all of our kids tend to save their most extreme emotions for Mom and Dad.
So this sucks. This really, really sucks. And it sucks worst of all for Anna. If I could trade places with her, even for a little while, I would do it in a heartbeat.
Unfortunately, I doubt that Anna will be up for many playdates or visits until the radiation/chemotherapy portion is over. We just need to get through this time in the best way we know how.
I was just thinking that I'm having a hard time finding things for which to be thankful for tonight, but then we got our "explanation of benefits" from the insurance company. So please thank God for medical insurance. I formally take back any criticism I ever had of insurance companies; they exist for circumstances like ours.
Please pray for mental, emotional, spiritual, and physical strength for our whole family during the next few weeks; we really need it.
This sucks. This really, really sucks. Not just the cancer part, but everything. It's not fair. If I could get off this train and find a quiet hole in which to sleep for a few weeks, I would. But I can't.
Mostly, this sucks for Anna. I bet she wishes she could get off the ride, too. But she can't either.
A friend recently recommended a book called The Invisible Girls. I usually stay away from good fiction these days because I don't have the time to get sucked into a book. But this one was written by a cancer survivor and I thought it sounded interesting. So I got started reading it and couldn't put it down, but maybe that was a good thing.
I would highly recommend the book, and not just because of the cancer piece, although the author's experiences with her cancer treatments were eye-opening for me. Sarah Thebarge was diagnosed at age 27 with a very aggressive form of breast cancer and at one point, she underwent a series of treatments very similar to what Anna is experiencing. For an otherwise healthy adult who was very educated and who, at least at the start of her treatment, had a good support network, the radiation and chemotherapy were really rough. She was very angry, very frustrated, and very sad for a long time.
Anna is going through the same kind of treatment, but she does not have the life experience or maturity that an adult has. In addition, Anna is also undergoing some very intensive rehabilitation - the kind that pushes her as far as she can go, and then some, each and every day. The rehab itself would wipe out most adults.
And yet Anna is doing both of these things simultaneously.
It sucks.
It's not fair.
This morning Anna was very angry, and understandably so.
For those of you who know Anna better, some of the following may be surprising, but then again, it may not be. When Anna was a toddler and preschooler, her tantrums were very long and involved. We're talking about 30+ minutes of screaming, crying, and yelling. There was not much that would get her out of it. She was the kind of kid who would hold it all in until she just couldn't anymore, and then her pressure valve would blow. After watching Kate, and now Ethan, go through the toddler and preschool stages, we realize that Anna was certainly a different kid with different kinds of needs.
Anyway, we worked with Anna a lot on figuring out what strategies would help her deal with life. By the winter of her kindergarten year, she was doing great. In fact, I remember at the second conference with her kindergarten teacher, we all agreed that she had just seemed to "settle". And the start of first grade was great. Most people who see Anna and interact with her would never guess at the struggles we had with her.
Some of the strategies that have worked for Anna are routines, getting lots of outside time, lots of physical activity, having opportunities to play creatively, and also helping out around the home, especially by helping out with her younger brother - the same kinds of things that work for any kid. In fact, we decided that her consequences this year for misbehavior included lots of dusting and/or cleaning.
However, none of those coping strategies are really options for her right now. How do you help a kid deal with their anger and frustration in this kind of situation? (This is a rhetorical question; we're not looking for specific answers or advice. Please don't send us anything; we do not have the time or energy to sift through another layer.)
This morning was hard. The doctors and nurses are doing their best to be helpful, by suggesting a health/psych consult, or letting us know that often times kids on chemo/radiation end up taking mood stabilizers. One of the last things Anna needs right now is more medication. Besides, a mood stabilizer would take away the highs that Anna is feeling, as well as the lows. What she needs is to be able to feel the things she is feeling, know that it is okay to feel those emotions, and yet have a safe and healthy way to deal with and cope with those emotions.
We have always worked with our kids on communicating about their feelings. We want them to know that it is okay to be angry, sad, frustrated, happy, etc. But we want them to know that they have to be careful of what they do when they are angry and frustrated, that they need to make sure they are not hurting themselves or others with their actions when they are mad.
With the help of Anna's therapists, doctors, and nurses, we are working on ways for Anna to safely express her emotions. Hopefully we can find something that works.
On a more positive note, my mom told me that Anna was not as angry later in the day today as she was with me at the start of the day. However, all of our kids tend to save their most extreme emotions for Mom and Dad.
So this sucks. This really, really sucks. And it sucks worst of all for Anna. If I could trade places with her, even for a little while, I would do it in a heartbeat.
Unfortunately, I doubt that Anna will be up for many playdates or visits until the radiation/chemotherapy portion is over. We just need to get through this time in the best way we know how.
I was just thinking that I'm having a hard time finding things for which to be thankful for tonight, but then we got our "explanation of benefits" from the insurance company. So please thank God for medical insurance. I formally take back any criticism I ever had of insurance companies; they exist for circumstances like ours.
Please pray for mental, emotional, spiritual, and physical strength for our whole family during the next few weeks; we really need it.
Tuesday, March 25, 2014
Another week begins
I think we are getting tired of this. Being apart from one another, the added work and stress of everything, feeling disconnected from the rest of the world. I'm pretty sure that I have said this same thing once or twice before, but I also think I have the right to say it again.
I kind of feel like a teacher or parent during the last month of school; we just have to get through this time of craziness and chaos.
And yet, this is just the beginning. Sure, Anna only has ten more radiation and chemo treatments, but she still has another six months of chemo in addition to a long road of rehab.
One attitude that tends to help during these times of extreme weariness is remembering to find joy in the little moments. A smile from Anna, a kind word from Kate, silly giggles from Ethan. These moments help to balance out the tantrums from Anna, the fiestiness from Kate, and the toddler frustration from Ethan.
Still, we just want this whole experience to be behind us and be given the opportunity to find a way to adapt to our new life together. Matt and I have talked and when Anna's treatments are all done, we think we would like to live our life in a similar way to how we were living it before, just with modifications. We don't envision ourselves becoming involved in any childhood cancer causes, or pulling the "childhood cancer" card to obtain any special treatment. We just want to have a life that does not involve as much sad time for Anna at a hospital.
Anna is still tolerating everything fairly well. Today marks the end of the targeted radiation therapy. Anna still has 1/3 of her radiation left; this next phase of radiation is meant to get all of the cancer cells that can't be seen specifically on an MRI.
Today also marks the first full day that Anna has been having a small amount of her "feeds" again, in addition to the TPN. If her body continues to tolerate the feeds well, then the amount of TPN will slowly be lowered while the quantity of feeds will be increased.
Today the therapists brought in "the stander" to begin to adjust Anna's body to being in an upright position. The stander is like a stretcher that can be laid horizontal, vertical, or at any angle in between. It's actually a pretty cool, precise device designed specifically for its purpose. Because it has been almost two months since Anna has been standing, her internal processes (mainly the parts of her body responsible for blood pressure) will need get get used to her being upright.
Imagine how it feels after you've been sick for a day or two, when you finally are able to stand up again and walk around. Kind of woozy. Now take that feeling and multiply it many times. We're looking at baby steps again ... but baby steps in the right direction.
The postcards are coming in by the dozens, from all over the United States, and a few beyond. Thank you to those of you who have sent them; they bring joyful moments to our days in addition to being a conversation starter for the many people who come in and out of Anna's room each day :)
Time for prayers
Thanksgiving
Please give thanks for the opportunity for our family to have dinner together tonight in Anna's room. Kate and Ethan get a bit squirrelly towards the end, but it's nice to be all together sometimes for dinner.
Please give thanks that we are continuing to find the physical and emotional strength to somehow get through each day.
Pleaes thank God that we live as close as we do to an amazing children's hospital.
Please give thanks for the continuing superb care Anna is receiving.
Please thank God that Anna has been able to tolerate all of her treatments as well as she has.
Please continue to give thanks for all of the support our family is receiving.
Requests
Please pray for more restful nighttime sleep for Anna; she's been awake a lot at night recently.
Please continue to pray that Anna's treatments are 100% effective and that she experiences few side effects.
Please continue to pray for strength and wisdom for Matt, me, and any other caregivers for our kids.
Please pray that Anna's body is able to tolerate her feeds again.
Please pray that Anna's attitude during her therapy sessions improves; she hasn't been very positive with the therapists the last few days.
Thank you, as always, for your prayers and support ... and postcards, too :)
I kind of feel like a teacher or parent during the last month of school; we just have to get through this time of craziness and chaos.
And yet, this is just the beginning. Sure, Anna only has ten more radiation and chemo treatments, but she still has another six months of chemo in addition to a long road of rehab.
One attitude that tends to help during these times of extreme weariness is remembering to find joy in the little moments. A smile from Anna, a kind word from Kate, silly giggles from Ethan. These moments help to balance out the tantrums from Anna, the fiestiness from Kate, and the toddler frustration from Ethan.
Still, we just want this whole experience to be behind us and be given the opportunity to find a way to adapt to our new life together. Matt and I have talked and when Anna's treatments are all done, we think we would like to live our life in a similar way to how we were living it before, just with modifications. We don't envision ourselves becoming involved in any childhood cancer causes, or pulling the "childhood cancer" card to obtain any special treatment. We just want to have a life that does not involve as much sad time for Anna at a hospital.
Anna is still tolerating everything fairly well. Today marks the end of the targeted radiation therapy. Anna still has 1/3 of her radiation left; this next phase of radiation is meant to get all of the cancer cells that can't be seen specifically on an MRI.
Today also marks the first full day that Anna has been having a small amount of her "feeds" again, in addition to the TPN. If her body continues to tolerate the feeds well, then the amount of TPN will slowly be lowered while the quantity of feeds will be increased.
Today the therapists brought in "the stander" to begin to adjust Anna's body to being in an upright position. The stander is like a stretcher that can be laid horizontal, vertical, or at any angle in between. It's actually a pretty cool, precise device designed specifically for its purpose. Because it has been almost two months since Anna has been standing, her internal processes (mainly the parts of her body responsible for blood pressure) will need get get used to her being upright.
Imagine how it feels after you've been sick for a day or two, when you finally are able to stand up again and walk around. Kind of woozy. Now take that feeling and multiply it many times. We're looking at baby steps again ... but baby steps in the right direction.
The postcards are coming in by the dozens, from all over the United States, and a few beyond. Thank you to those of you who have sent them; they bring joyful moments to our days in addition to being a conversation starter for the many people who come in and out of Anna's room each day :)
Time for prayers
Thanksgiving
Please give thanks for the opportunity for our family to have dinner together tonight in Anna's room. Kate and Ethan get a bit squirrelly towards the end, but it's nice to be all together sometimes for dinner.
Please give thanks that we are continuing to find the physical and emotional strength to somehow get through each day.
Pleaes thank God that we live as close as we do to an amazing children's hospital.
Please give thanks for the continuing superb care Anna is receiving.
Please thank God that Anna has been able to tolerate all of her treatments as well as she has.
Please continue to give thanks for all of the support our family is receiving.
Requests
Please pray for more restful nighttime sleep for Anna; she's been awake a lot at night recently.
Please continue to pray that Anna's treatments are 100% effective and that she experiences few side effects.
Please continue to pray for strength and wisdom for Matt, me, and any other caregivers for our kids.
Please pray that Anna's body is able to tolerate her feeds again.
Please pray that Anna's attitude during her therapy sessions improves; she hasn't been very positive with the therapists the last few days.
Thank you, as always, for your prayers and support ... and postcards, too :)
Sunday, March 23, 2014
Second visit home
We picked Anna up after church today and headed home for the afternoon. Anna took a nap right when we got home, had some fun watching Kate and Matt goof off, and then she got in another nap in a real bed before we had to go back to the hospital.
In comparison to last weekend, Anna is doing much better, but she is quite tired out tonight. In fact, therapies tomorrow may seem like a relief to the kinds of "therapy" she was being subjected to during the car rides and her time at home.
Yesterday the emotions of the day were excitement, relief, and joy. Today the feelings were different as we started to get a picture of what our new normal may be. For awhile, at least, I think it will be similar to having an infant's schedule/temperament. Several shorter naps, not too much stimulation at any given time, limited outtings, etc.
But we can deal with that; we've done it a few times before. Although this time we didn't really sign up for the change in lifestyle; it just happened. We'll make it work for us and we think it will be easier and happier to have everyone at home together.
This week for Anna will be similar to the last few weeks. (What a relief it is to be able to write that!) Every day she will continue to have her chemotherapy and radiation in the early morning, and speech therapy and PT/OT in the middle of the day. She will have some visitors in the afternoons most days and opportunities to get out of her room. We are hopeful that she will continue to get stronger each day and that the treatments will continue to show their effectiveness as Anna regains some of her abilities.
Three changes are in store for Anna this week. First, she has only two more days of the targeted radiation treatment. During these, the radiation is directed very specifically to the places in her brain and spinal column that have obvious cancer spots. Starting on Wednesday, Anna will receive three days of radiation "boosts" during which her whole brain and spinal cord receive treatment to try and get rid of every last cancer cell. She will still need anesthesia during these days because her whole body needs to remain motionless. Beginning next Monday, Anna will receive seven treatments of radiation boosts to her whole brain, but not her spinal cord. These treatments will be much shorter and, depending on how Anna does during her second mask simulation, she may not require anesthesia.
After the radiation is done, Anna will have a six week "break" from treatment during which her body has a chance to heal. However, some of the short term radiation side effects don't actually peak until this break period. Once the six weeks is over, Anna will continue with six months of chemotherapy treatments. We do not yet have all of the details on how this will happen, but we do know that it should not be quite as intense as this initial treatment.
The second change for Anna this week has to do with her nutrition. Now that her gut and bottom have had a rest, a small amount of formula will be trickled through her ng-tube to see how everything on the inside reacts. Because the spinal radiation is continuing this week, I don't expect Anna's gut to be completely healed for awhile, but it would be good for her to be able to get some added nutrition via her digestive system. TPN is only safe for receiving "adequate" nutrition; it is not a safe way for someone to gain weight (which Anna needs to do).
The third change is that by the end of the week, Anna should be completely weaned off of all of the sedation medication that she was on when her body was on the ventilator. She is still on lots of medications, but it will be good to cross a few off of the list.
Time for prayers
Thanksgiving
Please thank God that Anna was able to come home two times this weekend!
Please praise God that we had two happy days with our whole family in our home!
Please thank God that the treatments seem to be working on destroying Anna's cancer.
Please give thanks for our amazing support network in our church, community, and here at the hospital.
Please thank God for the wonderful nurses who have been taking care of Anna here on P4.
Please give thanks that Anna's muscles are not as sore.
Requests
Please continue to pray for restful sleep for each member of our family.
Please continue to pray for balance in Matt's life this week.
Please continue to pray for strength and wisdom for Matt and me.
Please continue to pray that Anna's treatments are 100% effective and that she experiences minimal side effects.
Please pray that Anna's gut has healed enough to be able to absorb some nutrients again.
Please continue to pray for Anna's care staff here at the hospital.
Please pray for our church family; our congregation has experiences its fair share of difficulties and challenges (brain cancers and broken backs among other things). Please pray that we stay grounded in our faith so that we can support one another and reach out to those around us.
Thank you, as always, for your prayers, care, and support.
In comparison to last weekend, Anna is doing much better, but she is quite tired out tonight. In fact, therapies tomorrow may seem like a relief to the kinds of "therapy" she was being subjected to during the car rides and her time at home.
Yesterday the emotions of the day were excitement, relief, and joy. Today the feelings were different as we started to get a picture of what our new normal may be. For awhile, at least, I think it will be similar to having an infant's schedule/temperament. Several shorter naps, not too much stimulation at any given time, limited outtings, etc.
But we can deal with that; we've done it a few times before. Although this time we didn't really sign up for the change in lifestyle; it just happened. We'll make it work for us and we think it will be easier and happier to have everyone at home together.
This week for Anna will be similar to the last few weeks. (What a relief it is to be able to write that!) Every day she will continue to have her chemotherapy and radiation in the early morning, and speech therapy and PT/OT in the middle of the day. She will have some visitors in the afternoons most days and opportunities to get out of her room. We are hopeful that she will continue to get stronger each day and that the treatments will continue to show their effectiveness as Anna regains some of her abilities.
Three changes are in store for Anna this week. First, she has only two more days of the targeted radiation treatment. During these, the radiation is directed very specifically to the places in her brain and spinal column that have obvious cancer spots. Starting on Wednesday, Anna will receive three days of radiation "boosts" during which her whole brain and spinal cord receive treatment to try and get rid of every last cancer cell. She will still need anesthesia during these days because her whole body needs to remain motionless. Beginning next Monday, Anna will receive seven treatments of radiation boosts to her whole brain, but not her spinal cord. These treatments will be much shorter and, depending on how Anna does during her second mask simulation, she may not require anesthesia.
After the radiation is done, Anna will have a six week "break" from treatment during which her body has a chance to heal. However, some of the short term radiation side effects don't actually peak until this break period. Once the six weeks is over, Anna will continue with six months of chemotherapy treatments. We do not yet have all of the details on how this will happen, but we do know that it should not be quite as intense as this initial treatment.
The second change for Anna this week has to do with her nutrition. Now that her gut and bottom have had a rest, a small amount of formula will be trickled through her ng-tube to see how everything on the inside reacts. Because the spinal radiation is continuing this week, I don't expect Anna's gut to be completely healed for awhile, but it would be good for her to be able to get some added nutrition via her digestive system. TPN is only safe for receiving "adequate" nutrition; it is not a safe way for someone to gain weight (which Anna needs to do).
The third change is that by the end of the week, Anna should be completely weaned off of all of the sedation medication that she was on when her body was on the ventilator. She is still on lots of medications, but it will be good to cross a few off of the list.
Time for prayers
Thanksgiving
Please thank God that Anna was able to come home two times this weekend!
Please praise God that we had two happy days with our whole family in our home!
Please thank God that the treatments seem to be working on destroying Anna's cancer.
Please give thanks for our amazing support network in our church, community, and here at the hospital.
Please thank God for the wonderful nurses who have been taking care of Anna here on P4.
Please give thanks that Anna's muscles are not as sore.
Requests
Please continue to pray for restful sleep for each member of our family.
Please continue to pray for balance in Matt's life this week.
Please continue to pray for strength and wisdom for Matt and me.
Please continue to pray that Anna's treatments are 100% effective and that she experiences minimal side effects.
Please pray that Anna's gut has healed enough to be able to absorb some nutrients again.
Please continue to pray for Anna's care staff here at the hospital.
Please pray for our church family; our congregation has experiences its fair share of difficulties and challenges (brain cancers and broken backs among other things). Please pray that we stay grounded in our faith so that we can support one another and reach out to those around us.
Thank you, as always, for your prayers, care, and support.
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