The past
The P4 Unit at the hospital has 20 or so rooms and Anna has been in many, but not all, of them. A few of these rooms have some pretty powerful memories for our family. For example, room 11 is the very first room she was in at the hospital. She was only there for about 40 minutes; it's where we first met one of her primary nurses and the neurosurgeon. Room 19 is where she moved when she was first released from the PICU. She was there for 4 days. It's where we met her other two primary nurses and then where things deteriorated for her before anyone realized how fast her tumor was growing/cancer was spreading. Room 29 is where she spent the most time back in March and April, but it's also where her shunt infection presented itself.
Anna has been back in each one of these rooms since those days and we are making some different, better memories with each hospital stay. I am amazed, however, at how each of her nurses remembers the powerful moments almost as much as we do. After spending as much time on the unit as we have, we realize that those kinds of events do not occur every day and they were memory makers even for the staff.
The present
Anna's hospital stay this time around was relatively uneventful. The P4 staff and I work together very well by this point to get done what needs to get done in a safe and effective manner. Our goal this time was for Anna to be discharged by rushhour on Wednesday; it worked. In the time I was there with Anna, I was able to touch base with many of the hospital personnel with whom we worked during Anna's long stay about a variety of matters; I had to wear different hats than what I am used to wearing here at home.
While at the hospital, I met another family whose daughter was recently diagnosed with a different kind of childhood cancer. In speaking with the mom, she asked me "Aren't you afraid of the chemo?" I looked at Anna and asked her the same question. Her response was "No! I love my chemo visits!"
True, she looks forward to them, almost to a fault. She woke up at 4:30 a.m. on Tuesday morning and couldn't go back to sleep. Her nap at the hospital on Tuesday was short; she didn't sleep much on Tuesday night and Wednesday's nap was pretty intermittent. By Wednesday afternoon she was tired, emotional, and complaining of a headache. If only I could deal with these behaviors as the parent of a normally healthy 7-year-old, but instead I worry about things like stress-dosing, or hydrocephalus (needing a shunt). So her nurse and I got her some Tylenol, and by the time Anna was home, she was feeling much better. But still ...
So what was my answer to this other mom? Am I afraid of Anna's chemo? No, not anymore. I told her I was more afraid of the surgeries. (Her daughter had just had surgery. Not brain surgery, but still major surgery.) The surgeons tell you that kids are resillient and recover from surgery, but they are not the ones who are dealing with a patient hour by hour, day by day for weeks, months, even years, as the child recovers. Your child goes in one day seemingly normal for a surgery and comes out the next a completely different person.
Like Anna, I'm not afraid of the chemotherapy visits. Anna doesn't throw up with her chemotherapy; the anti-nausea medications are just as powerful as the chemotherapy drugs. When and if she vomits, it's for other reasons. Besides, she's gained weight since she was discharged from the hospital, and she's gotten lots stronger. The chemo itself doesn't mess with her too much, at least not that we can visibly see. This time around our family, Anna included, was fighting a mild cold virus and Anna was still cleared to receive her chemo. We don't do too much differently in terms of basic hygiene and cleaning than we did before Anna's chemo began. In fact, we probably do less cleaning because we have less time and energy, although we wash our hands with soap and water more often.
What we are afraid of is the neutropenic stage, because we have no control over what happens during that particular time. Those 24-48 hours (in Anna's case, other kids are different) are scary, but there is nothing we can do to prevent the microscopic bacteria that are already in and around Anna's body from doing the damage. In fact, the "bugs" may already be there waiting for just the right time.
However, we know when the time comes (day 8-10 of chemo cycle); we know what to watch for (fever); we know who to call (not ghostbusters); and we know the doctors have lots of tools in their toolbox (antibiotics) to help kids on chemo get through that time. Plus, God is on our side. He's seen Anna, and us, through a lot worse. We just hope she can make it through another round or two (or three or four) of the neutropenic stage without developing a fever; life is just a bit easier for us all, especially Anna, that way.
The Future
We try not to worry too much about the future, but I'm a planner so I have to plan some. I try to focus on the current day, but also look towards the week, then if I have the time and energy, look ahead to the coming month and maybe, just maybe, look a little further than that.
A few weeks ago I thought about September and the coming school year and just about panicked. (Leah will be student teaching in the fall so there is a big sad face on our calendar on August 22, her last day.) But I'm not panicking anymore. Things seem to be falling into place. Of course they would; God is on our side.
All of the powers that be at the hospital, the home health agency, the school, and the insurance company, seem to agree that Anna can go to school in the mornings, come home to take a nap, and then receive her home health therapies in the afternoon, at least while she is continuing to attend school "intermittently" (a.k.a. receiving treatments). Once her treatments end sometime in October or November (or December, depending on how it all goes), things will change. Of course, her attendance at school is dependent upon her not being in-patient at the hospital and not having one of her many doctors appointments.
Kate will be in full day kindergarten starting after Labor Day; it will be a transition, but we know she will thrive once she adjusts.
On Wednesday, Ethan and Kate spent the day with a family in McFarland who has agreed to watch them as needed (on chemo days, transfusion days, in-patient stays, etc.) Kate LOVES spending time with her preschool buddy and his family, and it sounds like Ethan did well with his first long day at their home.
Still, we have to get through tomorrow, and then this next week's neutropenic/low blood counts time, and then the month of August, and then the transitions of September, and then the rest of 2014, and then we'll see what next year holds.
Time for prayers
Thanksgiving
Please thank God that this round of chemotherapy's hospital stay went much, much more smoothly than last time.
Please give thanks that Kate and Ethan's first full day at our family friend's home was successful.
Please thank God that, even though Anna's chemo treatment coincided with a busy time at work for Matt, the design review he led yesterday went very well.
Please continue to give thanks for all of the support our family is receiving, both professionally and beyond.
Please continue to give thanks for the amazingly cheerful and grateful spirit that Anna has each day.
Requests
Please pray that this cold we have going through passes completely before Anna's counts drop next week.
Please pray that Anna makes it through her neutropenic stage with no fever this time.
Please ask God to continue to bless our family with the amazing support we are receiving.
Please pray that God will bless the family we met at the hospital with a similar kind of support.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all those who are working with and for our family.
Thanks, as always, for everything.
Thursday, July 31, 2014
Friday, July 25, 2014
Therapy
Anna is currently receiving in-home physical and occupational therapy. That means three times a week her physical therapist comes to our home for an hour at a time and he works/plays with her (while I ask him questions and learn from him), and once or twice a week her occupational therapist comes to our home to do the same thing (while I do the same thing). Anna qualifies for in-home therapies instead of out-patient therapy because of the intensity of her rehab needs.
Side note, on her initial discharge in May, Anna would have qualified for speech therapy as well. However, the home health providers we use do not currently have in-home speech therapy. Incidentally, Anna's maternal grandmother is a speech therapist and so I have picked up on a few speech therapy techniques in the past few years from my talented mother :) Also, Anna is very motivated to have her speech understood here at home. Needless to say, she is much more understandable now than she was three months ago.
Back to the initial discussion, at some point Anna will transition to out-patient therapy. I do not look forward to that day simply because it means we will have to travel somewhere else for Anna to receive her therapy; that somewhere else will most likely not be "just down the road" from our house, but across town. However, it will also mean that she will have graduated past the point of needing such intensive therapies as she is currently receiving.
Anyway, Anna likes her therapy time and her therapists. Kate and Ethan like the therapists. Anna's rehab seems to be going well, especially considering that she is still undergoing her chemo treatments.
In the last few months, I've learned a bit more about what has happened to Anna's nervous system. Her system was not just damaged by the cancer, but also by the radiation, and the chemotherapy (which is still going on), and by the shunt infection. None of this damage is permanent, necessarily, but it will take time to heal.
One of the kids who was at our house over the weekend was trying to put Anna's condition in context for herself and she compared it to a stroke. I told her that there were a lot of similarities in how someone heals and recovers from a stroke and how Anna is healing. However, Anna's situation is different, because nothing in Anna's nervous system was permanently damaged, and also because Anna is a kid. Kid's brains are designed to grow, and to change, and to learn new things. They are much more adaptable than an adult's brain.
So without further adieu ... here are a few of Anna's "friends" that are helping her in her rehab therapy.
What about Matt's therapy? He's a late night project guy. He always stays up later than the rest of us doing something ... projects, movies, etc. So, at the beginning he did projects for Anna, first the basic survival stuff, then the swingset, and modifying Stanley. Then he got a radio-controlled truck and spent a few evenings modifying it to his liking. Now he's got some extra work from work to do :( And he's got a cold. But I'm trying to convince him to take a week off of work before school starts so we can have a stay-cation. Hopefully he does ;)
So far so good for the chemo scheduled for this coming week. But, plans can change, as we have learned.
Time for prayers
Thanksgiving
Please give thanks for the beautiful summer weather that has allowed us to spend time indoors and outdoors whenever we have wanted.
Please thank God for the continued support we are receiving from friends, family, medical personal, etc.
Please give thanks for the flexibility in everyone's schedules who are helping us, those who are paid to and those who are just helping out because they are kind.
Please thank God for the continued strength and stamina of the members of our family, in spite of the mild colds that have gone through.
Requests
Please pray that this next round of chemo goes more smoothly than the last, in terms of timing and fevers.
Please ask God to continue to give us patience and flexibility as we enter the next round.
Please continue to pray for all those who are working with and for our family.
Please continue to pray for strength, wisdom and stamina for all of us; we've still got a long way to go.
Please continue to pray that Anna's treatments are 100% effective.
Thanks, as always, for everything.
Side note, on her initial discharge in May, Anna would have qualified for speech therapy as well. However, the home health providers we use do not currently have in-home speech therapy. Incidentally, Anna's maternal grandmother is a speech therapist and so I have picked up on a few speech therapy techniques in the past few years from my talented mother :) Also, Anna is very motivated to have her speech understood here at home. Needless to say, she is much more understandable now than she was three months ago.
Back to the initial discussion, at some point Anna will transition to out-patient therapy. I do not look forward to that day simply because it means we will have to travel somewhere else for Anna to receive her therapy; that somewhere else will most likely not be "just down the road" from our house, but across town. However, it will also mean that she will have graduated past the point of needing such intensive therapies as she is currently receiving.
Anyway, Anna likes her therapy time and her therapists. Kate and Ethan like the therapists. Anna's rehab seems to be going well, especially considering that she is still undergoing her chemo treatments.
In the last few months, I've learned a bit more about what has happened to Anna's nervous system. Her system was not just damaged by the cancer, but also by the radiation, and the chemotherapy (which is still going on), and by the shunt infection. None of this damage is permanent, necessarily, but it will take time to heal.
One of the kids who was at our house over the weekend was trying to put Anna's condition in context for herself and she compared it to a stroke. I told her that there were a lot of similarities in how someone heals and recovers from a stroke and how Anna is healing. However, Anna's situation is different, because nothing in Anna's nervous system was permanently damaged, and also because Anna is a kid. Kid's brains are designed to grow, and to change, and to learn new things. They are much more adaptable than an adult's brain.
So without further adieu ... here are a few of Anna's "friends" that are helping her in her rehab therapy.
Meet Stanley the Stander.
Stanley joined our family several weeks ago. He's kind of an old school basic stander and kind of looks like a medieval torture device, but will work for our present needs. We found him at a local rehab resale shop, and he needed a little modification (including a worktable/tray that Matt designed and made one evening in the garage). The eyes, mouth, and mustache were also Matt's addition. Stanley helps Anna's leg muscles, bones, joints, etc. get stronger before they can be prepared for such skills as walking. Stanley will be finding a new home soon; a new, specially fitted stander was ordered for Anna recently and should arrive at the end of August.
Meet Sally the Swing
Sally is actually the middle blue one, just for Anna; Ethan's is the blue one on the right. Last summer Matt and I dreamed up "The Tower" (on the right) for our backyard; Matt designed it; and he and my dad built it. It was always meant to be the first phase of a multiple year project, growing as our kids grew. This year was going to include phase two, with the swingset addition. When Anna's therapist said that swinging would be great therapy for her vestibular system, we knew we had to continue with the second phase. So, with the help of some friends, and Matt's amazing engineering skills, phase two was completed a few weeks ago. It's awesome, but I've told Matt that the footbridge across the top will need to wait until Ethan is a little older; he learned how to climb the tower last weekend and I'm a little hesitant to introduce any more for our toddler.
Meet Creepy the Creeper
Well, maybe Creepy isn't his name; we don't really have anything more appropriate for him yet. If you imagine a typical 7-year-old girl on the playground, you would probably see her running around or spinning in circles or jumping, if not all the time, at least some of the time. That girl's vestibular system is getting a lot of input and practice a lot of the time. Not Anna's. Matt's creeper from the garage not only gives Anna some good leg and ab workouts by pushing off of someone's hands and moving across the floor, but we can also spin her (very, very slowly) to start giving her inner ear a bit of practice again. When her g-tube goes from being a peg to a button (for those of you who know the difference) and tummy time is more comfortable for her, then she can use this like a scooter, too.
Meet Candy the Commode
Disclamer ... We have tried our best to preserve Anna's dignity throughout this whole process. Most, if not all, of Anna's peers do not know that she wears diapers at this time. We hope that the adults reading this blog continue to be discreet with what you choose to share with your children. Still, this is the specialty commode that resides in our bedroom; we always wanted a master bathroom :) Most days Anna uses the commode successfully unless she is fatigued or we have non-therapy related guests. She is so glad to finally have something appropriate she can use when she wants to; this piece of equipment was a long time coming!
Not Pictured:
Willy the Wheelchair - Willy is a rental and will be replaced in late August by a sleeker version. Willy's lights and ribbons will need to be unhooked before we return him. He has been well-used and well-loved, but we will certainly enjoy a lighter weight, easier to handle version.
Matt the Mat - Not to be confused with Matt, the Dad. Matt the Mat is a basic gym mat who is used for therapy and other play. Ethan often walks over to it and says "Mat out!"
Ivy the IV Pole - Ivy holds Anna's feeding pump, to which she is hooked up several hours of the day for her formula and water.
Sleeping Boots and Butterfly Boots - Anna has not stood independently since February 3. Her feet and ankles need lots of support and help. She now has a couple of specially designed orthotic inserts and boots for sleeping instead of the big fluffy ones she had at the hospital.
And what about therapy for Mom and Dad? Well, my garden is my therapy; it always has been, and this year is no different.
My garden is healthy for me on many levels. For example, when I am sad or mad at God again (it still happens), it feels really, really good to go out to my garden and pull really, really hard on some pesky weeds. Or haul a few heavy loads of leaf mulch to just the right place. And then when I feel like I have no control over anything, I can go out to my garden and feel like I have just a smidgen of control over a small space of ground.
And then this time of year it always amazes me what God can do. He can take something as small as a broccoli seed and in a few short months can turn it into something as huge as a 12-15 inch head of broccoli that our whole family thoroughly enjoys eating. Or He starts with a tiny tomato seed and soon it becomes a monstrous plant laden with tomatoes that our kids are excited to snitch from the garden.
Plus, a lot of life lessons can be learned from a fruit and vegetable garden. My children have been taught so many things, about plants and animals and life beyond, by being alongside me during the growing season. I think I learned some of those same lessons from my parents, who probably learned them from their families.
So another big thank you goes out to those of you who have allowed me this summer to have my garden, by helping me directly and indirectly. I think it would have been harder for me this year to not have a garden. I told Matt in May that if we ended up with anything in the freezer this year, we'd be doing pretty well. Thanks to some pretty awesome helpers (including Kate and Leah!), our freezers are almost full already, and we still have corn and tomatoes to come, plus a lot of fruit growing on the apple trees and grape vines.
What about Matt's therapy? He's a late night project guy. He always stays up later than the rest of us doing something ... projects, movies, etc. So, at the beginning he did projects for Anna, first the basic survival stuff, then the swingset, and modifying Stanley. Then he got a radio-controlled truck and spent a few evenings modifying it to his liking. Now he's got some extra work from work to do :( And he's got a cold. But I'm trying to convince him to take a week off of work before school starts so we can have a stay-cation. Hopefully he does ;)
So far so good for the chemo scheduled for this coming week. But, plans can change, as we have learned.
Time for prayers
Thanksgiving
Please give thanks for the beautiful summer weather that has allowed us to spend time indoors and outdoors whenever we have wanted.
Please thank God for the continued support we are receiving from friends, family, medical personal, etc.
Please give thanks for the flexibility in everyone's schedules who are helping us, those who are paid to and those who are just helping out because they are kind.
Please thank God for the continued strength and stamina of the members of our family, in spite of the mild colds that have gone through.
Requests
Please pray that this next round of chemo goes more smoothly than the last, in terms of timing and fevers.
Please ask God to continue to give us patience and flexibility as we enter the next round.
Please continue to pray for all those who are working with and for our family.
Please continue to pray for strength, wisdom and stamina for all of us; we've still got a long way to go.
Please continue to pray that Anna's treatments are 100% effective.
Thanks, as always, for everything.
Sunday, July 20, 2014
Busy week
This week was a busy week, even by our standards. When Leah looked ahead on the calendar a few weeks back and saw everything written down for this past Thursday, even she made a comment as to the number of visitors scheduled for that day ... and then there were a few last minute additions.
But we made it through, although I think I may have learned a few lessons about how much is too much, especially for this particular momma.
Medically speaking, Anna is recovered from her infection. Today is the last day of her antibiotics.
Tuesday was a somewhat eventful medical day for her, however, because there was a bit of "miscommunication between the teams" at the hospital about her need for stress dosing. Since she has been on steroids for so long, her adrenal glands have shut down. That means that when her body undergoes some kind of physical stress (like an infection) she needs extra steroids, or she feels extra cruddy. If it gets bad enough, her life can be threatened.
Well, it didn't get that bad, but by Tuesday she was still feeling really cruddy even though the infection was pretty well cleared up. I asked the stress dosing question again, and sure enough, she needed it. This past Friday, however, she began her very long, slow taper from her steroids. In about three months she may (or may not, depending on how things go) no longer be taking a daily steroid.
On a side note, one of our visitors on Thursday was a home health nurse; we hadn't met this one before Thursday. I had to explain a situation I won't go into on this blog because there as some aspects of Anna's care we'd like to keep private. At the end of my explanation, the nurse looked at me and said, "Do you have a medical background?" I said, "No, but we've learned a lot in the past six months."
We're trying our best to balance the medical needs, rehab needs, social needs, educational needs, family needs, personal needs, and everything else, but it's a lot. Saturday morning we had some friends come over to help spread mulch, pull weeds, hang out, play with the kids, pick, snap, and freeze green beans. When they arrived, two families brought meals ... one to put in the freezer, one for dinner that night; what a relief.
This coming week looks to be less busy. Anna should be in a better place; the week just prior to her chemo is typically "easier" for her than others. However, things are just going to get harder for her as her treatments continue; her body is going to get more and more worn down until the treatments stop. Her next round is scheduled for July 29th and 30th, with another round planned right before school starts. The next four months are also going to be tough, for all of us.
Time for prayers
Thanksgiving
Please give thanks that Anna has healed from her infection.
Please thank God for all of our friends and helpers who are willing and able to come to our home and help us this summer.
Please give thanks that my parents were able to come and spend a few days picking produce and spending time with their grandchildren.
Please thank God for the beautiful summer weather that has caused our garden to produce lots and lots of extra food this year.
Requests
Please pray that Anna keeps up her strength, stamina, and positive attitude as she continues to go through her treatments.
Please ask God to guard and protect our physical bodies; the past six months are starting to take their toll on the 30-something bodies of these parents :)
Please pray that we continue to find the strength and wisdom to make the best decisions of how to manage our time and energy in the coming weeks and months.
Thank you, as always, for all of your help, support, and prayers.
I haven't closed with a song in awhile, but this is one that Anna learned at Camp Luther a few summers back when she went to grandkids' camp; it's also one that I learned during my college days.
Lions by Lost and Found
Oh them lions they can eat my body
But they can't swallow my soul
They keep on trying to crash my party
But they can't get control
No way, baby.
Satan prowls like a roaring lion,
Seeking whom he will devour.
Yet I know that though he keeps on trying,
He's no match for Jesus' power.
Even demons believe and tremble,
But they try to ruin your life the same.
Yet I know that when the saints assemble,
Satan runs at every sign of Jesus' name.
Oh them lions they can eat my body
But they can't swallow my soul
They keep on trying to crash my party
But they can't get control
No way, baby.
But we made it through, although I think I may have learned a few lessons about how much is too much, especially for this particular momma.
Medically speaking, Anna is recovered from her infection. Today is the last day of her antibiotics.
Tuesday was a somewhat eventful medical day for her, however, because there was a bit of "miscommunication between the teams" at the hospital about her need for stress dosing. Since she has been on steroids for so long, her adrenal glands have shut down. That means that when her body undergoes some kind of physical stress (like an infection) she needs extra steroids, or she feels extra cruddy. If it gets bad enough, her life can be threatened.
Well, it didn't get that bad, but by Tuesday she was still feeling really cruddy even though the infection was pretty well cleared up. I asked the stress dosing question again, and sure enough, she needed it. This past Friday, however, she began her very long, slow taper from her steroids. In about three months she may (or may not, depending on how things go) no longer be taking a daily steroid.
On a side note, one of our visitors on Thursday was a home health nurse; we hadn't met this one before Thursday. I had to explain a situation I won't go into on this blog because there as some aspects of Anna's care we'd like to keep private. At the end of my explanation, the nurse looked at me and said, "Do you have a medical background?" I said, "No, but we've learned a lot in the past six months."
We're trying our best to balance the medical needs, rehab needs, social needs, educational needs, family needs, personal needs, and everything else, but it's a lot. Saturday morning we had some friends come over to help spread mulch, pull weeds, hang out, play with the kids, pick, snap, and freeze green beans. When they arrived, two families brought meals ... one to put in the freezer, one for dinner that night; what a relief.
This coming week looks to be less busy. Anna should be in a better place; the week just prior to her chemo is typically "easier" for her than others. However, things are just going to get harder for her as her treatments continue; her body is going to get more and more worn down until the treatments stop. Her next round is scheduled for July 29th and 30th, with another round planned right before school starts. The next four months are also going to be tough, for all of us.
Time for prayers
Thanksgiving
Please give thanks that Anna has healed from her infection.
Please thank God for all of our friends and helpers who are willing and able to come to our home and help us this summer.
Please give thanks that my parents were able to come and spend a few days picking produce and spending time with their grandchildren.
Please thank God for the beautiful summer weather that has caused our garden to produce lots and lots of extra food this year.
Requests
Please pray that Anna keeps up her strength, stamina, and positive attitude as she continues to go through her treatments.
Please ask God to guard and protect our physical bodies; the past six months are starting to take their toll on the 30-something bodies of these parents :)
Please pray that we continue to find the strength and wisdom to make the best decisions of how to manage our time and energy in the coming weeks and months.
Thank you, as always, for all of your help, support, and prayers.
I haven't closed with a song in awhile, but this is one that Anna learned at Camp Luther a few summers back when she went to grandkids' camp; it's also one that I learned during my college days.
Lions by Lost and Found
Oh them lions they can eat my body
But they can't swallow my soul
They keep on trying to crash my party
But they can't get control
No way, baby.
Satan prowls like a roaring lion,
Seeking whom he will devour.
Yet I know that though he keeps on trying,
He's no match for Jesus' power.
Even demons believe and tremble,
But they try to ruin your life the same.
Yet I know that when the saints assemble,
Satan runs at every sign of Jesus' name.
Oh them lions they can eat my body
But they can't swallow my soul
They keep on trying to crash my party
But they can't get control
No way, baby.
Sunday, July 13, 2014
Home again
Anna was discharged today from the hospital after recovering from her infection. After a bit of waiting and wondering, it turns out her g-tube site became infected as she became neutropenic. Apparently this is not uncommon for kids in her particular situation; however, it took a few days to speak with a doctor who had the right kind of experience to share that information with us. Even within the world of pediatric hematology/oncology, there are a lot of specialties, and brain cancer is just one of them.
G-tube site infections makes sense, though, if you think about it. If there is any teeny, tiny kind of opening in the site that is not completely healed by the time a person's body reaches the neutropenic stage, the bacteria that normally flourishes in your gut can get through pretty easily into the rest of the body. When a body has zero white blood cells to fight off the bacteria, the bacteria multiply uncontrollably.
Here are a few good things about this hospital stay, though ... we're always looking for the positives.
-Kate and Ethan were able to come to the hospital for a visit on Saturday; they haven't been back to the hospital since May.
-Anna is continuing to make progress on the schoolwork she missed during the second half of first grade. Her reading is improving and she loves, loves, loves her math. Maybe that's because both her mom and her grandpa are/were math teachers :)
-We learned there was nothing wrong with the hardware or placement of Anna's g-tube.
-Some of the general surgery team learned a bit about the hematology/oncology side of things, mainly that you don't give a hematology/oncology kid on chemo a day or two to see how their body reacts to a possible infection.
-We reconnected with familiar P4 nurses we haven't seen in a few months, and met some new ones; they're all great.
-Everyone got to see how fast and vigorously Anna's white blood cell counts bounced back this time around.
-Anna got her blood transfusion on P4 instead of in day treatment.
-Matt took the time to clean the house (very well, I might add!) on Saturday while Anna and I were away at the hospital.
-I took the opportunity to take a nap with Anna on Saturday at the hospital.
-Anna is taking a nap at home today, thanks to the efforts of the staff on P4 to get us home by noon.
We have this afternoon to try and recharge a little before gearing up for the week ahead. Maybe, just maybe, we won't be heading back to the hospital or clinic again until Anna's next round of chemo on the 29th of July.
Thanks for all of the thoughts and prayers the last few days.
G-tube site infections makes sense, though, if you think about it. If there is any teeny, tiny kind of opening in the site that is not completely healed by the time a person's body reaches the neutropenic stage, the bacteria that normally flourishes in your gut can get through pretty easily into the rest of the body. When a body has zero white blood cells to fight off the bacteria, the bacteria multiply uncontrollably.
Here are a few good things about this hospital stay, though ... we're always looking for the positives.
-Kate and Ethan were able to come to the hospital for a visit on Saturday; they haven't been back to the hospital since May.
-Anna is continuing to make progress on the schoolwork she missed during the second half of first grade. Her reading is improving and she loves, loves, loves her math. Maybe that's because both her mom and her grandpa are/were math teachers :)
-We learned there was nothing wrong with the hardware or placement of Anna's g-tube.
-Some of the general surgery team learned a bit about the hematology/oncology side of things, mainly that you don't give a hematology/oncology kid on chemo a day or two to see how their body reacts to a possible infection.
-We reconnected with familiar P4 nurses we haven't seen in a few months, and met some new ones; they're all great.
-Everyone got to see how fast and vigorously Anna's white blood cell counts bounced back this time around.
-Anna got her blood transfusion on P4 instead of in day treatment.
-Matt took the time to clean the house (very well, I might add!) on Saturday while Anna and I were away at the hospital.
-I took the opportunity to take a nap with Anna on Saturday at the hospital.
-Anna is taking a nap at home today, thanks to the efforts of the staff on P4 to get us home by noon.
We have this afternoon to try and recharge a little before gearing up for the week ahead. Maybe, just maybe, we won't be heading back to the hospital or clinic again until Anna's next round of chemo on the 29th of July.
Thanks for all of the thoughts and prayers the last few days.
Friday, July 11, 2014
Neutropenic Fever
Anna was admitted to the hospital yesterday afternoon with a neutropenic fever. We knew her blood counts were on the way down so we were keeping an close eye on her temperature and other symptoms. When she woke up yesterday morning complaining about pain by her g-tube site and a temperature of 99.1, we thought a trip to the hospital sometime during the day was a possibility, even though she perked up quite a bit in the morning.
I won't go into all of the details of the day, but Anna's primary oncologist knew that Anna was probably neutropenic because was on day 8 of her chemo cycle and, since her temperature had hit the 100.4 threshold in the afternoon, she made the decision to have Anna admitted to the hospital. When Anna's blood work came back in the evening, her neutropenia was confirmed as well as her anemia. She got her blood transfusion last night and was started on antibiotics right away. The source of the infection is still a mystery, and we may never know, but we're trying to get to the bottom of the g-tube site pain.
Anna will stay admitted until she is fever free and/or her neutropenia goes away. As of this morning, her white blood cell count is already on the rise, although very slightly. The surgery team is trying to figure out if there is anything wrong with her g-tube site using the tools available to them.
When Anna is anemic, she is nauseous, grumpy, and emotional. She was nervous and anxious yesterday afternoon about the things that were happening, which is very abnormal for our little girl these days. In calming her down, I was reassuring her that there are much worse things that could be happening. In fact, much worse things have happened, and we have all come through to the other side. We'll make it through to the other side of this as well. A few days in the hospital isn't going to hurt anyone in our family ... not anymore. At least it's not a shunt infection ... at least it's not a brain tumor ... at least it's not going to be a three month hospital stay :)
Time for prayers
Thanksgiving
Please give thanks that we have the confidence and ability to be Anna's medical advocates these days.
Please give thanks for our home health nurse who showed up at just the right time yesterday afternoon.
Please thank God that Leah is willing and able to be extremely flexible in working for our family.
Please thank God that this neutropenic fever does not appear to be too terribly serious.
Please give thanks that one of Anna's primary nurses was working yesterday when we arrived at the hospital.
Requests
Please pray that we can get to the bottom of this g-tube pain sooner rather than later.
Please pray that the problem can be resolved quickly and with relatively little pain.
Please pray that this hospital stay is a short one.
Please pray that we can continue to find the positives in experiences like this.
Thanks for the continued support.
I won't go into all of the details of the day, but Anna's primary oncologist knew that Anna was probably neutropenic because was on day 8 of her chemo cycle and, since her temperature had hit the 100.4 threshold in the afternoon, she made the decision to have Anna admitted to the hospital. When Anna's blood work came back in the evening, her neutropenia was confirmed as well as her anemia. She got her blood transfusion last night and was started on antibiotics right away. The source of the infection is still a mystery, and we may never know, but we're trying to get to the bottom of the g-tube site pain.
Anna will stay admitted until she is fever free and/or her neutropenia goes away. As of this morning, her white blood cell count is already on the rise, although very slightly. The surgery team is trying to figure out if there is anything wrong with her g-tube site using the tools available to them.
When Anna is anemic, she is nauseous, grumpy, and emotional. She was nervous and anxious yesterday afternoon about the things that were happening, which is very abnormal for our little girl these days. In calming her down, I was reassuring her that there are much worse things that could be happening. In fact, much worse things have happened, and we have all come through to the other side. We'll make it through to the other side of this as well. A few days in the hospital isn't going to hurt anyone in our family ... not anymore. At least it's not a shunt infection ... at least it's not a brain tumor ... at least it's not going to be a three month hospital stay :)
Time for prayers
Thanksgiving
Please give thanks that we have the confidence and ability to be Anna's medical advocates these days.
Please give thanks for our home health nurse who showed up at just the right time yesterday afternoon.
Please thank God that Leah is willing and able to be extremely flexible in working for our family.
Please thank God that this neutropenic fever does not appear to be too terribly serious.
Please give thanks that one of Anna's primary nurses was working yesterday when we arrived at the hospital.
Requests
Please pray that we can get to the bottom of this g-tube pain sooner rather than later.
Please pray that the problem can be resolved quickly and with relatively little pain.
Please pray that this hospital stay is a short one.
Please pray that we can continue to find the positives in experiences like this.
Thanks for the continued support.
Wednesday, July 9, 2014
Stories to remember
In the midst of all of this, I have to document Ethan's phrases. They change so fast and my brain is so full of everything else that if I don't write them down I won't remember them, and I really want to years from now.
We didn't go see any fireworks for the 4th of July, but Matt picked up some firecrackers to do in the backyard. Kate and Ethan enjoyed them a lot.
Ethan's word for smoke bomb was "coke mom".
The other day Ethan wanted to go outside or downstairs, I don't remember which, and I told him no, that we were doing something else. He looked at me and said, plain as day, "Not now." That's right, buddy :)
Ethan is the first of our children who has enjoyed salsa as a toddler. He calls is "shalsha."
My parents stopped by for a brief visit on their way through Madison last Thursday while Anna and I were at the hospital. Ethan had already learned how to say "gramma" on an earlier visit, but this time he learned how to say Grandpa, except it comes out as "granpop".
Ethan uses pacifiers for sleeping still, and we usually just keep these in his crib. Every once in awhile he will come toddling out of his room with one in his mouth when it is not naptime, but he's pretty good about putting them back if we ask him to. A few times, though, he will recognize that it is naptime, and will gather his special blankets and his pacifier, and then come and find an adult, sometimes even announcing "nap!" I love that our kids are self-aware :)
Ethan calls playdo "Dionne" because that's the name of one of Anna's therapists. One time when Dionne was here, she played with playdo with us. It must have made an impression on Ethan because now whenever he sees the playdo he says "Dionne."
We were able to Skype with Matt's parents on Sunday afternoon for awhile, the first time we "saw" them since just before Anna's shunt infection at the end of April. We all had a nice visit, with all five of us, understandably, in a much better place than we were 2+ months ago.
And finally, thank you to whoever is praying for a Spirit-filled home this summer for us, because I know someone, or several someones, must be praying for that exact thing. Even with our early mornings and busy days, from the youngest member of our family to the oldest, we seem to be displaying the fruits of the Spirit. Not all the time, of course, but probably more than we have before all this began. And everyone who enters our home, including those who are paid to, whether they realize it or not, are also displaying these characteristics. So thanks.
"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law." Galatians 5:22-23
We didn't go see any fireworks for the 4th of July, but Matt picked up some firecrackers to do in the backyard. Kate and Ethan enjoyed them a lot.
Ethan's word for smoke bomb was "coke mom".
The other day Ethan wanted to go outside or downstairs, I don't remember which, and I told him no, that we were doing something else. He looked at me and said, plain as day, "Not now." That's right, buddy :)
Ethan is the first of our children who has enjoyed salsa as a toddler. He calls is "shalsha."
My parents stopped by for a brief visit on their way through Madison last Thursday while Anna and I were at the hospital. Ethan had already learned how to say "gramma" on an earlier visit, but this time he learned how to say Grandpa, except it comes out as "granpop".
Ethan uses pacifiers for sleeping still, and we usually just keep these in his crib. Every once in awhile he will come toddling out of his room with one in his mouth when it is not naptime, but he's pretty good about putting them back if we ask him to. A few times, though, he will recognize that it is naptime, and will gather his special blankets and his pacifier, and then come and find an adult, sometimes even announcing "nap!" I love that our kids are self-aware :)
Ethan calls playdo "Dionne" because that's the name of one of Anna's therapists. One time when Dionne was here, she played with playdo with us. It must have made an impression on Ethan because now whenever he sees the playdo he says "Dionne."
We were able to Skype with Matt's parents on Sunday afternoon for awhile, the first time we "saw" them since just before Anna's shunt infection at the end of April. We all had a nice visit, with all five of us, understandably, in a much better place than we were 2+ months ago.
And finally, thank you to whoever is praying for a Spirit-filled home this summer for us, because I know someone, or several someones, must be praying for that exact thing. Even with our early mornings and busy days, from the youngest member of our family to the oldest, we seem to be displaying the fruits of the Spirit. Not all the time, of course, but probably more than we have before all this began. And everyone who enters our home, including those who are paid to, whether they realize it or not, are also displaying these characteristics. So thanks.
"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law." Galatians 5:22-23
Saturday, July 5, 2014
"How do you guys do it?
"How do you guys do it?"
We have heard this question more than once in the past few months from a variety of people in a variety of settings. Our responses depend on our mood on that particular day, or that particular moment of that particular day..
Sometime days it is simply "We don't."
Other days it's "I don't know."
Still others, it's "Because sleep is over-rated."
But on further reflection, I think we have a few answers.
First, we are doing this because we have a lot of great support, through our faith community, through the medical community and through our other support networks. We couldn't do this without them.
Second, we are doing this because our priorities have changed. For a few months, our priorities were mainly medical in nature. We had to let a lot of things go. (Sorry to the grandparents, aunts, uncles, cousins, and friends whose birthdays, anniversaries, etc. we have missed. One day those events will again become a priority in our lives.) When Anna came home, survival for all of us was the main priority. Medical needs, food, relatively clean clothes, and those basic needs were still the priority, but we also added in a big family healing piece.
Now that we have those things mainly under control (most days), we are able to bring more pieces into the picture, especially for Anna. Making up for missed educational opportunities, lost social opportunities, and rehab, rehab, rehab, are on our minds. In addition, we are aware of the toll this whole journey has the potential of taking on each one of us emotionally. So ... things like a clean house are way, way down on the priority list. Lots of other things have been dropped from the to do lists as well.
Thirdly, we don't go anywhere, literally. Anna's life (and mine) revolves around the hospital, church, and our home. Kate, thankfully, has been able to go to Camp Kindergarten so she's not stuck here all the time ... yet. Kate, Ethan, and I also manage a trip to the grocery store every once in awhile. Other than that, people come to us. Not only is it pretty tough logistically to do anything away from our home right now with Anna in her current state, the time it takes to load everything up in the van and then to actually drive somewhere else doesn't seem worth it. So many other things can be accomplished with the resources we have in our home. Plus, so far people are willing to come to us. Therapist visits in the mornings and afternoon playdates, plus Leah around, make our days go by pretty quickly.
Another reason we seem to be making this work is that we have worked on a set of skills in the last several weeks that has helped ... multitasking and differentiating. Not your normal run-of-the-mill multitasking and differentiating, but more like "how can we meet more than one social/emotional/physical/developmental goal for more than one child at any given time with one particular activity, sometimes with that activity even accomplishing something that mommy wanted to get done anyway?" kind of multitasking and differentiating. For example, playdo at the dining room table. One adult can sit at the table with all three kids and play with them. They can interact with all three of them at age appropriate levels, help them gain strength and mobility (for the rehab patient), teach them appropriate language (for the toddler), and play creatively (for the kindergartener). Viola. Coloring on a large piece of paper at the dining room table is another great activity. Last year snapping green beans was a great activity that worked well for both girls; I'm not sure how well it will this year. Especially with Anna, though, we're always trying to think of how we can maximize whatever activity she is doing.
But back to the original question, what other choice to we have? It's not like we're going to throw in the towel and give up. This is not just our life, but our kids' lives ... Anna's life. We want to do whatever we can to help them all through the challenges that come their way.
And in reality, life in general is not easy. Our kids are just learning that lesson a whole lot earlier than Matt and I ever did. I, personally, was struggling a few weeks back with the rough reality of life. In the past few years, we've known several people our age who have experienced tragedy, trauma, hard times, call it what you will. Life is hard. It's not fair. But, in the wise words of Mr. Fred Rogers, "Isn't it great that we have control over how we react to the things around us?" I'd rather choose to keep going and do the best that we can that give up. Maybe we'll even have some fun along the way.
**And how could I forget the biggest reason that we can do this? The gospel lesson this morning at church, along with our pastor's children's message and sermon were good reminders. We do not carry this burden alone; we are yoked with Jesus on this journey and always. He carries the lion's share of whatever struggles we face. Thanks, Pastor, for the refresher.**
Right now Anna is doing well. We finally made it to the hospital for her second round of chemotherapy on Wednesday morning and made it home Thursday evening for dinner. Wednesday was a good mommy-daughter day at the hospital with minimal visitors in Anna's room. We did some math work, played some games, did some reading, played in the playroom, and I did some work trying to figure out the bills while Anna took a nap. I managed a visit back to the PICU while Anna was sleeping and visited with Lynne, the critical care nurse practictioner who watched over Anna back in February, and March, and then again in April. She was glad to hear how well Anna is doing, specifically that Anna is "Anna".
Thursday brought more visitors to Anna's room ... doctors, therapists, residents, etc. Poor Anna doesn't sleep much for overnight hospital stays anymore, but at least they are short stays now, and I know how to keep people away when she is napping. She managed a bit more math and reading in the morning, got in another nap, and then checked in with her physical and occupational therapists in the afternoon, before having a game date with the child life specialist on P4. We have enough of a relationship with the P4 staff that they make sure we get out of there before dinner, so we did.
Anna seems to be doing okay so far with this round of chemo, but she won't have her blood drawn until Monday so we won't know how her blood counts will react until the numbers come back, and then her numbers will continue to drop through this coming week and probably into the following week. We're anticipating some kind of transfusions ahead, but we'll just have to wait and see exactly what the coming weeks hold.
Time for prayers
Thanksgiving
Please give thanks that everything finally fell into place for Anna to safely receive her chemotherapy.
Please thank God for the continued wonderful care that Anna receives at American Family Children's Hospital.
Please give thanks for a quiet weekend at home for our family.
Please thank God for the continued prayers and support we are receiving.
Please give thanks for the strength, peace, patience, wisdom, and rest that we have all had.
Requests
Please pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff, both within the hospital and without.
Please continue to pray for our whole family.
Thank you, as always, for everything.
We have heard this question more than once in the past few months from a variety of people in a variety of settings. Our responses depend on our mood on that particular day, or that particular moment of that particular day..
Sometime days it is simply "We don't."
Other days it's "I don't know."
Still others, it's "Because sleep is over-rated."
But on further reflection, I think we have a few answers.
First, we are doing this because we have a lot of great support, through our faith community, through the medical community and through our other support networks. We couldn't do this without them.
Second, we are doing this because our priorities have changed. For a few months, our priorities were mainly medical in nature. We had to let a lot of things go. (Sorry to the grandparents, aunts, uncles, cousins, and friends whose birthdays, anniversaries, etc. we have missed. One day those events will again become a priority in our lives.) When Anna came home, survival for all of us was the main priority. Medical needs, food, relatively clean clothes, and those basic needs were still the priority, but we also added in a big family healing piece.
Now that we have those things mainly under control (most days), we are able to bring more pieces into the picture, especially for Anna. Making up for missed educational opportunities, lost social opportunities, and rehab, rehab, rehab, are on our minds. In addition, we are aware of the toll this whole journey has the potential of taking on each one of us emotionally. So ... things like a clean house are way, way down on the priority list. Lots of other things have been dropped from the to do lists as well.
Thirdly, we don't go anywhere, literally. Anna's life (and mine) revolves around the hospital, church, and our home. Kate, thankfully, has been able to go to Camp Kindergarten so she's not stuck here all the time ... yet. Kate, Ethan, and I also manage a trip to the grocery store every once in awhile. Other than that, people come to us. Not only is it pretty tough logistically to do anything away from our home right now with Anna in her current state, the time it takes to load everything up in the van and then to actually drive somewhere else doesn't seem worth it. So many other things can be accomplished with the resources we have in our home. Plus, so far people are willing to come to us. Therapist visits in the mornings and afternoon playdates, plus Leah around, make our days go by pretty quickly.
Another reason we seem to be making this work is that we have worked on a set of skills in the last several weeks that has helped ... multitasking and differentiating. Not your normal run-of-the-mill multitasking and differentiating, but more like "how can we meet more than one social/emotional/physical/developmental goal for more than one child at any given time with one particular activity, sometimes with that activity even accomplishing something that mommy wanted to get done anyway?" kind of multitasking and differentiating. For example, playdo at the dining room table. One adult can sit at the table with all three kids and play with them. They can interact with all three of them at age appropriate levels, help them gain strength and mobility (for the rehab patient), teach them appropriate language (for the toddler), and play creatively (for the kindergartener). Viola. Coloring on a large piece of paper at the dining room table is another great activity. Last year snapping green beans was a great activity that worked well for both girls; I'm not sure how well it will this year. Especially with Anna, though, we're always trying to think of how we can maximize whatever activity she is doing.
But back to the original question, what other choice to we have? It's not like we're going to throw in the towel and give up. This is not just our life, but our kids' lives ... Anna's life. We want to do whatever we can to help them all through the challenges that come their way.
And in reality, life in general is not easy. Our kids are just learning that lesson a whole lot earlier than Matt and I ever did. I, personally, was struggling a few weeks back with the rough reality of life. In the past few years, we've known several people our age who have experienced tragedy, trauma, hard times, call it what you will. Life is hard. It's not fair. But, in the wise words of Mr. Fred Rogers, "Isn't it great that we have control over how we react to the things around us?" I'd rather choose to keep going and do the best that we can that give up. Maybe we'll even have some fun along the way.
**And how could I forget the biggest reason that we can do this? The gospel lesson this morning at church, along with our pastor's children's message and sermon were good reminders. We do not carry this burden alone; we are yoked with Jesus on this journey and always. He carries the lion's share of whatever struggles we face. Thanks, Pastor, for the refresher.**
Right now Anna is doing well. We finally made it to the hospital for her second round of chemotherapy on Wednesday morning and made it home Thursday evening for dinner. Wednesday was a good mommy-daughter day at the hospital with minimal visitors in Anna's room. We did some math work, played some games, did some reading, played in the playroom, and I did some work trying to figure out the bills while Anna took a nap. I managed a visit back to the PICU while Anna was sleeping and visited with Lynne, the critical care nurse practictioner who watched over Anna back in February, and March, and then again in April. She was glad to hear how well Anna is doing, specifically that Anna is "Anna".
Thursday brought more visitors to Anna's room ... doctors, therapists, residents, etc. Poor Anna doesn't sleep much for overnight hospital stays anymore, but at least they are short stays now, and I know how to keep people away when she is napping. She managed a bit more math and reading in the morning, got in another nap, and then checked in with her physical and occupational therapists in the afternoon, before having a game date with the child life specialist on P4. We have enough of a relationship with the P4 staff that they make sure we get out of there before dinner, so we did.
Anna seems to be doing okay so far with this round of chemo, but she won't have her blood drawn until Monday so we won't know how her blood counts will react until the numbers come back, and then her numbers will continue to drop through this coming week and probably into the following week. We're anticipating some kind of transfusions ahead, but we'll just have to wait and see exactly what the coming weeks hold.
Time for prayers
Thanksgiving
Please give thanks that everything finally fell into place for Anna to safely receive her chemotherapy.
Please thank God for the continued wonderful care that Anna receives at American Family Children's Hospital.
Please give thanks for a quiet weekend at home for our family.
Please thank God for the continued prayers and support we are receiving.
Please give thanks for the strength, peace, patience, wisdom, and rest that we have all had.
Requests
Please pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff, both within the hospital and without.
Please continue to pray for our whole family.
Thank you, as always, for everything.
Tuesday, July 1, 2014
Then again ...
We were all packed up and ready to go this morning at 7:15 a.m. The last thing I do on these mornings is call P4 to ask if they have a bed available for Anna, which they almost always do since she is on their weekly schedule for receiving chemotherapy.
Well, last night we had severe weather .. again . This time there was some kind of water damage at the hospital; I'm not sure what kind. Apparently some of the rooms were unavailable. The nurses were going to call back when they had more information. So ... flexibility.
Leah, our helper, arrived at 7:30. Anna and I were supposed to be gone. We weren't.
Kate and Matt left at 7:45 for Camp Kindergarten and work.
We hadn't heard anything by 9. I called again. They were having a meeting at 9:30 about what to do with the patients (like Anna) who were supposed to be admitted. So ... patience.
We hadn't heard anything by 10:30. I called again. (My rationale was that one of us needed to pick Kate up at 11:10; Ethan needed lunch and a nap soon; Anna would need a nap soon; we needed to make a plan for the following hour.) Still no real word, but we probably wouldn't need to leave within the hour.
Leah left to get Kate; I fed Ethan and ate lunch myself.
About 11, Anna's primary nurse practitioner called. We both laughed at the situation; it's getting to be like a comedy of errors here, at least now that we're past the critical stages.
She gave us two options:
1) Anna and I could come in to day-treatment by noon for pre-hydration and be transferred upstairs to P4 by the end of the day. However, the day treatment rooms are small, windowless rooms without access to much interaction or fun and then Anna wouldn't be discharged until late on Wednesday night.
2) We could try this round of chemo a third time tomorrow morning.
After thinking for a few minutes, I went with option 2. Anna overheard the conversation and wasn't too happy with the decision. She was ready to go today, wanted to see her friends at the hospital, but was also very tired after not having had much of a nap yesterday due to the MRI and appointment in the middle of the day. After her nap, she was feeling much happier.
On the bright side, this flexibility and patience all happened IN OUR HOME! And Leah was here ALL DAY! It was a beautiful day; Anna had a productive and good day (except for that pre-nap meltdown); Ethan enjoyed himself; Kate had a fun day; we got so much done; and we ended the day with a good playdate.
Not what I was expecting when I woke up today, but I'll take it.
By the way, it's been awhile since the fundraising website was up and the benefit happened, but thanks again to all who participated. We can't express enough what a relief it is to not have to worry about the money aspect of everything right now. Thanks.
Let's see what tomorrow brings.
Well, last night we had severe weather .. again . This time there was some kind of water damage at the hospital; I'm not sure what kind. Apparently some of the rooms were unavailable. The nurses were going to call back when they had more information. So ... flexibility.
Leah, our helper, arrived at 7:30. Anna and I were supposed to be gone. We weren't.
Kate and Matt left at 7:45 for Camp Kindergarten and work.
We hadn't heard anything by 9. I called again. They were having a meeting at 9:30 about what to do with the patients (like Anna) who were supposed to be admitted. So ... patience.
We hadn't heard anything by 10:30. I called again. (My rationale was that one of us needed to pick Kate up at 11:10; Ethan needed lunch and a nap soon; Anna would need a nap soon; we needed to make a plan for the following hour.) Still no real word, but we probably wouldn't need to leave within the hour.
Leah left to get Kate; I fed Ethan and ate lunch myself.
About 11, Anna's primary nurse practitioner called. We both laughed at the situation; it's getting to be like a comedy of errors here, at least now that we're past the critical stages.
She gave us two options:
1) Anna and I could come in to day-treatment by noon for pre-hydration and be transferred upstairs to P4 by the end of the day. However, the day treatment rooms are small, windowless rooms without access to much interaction or fun and then Anna wouldn't be discharged until late on Wednesday night.
2) We could try this round of chemo a third time tomorrow morning.
After thinking for a few minutes, I went with option 2. Anna overheard the conversation and wasn't too happy with the decision. She was ready to go today, wanted to see her friends at the hospital, but was also very tired after not having had much of a nap yesterday due to the MRI and appointment in the middle of the day. After her nap, she was feeling much happier.
On the bright side, this flexibility and patience all happened IN OUR HOME! And Leah was here ALL DAY! It was a beautiful day; Anna had a productive and good day (except for that pre-nap meltdown); Ethan enjoyed himself; Kate had a fun day; we got so much done; and we ended the day with a good playdate.
Not what I was expecting when I woke up today, but I'll take it.
By the way, it's been awhile since the fundraising website was up and the benefit happened, but thanks again to all who participated. We can't express enough what a relief it is to not have to worry about the money aspect of everything right now. Thanks.
Let's see what tomorrow brings.
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