Mixed emotions

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!

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.

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.





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 :)

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 :)

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.

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 :)

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.

Home visits

Anna's first trip home today was a success!  In fact, it was enough of a success that we asked for, and were granted, another day pass for Sunday.  Hip, hip, hooray!

Before Anna and I left the hospital this morning, our goal was only to make it home and back.  Luckily, the charge nurse told me that if things were going well, we should stay away as long as we could.  Anna was not due for any more medication until 6 p.m., and we got back at about 5:30 :)

We made it into the van and all the way home without incident.  Anna vegged on the couch (with a big smile on her face) for awhile while Kate was giddily bouncing all over the house.  Then Anna joined us, in her wheelchair, for lunch, before taking a nap about the same time as Ethan.  After she woke up, I asked her if she wanted to run into a store to spend some of a gift certificate she received.  She sounded up for the excursion, so we got to have a Mommy-Anna date during which she picked out a new stuffed animal for herself, one for Kate, and one for Ethan ... as if we don't already have enough stuffed animals.  We made it back home so she could give her gifts and take another nap.

The hardest part about being home for her was having to leave again, but she is a smart enough kid to realize that we don't yet have all of the necessary training and equipment to fully take care of her needs here at home.

On the way back to the hospital I asked Anna if she would have enough energy to make the trip home again on Sunday and she said yes.  So we asked as soon as we got back, and everyone gave us the okay.  We plan on picking her up after church tomorrow for another afternoon at home!

When all of the kids were home, Matt and I felt as if a great burden were lifted from our shoulders.  We knew that we missed having all of our family together at home, but we didn't realize just how much we missed it.  I think we may even have forgotten just how good it feels to be at home with all of our family.

And now the radiation portion of Anna's treatment has an end in sight!  I feel like we can take a big breath and say to ourselves ... with God's help, we can do this!

Only two things to pray about tonight ... Please thank God for a happy day at home for our family.  Please ask God to give each member of our family restful sleep tonight so that we can enjoy another happy day tomorrow as well.

Thank you!

Making progress

We always knew that Anna was the kind of kid that given a proper chance, she would be able to make great strides in her rehab.  Now that she has been in the same room for more than two weeks without major setbacks and had relatively the same "schedule" during that time, she has been able to make some good progress.

Her stamina is increasing every day; she is able to push herself for longer periods of time each day.  Her strength and muscle coordination is also increasing.  She is able to use more muscles at a time.  For example, while she's practicing sitting on the edge of the bed during therapy, she can also do things with her hands and arms now.  On a brighter note for us as parents, Anna's attitude is improving as well; this week we've been able to see more and more of the sweet, silly girl that we always knew was still inside.

Anna's gains are impressing her care givers at the hospital, as well.  For us as parents, we are trying to be cautiously optimistic because of how everything has gone since January.  Those following Anna's charts, though, are being more openly optimistic :)

Yesterday a few big things happened for Anna.  First, during our care conference in the morning, she was granted a day pass for this Saturday.  (Hooray!)  I'm not going to get too excited until Saturday actually happens, but the thought of a short trip home makes me smile.  We will all, however, be experiencing many different emotions if and when this visit happens.  The actual process of bringing Anna home in the van will be physically exhausting for her.  She may need to take a nap here before she does the trip back to the hospital.

Anna's physical therapist has given us lots of suggestions to help prepare Anna for the trip, physically and emotionally, as well as ideas to help make the physical aspects of the journey easier on Anna.  To help Anna prepare, she has been having some "carseat time" at the hospital each day since Wednesday.

For future reference, once Anna is home for good, it will still be awhile before we will want visitors at our house.  Our family will need time to adjust to our new normal before we are ready to share our life with others.  When the time is right, we will extend invitations to friends and family just as we have for hospital visitors.

Another big event yesterday at the hospital was our visit down to the radiation chamber to see how Anna would do with "the mask" set-up while she is awake.  When someone receives radiation of this sort, their head needs to be imobilized by wearing a tightly-fitting, individually formed plastic mask over their face and head that is fixed to the table underneath.  I'm not sure that I could handle it.  Anna, however, did a very good job for a 6-year-old and impressed the technicians and radiation oncologist with her comfort level and self-control.  We learned, though, that she will still need anesthesia for all of next week's treatments.  Starting the following Monday, she may not.

The final exciting events yesterday happened during and after Anna's therapy.  Back in February, Anna was very frustrated by the fact that she had to wear pull-ups.  We brought in a specially designed commode to assist her with her toileting needs, but she didn't have the strength to use it.  Then her mind and body were tied up with many other challenges and, to be honest, Anna didn't care as much about the pull-ups.  This week one of Anna's therapists asked if she might be interested in trying again.  At that point, Anna's digestive system was pretty bad and I didn't think Anna would want to even try.

Well, yesterday afternoon they got her up in the commode to check Anna's comfort level with it all, and she peed.  Then, last night, she let Melissa know that she had to go, waited until someone was able to safely transfer her to the commode, and then went again.  This is certainly another step in the right direction. :)

Matt is with Anna all day today; I'm bringing Kate and Ethan to the hospital this afternoon for some family time and for dinner.  Tomorrow we will hopefully bring Anna home for a short time.  Sunday Anna will have a few visitors at the hospital and then next week is another week of more radiation, chemotherapy, phsyical therapy, occupational therapy, speech therapy, visitors, and postcards.  The hospital stay has an end in sight.

Time for prayers

Thanksgiving
Please give thanks for all of Anna's progress this week, medical, physical, and emotional.
Please thank God for Matt's opportunity to spend Fridays with Anna.
Please give thanks for my friend who came to spent the morning with me and the other kids at the house this morning; I really needed it :)
Please thank God for all that Melissa was able to do with and for our family this week.
Please give thanks for modern medicine.
Please thank God for the wonderful care that Anna is continuing to receive at the hospital.

Requests
Please pray that tomorrow's visit home goes smoothly and safely for all involved.
Please continue to pray for strength and wisdom for Matt and me.
Please pray for restful sleep for me.  Between hospital time, racing thoughts, personal migraines, colds, and teething toddlers, I'm not sleeping well.
Please continue to pray that Anna's treatments are 100% effective and that she experiences few side effects.

Thank you for your continued thoughts, prayers, and postcards.

Theological questions

Some friends mentioned to us at the start of everything that at some point we would have difficult faith-related questions.  We have.  For me, personally, I have not questioned God's existence or presence during our trials.  We know that God is walking with us every step of the way and providing strength and support as no earthly person could.  Our questions, however, deal with God's mercy and compassion.  Why does cancer have to happen to a sweet, little girl?  Specifically, our daughter?

After thinking about this question a lot and talking with Matt, I'm going to attempt to describe our current understanding.  Before I begin, though, let me offer the following disclaimer.  Matt and I are not trained theologians, nor have we taken many theology courses (although we have taken some).  However, we were both raised in Christian homes that had - and still have - a strong Lutheran heritage, we both attended Lutheran schools for some of our elementary years, and we both went to Valparaiso University, a Lutheran university.  In addition, we have had the opportunity to "rub shoulders" with some pretty talented, knowledgable pastors.  For example, Matt's dad and both of his brothers-in-law are pastors; one of my college roommates is also a pastor; and multiple retired pastors and "theological offspring" (a.k.a. pastor's kids) call our church their home.  Besides, our pastor is a pretty good one :)

With all this said, my theology may not be very sound.  For those who have more experience in these matters than me, please correct me when I'm wrong.  So ... here it goes.

I do not think that cancer was part of God's perfect plan when He created the world.  However, when sin enetered the world, a lot of other crap came along with it, cancer included.  Although God did not (and I assume, still does not) want His children to suffer from things like cancer, it still happens because of that pesky issue called sin.

What God does promise to do is to be with us when things like cancer happen.  He walks with us, and sometimes even carries us, through the difficult times.  And then when the hard times have passed, He helps us look back and learn from those experiences.

I do well with analogies and here is one that has helped me.  A few years ago, Anna was at a neighborhood park sitting on the teeter-totter when she startled a wasps' nest that was under the seat.  She was stung several times before I was able to pull her from the equipment and protect her from more harm.  After calming her down and soothing her wounds, our whole family continued to refer back to and learn from the experience for months to come.  Even though it was very painful at the time, we helped her move through and beyond the specific trial.  In the same way, God helps us move through and beyond difficult situations.

Matt is usually the first one, however, to tell me how my analogies break down.  In this particular one, things fall apart when we realize that we as parents are not all-knowing and all-powerful (surprise, surprise).  Even if I knew that there was a wasps' nest under the seat, there was nothing I could do to stop the initial pain and suffering.

We struggle with the fact that God is omniscient and omnipotent and yet Anna is still suffering.  We assume that since He has the knowledge and the power, He could make things happen differently.  We wonder why He hasn't, and realize that on this side of heaven we probably won't know the whole reason why Anna has had to battle brain cancer.

At the same time, I'm not necessarily sure that I want to know God's whole reason, because knowing might bring up more questions for which I'm not ready to hear the answers.  I have learned that sometimes I don't want to know exactly what is going on.  For example, we have not seen the MRI images from the Tuesday when Anna's cancer was at its worst, and I don't know when, or if, I will ever be ready to see those pictures.

The Lutheran Hour Ministries prayer for yesterday and today was the same.  I think, perhaps, God was trying to tell me something.  Here's the prayer:

Dear Lord, please help me remember that You are almighty, all-powerful, and all-knowing, that Your love, mercy and grace are never ending, and that all I need to do is to trust and follow in Your way. In Jesus' Name. Amen.

Back to the day-to-day reality.  Anna is continuing to make progress every day with her strength and skills.  The speech therapist who has worked with her this week has been impressed at the improvements Anna has made with her eating in just these few days.  The physical therapist and occupational therapist also see improvements on a daily basis.  Considering the hectic schedule Anna had this morning, any kind of gains are a good sign.

Today the decision was made for Anna to stop being fed via her ng-tube and to start TPN instead.  TPN stands for total parenteral nutrition.  Basically, Anna will no longer receive formula or pediasure through her body's natural digestive system, but will be receiving her nutrition directly into her blood stream.  Between the effects of the spinal radiation on her intestines, her continuing positive test for c.diff, and the antibiotics being used to treat her c.diff infection, her body was literally absorbing zero percent of the nutrients entering her stomach.

So, it's TPN for now.  Before it started, I asked all of the questions that we have learned to ask ... What are the possible side effects?  (Too rapid weight gain, possible infection at the site of her port, etc.)  Can she still eat whatever she is capable of eating orally?  (Yes.)  What does the weaning process look like?  (Too complicated to go through right now.)  And so on ...

We know that this is the right path for Anna at this point in time.  Her little intestines and her sore bottom just need a break and a chance to recover.  Once her antibiotic is done on Saturday, and her feeds have been done for 48 hours, the plan is to slowly reintroduce pediasure and she how she does.

Time for prayers

Thanksgiving
Please give thanks that Anna's nutrition plan has been set up with minimal issues.
Please thank God for the strength that Anna has been gaining, in spite of the fact that she has been, for all practical purposes, starved for a few weeks.
Please give thanks for Anna's stable vital signs.
Please thank God for the exemplary care Anna is receiving from the doctors and nurses.
Please give thanks for Melissa and the role she is able to take in our family.
Please thank God that we are still managing to keep our heads above water.
Please give thanks for the extended time I got to spend with Anna today.
Please thank God for all of the smiles I saw on Anna's face today; even her nurse got to have a glimpse of them.

Requests
Please pray that the TPN works well for Anna.
Please pray that Anna's gut begins to heal and that she will not need to be on TPN for very long.
Please ask God to continue to grant Anna strength and healing.
Please ask God to ease Anna's muscle soreness and help her sleep better tonight (Anna's request).
Please pray that the treatments are 100% effective and that Anna experiences minimal side effects.
Please continue to pray for Anna's care givers at the hospital.
Please continue to pray for strength and wisdom for Matt and me.

Since the author of the Lutheran Hour Ministries included the same prayer twice, I will, too.  It's a good one.

Dear Lord, please help me to remember You are almighty, all-powerful, and all-knowing, that Your love, mercy and grace and never-ending, and that all I need to do is trust and follow in Your way. In Jesus. Amen.

Pictures

Two weeks ago today Anna was taken off of the ventilator.  We took a few pictures that morning in her room to help us remember that time.  It's taken me awhile to figure out how to easily upload those pictures to this blog.  Here they are, finally.

Anna looks quite peaceful in this shot, and a little more filled out than she is right now.  The week she was on the ventilator was the only week here that she consistently put on weight.

We honestly don't know exactly how many medications she had going into her body that week, but we do know that two IV pole set-ups were required.

We didn't decorate Anna's room too much that week, but here are some of the pictures and decorations that we have consistently put up in each of our different rooms (except for the very first one, which we were only in for about 40 minutes).

All of the rooms here have a beautiful sun/moon night light.  Starting in our fourth room, Matt created a smiley face on the mirror that has travelled to the subsequent rooms as well.

Last Monday after our brief trip outside, Kate, Anna, and Carly cuddled up in bed for a few stories.

On Monday afternoon a "leprechaun" came to visit the kids at American Family Children's Hospital.  While waiting for him to stop by her room, Anna enjoyed reminising with me about her preschool St. Patrick's Day experience when the leprechauns came to play tricks on them :)

Not to be forgotten is Mr. Messyface.  Yesterday morning for breakfast I grabbed some muffins a church member had left for Kate and Ethan.  They looked like blueberry muffins to me, but after I warmed them up and put one in front of Ethan, we all discovered they were chocolate chip muffins :)

Yesterday appears to have gone well for Melissa and Anna, and last night sounds like it went okay without any family or friends staying overnight with Anna.  We're going to weigh her again this afternoon to see how she is progressing and then to decide if anything more needs to be done in terms of her nutrition.

Anna got her first postcards yesterday afternoon; I put up her map this morning; we're ready to start putting up her stickers.  I've seen a few smiles out of our girl today already, but we'll have to wait and see how she wakes up from the anesthesia again.

Time for prayers

Thanksgiving
Please thank God that Melissa and Anna had a successful day together yesterday and that they were able to find a way to communicate with one another.
Please give thanks that Anna seems to be more comfortable with the times that I have to leave; she's not in tears every time anymore.
Please thank God that the cold that went through Ethan, Kate, and I was very mild.
Please give thanks for the consistency in caregivers that all of our kids have had during this time.
Please thank God for the opportunity for Matt and I to be home together every once in awhile now.

Requests
Please pray that Anna can safely gain weight.
Please pray that Anna's sore muscles feel better.
Please ask God to grant Anna restful sleep while she's here at the hospital.
Please continue to pray for Anna's caregivers here.
Please continue to pray for strength and wisdom for Matt, Melissa, and me as we work through this week together.
Please continue to pray for peace and understanding for Kate and Ethan.
Please pray that Anna's treatments are 100% effective and that she experiences few side effects.

Thank you, as always, for your continued prayers and support.

Six weeks

Six weeks ago today was Anna's first diagnosis with brain cancer.  A lot has happened in those six weeks.

It's looking more and more like Anna will have four more weeks at the hospital to finish up her treatments before she can come home for good.  With the kind of rehab Anna needs and the energy required from her to simply get through her XRT and chemo each day, it would be extra draining on her to travel to and from the hospital each day to receive treatments.  In part because of insurance reasons, she can't have an overnight at home without the expectation of moving back home within a few days.  That means Anna will  probably not have an overnight visit until the last weekend before this first phase of her treatment is over.

Tired.  Physically and emotionally drained.  Exhausted.  Missing home life.  That's how I feel right about now.  And in comparison to Anna, I've had it pretty good for the last six weeks.

No wonder she has a hard time feeling happy.  Today I talked with Anna about how the doctors are taking care of her body, doing their absolute best to get rid of the cancer, and working to get her safely through her treatments.  I let her know that our role as her parents right now is to help her find ways to be happy and enjoy life.  If she asks for anything (within reason), we will do whatever we can to make it happen.  One day, our role will change again into that of "normal" parents, but for now, we want to help her smile and feel good about herself.

I think seeing friends has helped.  I think receiving postcards will help.  I think visiting home this Saturday might help (if she's up to it).  But Anna's spirit is sagging, understandably.

We're all doing the best we can, but sometimes it is just a struggle to put one foot in front of the other and keep moving.

Overall Anna is doing better and better each day.  Her therapists were, again, impressed with the improvements Anna made over the weekend.  The rehab coordinator stopped by during therapy today and, after seeing Anna's progress, sounded pretty hopeful about a day pass on Saturday.  However, Saturday is five days away and much can happen in those five days.

Anna continues to tolerate her chemo and radiation every morning.  The daily anesthesia is rough on her, though, especially on Mondays after having had a break from it over the weekend.  Coming out of the drug-induced sleep was frustrating for Anna and me both last Monday and this morning; Anna cried, whined, complained, etc. for over an hour both days.  Officially, she has six (I think?) more days of the targeted radiation during which she must be put under.  For the last ten treatments, she may not need anesthesia if we can coach her to lay still for long enough and be comfortable having "the mask" over her face for that time.

Anna was weighed this afternoon again and it appears that she at least maintained her weight from Friday, and maybe even gained a little.  I didn't get a chance to speak with the nutritionist after Anna's weighing, but I hope our current nutrition plan is enough for her.  The next step would be for her to receive her nutrition directly into her blood, bypassing her digestive system; this kind of step would be the last resort for having Anna get her nutrition and is generally not the preferred method.

Matt is staying at the hospital tonight, but after a somewhat successful experience on Saturday night without either of us there, we don't plan on staying with Anna again tomorrow night.  Anna has had some amazing consistency with one of her night nurses and so we feel comfortable (although a bit guilty) about sometimes leaving after we've put her to bed.

Time for prayers

Thanksgiving
Please give thanks that Anna continues to tolerate her treatments.
Please give thanks that Anna's side effects from her treatments thus far have not been too serious.
Please thank God that Anna was in amazing health before all this began; she has been relying on those healthy reserves for most of her hospital stay.
Please give thanks for the consistency and support our family is receiving at the hospital.
Please thank God for the support that our family is receiving from our church and community.
Please thank God that Anna seems to have maintained her weight over the weekend.
Please give thanks for Melissa and her relationship with our family.

Requests
Please ask God to relieve Anna's muscle pains, especially overnight.
Please pray that Anna sleeps better tonight.
Please pray for strength and wisdom for Melissa as she spends a day with Anna at the hospital tomorrow.
Please pray that Anna's health reserves continue to get her through her treatments.
Please ask God to have the treatments be 100% effective.
Please pray that Anna experiences few side effects to her treatments.
Please pray for Anna's spirit, that she can find reasons to be joyful and thankful.

Let's get those postcards in the mail :)

Postcards, please!

It's a lot easier to write my thoughts when I can ignore the fact that others read this blog.  Before February, I didn't have to worry about what I wrote because I knew that only a handful of people (mostly family) ever read what I wrote.  Now it's different.  We didn't ask to be in this position.  It's something that has just happened.  For me it still feels a lot of times like the rest of the world has just stopped, even though I know it hasn't.  Everyone else's life has kept moving on in spite of the fact that it still looks like and feels like February every time I leave a building.

We honestly don't know how far Anna's story has reached, but now we're ready to find out.

Because of all of Anna's health issues, she hasn't been in school for six weeks.  Her education has not exactly been at the top of the priority list these days, but now that she is in a bit more stable of a place physcially, she is ready to learn something new.  (And being the teacher that I am, I'm always looking for learning opporunities.)

Anna has had many lessons in science since we've been here (so has the rest of the family), and she's also had the opportunity to listen to lots and lots of books and stories.  Her vision isn't quite right yet because of how the cancer was/is affecting her optic nerve so she hasn't been reading on her own.  This evening I just posted a bunch of math facts up around her room so that she can practice those when she is feeling up to it.

Now we're ready for some geography and social science work.  Here's where you come in.  I'd like people to send Anna postcards here at the hospital.  I'm envisioning putting up a map of the US, somehow labeling where the cards originated, and then putting them all together with a hole punch and a ring clip.

For those people living in and around Dane County, you could send a standard sized post card with landmarks, nature scenes, jokes, or Bible passages.  Since Anna can't see well enough to read, just write a quick note on the back saying how you know our family (in case Anna doesn't know you specifically) and a special Bible verse.

For those of you living outside of Dane County, you could send a standard sized post card with something specific to your location (culturally, historically, naturally, etc.).  Again, since Anna can't see well enough to read, you can write a quick note on the back saying how you know us and a special Bible verse.

It might be best to just send her one post card from your whole family, unless your kids really want to send her individual cards.  I don't want to overwhelm the mail staff here too much :)

Please send the postcards directly to Anna at:

Anna Mischnick
American Family Children's Hospital
1675 Highland Avenue
Madison, WI  53792

I think this will be a fun opportunity; I just hope the people working in the mail room don't get sick of us :)

Time for prayers

Thanksgiving
Please give thanks that Anna was able to have some friends and family visit this weekend; she enjoys seeing familiar faces.
Please give thanks that Anna had a quiet, stable weekend in terms of her health; we cherish these times with no major setbacks.
Please thank God for safe travels for Matt's family.
Please give thanks that Melissa is willing and able to help us out again this week.
Please thank God that Anna is getting stronger every day.

Requests
Please pray for Matt's parents as they continue their travels back through Iowa and then on to South Dakota.
Please pray for strength for Melissa this week as she will be helping out our family a lot.
Please continue to pray for Kate and Ethan; 6+ weeks of different caregivers (often daily and who are often very tired and distracted) is taking its toll.
Please continue to pray for balance for Matt as he juggles work, home, and hospital this week.
Please continue to pray for Anna's caregivers at the hospital.
Please pray that Anna's treatments are 100% effective.
Please pray that Anna experiences few side effects to her treatments.
Please pray that the scratchy throat that Kate and I seem to have is nothing bad and passes quickly; we both wore protective masks today on the 4th floor, but don't want to have to do that every day if we don't need to.

I've started asking Anna what she would like prayed for.  Tonight she asked me to pray that her neck muscles feel better (they're getting sore from being used again) and that she sleeps better.  So I'm passing along those requests.

Thanks again for your thoughts and prayers.

Anna's new reality

February was a really tough month for Anna.  She was in almost constant pain because of her elevated intracranial pressures.  She was nauseous because of her high ICP, and also because of some of the pain medications.  Until her treatment started she was slowly loosing control of her muscles because the cancer and tumors all along her spine were blocking the messages sent from her brain to her body.  She was losing weight almost continuously (she weighs about 8 lbs. less than she did at Christmas).  She was on a ventilator for 7 days.  And she had three brain surgeries; one major and the other two "relatively" minor.

Because of all of this, Anna has been bedridden for almost 6 weeks.  At the end of February, her body was like that of a newborn's.  She did not even have control enough of her head to turn it to a side.

I want to share this because I want to be clear about what Anna can and cannot do.  So far, we have tried to be as positive as we can be, especially with Anna.  We like to focus more on what she can do, instead of what she cannot do.  However, I think that in doing so, we are not giving a clear picture of who Anna is right now.

Right now Anna looks like a really sick cancer patient.  She is underweight and has lost her hair.  She is physically weak.  She does not have much large muscle control, nor fine motor skills.  Her face is often expressionless because she has not regained much control of those muscles yet.  Her speech is slurred and quiet (unless she is angry and is yelling; then it's really slurred, but loud).

However, she is making improvements.  Two and a half weeks ago, two (or sometimes even) three adults were needed to transfer her into her wheelchair.  One person held her body; one person supported her head; and one person watched all of the tubes and cords connected to her.  Now Matt and I can get her into and out of her wheelchair independently.

When my mom was working as a speech therapist, she would often give families a key piece of advice.  She would tell them that every day their child would learn, change, and grow.  That is true for all kids, but it's especially true for Anna.

Dr. Iskandar also uses the following illustration.  "How do you eat an elephant?  One bite at a time."

After a month of backsliding, Anna is slowly but surely "eating the elephant."  But it is going to take a long, long time and I envision that her skills will return in a similar order to those of an infant ... head control, rolling over, sitting up, and eventually eating, writing, feeding herself, etc.

The other day she told me that she justed wanted to run with her friends.  I told her that we would work towards running.  It's not going to happen today, or tomorrow, but we can work towards that.  I can't promise her that she will be able to run again because we don't honestly know if she will.

Until the time when Anna has reached her full potential, she may have some tough experiences with peers and even adults.  For those who don't know her story and haven't seen what she had gone through, she just may look like a kid in a wheelchair who isn't able to do much, although her brain is as sharp as it ever was.  I hope that we are able to give her the love and strength to get through those times.

The Lutheran Hour Ministries devotion for today addressed some of these issues; it was a good one for me to read this morning.  I will close with its prayer which I pray more for Anna than for me.

Dear Lord, I give thanks that no matter what others may say about me, I have peace at the center. May I always give thanks for the Savior who has made that peace more than a possibility. In His Name I rejoice. Amen.

Family time

The whole Mischnick family was able to gather in Madison today; hooray!  Matt's parents traveled from South Dakota to Waterloo, IA, to visit Mark's mom, and then the rest of the way to Madison.  Matt's sister, husband, and four kids traveled from another part of South Dakota to Madison, with a short stop in Waterloo as well.  Matt's other sister, husband, and three kids traveled from Northern Illinois to Madison today.

The South Dakota cousins came by our house this morning so Kate and Ethan could get some good cousin time and I could have a chance to visit with Matt's sister and brother-in-law.  Then we all congregated on the first floor of the hospital this afternoon and evening.

Anna came down for a visit for what seemed like a long time for her.  The cousins had some pictures to show her, and then they all gathered in the "movie theater" to watch some cartoons.  After taking Anna back upstairs to rest, a few of the cousins got a mini-tour of P4 and saw Anna's room.  Then Grandma and Grandpa kept Anna company while the rest of us had some pizza on the first floor.

All in all, it was a very good visit.  These kinds of opportunities for us all to be in one place don't come along very often, so we cherish the times when it works, even if it's not under the best of circumstances.  We love our extended family and wish that we would all live closer to one another.

In general, right now what our family misses most is being all together and having fun together.  We used to have a lot of fun, especially at dinnertime and in the evenings.  Now the majority of our time together is spent trying to figure out the logistics of life or talking about Anna's health.  We miss the laughter of our kids, all of them.

Matt and I have been told that couples going through stressful situations like ours often respond by either being drawn closer together or by having it become a wedge in their relationship.  Matt and I have fallen into the first category.  In the past few months, we have learned a lot about one another and about our relationship. 

One of the biggest things that has surfaced has been knowing that we do much better when we are able to deal with any crises together in the same place.  The Monday this all began we were physically separate and a few of the harder conversations have happened when we have not been able to be in the same room.  Those were probably the hardest times.  When Matt and I are able to, literally, hold hands, we are able to deal with things in a much stronger way.

We hope that when this is all over, our family is stronger than we were when we began.

Time for prayers

Thanksgiving
Please thank God that Matt's whole family was able to gather together today for a little while.
Please give thanks that my mom had the strength to make it through this week.
Please give thanks that Anna is growing stronger every day.
Please give thanks that Anna has been able to see all of her extended family since her initial diagnosis.
Please thank God for family.
Please give thanks that Anna will have the night nurse and day nurse for the next three days; we love consistency.
Please thank God for the rest that comes with weekends.

Requests
Please ask God to protect Matt's family as they travel back to their homes in the next few days.
Please pray that Anna is able to safely gain weight.
Please pray that Anna's treatments are 100% effective in killing the cancer.
Please pray that Anna experiences few (or no) side effects from the treatments.
Please ask God to be with those kids and adults who are visiting Anna these days; it can be hard to take it all in.
Please continue to pray for strength and wisdom for Matt and me as we try to keep our heads above water for the next four weeks of Anna's treatment.
Please continue to pray for Anna's care staff.

Another song that has been on my mind lately is "We won't be shaken" by Building 429.

This world has nothing for me
This life is not my own
I know You go before me and I am not alone
This mountain rises higher
The way seems so unclear
But I know that You go with me so I will never fear
I will trust in You

Whatever will come our way
Through fire or pouring rain, we won't be shaken
No, we won't be shaken
Whatever tomorrow brings, together we'll rise and sing
That we won't be shaken

You know my every longing
You've heard my every prayer
You've held me in my weakness
Cause You are always there
So I'll stand in full surrender
It's Your way and not my own
My mind is set on nothing less
Than You and You alone
I will not be moved.

We will trust in You
We will not be moved
We will trust in You
And we won't be shaken.

Hair loss

Anna's hair came out today.  Over the course of the week I'd seen more and more strands on her pillow, but we hadn't had the time or energy to do a thorough washing/brushing for several days.  Today when she got back from the recovery room after her XRT, I ran my hands through her hair and clumps started falling out in my hands.  It wasn't easy for me.  She's not completely bald yet, but the nurses tell me that she will be in just a few days.  To be honest, I think it will be a bit of a relief for Anna.  Her head had been itchy for awhile and her hair kept getting in the way, or really tangled with bedhead, or pulled with all of the tubes and transitions.  I'm not sure yet how she'll feel about being bald when she starts seeing more and more people from her life outside the hospital.

Otherwise Anna had another good day.  She's making progress with her strength and muscle control, albeit in baby steps.  I spoke with her nutritionist today and we're going to add some broken down oils to her diet in addition to increasing her pediasure peptide.  I think of the oils as the equivalent to eating melted butter :)  Well, not quite.  What Anna will be getting will be a bit easier to digest, but hopefully it will help slow down her system a bit and allow her to fill out again; I think Kate might actually weigh more than Anna right now :(

The care conference today was good.  Anna will not receive a day pass for this Saturday because we all feel she just isn't strong enough to handle the drive to and from home, with activity at home as well.  Maybe she will be by next week, especially if she starts getting enough nutrition again.  We also had a frank discussion about when Anna will be discharged from the hospital.  Honestly, it will probably be best for her to receive in-patient treatments until the end of her radiation simply because then she doesn't have to use extra energy to go to and from the hospital each day.  As one of the nurse practitioners mentioned to me later in the day, Anna's is a complicated case.  However, Anna may surprise us all with what what is capable of doing.

I know I've mentioned that Kate is having a hard time with some of the changes taking place in her life, but I don't think I've ever talked about how amazing she has been, too.  We always knew Kate was a pretty special kid, and those who know her a bit better would agree.  She is an empathic, compassionate kid, in addition to being goofy, energetic, articulate, and very imaginative.  Some of her hardest emotional moments have been when she has had to be alone, or when she thinks someone or something else has to be alone.  For example, for awhile she was not allowed to page through books independently before we had read them with her.  Otherwise she would develop her own story in her mind's eye and if things didn't turn out how she wanted (for example, if someone ended up alone at the end of the book), she would hide in her room and cry.

Anyway, Kate is amazing with Anna.  I remember when I was a kid I would be anxious or uncomfortable around people who had physical or cognitive disabilities.  I think those feelings are pretty common in most kids.  As I've grown and matured, my perspectives have changed and I'm not nearly as uncomfortable as I once was.  Now that I have a child who has some pretty severe physical challenges, my perspectives have changed yet again.

Kate is utterly and completely comfortable with and around Anna.  She seems to know just what to do and say when she is with her sister.  She has no fear about climbing up into bed with Anna to snuggle as best she can; she knows to ask Anna if it's okay to play on or around her wheelchair; she treats Anna just like she always has, with love.  We knew this experience would change each member of our family in profound ways; we are curious to see what Kate ends up choosing to do with her life after dealing with all of this.

My mom is at the hospital with Anna tonight.  We have been blessed with some amazing consistency with Anna's nurses.  One of the night nurses has been with Anna a lot lately and has developed a good rapport with her.  She has been encouraging us to leave Anna in the care of the nurses overnight sometime, and not stay at the hospital.  After Anna's overnight tantrum last night, and how wonderfully her nurse dealt with it, we may take her up on that suggestion sometime this weekend, although that will be really hard for us to do.  But we may need to do it for our own health and sanity.  It's hard to believe that it has been almost six weeks since Anna's first diagnosis.

Time for prayers

Thanksgiving
Please give thanks for all of the positive relationships Matt and I have built with Anna's nurses and her care staff.
Please thank God that Matt, Kate, Ethan, and I were able to have an entire evening together at home tonight.
Please give thanks that my mom has been able to handle the stress of this week.
Please thank God for safe travels (so far) for Matt's family.
Please give thanks that Anna was in somewhat cheerful spirits at different points today, mostly when Kate was around.
Please thank God for the flexibility that Matt has had with work these last few months.

Requests
Please pray that Anna is able to safely receive adequate nutrition and gain weight.
Please continue to pray that Anna is able to make a full recovery from her various surgeries and procedures.
Please continue to pray for strength and wisdom for Matt and I as we make decisions on a daily basis that affect our whole family.
Please continue to pray for Anna's care givers at the hospital.
Please pray for Kate, especially, as she struggles with how to deal with her emotions.
Please pray for all of the Mischnick family as we plan on spending time together tomorrow at the hospital.

Thank you, again, for your prayers and support.

Everyone has a story.

One of the lessons I've learned recently is that everyone has a story to tell.  I think I always knew this, but after our recent experiences, I realize it even more.

When Matt, Kate, Ethan, and I went out to lunch the weekend that Anna was on the ventilator, a manager of the restaurant came around just to check on us and see how things were going.  He said something like "Do you guys have any plans for your weekend?"  Matt and I simply looked at each other and responded with something vague about how we were just going to hang out at home.

Whenever we are doing the kinds of things normal people do under normal circumstances (grocery shopping, filling up the car with gas, driving to and from the hospital, etc.), we are more acutely aware that we have no clue what the people next to us are dealing with at any given time.  Just looking at us when we do these things, no one would necessarily know our story, so how can we have any idea of what someone else's story might be at that point in time?

At the hospital we have met some amazing people.  Not just because they are really good at their jobs (and they are!), but because they are genuinely good people.  Given other circumstances, I would love to be able to sit down over lunch, or a cup of coffee, or a beer (assuming I'm not too tired), and hear their stories.  Where do they come from?  What is their life like outside of the hospital?  What are their days like at the hospital when they are not in our room?  Do they have any kids?  What are their kids like?  What made them decide to become a nurse, or a doctor, or a therapist, or a cashier or housekeeper at a children's hospital?

How do you live at a hospital for weeks on end, go through the kinds of experiences we've gone through, and be expected to not build relationships or even friendships?  (Especially if you're someone like me who likes to make new friends.)  And yet we're daily trusting these people with our daughter's life.  Still another part of life for which we were unprepared.  At least I'm starting to be known by my first name here and not just "mom" :)

Enough of that.  We made it through our "second Wednesday" without anything too major.  Anna had to be retested for c.diff again today (that nasty intestinal bug she had at the beginning of the hospital stay which required us to be on isolation); the results came back positive.  So we're back to wearing yellow gowns.  Oh, well.  At least we know how to deal with it this time.  Our 24 hours without the gowns was nice.

Unfortunately, when a kid is positive for c.diff, they aren't allowed to take anit-diarhea medicines because the goal is to get the bad bugs out of the system, not keep them in.  However, one of the side effects of Anna's radiation is loose stools, so her poor body is having a hard time keeping any nutrition in her system.  We switched her today to an easier-to-digest formula; hopefully that helps her a bit.

Anna's day involved her XRT, speech, and OT/PT therapies, in addition to many visits from doctors and nurses.  She also had a visit from some of her church friends (which included their moms, who are my church friends).  Anna really likes seeing her friends, but it can be hard on them to see their friend who doesn't exactly act like the same Anna they remember.  Still, Anna likes to see other kids.  She's been cooped up with lots of grown-ups for a long time and just misses seeing other people her age.

Tomorrow we have a scheduled care conference to discuss Anna's progress and think about when and how she may be able to visit home.  A day pass this Saturday is a possibility, but I'm not sure that Anna is quite ready.  I told her that going home for a day would require sitting in a carseat twice and sitting in her wheelchair at home.  When I asked her how that made her feel, she said it sounded tiring :(  If it doesn't happen this weekend, maybe she'll be strong enough for a visit next weekend, assuming that she continues to improve.

I also talked to Anna this week about how she will lose her hair; in fact, it's already started slowly coming out.  I told her that she doesn't have any control over whether or not it falls out, but that she has control over how it comes out and what to do once it's out (hats, a wig, or nothing).  At this point she could have a fun haircut and style now, get it cut really short now, or just wait for it to fall out.  She chose to have it cut short; we'll see if she sticks with that choice tomorrow.  If she does, she may have a new do by the end of the day.

Time for prayers

Thanksgiving
Please give thanks that Anna is continuing to tolerate her treatments well and that her side effects haven't been too serious yet.
Please thank God that my mom has been having the wisdom and strength to make it through this week; she's "on duty" at the hospital tomorrow from about lunchtime through Friday morning.
Please give thanks for all of the little supports that we have been receiving from friends and family.
Please thank God for the strength and encouragement that Matt and I have been feeling lately.
Please continue to give thanks for the wonderful care Anna is receiving; it's truly second to none.

Requests
Please pray that Anna's new feeding plan helps her gain weight.
Please pray that Anna's little bottom doesn't become too sore; any kind of diaper rash can be dangerous for a kid on chemo.
Please ask God to be with Matt's grandmother, who is in ill health.  She was transferred from her nursing home to a hospital this week.  Please pray that she and her family feel God's presence during every step of her journey.
Please pray for Matt's family (parents, sisters, and family) as they all plan on travelling here to Madison this coming weekend for a quick hello and visit.
Please ask God to give my mom strength and wisdom as she plans on another long shift here at the hospital.

Thank you, as always, for your prayers and support.

We need clones.

A few weeks back Kate had a good idea.  She said that there should be three mommies and three daddies: one to be at the hospital with Anna, one to be at home with her and Ethan, and one to do the work.  I agree, except that maybe there should be a fourth who would do the sleeping :)

We just feel like there is so much to do and we wish that we could be in more than one place at a time.  I want to be at the hospital to be with Anna, because I think that this is best for her, because she wants me there, and because I like to have the control that comes with being present.  I want to be at home with Kate and Ethan, because I think that this is best for them, because they both want me there, and because I like to have the control that comes with being present.  But I also need to do the "work" that needs to be done.  Phone calls; organizing who will be eating what, when, and where; figuring out who will be sleeping where on any given night.  I like to be in control of those things.  And then we have to make sure that we have the right carseats in the right cars at the right time.  I dropped the ball on that one this week.  Oops.

We're trying to let go of as much as we can, but, especially for our kids, consistency with their caregivers is best.  So we're doing our best to keep our heads above water, and letting go of a lot of the things that don't really matter.  And, amazingly, our kids are resilient.  It's probably best that they are learning early on that the world does not revolve around them individually.

In fact, Ethan seems to be bouncing through this stage of life quite easily.  A case in point was how he behaved during the benefit on Sunday.  At first he was pretty overwhelmed and didn't want me to set him down or pass him off to Matt or my mom.  But by the end he was running through the silent auction area, almost looking for ways to get under everyone's feet.  Then he would take off down a hallway of the high school, searching for a quieter place where he could still roam.

He also still loves anything with wheels.  Last week when Melissa took him to a friend's house to play, he was shy and reserved at first.  But soon he collected almost every toy car and truck and had them piled on the table.  Then while Kate and her friend were playing in a different room with Polly Pockets, Ethan ventured in, found one of the two Polly Pocket vehicles, and brought it out to add to his collection.  He rarely goes anywhere without a matchbox car in one, or both, hands.  Silly boy.

Kate is having a hard time with the changing caregivers.  She's gotten away with a lot in the past five weeks and so when Matt or I hold the line with her, she fights back.  I miss our cooperative, easy-peasy lemon squeezy Kate.  It's probably all due to the unpredictability of life right now.  Or maybe it's just because she's 4 1/2.  Either way, we've decided that we're going to continue setting clear expectations with her, but we realize that we'll have plenty of time to correct any behavioral slips when life isn't quite as crazy.

Anna had a good "first Wednesday".  Hooray!  My mom was with her most of the day, until I brought the other kids there this afternoon.  Matt showed up in time for us to have dinner in Anna's room before I brought the younger ones back for bed.  Anna was up in her wheelchair several times again today, had her radiation (XRT is what they call it at the hospital), physical and occupation therapies, and speech therapy.  She had an art exploration field trip with grandma this morning, a chance to visit the playroom on P4 and watch Kate and Ethan play this afternoon, and also an opportunity to meet one of the Pet Pal dogs with Kate and Ethan this evening.  As I look over this list of her day, I realize that it is probably more activity and stimulation than she has had in a long time.  Hopefully, everything will continue to look better.

One of the current concerns for Anna is her weight.  She had been losing weight for a week or two before she was admitted to the hospital, then continued to lose weight until she was intubated two weeks ago.  At that point she started putting on a few pounds, finally.  However, this week she has lost weight again.  She hasn't been nauseous in several days (thankfully), but her feeds seem to be going right through her so that her body doesn't have much of a chance to absorb any nutrients.  The nutritionist, nurses, and I are working on how we can fix this problem.  Getting adequate nutrition is a big deal for kids undergoing chemotherapy.

Matt is with Anna tonight; I'll be with her tomorrow and tomorrow night.  My mom is planning on staying with her again overnight on Thursday so that Matt and I can have another evening here at home together.  Hopefully, everything goes as planned.

Time for prayers

Thanksgiving
Please give thanks for the strength and energy (physical, emotional, and spiritual) as she went about her night and day with Anna at the hospital.
Please thank God for the opportunity for me to drop Kate off for preschool today and pick her up again; I haven't done that in a long time.
Please give thanks for the good health for everyone in the family, Anna's cancer not included.  Since this all began, none of us have had serious colds or illnesses.
Please thank God for the relatively consistency that we have been able to have as a family in terms of caregivers for the kids.
Please thank God that Anna has had a whole week now without major surgeries or other invasive procedures.
Please give thanks for all of the people at the hospital who are caring for Anna.

Requests
Please pray that the chemo and radiation is 100% effective in Anna's case.
Please pray that Anna experiences few (or no) side effects from the treatments she is receiving.
Please pray that we can figure out a way for Anna to safely gain some weight.
Please continue to pray for strength and wisdom for my mom as she has a day with Kate and Ethan tomorrow (which involves lots of experiences getting into and out of the car).
Please continue to pray for Matt this week as he balances work, home, hospital, etc.
Please continue to pray for Anna's caregivers at the hospital.  Whether or not they realize how many people are praying for them, I know God is working through each one.

Thank you, as always, for all of your prayers and support.