Still going

We are still plugging along here, with some good and some bad parts.  First the good.

My mom is helping us out this week.  She spent Sunday with Anna so Matt and I could be home for a bit with Kate and Ethan.  Anna was officially transferred out of the PICU and back onto P4 on Sunday afternoon.  We were able to move back to our old room, thanks in part to our status as "frequent flyers".  Kate and I came to the hospital on Sunday afternoon to have some girls' time before my mom brought Kate back home.

Anna had multiple pictures taken of her body today ... a quick brain MRI, an abdominal ultrasound, and a echocardiogram (I think).  The MRI showed no change from Saturday night's MRI ... still good news.  She will have another repeat quick brain MRI on Thursday to continue to assess her need for a shunt.  The abdominal ultrasound showed that the infected fluid pocket from the shunt infection is smaller than it was for the last ultrasound.  I'm not quite sure how much smaller, but any bit smaller is good.

I have not yet heard any result of the echocardiogram.  The purpose of this one is to check out Anna's heart one more time before her blood pressure medication is switched.  Since the current theory is that Anna's heart is working overtime because of a brain issue and not a heart issue, the idea will be to transition her to a medication that will help control her blood pressure as well as her heart rate.  The hope is that if and when the cancer is gone and any residual inflammation is also gone, her brain will heal and she will not necessarily need these medications.  However, the cardiologists want to make very sure that Anna's heart is A-okay before starting something else.

Because of the extra procedures today, Anna was not up for much therapies.  However, I was able to get her into her wheelchair three times today and she has been working on a variety of "projects" to help her regain strength and muscle control of her arms.  We're back to baby steps in terms of what her body can tolerate.

I was having a hard time emotionally today, in part because I didn't sleep well last night.  We are back to sleeping in Anna's hospital suite on a fold-up couch, although we still have a door between Anna's room and our little room.  However, it is not quite as comfortable as a sleep room.  Oh, well.  P4 has the bonus of relatively consistent nurses.  Each location has its ups and downs.

Contrary to life outside the hospital, so many people here have seen me emotional and crying.  It's hard to stop the tears on hard days.  Oh, well.  I have decided that it's a good thing for those working here to see just how hard this whole thing is for us personally and for our family.  When Kate and Ethan are here visiting, I don't have a hard time anymore asking doctors or residents to wait a few minutes, or having them watch a tearful good-bye.  We don't stop our facetime conversations anymore when someone else pops into the room.  I did not have the time to clean up my spread of insurance paperwork scattered about the floor today before others came by.  It is good for others to see the whole picture, at least I hope so.

Anyway, Matt stopped by this afternoon.  His visit cheered up both Anna and me.  The three of us had a rousing game of Uno before he went back to work.  But then Anna had a tantrum for awhile before seeing her favorite nurse and calming down.  At least all of Anna's yelling gave her some good lung exercises :)  And I don't think she will lose her voice after this round.

The current plans to go home are depressing.  If Anna's cardiovascular medication is changed, it will probably take a few weeks to make the transition.  During that time she will need to be watched closely to make sure that things are going smoothly.  So ... we're probably looking at a few more weeks, at least.  :(

Time for prayers

Thanksgiving
Please give thanks that we are back in our old room and no longer needing the services of the PICU.
Please thank God for the familiar faces of the nurses on P4.
Please give thanks for all of the doctors and nurses involved in Anna's care.
Please thank God for the flexibility of my mom's life so that she can help us out for a week at a time.
Please give thanks for family.
Please thank God for the continued support our family is receiving.
Please give thanks that the continuous feeds (as opposed to a more "meal" schedule) Anna is getting seem to be working for her right now.

Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for strength, wisdom, rest, resiliency, and hope for our family.
Please continue to pray for all of Anna's care staff at the hospital.
Please pray that Anna's cardio issues get resolved quickly and safely.
Please pray that Anna feels warmer ... she is cold almost all the time.

Thanks, as always, for all of your prayers and support.

Frustrating week

We have been here long enough now to encounter some frustrations that patients normally do not encounter during a hospital stay.  Basically, there are so many different teams involved in Anna's care that switch attending physicians and/or residents on an often weekly basis, but she does not have an overall care coordinator.  Plus, since she is not needing critical care while on the PICU, her nurses are often different.  When you are watching someone's neurological status very closely, consistency with the "watchers" is key.  Neither Matt nor I can be present here 24 hours a day 7 days a week, and we can only communicate so much with one another and the nursing staff about what different days are like.

So ... Thursday night Anna's EVD was leaking fluid.  The PICU team thought this was a pretty good sign that her body could not handle the pressures inside her brain; the neurosurgeon thought otherwise.  Either way, the site around the drain needed to be sealed up; if fluid could come out, stuff could also get in ... not good.

Anna was up for a procedure on Friday morning to have the area around the drain sealed off a bit, but because of the way her skin was leaking/healing, it was not possible to just put in a few stitches.  So her EVD was removed to see how she could do.  That meant that her neurological status needs to be watched closely for a few days.  If she shows signs of increased pressure, then she needs a shunt.  If not, then she doesn't.  But no one knows how long it may take for her to show clear signs.

Friday afternoon and Saturday Matt was with Anna.  She had a nurse on Saturday who had previously only been her nurse at night.  Both were concerned on Saturday that Anna's status was declining.  She was more nauseous, seemed more tired and less interactive, and complained off and on of head pain.  So she had another quick brain MRI to see how things looked on the inside.

There are so many layers to Anna's mental status every day that it is difficult for even Matt and I to correctly assess her neurological status.  We may be the experts on Anna, but we are certainly not medically trained professionals.  How do we know if she is throwing up because of something going on in her brain, because of one of the meds she is taking, or because her body just cannot tolerate her feeding regimen?  How do we know if she is tired because of something going on in her brain, because she hasn't slept normally in three months, or because she physcially exerted herself?  And if we don't know, how will a doctor who only checks on her for less than 5 minutes once a day know?  To make matters even more challenging, the day before Anna was diagnosed with brain cancer, she was perky for a few hours in the morning, playing cards with me, and even asking to eat some food.  But that was just a high point during an otherwise downhill kind of day.

And then there are the "politics" of the different teams interacting with one another.  We were completely unaware of this even a month ago.  Now, unfortunately, we are aware that in a hospital, just like in any other workplace, different teams have different reputations.

(The above rant was written while I was waiting somewhat impatiently to hear the results of the MRI and find out where Anna would be sleeping tonight.)

Anyway, I just found out (because our nurse advocated for the higher ups to come and talk to me) that Anna's MRI from this evening is unchanged from her one from Wednesday night.  Good sign.  She will be allowed to sleep in her room tonight, but tomorrow will be moved back to P4 ... hooray!  Except that means all of the staff over there will be educated on all of the stuff that has happened in the PICU in the last month.  Most of them already know the basics, but still ... another transition.  At least it is a step in the right direction, we hope.

Time for prayers

Thanksgiving
Please give thanks that Anna, so far, does not need a shunt.
Please thank God that I get to sleep in a sleep room one more night (instead of in the room with Anna).
Please give thanks for vigilant parents and nurses, as well as the rest of the hospital staff who are continually caring for Anna and our family.

Requests
Please pray that Anna really, truly does not need a shunt.
Please ask God to strengthen Anna's body each day.
Please pray that all the pieces of Anna's care are soon resolved.
Please ask God to grant our whole family strength, peace, wisdom, rest, and hope.

Thanks, as always, for everything.  I'm going to bed now.

Good devotion

Today's Lutheran Hour Ministries Devotion is worth repeating.  I hope I am not infringing on any copyright laws by repeating these words.  They apply very directly to our situation.

"Thy Will Not Mine"
April 26, 2014
Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. Proverbs 3:5-6
It is the rare person who doesn't, at least once in his or her life, ask, "Where is God? Doesn't He care?"
Amazingly, both believers and unbelievers ask that kind of question. Of course, there are some differences, some major differences. Because he has already seen the commitment of Jesus Christ, the believer doesn't wonder if God wishes to be involved in his particular situation. Even though he may not understand the Lord's will or timetable, the believer has faith the Lord cares. Said another way, the believer's question would sound something like "Why hasn't the Lord revealed Himself in a way which I am able to understand?"

In contrast, when the unbeliever asks these questions, he is using those words to tell everyone that the Lord really doesn't care about him. His line of reasoning is

1. there is no God;
2. if there was a God, He would listen to me and instantly do what I want and when I wanted it;
3. since I'm not getting what I want, quite obviously there is no God.

All in all, the difference between the two is a simple one: in difficult situations the believer continues to acknowledge God's wisdom and control. His prayer is one which requests patience and the ability to say, "Thy will, not mine, be done" (see Luke 22:42). In the same difficult circumstance the unbeliever challenges God to prove him wrong by showing that He is willing to take orders from the skeptic who confesses he has no faith in the Lord.

Now I know that may sound a bit theoretical, so let's make it a lot practical. Turn to the Gospels and take a look at two stories from Jesus' life. The first is when He is with His disciples on the storm-tossed Sea of Galilee. In frustration, fear, and with a shaky faith, they come to Jesus saying something like, "Lord, if you cared about us You'd do something about this storm." That's when Jesus stood up and silenced both wind and wave with a word. At the same time, He rebuked His disciples for their lack of belief (see Mark 4:35-39).

The second instance of someone asking about Jesus caring is when He hung on the cross. There, one of the malefactors turned to Him and said, "If You really are the Christ -- something which I truly doubt -- then prove it by saving Yourself and us" (see Luke 23:39-43). You see, there was no burning flax of faith present in the man's words. They were just doubt and challenge. To that man Jesus says and does nothing.

So, my dear Daily Devotioners, I leave you with a story which may help you understand if the Lord cares.

The story begins with a man whose barn had been struck by lightning and was on fire. When the blaze was being battled, the farmer tried to call his insurance agent. When he got no answer, he started to express worry and frustration. Loud enough for others to hear, he asked, "Where is that insurance man when you need him?" At that moment, the volunteer fireman shouted above the noise, "I'm here putting out your fire."

That's the Lord. He may not be where we think He should be, and He may not be doing what we think He should be doing. But He's there, and He's acting, and He is doing the best by us.

Always.

THE PRAYER: Dear Lord, when difficult times arise in my life, help me remember You are still there and You still care. Let me see that the love which sent Jesus to save me will also continue to take care of me. In Jesus' Name I ask it. Amen.

More medical lingo

Every week we seem to focus on a different aspect of Anna's care.  "We" meaning whichever doctors, nurses, residents, fellows, etc. who are working that week.  Two weeks ago it was the shunt infection; last week it was blood pressure and PRES; this week it has been Anna's high heart rate and clamping the EVD.  Hopefully we are removing more layers these days instead of adding them.

I'm going to try to sum up Anna's medical experiences the last few days.  That may be easier said that done.

Anna had a few different heart checks this week (I don't remember the names anymore).  Long story short, her heart is working fine, if a little on the low side of normal.  The best guess is that her heart is a bit tired from working overtime for the last few months ... all the more reason to get her tachychardia under control.  The cardiologist thought that the reason for her symptoms of fast heart rate and high blood pressure are probably seated in the brain, considering all that it has undergone in the last few months.

So ... Anna is having some special labs done to see if that is the case.  If so, we will be working with the endocrine team to figure out how this can be managed with medication.

In addition, the neurology team was asked to look at Anna's recent brain MRI more closely to see if they could find any reason for these symptoms.  They saw "something" (I'm not sure exactly what they call it) to make them think that Anna's brain could have received some permanent damage in regards to her hormonal control centers in addition to her peripheral vision.  This could either have been from the cancer itself or from the radiation.  No one knows whether or not this is actually the case, or if it is permanent.  We have been aware all along that Anna would probably experience some permanent damage to her central nervous system.  It appears that this may be the first of these effects.

Also, since her EVD has been clamped since Sunday, her neurological status has been watched very closely.  Although most of her neuro signs are improving each day, she was increasingly nauseous this week.  Yesterday in the evening, she complained of nausea again, as well as her head hurting.

On a side note, it has been hard to gauge Anna's pain.  She has been in so many different kinds of pain over the last three months, and at such different states of awareness, that at times I'm not exactly sure she knows what kind of pain she may be experiencing.  Sometimes she is very lucid and can be very in tune with her body; other times she is not.

Anyway, last night a quick brain MRI was ordered so that the ventricles in her brain could be assessed before she was unclamped.  Of all of the MRIs Anna has undergone, I think this was the first for which she was fully awake.  She told me that the noise hurt her ears; it is pretty loud in there.

Anna was unclamped overnight, but didn't drain any fluid.  When the neurosurgeon stopped by this morning, he asked the nurse to readjust the transducer (which registers the ICP levels), clamp Anna again, and he would check her out at the end of the day.  (He said all this to Anna's nurse and me, but it was up to us to relay the information to the PICU team; we've been here long enough now to recognize some of the interplay between the different teams ... but I digress.)

Anna did fine during the day being clamped.  The neurosurgeon stopped by again this evening, decided to give her one more night, but if she does okay then the drain comes out tomorrow and no shunt goes in ... hooray!  We'll take these small victories :)

Anna also had a slight fever overnight ... and was a little warm today ... no one really knows why.

Is that all of the medical stuff from the last two days?  Probably not all of it, but at least it sums up the biggest stuff.

As for Anna's rehab and mental state, she is continuing to improve.  As one of the physical therapists told me this week, Anna has conscious control of her muscles.  Her weakness and coordination problems are more connected to the trauma her brain has experienced (cancer, radiation, infection) as well as all of the "deconditioning" that she has experienced in the last three months.

Some physical and mental highlights for us today, though, were hearing Anna sing some nursery rhymes and songs from her Kindermusik class, participating actively in therapies, and playing Uno with me at the end of the day.  Granted, Anna's singing pitch is a little off, and her voice is not very loud, but she remembered all of the words and was singing :)  Anna's nurse, who has been with us off and on in the PICU since February 3, was impressed.

Anna has also been in her wheelchair at least twice the past two days, in addition to participating in both occupational therapy and physical therapy.  This evening we even got her out of the room for a field trip around the PICU, the first time she's been out of her room for pleasure in three weeks.  Her body was understandably very tired this evening.

So things are hopefully moving forward.  We know that setbacks will continue to occur, but we really hope that those setbacks are not nearly as deep as the ones we've experienced in the last three weeks.

Time for prayers

Thanksgiving
Please give thanks that Anna may not need a shunt; that would be a miracle.
Please thank God that the PRES has mostly subsided.
Please give thanks for whatever consistency we can get with the hospital staff.
Please thank God for the support our family is continuing to receive.
Please give thanks for the improvements that Anna is making.

Requests
Please pray that the reason for Anna's high blood pressure and high heart rate are found and can be easily treated.
Please pray that Anna's fever was nothing serious.
Please ask God to grant our whole family peace, rest, strength, wisdom, and hope.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff at the hospital.
Please pray that Anna can safely come home soon :)

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

Being a mom

I miss being a mom.  A few weeks back, one of my hospital friends asked me if I liked being a mom; she commented that I seemed to really enjoy it.  I do.  I love watching our kids learn and grow.  Being a teacher at heart, I enjoy seeing the wonder that comes with each new experience.  A seed sprouting, a flower blooming, a bird singing.  Or in Ethan's case ... an airplane overhead, a truck driving by, construction equipment.  I love reading to our kids, snuggling with them, tickling them.  I like helping them find new strategies for solving problems, or dealing with new situations.  Kids can be pretty awesome, especially as they become more and more independent.

When Anna was born, we made the conscious decision for me to stop teaching so I could be a full-time mom.  At first, my feathers would get ruffled when someone would say "You're so lucky that you can stay home with your kids."  It was, and still is, a choice that has required sacrifices from us.  But it has been the best decision for our family; we wouldn't change things.  Now that I'm a little older, and maybe a little wiser, I  realize that each family's situation is unique and everyone has choices to make.  Each choice requires its own sacrifices and what is right for one family may not be right for another.

My first year at home with Anna was hard.  "Mind-numbing" is the phrase a friend once used.  After six years of teaching, the adjustment to being home all the time with an infant was challenging.  But we made it through.  Since then, we have seen the results of all the time, energy, and hard work we have put in as parents.  And we like our kids and our simple life.

Early on in Anna's hospital stay, someone asked if I worked outside the home.  When I told them no, they responded with something like "Oh, good!  Then at least you don't have to worry about taking time off of work!"  Except that I have been taking time off of my job as a mom to Kate and Ethan, and even to Anna.  In addition, we did not have the "luxury" of consistent childcare already in place for Kate and Ethan.  Most of my energies are spent coordinating life and medical care.

There is only so much time in a day, and only so much energy.  Another hard part of this whole experience is deciding where to put each day's parenting energy ... Kate? ... Ethan? ... Anna?  At what point do we use any of our energy for our marriage relationship?  Or our personal needs?  I miss being a mom and a wife.

But today was a good day.  After spending the night at the hospital last night and being around to meet today's nurse (who was a new one to us, again), I came home while Melissa spent the day with Anna.

I got to go to the library with Kate and Ethan, run into a friend at the library park, take Kate to school, plant some broccoli and more flower seeds, pick Kate up from school, take the two younger ones to Olbrich Gardens, and still come home with a pizza for dinner.  The pictures here are from our annual visit to Olbrich to see the first blooming flowers of spring.

 

When I'm getting ready to leave the hospital, people often encourage me to "enjoy the other kids".  I've had a hard time doing that on many of my "days off", mainly because I'm exhausted, the kids are out of sorts, and my mind and my heart are still with Anna.  But I tried to be intentional about my choices today ... and the sun was shining :)

From the nurse's perspective, and Melissa's, Anna had another relatively good day today.  The term the rehab coordinators use for Anna's last two and a half weeks is "deconditioning".  I remember an anecdote once about some college football players who were put on bed rest for a week; the extent of their deconditioning during that single week was surprising.  Any progress Anna made prior to her shunt infection was virtually lost.  But she is more and more awake each day and able to do more and more.  Hopefully the progress continues.  When I was with her yesterday she was willing and able to be in her wheelchair three separate times, with the last one lasting almost an hour.  Good work, Anna!

The nephrologists are finally happy with Anna's blood pressures, but now the cardiologists are involved because Anna has been tachycardic for most of her hospital stay (fast heart rate).  So ... Anna's meds may be switched to try to counteract both the high blood pressure and high heart rate.

As for Anna's clamped EVD, so far so good.  However, her neurosurgeon said that he would like to take things two days at a time.  If she can handle two days of being clamped (which she has), then he'll give her two more days.  Then, I presume, he will give her two more days.  At some point she'll need to have a quick brain MRI to see how her ventricles look before any decision is made about her needing a shunt.  Pretty much we are in a holding pattern in that regard.


 Time for prayers

Thanksgiving
Please thank God for gifting us with a beautiful day on my day out of the hospital; I cherish these even more than I did before.
Please give thanks that Anna's infections seem to have cleared up.
Please thank God that Anna's nausea has subsided since the weekend.
Please give thanks for some consistency with Anna's night nurses.
Please thank God for the flexibility Matt is getting through work these days.
Please give thanks for the continued support our family is receiving.
Please thank God for everyone involved in Anna's care at the hospital.

Requests
Please continue to pray for peace, strength, wisdom, rest, and hope for our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff at the hospital.
Please pray again for the perfect heart to come soon for baby Charlie; his family is also getting weary of living apart from one another.
Please pray that God reveals His plans for Melissa's future sooner rather than later.  She is looking for a full-time elementary teaching position for next year.

Sad holiday

Easter is not supposed to be a sad day.  And for most people, it isn't.  But for us, it is, because it reminds us of the life we used to have and the life we will not have again for awhile.  Now I better understand why holidays can be hard for those experiencing grief.

Anna was without mom or dad from Friday evening until Sunday after church.  Her primary nurse in the PICU was working on Friday, Saturday, and Sunday; her night nurse was going to be consistent; and my parents agreed to spend all day Saturday and Sunday morning at the hospital to give Matt and I some respite.

We (Matt, Kate, Ethan, and I) were thankful to be able to spend an entire day together on Saturday, but we also missed Anna ... sometimes a lot.  Since the weather was pretty nice, we spent part of the day outside in our yard after Matt and I sorted through the paperwork that has been piling up.  But Kate was lonely; she misses Anna.

For those of you who don't know our family very well, our daughters have always been very close.  They genuinely like each other and play together very well.  Ever since Anna started kindergarten last year, Saturday mornings were a special time for the siblings.  They often chose to stay home and play together instead of going and doing something with me on Saturdays.  Yesterday afternoon Kate was lonely, and sad.  She misses Anna.  She and I took the opportunity to be sad together for awhile, and then we went and planted some radishes, spinach, lettuce, and a few flowers for good measure.  But seeing how this is all affecting Kate is really hard for us as her parents.

When Ethan woke up from his nap, we took the two kiddos to the zoo.  Both kids enjoyed the outing, but it was challenging for me.  Seeing all of those people, with happy kids who were willing and able to go to the zoo on a nice Saturday, made me sad.  It also reminded me of how many families are out there who never, ever have to deal with childhood cancer.  I was mad all over again.  Anna was probably one of the healthiest 6-year-olds I know, also one of the sweetest and most caring, and pretty bright, too.  Why did this have to happen to her?

On a side note, there is no known cause for medulloblastoma.  One little cell has a random mutation and starts dividing uncontrollably.  That's it.  There are no carcinogens (food, environmental, genetic, etc.) that cause it.  Aside from standing in an x-ray machine for several days straight, it just happens without cause.  Not very often, but it does.

Easter morning was hard.  Anna loved Easter, and I hope still does.  Last year during the Easter service at church she wrote in her notebook "Allelulia!  Christ is risen!  He is risen indeed!  Allelulia!"  I missed our Lenten and Easter traditions, none of which we have done this year.  In years past we did devotions every morning during Lent; this year my dad even made us a candle holder to help us count down the days to Easter (we haven't used it once).  We don't "do" the Easter bunny in our house, or Easter baskets.  For a few years, we did "Spring Baskets" to surprise the girls when they got back from a trip to Grandpa and Grandma's.  This way we figured we could focus more on Jesus' resurrection on Easter.  It worked really well last year; Anna loved Easter morning, and there weren't even any present to open.  I miss that.

And then Ethan wasn't cooperating during worship this morning.  We have made the decision with all of our kids to keep them in church as much as possible, avoiding taking them to the nursery if we can.  We like to teach our babies and toddlers the rhythm of worship when they are young.  But the last few months have been hard with Ethan.  Our attention and energies have been focused elsewhere.  It was hard to keep him with us this morning, but we made it through (or at least until communion).

But then we had a really, really crabby boy on our hands as I was saying good-bye.  And then Kate was sad, too.  She's old enough to know to ask "When will I see you again, Mommy?"  Tuesday morning is a long way from Sunday morning, especially for an almost five year old.  Ethan isn't old enough to ask that question; he is often surprised by which adult is home when he wakes up.

So our holiday has been sad.

But things are still improving for Anna.  The doctors on the PICU are impressed by how awake she is each time she sees them.  She is still not back to where she was prior to the shunt infection, but she has only been recovering from PRES for a week.  Hopefully there are still more improvements to come.

Her drain was officially clamped to see how her body handles the cerebrospinal fluid.  The doctors have been pleased so far with how she has tolerated the fluid.

However, her blood pressures are still not where they should be.  Her meds were adjusted yesterday to continue to deal with that.  Also, she has been nauseous at least once a day for the last several days.  Anna's nurse and I are wondering if it is more related to some of her oral medications, instead of something going on in her brain (which is what it has always been related to before).  We'll see.

As for any plans for going home, the main two obstacles are Anna's EVD and her strength/stamina.  No one is completely sure about how long she will need to tolerate having her drain clamped before the EVD can be removed and the shunt replaced, if necessary.  Several days are needed, at the very least.  As of today, Anna would not be strong enough to pass any car seat test; she could only handle about 20 minutes sitting in the wheelchair in a very reclined position.  She knows that her job this week is to be strong enough to ride in the car seat all the way home, and to try different foods each day.  Hopefully, by the time of Anna's next surgery, she will be strong enough to come home.  We know life will be very different from any life we have had, but at least we will be together.

Time for prayers

Thanksgiving
Please give thanks for the time the rest of us were able to spend together over the weekend.
Please thank God for consistency with Anna's care staff.
Please give thanks for safe travels for my parents.
Please thank God for spring.
Please give thanks for the promise and hope that comes with Jesus' resurrection.

Requests
Please pray that Anna's treatments are 100% effective.
Please ask God to make it clear as to whether or not Anna needs a brain shunt.
Please pray that Anna's tummy settles, especially as more of the antibioitics are removed from her regimen tomorrow.
Please continue to pray for peace, strength, wisdom, and rest for our family.
Please pray that Anna's whole system settles out a bit after all of its disruptions recently.

Allelulia!  The Lord is risen!  He is risen indeed!  Allelulia!

Feeling hopeful ... again

It doesn't take much for our hopes to rise again.

Even though we felt incredibly alone spiritually last week, we know that God was with us.  He has given us all of our emotions, including anger, and I know that whatever sins we have committed during this journey (of which I am sure there are many), He will forgive us and will always welcome us back when we stray.

It's hard to imagine Jesus experiencing the kinds of struggles and pain that we have gone through in the last two and a half months, but during Holy Week, I am reminded that Jesus went through much worse.  Not only did He go through physical and emotional pain during His time here on earth, but his friends deserted him, and worse than that, His Father even turned His back on Him.  Our friends have never deserted us and, though it may feel like it at times, God has never left us.

Here is why we have hope again for Anna.

One of her antibioitcs, vancomyecin, has been stopped because one of the infections has been clear for 10 days.  She is still on two other antibioitics, but the plan is for those to be stopped on Monday assuming her cultures and tests continue to show no bacteria.

She is done with her radiation, and has been for 7 days.  Her radiation effects are peaking this week while she is sleeping a lot of the time.  On a side note, Anna has received all of the radiation therapy that her body will ever be allowed to receive.  If any cancer recurs, she cannot have radiation.  So she never has to go through that again.

Anna is back on her feeds and officially off of TPN again.  We had the discussion this morning about how we can adjust her feeding schedule to make it more comfortable for us when Anna goes home (meaning no nighttime feeds).

But best of all, this morning when I got to the hospital (neither of us slept here last night), Anna was awake and alert.  She and I had a somewhat real conversation, which we hadn't done since last Friday.  I told Anna about a meeting Matt and I had yesterday with her first grade teacher and principal.  When I asked her if she remembered her principal's name, she recalled it correctly on her own!  And, after a nice morning nap, Anna smiled at a joke while some doctors were in the room; we haven't seen her smile in at least two weeks!  So ... her state of concsiousness is continuing to improve :)

One more hopeful idea, and this one definitely falls under the category of "shoot for the moon".  The reason Anna needed a brain shunt in the first place was because of the cancer.  Now that the cancer has somewhat receded, there is a very, very small possibility that she will no longer need a shunt.  We have been told that once the circulation system inside one's central nervous system is damaged, there is little hope for it to recover.  However, with all of the other crap that has happened in Anna's brain recently, enough other things could have been fiddled with for things to self-correct.  So ... Anna's system will be "challenged" by having the drain clamped to see if she can handle the fluid on her own.  No brain shunt would mean no risk of a future infection from the shunt.  We realize that the chances of not having a shunt are really small, but we can still hope.

So ... we are again hopeful.  I think I am in a better place today, too, because Matt and I were able to spend the most time together outside of the hospital yesterday than we have been able to do in probably three weeks.  We miss each other :(  Life is a whole lot more manageable together than it is apart.

One other part of life that I realized I have been missing is the give-and-take nature of relationships, and even conversations.  Normally, we don't think of ourselves as strictly "takers", but in the last few months, we have been "taking" a lot.  It is a humbling experience.  I miss being able to give back.

We have tried hard to at least maintain a bit of give-and-take in terms of our conversations and interactions with others.  I like to ask the nurses, therapists, etc., about their lives and families, and when we are out and about, I try to ask others about the rest of their lives, too.  We find that it is easier to take the focus off of ourselves and our current struggles; it helps us remember that the rest of the world is continuing to function, regardless of Anna's diagnosis.  So don't be surprised if we ask you about your life the next time we see you :)

Time for prayers

Thanksgiving
Please give thanks that Anna's PRES is continuing to resolve itself.
Please thank God that Anna is able to tolerate her feeds again.
Please give thanks that Anna's infections are clearing up.
Please thank God for the opportunity for Matt and I to see each other yesterday.
Please continue to give thanks for the amazing care Anna is receiving.
Please thank God that He did not desert us in our hour of need.
Please continue to give thanks that our friends have not deserted us.
Please thank God that Anna can sleep.

Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for Anna's care staff at the hospital.
Please ask God to heal Anna's body, from cancer, radiation, chemotherapy, infection, surgery, and PRES ... whew!
Please continue to pray for peace, strength, wisdom, and hope for our family.

Thank you, especially, for putting up with my sadness and tirades of the last few weeks :)

On a final side note, I just met another doctor, a different nephrologist (kidney specialist) than the one we have spoken with recently.  She was trying to figure out why Anna's blood pressures were so high and how she ended up with PRES.  After answering some of her questions about Anna's history and explaining my theory about the events leading up to PRES, she agreed with its logic.  I guess I'm doing an okay job of being the general contractor, even if most of it is in hindsight.

Learning more

We have learned an overwhelming amount of medical information and jargon over the last 10 weeks, and today was no different.  In trying to better understand Anna's current condition and its causes, I asked a lot of questions today.  I'm going to share what I learned because, frankly, I find it interesting.  And it's good for me to know as Anna's mom and "general contractor" (as Matt called me recently).

Anna has been hypertensive (high blood pressure) during most of her hospital stay, in part because of life in general for her, but also in part because of the steroids she is taking and will continue to take for most of her chemo treatment.  She has often also had even higher blood pressure when coming out of anesthesia, which does not usually happen for most patients.  No one really knows why this is the case for her, but most of the time her blood pressure comes down on its own within about a half hour.

When Anna's shunt infection presented itself, she was started on some pretty heavy hitter antibiotics.  One of these antibioitics, vancomyecin, when given through an IV can cause kidney troubles.  Last week on Tuesday morning, the vanco levels in Anna's blood were dangerously high.  The necessary precautions and adjustments were made with the vanco.  The next day one of the labs she gets every day showed an elevated amount related to her kidney function.  But the numbers started coming down the next day, and no one was particularly worried.  We now know that Anna experienced an acute kidney injury at this point, which then in turn affects a person's blood pressure.

On Friday night Anna had her EVD replaced.  When she came out of sedation, her blood pressure was high, but this time it remained high for most of the night.  Based on Anna's symptoms, we now believe this is when the PRES really began.  Her symptoms from PRES peaked on Sunday night, in our opinion.

I ran this scenario by a few medical professionals today and, although no one will ever know for certain exactly what happened, they agreed that this was a pretty logical explanation.  In addition, one of the chemo drugs Anna received for 6 weeks is a related drug to one that is know to have a correlation with PRES, given the right circumstances.  (Hopefully that makes sense.)

So ... now we know a possible reason for why it happened.

I also tried my best to get a better understanding of what exactly PRES is and what it looks like in a patient.  Without having a medical degree, I realize that I try to oversimplify some things, but at least it helps me grasp the bigger picture.  I ran the following explanation by the head neurologist this morning and he agreed that it was a decent, if basic, understanding of PRES.

Every person's state of consiousness waxes and wanes.  (If I could use my hands right now, I'd show a wave motion as I describe things.)  Sometimes we are really awake; sometimes we are just awake; sometimes we are drowsy; sometimes we are sleeping lightly; and sometimes we are sleeping deeply.  When a person experiences PRES, their baseline state of consciousness is altered, and then even that waxes and wanes.  (Again, if I could use my hands, my wave motion would be lower.)  Their really awake times might be similar to a normal person's drowsy times; during what would normally be a resting time, a person with PRES would be sleeping; and their deep sleep is really, really deep sleep.  As the body takes care of the added fluid in the brain, their state of consciousness slowly returns to normal.  (My hands would continue the wave motion, but it would be going slowly upwards ... I'm such a teacher at heart :)

Another way that has helped me understand things is trying to remember when I've woken up in the middle of the night and felt disoriented and confused (which has actually happened more than once in the last few months ... Where am I sleeping again?  Which way is the bathroom?  Who just walked into the room? ... but you can't even put these thoughts into words most of the time).  Several times when Anna has been awake since Friday she has seemed very disoriented and confused.  At times she was unable to follow simple commands like squeezing someone's hand or wiggling her toes.  Now we know why.

So ... that is my understanding of PRES in a nutshell.

Here's the sliver lining.  The second letter in PRES stands for reversible.  Her altered state of consciousness and responsiveness is not permanent.

Also, the sleep that Anna is getting right now is natural sleep, not drug-induced sleep.  However weird it may be, her body is getting more restful sleep this week than it has in months.  I asked one of the doctor's about this thought and he agreed with my opinion.  Hopefully, all the sleep will do more good (in terms of helping her body heal from radiation, surgery, and chemo) than harm (in terms of less activity and rehab).

The other positive is that we know the cancer has receded.  Since the MRI results lag a bit from the clinical observations, and since Anna's brain MRI was utterly abnormal (cancer, radiation, shunt infection, EVD placement, PRES ... too many layers), no one can say how much the cancer has receded, but the original tumor is definitely smaller than it has ever been on an MRI.

It all still sucks, but not as bad as it did on Sunday.

Today Anna's awake times were more "awake" than she had been since Saturday, but not as "awake" as she was on Friday.  Clinically, she has been improving since Sunday.  Medically, her numbers are also improving.

The main task for the doctors right now is to figure out what is going to work best to keep her blood pressure within a safe range until her kidneys heal completely from the injury (which they already are), and then how to treat her blood pressure until she is weaned off of her steroids.

Our main job is to keep our heads above water, with God's help (and everyone else's) we are still managing to do just that.

Your job is to keep praying.

Seriously?

This afternoon Anna was diagnosed with PRES, a condition in which parts of the brain leak fluid due to suddenly high blood pressure, more often occuring in patients who have recently undergone chemotherapy.  Feel free to "google" it if you want more information.  Apparently, it is not very common; even the nurses had to look it up after the diagnosis was made.

Last night Anna had a detailed MRI done of her spine as well as a quick brain MRI.  These tests began at about 10 p.m.  Anna was intubated to "protect her airway", which was probably a good idea since Matt and I weren't the only ones worried about the cancer growing again.  Anna came back to the room at about 12:30, but we were told that the results would not be read and made official until sometime in the morning.  Matt and I were very prepared to hear the worst, that in the 2 1/2 weeks since Anna had targetted radiation her cancer had grown back.  All of Anna's symptoms yesterday were similar to the symptoms in the days leading up to her having difficulty breathing.

The good news from the spinal MRI was that the lesions from the cancer were much smaller and that the inflamation usually attributed to radiation had subsided.  The good news was also that there were no blockages in her spine causing her weakness in her extremeties.

The bad news was there was no answer yet for her changes.  The quick brain MRI, however, showed some changes since her scan from April 4, so a decision was made this morning to have a detailed MRI done to learn more.  At the same time, the doctors also wanted to do another abdominal ultrasound to check the fluid pocket in Anna's abdomen.

At that point, Matt went back home and I stayed to deal with things here.

Anna was doing mildly better this morning, but was still much worse than she was on Friday when I was here.

Nothing happened for much of the morning because Anna had to be NPO (nothing in her tummy) for several hours before anesthesia again, and she was sleeping much of the time.  I was getting frustrated because we were being given minimal information about Anna's changes.

In our months here, I have learned what words to use and to whom to speak if we want things dealt with in a timely fashion.  After a few conversations/questions on my part, the "right" people came to talk to me and give me a few possible scenarios.  One idea was that the fluid in Anna's abdomen was infected and causing a different kind of infection in her brain; another thought was that Anna had some kind of blockage in her brain; the third idea was PRES.

Anna's MRI happened earlier than expected (which is a wonder in itself after the lateness of the past few days' procedures and tests), and the results were shared with me even before she was back from the procedure to suck out some of the fluid in her abdomen.  The neurologist (different from the neurosurgeon) met with the infection disease team as well as the PICU team before discussing things with us (Anna's primary nurse and me).

They shared several things.  First, Anna's ventricles are still slightly inflammed, most likely because of the recent infection.  Second, there is a bit of extra fluid between Anna's brain and her skull, probably due to the placement of the drain.  Third, the original tumor is much smaller than it has been on any previous scan.  Fourth, Anna has PRES.

This syndrome is responsible for all of Anna's recent neurological changes, is caused most likely by her recent higher blood pressures, and will clear up on its own once her blood pressure is under control.  The doctors met, discussed, and agreed upon a medication plan for her hypertension.  The fluid should be cleared up by Anna's body within 1-2 weeks, probably closer to 2 weeks because of Anna's current health status.  Sigh.  Until then Anna's rehab is pretty much back to square one.  But at least we know what kind of progress she can make, given the opportunity.

Fear, exhaustion, relief, anger, sadness, frustration ... all ... over ... again.

Thanksgiving
Please give thanks that Anna's recent neurological changes were not a result of the cancer.
Please thank God that Anna's condition is reversible.
Please give thanks for the people with whom we work at the hospital; some of them really know how to get things moving :)
Please thank God for the support our family continues to receive.
Please give thanks that I was able to take a nap this afternoon while Anna was having her MRI.

Requests
Please pray that Anna's body is able to quickly and easily deal with the extra fluid in her brain.
Please pray that Anna's neurological status improves faster than expected.
Please pray that Anna's blood pressure comes down.
Please ask God to continue to grant us peace, rest, strength, and wisdom.  (This list keeps getting longer.)
Please continue to pray for Anna's care staff at the hospital.
Please pray for a little guy, Tyler, whose grandparents I just met.  He is 10 months old and on the way to Children's because of respiratory distress.

Thank you for your thoughts and prayers; I don't know how we could do this without God's strength.

Mad at God

I have been holding back on writing about my anger because I didn't want to offend anyone or project the idea that we have lost hope.  But at this point, I don't care what other people think.  In fact, I want everyone to know that I am very angry at God, and I have been all week.  I can't get past this feeling, but maybe writing about it will help.

Up until now I have been able to see some purpose in things that have happened, even if we were not exactly in the center.  But I can see no good in Anna's current condition, in her being back on the PICU, and in how this is affecting our whole family.

What more does God want from us?  We have placed our daughter in His hands two separate times, and yet she is still with us.  Why?  We have given up control of so much, willingly and unwillingly.  What more does He want us to do?  When I have had these yelling conversations with my mom, she reminds me that maybe this is not about our family.  That makes me even angrier because it means we, especially Anna, are just pawns.

I know the Holy Spirit is trying to speak to me, which probably is in part a result of the hundreds of people praying about us.  When I get a card, listen to a song, hear Scripture read at church, or listen to a sermon, I am encouraged and reminded that we are not alone.  But those feelings last only briefly.  And then the sadness and anger set in again.

We are also becoming more and more aware that the doctors don't have all the answers.  I don't think we ever truly thought that they did, but we have always referred to them as the "experts".  However, the longer this goes on, and the more complicated Anna's medical status becomes, the less and less faith we have in the answers that the doctors give us.

Anna's "neurological status" has been declining since Friday.  She is more and more tired, physically weaker, and less cognitively "with it".  Matt did all the right things and told all the right people when he was noticing this yesterday.  But the answer he kept getting was that she was tired because of the radiation, and the infection, and the surgery.

Today we asked again.  The neurosurgeon said it could be because Anna has been having seizures, which is not uncommon with as much brain trauma as she has had.  So she had an EEG and it came back inconclusive for seizures, but she was started on anti-seizure medication anyway.  Later tonight she will have a long MRI done of her spinal cord to see how things look back there and to see if any questions can be answered.

When I started this post earlier today, I was still really angry.  Now I am more sad than angry.  I know in my head that we are never alone, but in my heart I feel lonely.  My mom reminded me today that God's mercy does not necessarily refer to our earthly life, but more to our eternal lives.  Even if I don't have much room in my heart right now for earthly hope (which Matt tells me I still should), we
still have hope for Anna's eternal soul.

Please continue to pray for us.

Still "punked"

Several weeks back, a nurse used the term "punked" in reference to a kid feeling generally out of sorts.  Anna is still "punked".  Though her fevers were trending downwards, the neurosurgeon thought that the bacteria had been present long enough with the drain in place that the bugs had most likely adhered to the drain itself.  We learned from the infection disease doctors last week that once a bacteria is adhered to plastic inside the body, it cannot be completely destroyed with antibiotics; the device must be removed.

So this evening Anna is having her fifth brain surgery, to remove the current EVD and replace it with a fresh one.  Hopefully once the new drain is placed, the megadoses of antibiotics she is receiving will take care of the rest of the bacteria, and then we can start counting down the days until she has had enough negative cultures to be considered free of the bacteria.

Today marks the seventh day in a row that Anna has had a fever.  She needed another blood transfusion today as well as several platelet transfusions to be prepared for the surgery.  Her feeds were stopped today in preparation for anesthesia this evening.  Her blood pressures continue to run high.  Her radiation effects are peaking at this point.

She's listened to a lot of books this week and watched a bunch of TV, when she's up for it.  She's really tired and doesn't want people to bother her.  I know she's feeling pretty punked still, and it certainly makes for some really long, sad days to spend together.

Matt is spending this weekend with Anna and I'll be with her for at least the start of next week, until we see how she's doing after this most recent surgery.  Matt is taking all next week off of work and, depending on how Anna is progressing, we may have a friend stay with Anna for a day or so at the hospital so that Matt and I can be home together again for a little while.  So many decisions are still being made, however, and so many people are involved in Anna's care, that we still feel pretty strongly about being the ones physically at the hospital until everything settles out again.  Besides, when Anna is feeling as sick as she is, she doesn't want anyone but Mom or Dad around.

We miss our life.  Matt and I miss being together in the same place and running our family as a together-team instead of as a tag-team.  We miss having all five of us together in the same place; so that it doesn't feel like anyone is missing.  We even miss our life back on P4; the freedom, the flexibility, and the relative fun.  This is really hard.

Time for prayers

Thanksgiving
Please give thanks for the relative consistency we have had with Anna's care givers (nurses and doctors) in the past two weeks; it is nice not having to review Anna's case again and again.
Please thank God for sleep rooms at the hospital; I don't know how we would do this if we were still sleeping in Anna's room every night.
Please give thanks for the flexibility of Kate and Ethan these days with their different care givers.
Please thank God for friends, both new and old, who have helped encourage me personally during this hard week.
Please give thanks for the continued support our family is receiving from friends; our fridge is always full and now our house is really clean :)

Requests
Please pray that we are able to feel God's presence during this journey; this last week, in particular, has felt very lonely.
Please ask God to grant Anna peace and healing after tonight's surgery.
Please pray that the bacterial infection is cleared up soon.
Please ask God to heal Anna's body this weekend, especially so that she feels better soon.
Please pray that Anna's treatments are 100% effective and that she experiences few side effects, especially during her upcoming chemotherapy.
Please continue to pray for strength, wisdom, peace, and patience for Matt and I, and any others directly involved in caring for our children and family.

"Trending in the right direction"

The doctors are telling us that Anna's fevers, white blood cell counts, csf cultures, and clinical observations are all trending in the right direction.  Her fevers aren't as high (although still over 100) and her csf tests are coming back with less bacteria each time.  The ones from the weekend did end up growing bacteria, it just took a little time for it to happen.  Everyone (especially the medical staff) was hoping and possibly expecting things to clear up a bit faster than they have been.

However, Anna's tummy and guts are still an issue.  She's having a hard time tolerating her feeds and often complains of tummy pains, even if it's not strictly nausea.  She was retested for c.diff today and that test, at least, came back negative.

Even though tomorrow is Anna's last day of radiation, we're going to be here awhile yet.  On a side note, the doctors opted to withhold Anna's last three treatments of chemotherapy which were meant to enhance the effects of the radiation.  They thought that at this point the chemotherapy would do more harm than good :(

Matt spent the day with Anna today while I was with the other kids.  None of us really have any reserves left.  Ethan's tantrums are becoming challenging.  Whether that is strictly because of who he is, or more related to the last two months, no one will ever know.  Kate is struggling with separation from me again, too.

But ... today after preschool I took the younger kids to the hospital and we met up with Matt and Anna.  The five of us spent a few hours together as a family, which we have not been able to do in about a week and a half.  I think those moments recharged us a little; we really miss living as a team.

After spending some time with Matt this afternoon/evening and spending the day with the other kiddos, I'm trying hard to look for positives.  So here are a few.

The resident who was on P4 for the last two weeks just happens to be the resident here on the PICU for this week (maybe next week, too?).  Any kind of consistency like that is good, especially since we have worked with him a lot already about Anna's nutrition and sleep over on P4.

Anna's nurses from across the hall have come to visit almost every day.

Anna will be working with the same therapists that she has had since she was first admitted to the hospital.

Anna's nurse today and for the next two days is the same nurse she had during her two previous stays on the PICU; we like her :)

Since the weather was beautiful today, and Kate was at preschool while Ethan was sleeping, I planted our peas in the garden.  A week and a half ago we started our broccoli seeds indoors, too.

Some friends from church are coming to clean our house tomorrow.  It's not exactly "dirty", but it's certainly not very clean, either.

Life on the PICU side of the hospital is much sadder.  I don't think we realized just how much sadder, though, until we had a chance to live off of the PICU for a few weeks.  The staff here is busy all the time because the kids here are really sick, so there's not as much fun and games as we were having last week on P4.  By Tuesday afternoon, I needed a break from the sadness, so while Anna was napping, I went over to visit our "P4 family"; it was theraputic for me.  It is reassuring to know that whenever Anna needs a hospital stay in the future, provided that she does not need the kind of care necessary on the PICU, she will be over on P4.

Time for prayers

Thanksgiving
Please give thanks for the season of spring; it seems to be finally on it's way here in WI.
Please thank God that Anna is improving, albeit slowly.
Please give thanks for all of the staff here at the hospital who is watching out for Anna in a special way.
Please thank God for healthy children.
Please give thanks for all of the support that our family continues to receive.
Please thank God that we have sleep rooms available to us while Anna is on the PICU.

Requests
Please pray that we can quickly and easily find a feeding program that works for Anna's sick and tired body.
Please pray that Anna is able to rest more comfortably at night; she has had several really rough nights since we moved rooms.
Please pray that Anna's fevers and other infection symptoms go away.
Please ask God to heal whatever is causing Anna's tummy to hurt.
Please continue to pray for strength, wisdom, and compassion for Anna's care staff.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for strength, wisdom, and patience for Matt and me.

Thanks for everything.

"Need You Now"

"Need You Now" by Plumb

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beatuy here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh, I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

Again, we thank you all for the support and prayers.  I wish there was more that others could do to help us, to somehow take this burden from our family, but everyone is doing everything they possibly can to help us right now.  We just have to keep putting one foot in front of the other to somehow get through this.

Yesterday was a long, long day.  Anna's day nurse ended up spending almost the entire day just with Anna (doing the bare minimum with her other patient), and still had to stay after hours for about 2 hours to finish up her tasks and paperwork.

Sunday night and Monday morning Anna's fever came back.  It never really went away completely, but it started spiking again pretty high.  The temperature was able to be kept a little lower with the help of Tylenol, but her fever symptoms (high heart rate, shaking, feeling cold, etc.) came back as soon as the medicine wore off.  Anna's CSF (cerebrospinal fluid) is being tested every day.  Although the cultures keep coming back without new growth, Anna's white blood cell count in her CSF came back much higher yesterday than it was on Sunday.  Infectious Disease was concerned that the staph (not spelled "staff", like I did earlier :) was not being effectively treated, so they switched up Anna's antibiotics yesterday evening.

In addition, Anna has a pocket of infected fluid in her abdomen.  Since the shunt drained into the abdomen, the bacteria was also being dumped there late last week.  The docs have told us that sometimes a person's body attempts to encase the infected fluid, and it appears that Anna's body has done that.  This particular problem may need to be treated in a different way, but we're not quite sure yet how that may happen.

Because of (we assume) all of the antibiotics, Anna's guts are all out of wack again.  An attempt was made over the weekend to start her feeds again.  However, yesterday the decision was made to start her right back up on TPN instead of going through the whole ordeal again with the feeds, especially since plans were made for Anna to be sedated in the afternoon (more on that later).  Even though Anna's feeds were stopped at about 10 yesterday morning, she pooped all night long, literally, and didn't sleep more than about 3 hours total.

Since Anna still has three radiation treatments left, one of the discussions yesterday was how to make that happen.  Because Anna's head now has a drain coming out of the right side, and she has the gauze surrouding it, the fit of her mask needed to be checked.  We tried about midday yesterday, without much luck.  They tried later in the afternoon with the help of sedation, and with a bit of trimming of the mask, they were able to make it fit.  This is good news for the radiation oncologists because then they didn't have to remake the mask and replan Anna's treatment.  However, the only way for this plan to work is for Anna to be sedated for her last three treatments.  We're okay with the actual use of the anesthesia at this point, but not for the reason.  She needs to be sedated so that she can't feel the pain on her incision when her head is clamped down.  :(

We have a new nurse today.  Imagine that.  With how long we have been here, we are working with a nurse we have never met.  Hopefully we don't have to see her nearly as much as we saw our nurse yesterday.

Please continue to pray for strength, wisdom, and healing for all, but especially for Anna right now.  God has already granted us many miracles during this journey; I hope He is still willing to give a few more.

Empty

We are empty here at the Mischnick home.  Physically, emotionally, spiritually.  Just empty.

This last week we made the decision for me to be at the hospital all week because we thought it would be the final push of our time apart.  We were coming to the end of this extended hospital stay, only to find that we will need to go on this way indefinitely.  Sigh.  Early last week I had the thought to ask a friend who has run marathons how you run the last few miles of the race; I wanted to see if she had any words of advice to get through the final push.  And now we have to keep going.

I've had a wide range of emotions since Thursday.  Thursday I was very sad because Anna was doing poorly again.  I thought at the time it was because of the radiation side effects or because of cancer spread, but now we know it was because she was starting an infection in her cerebrospinal fluid, as well as in her abdomen (that's where the shunt drained).  Think about that for a minute.  The fluid surrounding Anna's brain and spinal cord was (and still is) infected and inflamed ... as well as fluid in her abdomen ... on top of everything else she has been through.

Friday morning we were scared because no one knew yet why Anna was going downhill again.  I called Matt within minutes of getting to the hospital asking him to come join me; I didn't want to face the uncertainty of the day without him.  We had to find coverage for the other kids since Matt was planning on being home with them, but it didn't take too long for it all to get sorted out.

When the diagnosis was made, of course we were relieved because these kinds of infections can be treated.  But by the end of the day, I was frustrated again because we had to deal with the transition back to a different room, different nurses, residents, and doctors with whom we haven't worked in awhile.  They are the experts on "critical care", but not necessarily on hematology/oncology.  So we have the added role again of trying to make sure everyone is on the same page about Anna's needs and we are working with a different nurse almost every shift.  Sigh.

In addition, we are very, very disappointed because in the coming weeks we have to be even more apart that we have been lately.  Because many decisions and changes may be made this week, Matt and I want to make sure that we are the ones physically at the hospital with Anna.  And since we aren't as comfortable with these nurses yet, we plan on staying overnight at the hospital each night this coming week.  Sigh.

Today I was angry.  It's really, really, really not fair.  We knew that setbacks in treatment were common, but this has the potential to be a long setback in terms of any plans to go home ... most likely weeks.  And as long as Anna has the drain in place, she won't be granted much freedom of movement outside of the PICU ... day passes on the weekends are no longer an option nor are field trips around the hospital.  In addition, we have to call the nurse in every time Anna needs repositioning so they can appropriately adjust the height of the drain.  I already miss the independence we had earned back on P4.

Anna is pretty angry, too, understandably, but I'm not sure that she's going to remember much of the last few days because of how high her fever has been.

Matt stayed with Anna all weekend to give me a chance to be away from the hospital and be with the younger kids, and to give him and Anna a chance to be together.  But that meant that Matt got zero "weekend time" between work on Thursday and work on Monday.  I took Kate and Ethan to the hospital this afternoon so we could trade off responsibilities.

The younger kids and I were able to enjoy the nice weather yesterday by going to a neighborhood park in the afternoon and spending as much time outside as we could possibly handle.

Here's our smiling guy.  Too bad he's also discovered that he can have a pretty strong will when he wants something, or doesn't want something that we think he needs (like a diaper change).

Kate and Ethan have gotten much closer in the past few months; they can be pretty sweet together, but can also get on one another's nerves at times.

 

Kate was a big help at the house last week with Grandpa and Grandma; I think she enjoys the responsibility of showing people where things are :)

  

Tomorrow morning Anna's radiation oncologist is going to make an assessment to see whether or not it would be safe to continue with the radiation treatment.at this point.  Depending on what she says, tomorrow may have many different possible outcomes.

We have had to adjust our lives many times in the last few months, trying to find a way to deal with a new reality.  This transition seems to be harder for me than the others.  I know we'll find a way to deal with the changes in whatever way works best for our family, but right now I'm having a hard time finding the "silver lining" in our new circumstances.

Please pray for strength, peace, and healing for us all.

Update

Anna had surgery this afternoon to remove the brain shunt.  During the surgery we packed up our belongings and moved back to the PICU.  These rooms are smaller, and louder.

The infection was identified as a staff infection which originated with the shunt.  The exact type of bug won't be known for a few days, until the culture has more of a chance to grow.  At that point, Anna's antibiotics might be adjusted to make sure the most effective ones are being used.  We knew that infections were a risk with a shunt, but it was obvious that Anna needed one.

Anna is fairly stable physically right now.  Her fever is down some, but we've been told that the full fever might not go away for several days.  Anna's fever and symptoms were pretty scary this morning ... and they came on fast.  The infectious disease guys who stopped by earlier today were surprised by how fast Anna became symptomatic in the last 24 hours.  Maybe that means the fast growing bugs will be quick to die, too.

Although Anna is stable, she is, however, very, very grumpy.  She was quite uncomfortable before anesthesia and has historically had a rough time waking up.  Today was no different.

Although we are grateful that the source of the fever was found quickly and the operation and antibiotics are helping, we are also disappointed.  Anna will be in the PICU until her spinal fluid comes back clear for multiple days, at that point she will have another operation to remove the EVD and replace the shunt.  The plan is for Anna to have her last three radiation treatments next week, but she'll still need to be in the hospital until the infection stuff is taken care of.

We were looking forward to going home this weekend and being home together next week.  We were prepared to say our farewells to people here.  We were ready for this phase to be over.

I'm having a hard time being thankful right now.  But I'll try.

Thanksgiving prayers
Please give thanks that the source of Anna's fever was found quickly and is treatable.
Please thank God for the nurses and doctors that Anna had overnight yesterday and today; they are amazing.
Please give thanks that childcare for Kate and Ethan worked out so that Matt and I could be here together today.  Not only do we do better facing these trials together, we really missed each other this week.
Please thank God that when the oncologist had Anna's spinal fluid tested, no cancer cells were found.  There is still probably cancer in other places, but at least it's no longer in the fluid.
Please thank God that my fears last night and this morning of the cancer spreading out of Anna's central nervous system were unfounded.

Request prayers
Please pray that Anna's infection goes away quickly.
Please pray that Anna is able to finish up her treatments early next week.
Please pray for Anna's care staff; we were getting close and comfortable with the P4 staff and this setback was rough for some of them, too.
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 for restful sleep for our family.

Thank you for your support and prayers.

Fever

I was going to do a post last night, but was too tired to sit down to write.  The post was going to say something about how even though Anna was down to 3 days of radiation, that meant that she had already experienced 27 days of radiation.  The short term side effects of the radiation are cummulative and do not actually peak until about 7-10 days after the last treatment, so Anna still has a few rough weeks in terms of feeling like crud.

Yesterday was a rough day with more pain and vomitting; we had no fun with the nurses.  Last night I went home to sleep and Anna was pretty upset about me leaving.  I was also feeling down about the way the day went.

This morning when I arrived at the hospital, Anna had nurses and residents in her room and she was in obvious pain.  A variety of tests were ordered.  She had her shunt tapped, an abdominal x-ray, a quick brain MRI, a chest x-ray, and an abdominal ultrasound.  She also started a fever.

There were a variety of possible causes for her symptoms, but it turns out that she has an infection related to her brain shunt.  She has been started on a course of antibiotics to deal with that infection.  She will need to have the shunt removed, have an EVD (the drain) placed, and at some point in the next few weeks have a new shunt placed.  When she has the first surgery, she will be moved back to the PICU until the next shunt is placed.

Anna did not receive her radiation this morning and will, hopefully, receive her last three treatments next Monday, Tuesday, and Wednesday.  However, Anna will be in the hospital for a few more weeks.

We know what caused the symptoms and fever, and it is being treated.  We are thankful for that.

Please continue to pray for our family.

Ups and downs

Boy, if I thought I was having mixed emotions earlier this week, I obviously didn't know what the last two days here were going to bring.

First I'll share some of the good stuff.

1) Anna is down to four more days of radiation.  Woohoo!

2) Anna was, sort of, up to her goal with feeds today and so will not be hooked up to TPN tonight.  Yay!

3) Anna has been excited to participate in her therapies the last two days ... more on that later.

4) Anna's steroids were adjusted to, hopefully, allow her some more restful sleep.

5) Anna has successfully had three radiation treatments sans sedation ... impressive!

6) Anna wanted to have almost a full cup of lemonade this evening; that's more than she has taken orally in almost a week.  She seems to prefer sour/tart flavors right now; her taste buds are also being affected by the radiation.

7) At the care conference this morning it became apparent that almost everything is in place for Anna to be discharged on the final day of her radiation (which is hopefully next Tuesday), assuming there are no unexpected setbacks like fevers, low blood counts, etc.

Now here are some of the "bad" things of the last couple of days, which were sprinkled throughout the days resulting in some pretty extreme emotional moments.

1) Since Anna is at the tail end of the radiation part of her treatment, and since its effects are cumulative, life is pretty uncomfortable for her right now.  Her skin overall is very sensitive; the skin over her spine is sunburn red; and the back of her neck/head is starting to develop blisters :(  She's very tired, and not just because she is not sleeping; the chemo and radiation is physically draining.  Her esophagus, which really hurt last week because it was experiencing something similar to "sunburn", is now starting to "peel".  She's got lots of mucusy coughs.

2) Anna was only "sort of" up to feeds today because she vomited her lunch feeding and part of her dinner feeds.  Her nurse and I think it was partly because of her esophagus/overall digestive system irritation, but we think the earlier episode was also because we tried to increase her feed volume and rate too fast.  Our bad :(

3) Anna's therapies, while going well in terms of her participation, mean that she's getting sore muscles again from using them.

4) Although Anna slept "better" last night, "better" means that she was able to sleep off and on from about 8 until 1:30ish, then dozed (but not really) until 6, before she was up and spent the rest of the early morning hanging out with her night nurse at the nurses' station.

5) Anna needed some extra coaching yesterday morning before radiation; she was upset, crying, and understandably very tired when we got down there.  But we worked through it and had a better plan in place for today.

6) Since the muscles involved in swallowing and the part of the brain responsible for this task are both getting the brunt of the radiation, Anna's swallowing skills have declined.  So, for now, she can't drink via a straw; we have to spoon nectar thick liquids into her mouth.  She didn't seem to mind too much, though, as long as it was lemonade.

7) In addition to planning for next week's discharge, this morning's care conference was also about the next phase of treatment.  In about a month, Anna will have a long MRI to see how things look, in addition to having a g-tube placed.  These procedures will require overnight time at the hospital (on P4 with all of our favorite nurses and nursing assistants, at least).  About a week after that, Anna's next round of chemotherapy will begin.  Before this morning, I was wrong about how each 28 day cycle looks for her, though.  On days 1 and 2, Anna will have a 7-8 hour treatment; she will probably require an overnight stay at the hospital for this, at least until we know how her body tolerates the different chemo drugs.  Then on day 8 she will have an outpatient chemo drug.  Then "nothing" until the next cycle begins.  However, she will be having at least one clinic visit a week here, in addition to transfusions, follow-up scans, and admissions to the hospital for any unexpected events like fevers, sicknesses, etc.

Plus, we started talking about some longer term items like summer, school, recovery, etc.  But this also reminded me of the fact that although the treatments seem to be affecting Anna's disease in the way everyone wants and hopes, she had a lot of disease, and her chances of a full cure are not particularly high because there were a lot of cancer cells in her body.  What if all of this effort on our part, and physical pain for Anna, has simply been to buy her a little more time?

Enough of the sad thoughts.

Yesterday and today were also really fun for Anna and her nurses.  After the whole "Minion" surprise on Saturday evening, Anna and I decided that we should get into the game of playing around with her nurses and therapists, too.  And since yesterday was April 1st, we decided to have some fun.

So, about midday, we got Anna into her wheelchair and hid her in the bathroom here in the room.  Then we tucked the Minion up in her bed and called two of the nurses in.  We got them good :)  Then we played the same trick on Anna's therapists in the afternoon and we got them even better :)

Last night Anna and her night nurse decided to mess with her day nurse by telling her there was a mouse in the room.  So Anna called her nurse in a few times this morning to tell her that she saw the mouse.  Her nurse (a different one from yesterday) got into the game and made a live trap for this mysterious mouse, complete with a piece of cheese from the kitchen downstairs.  But then we got Anna's therapists in on the game and they made a mouse during Anna's therapy today so we could trick her nurse again later in the day :)

I love the fact that Anna wants to have fun again.  I wonder what will happen on Thursday and Friday this week ...

Time for prayers

Thanksgiving
Please give thanks that, in spite of the physical discomforts of treatment, Anna is able to make the most of this last week with her nurses by having some fun.
Please give thanks that Anna's radiation treatments are almost done and that she is able to do them without sedation.
Please thank God that Anna was unhooked from TPN today.
Please praise God for the apparently successful care conference today.
Please give thanks for each and every employee at the hospital with whom we have worked.  Those we see on a daily basis are wonderful, but those working from their offices to make things happen for our family are also doing a great job.
Please thank God that Matt's parents are able to help us out this week.

Requests
Please pray that Anna's skin sensitivity and radiation burns do not bother her too much, or at least that we can help find ways to manage Anna's discomfort.
Please pray that Anna's body can handle her feeds so that she can successfully remain off of TPN.
Please pray for strength and wisdom for Matt and me.
Please pray for strength, rest, and wisdom for Matt's parents.  In addition to helping our family this week, they will need to attend a funeral in Iowa on their way back to South Dakota; one of Mark's uncles passed away.
Please pray for Ethan and Kate this week, specifically, as they are both missing having their momma around and are dealing with it in age appropriate, but still challenging, ways.
Please pray that everything goes smoothly as we transition from help and support at the hospital to help and support at home.
Please continue to pray that Anna's treatments are 100% effective and that she continues to experience minimal side effects.
Please continue to pray for all of Anna's care staff at the hospital; it will be different for everyone when Anna is not living here anymore.

On a side note, Matt received a telemarketing call this evening from a childhood cancer network.  After listening to their spiel, he told them that he would like to support children undergoing cancer treatments, but would prefer to use his money to support his own daughter who was going through cancer treatments right now .  That ended the conversation pretty quickly :)