Notes on a Pillow

***As of 3 pm (1/31/12), Reece has a chest infection that was revealed on a CT scan.  He will be having a bronchoscopy at 7:30 am to determine what type of infection it is.  Please pray that Reece is able to recover quickly from the infection(this could last for weeks or even months) and that his body responds well to treatment.  Also pray that he continues to breathe well enough to give him adequate amounts of oxygen.***

It feels a little strange to not report on the details of how things are going.  Realistically, other than this latest infection, there hasn’t been much to report.  We are in the “pit” of transplant.  The things we are seeing, including this latest infection, are par for the course.  I have never seen Reece look, act, and interact the way he does, which clearly is a reflection of how he feels.  His body is working so incredibly hard to make his new blood.  We are at day +8, amazingly, and it will be likely not for another 10 days before we see any counts come in.  Of course, I am praying this happens every day, because this is no way for him to live his life.  It goes without saying that it is incredibly hard to watch and I am sure for Reece, even harder to live through.

The doctors still report that Reece is doing as expected.  He has been battling fevers for the last 48 hours, so they feel it is due to the chest infection.  They have been adjusting his medications to try to get him as comfortable as possible.  Yesterday, they felt the morphine he was on was too sedating, which was impacting his breathing and oxygen levels.  Additionally, it was making him itchy and the hoped by changing his narcotic that he would perk up, feel less itchy, and have less nausea.  The itching went away this morning, but his stomach is still upset.  Of course, his hair is still falling out, so that creates some itching as well.  He refuses to shave it off.  You can tell his hair has thinned out, although he doesn’t have any bald spots yet.  If you run your hand through his hair, it is like petting a cat that sheds really badly.  I didn’t know what to expect with the hair loss, but it is very bizarre.  The whole thing is a bizarre dream that I can not wake up from.  You know that feeling you have when you are having a bad dream and you groggily awaken just enough to realize you are only dreaming?  This situation is the reverse of that.  Relief comes in watching movies, reading books, and falling asleep.

Yesterday’s post was an interesting one for me.  It was the easiest post I have written to date–it took me probably 10 minutes at the most to write it and publish it.  The reason I mention this is not to pat myself on the back; on the contrary, it is to point out how much I can improve on many, many areas in my life.  After I posted it, I kept thinking of more things I could add to it.  Perhaps there will be a Round #2 in the future.  I confess that the reason I even posted it was that I didn’t feel like writing a regular post and I had some things swirling in my mind that I have not been able to shake since this whole thing has transpired.  There are two circumstances that I know I am beating myself up about and I know there is nothing I can do to change them.  They may not seem like much to anyone else, but for some reason, my brain continues to trip over them, causing the wounds in my mind to reopen.  And do they ever sting!  I have always been what I call a “ruminater” of sorts.  I struggle to let things go, despite my best efforts.  The way I coped with this as a kid was basically confessing whatever was bothering me to my mom.  But instead of doing it face-to-face, I would write her little notes, place them on her pillow, and leave until she found them and either addressed them with me or never mentioned them again.  I didn’t grow up Catholic, but I had my own version of “confession” that seemed to work pretty well.  As I have gotten older, I have realized that the only real releasing that needs to happen in life is seeking the Lord and letting Him release me.  Even though I know I am forgiven of sins in my life, it is the forgetting part of the equation that can sometimes haunt me.  So these are my “notes on a pillow” that I am sharing here regarding my inspiration for yesterday’s post and I am hoping that it will allow me to let go.

There are two situations that have been replaying in mind since Reece’s diagnosis last fall.  The first is a soccer game that Reece was playing in last summer.  We always felt that soccer might be a fun activity for Reece to do.  He probably won’t ever be a big kid, but he has a lot of energy and he loves to run, so we thought we should sign him up and get him going down the soccer path.  We first tried soccer with him when he was three and that was a mistake.  He had very little interest in any of it.  Thinking it was a function of age, we signed him up last summer when he was four and thought that being a year older might give him better concentration and enjoyment in actually playing the sport.  We had very good intentions and always said that if he wasn’t having fun doing it, we wouldn’t force it.  I can’t recall if this was the first or second game of the summer–it doesn’t really matter.  We arrived and sure enough, there were several kids decked out head-to-toe in soccer gear.  I expected this and let it roll off my back.  Reece knows the basic concept of the game, so we expected him to join in when the kids swarmed around the ball as they began playing.  Reece, instead of jumping right in, drifted to the back and barely followed the rest of the kids up and down the field.  If the ball was kicked to him, he maybe gave it a slight kick, but not enough to move it away from anyone else and the ball was quickly recovered (usually by one of the David-Beckham-mini-me’s who were usually leading the pack).  Eventually, Reece sat down in the middle of the field, only to get up to run over to us for “water breaks” (which are about five times more frequent than the group water breaks).  I found this so upsetting or embarrassing (not sure which; maybe both) that I decided to take Britta to the play area of the park so that I didn’t have to watch.  I think we went back to one, possibly two more games and then the events of the summer overtook soccer and we made very little effort to go to the rest.  I am pretty certain I never deserve to be able to watch him again, even if he is the next David Beckham in disguise.  The fact that I pushed the game on him when he clearly didn’t care about being there (he said it was “too hot” on the field) thoroughly irritates me.  I will not force him do things like that anymore, just because lots of other people are doing it.  And the thought that I actually felt embarrassed or annoyed at his lack of interest…the memory is painful for me.  I need to develop some thicker skin and gain a little perspective.  It is PRESCHOOL SOCCER, Terri.  Sheesh.

The second reason behind my list yesterday, is a memory of Reece, Britta, and me at the gym sometime last summer.  When I was checking the kids into the YMCA childcare, alerted by one of the staff, I turned around to see Reece holding Britta’s neck with his hands.  They were both standing up and it appeared as though Reece was trying to choke her.  Britta was clearly struggling for air.  In retrospect, Reece was going through a lovey-dovey stage with Britta and I suspect he was trying to hug her, she started to wobble, and he was trying to keep her from falling.  I was so taken off-guard by the whole thing and I felt so protective over Britta that I yelled at Reece.  Part of the yelling was for him to let go and part was out of sheer protective anger.  When I realized Britta was okay, I yanked Reece out to hall (I am pretty certain his feet were barely touching the floor) and scolded him as we were walking.  We walked all the way to the parking lot in this manner to get something from the car–I lectured him the whole way.  Thinking back, I know he didn’t do anything to harm her intentionally.  I can not get the look on his face out of my mind.  I knew he didn’t do it to harm her, but I was so angry and I just let it take over.  I am usually pretty good about staying calm and I certainly don’t ever physically harm my kids, but I should have been reprimanded for how I handled him.  It only taught him to avoid me or, at a minimum, that it is okay to yell at each other.  After we got home, I know I addressed it with him and told him I shouldn’t have gotten so upset.  We always talk through emotional situations in our house; apologize to one another.  Our favorite is to “hug it out” whether it was a heated situation, something frightening we saw on t.v., something we had to do (like any number of things we have experienced in the hospital).  I know Reece recovered from it; I, however, still get teary just thinking about it.  I really, REALLY dropped the ball on it.  And I am paying for it now and in a way, I am glad.  I don’t want to make that mistake twice.

I know all parents have moments of weakness when they lose their cool.  But watching him struggle and suffer and thinking back to the way I have let little things get under my skin–I have a much greater context than I ever had as a parent.  I know the fun things we do together far outweigh any heated or frustrating moments we share.  I still pray that Reece doesn’t remember all the rough edges I have as a parent.  He probably doesn’t even remember that situation; he let it go.  And after I calmed down, I was able to see his true colors in the whole ordeal.  I was able to understand that he wasn’t trying to hurt Britta, he was trying to help her.  I know him, I know his personality, I know how much he loves Britta and how protective he is of her.  Had I not let my immediate protective feelings override the logical explanation, things would have fared much better.  I think that’s my #52–I hope I never again fail to try to understand situations from my child’s perspective or fail to give them the benefit of the doubt.

51 Things I Hope I Never Do Again

1.) Sign any of my kids up for classes that I think they should enjoy.

2.) Allow anyone, including myself, to interrupt a conversation my child is having with me or others.

3.) Forget there is a bigger purpose in life.

4.) Feel inadequate when I look at our home, cars…material stuff…in comparison to others.  It doesn’t matter.

5.) Fret about small details.

6.) Stare at people.

7.) Be afraid to ask someone how they are doing because of my own insecurities.

8.) Fail to offer my help to someone because the help they need isn’t where I am gifted in serving.

9.) Assume that because of my own challenges, I therefore understand someone else’s.

10.) Forget how awesome a normal, “boring” day is.

11.) Judge anyone’s personal situation and how they choose to cope with it.

12.) Yell at my child.

13.) Forget the big picture.

14.) Say “no” to something my kids want to do because I feel I don’t have the energy to do it.

15.) Feel guilty or worried about what others will think.

16.) Ruminate about people’s opinions of me or my family.

17.) Ruminate about people’s judgment of my faith in God.

18.) Fail to mention my faith in God, where appropriate, out of fear of chastisement, loss of friendship, or judgment in general.

19.) Have anxiety about flying on a plane.

20.) Wish I had the house all to myself.

21.) Actually have the house all to myself.

22.) Work outside of our home in any capacity that doesn’t feel completely satisfying and in line with where I am called to be.

23.) Stop reading books.

24.) Forget what a gift parenting is, even in the most challenging times.

25.) Forget that my kids are really not my own; forget that I will answer not only to them, but to God in how I raise them.

26.) Underestimate the human body.

27.) Underestimate the will to survive.

28.) Underestimate God’s love.

29.) Think I know more about my life than God does.

30.) Over-apologize.

31.) Fight constructive criticism.

32.) Feel self-conscious about acting silly for my kids in public.

33.) Say negative things about my body and self-image, especially around my kids.

34.) Forget how wonderful my husband is and what a great dad he is to my kids.

35.) Question what lies in my path in life; it all means something.

36.) Take life for granted.

37.) Take health for granted.

38.)Forget that listening happens with my ears, not my mouth.

39.) Lose sight of how regular tasks in the home are learning opportunities for my kids when I am doing them.

40.) Forget to live my life in a way that honors my family or in a way that reflects who God made me to be.

41.) Wrestle with forgiveness.

42.) Expect perfection from myself and others.

43.) Have a need to come back to the U of MN, other than in a student capacity.

44.) Watch “The Real World”.

45.) Feel homesick.

46.) Waste my time comparing anything of mine to anything of anyone else’s.

47.) Pin my child down to take medicine.

48.) Wish for more “alone time”.

49.) Make any parenting decisions based on what other people are doing.

50.) Speak on behalf of someone unless legally obligated to or specifically requested by that person.

51.) Watch my child suffer.

It’s All Catching Up

It’s been a slow decline in energy for Reece this week.  Every day it has become less and less.  Everything, as predicted, began to catch up with him yesterday.  To respect both parents’ wishes, on this post and until Reece’s counts come back in, I am not going to get into as many details.  It’s hard enough to walk through this and what we are witnessing begins to feel very, very private.  And, truth be told, regurgitating details isn’t where I care to keep my focus.  What I can say is that the doctors and nurses continue to remark that he is handling it all very well.  In fact, the nurses were just commenting tonight at how tolerant and easy-going he has been, despite all he is enduring.  If you know Reece or you have been following along in the blog, you can imagine him as acting pretty normal as far as how he feels and looks, up until yesterday afternoon.  He has physically begun to change over the last 36 hours.  He’s having very classic symptoms for where he is at in the transplant.  His mouth is swollen, he’s retaining some water, he’s losing some hair, he sleeps a lot.  He is still as cute as ever and says some very cute things to us.  He’s not talking to us much, but at nighttime, he must be having some strange morphine dreams that lead to funny and endearing comments.

We’ve had one non-family visitor and Reece really enjoyed it.  On Thursday, one of his bible study teachers came to see him and brought him some treats, including a poster that says “Jesus Loves Reece”.  Each child and teacher in his class made a heart for him that is on the poster.  It is adorable!  I told him he has the biggest Valentine card I have ever seen.  He had fun playing with his special visitor.  I am glad he had that experience, because he hasn’t been physically up for much after that time.  Additionally, he hasn’t really wanted anyone to come up and see him.  He doesn’t talk much about kids or other people.  He has said things to hint that it makes him feel bad when he thinks of them; I am sure he is feeling sad about not seeing his pals.  He is normally a very social kid and this is such a big change for him.  If you think about how miserable he probably feels, I don’t blame him for not wanting other people around.  I feel the same way after giving birth and that is a happy reason to be in the hospital.  He is also to the point where he doesn’t want us to leave the room for any reason, so we have not had visitors up to the hospital.  That’s okay for me, too.  This is a very strange hospital experience.  I understand that most people are not in the hospital for fun reasons, but here, the need for extreme cleanliness, coupled with his ever-changing needs, his age, the room restrictions, and the need to keep it a private matter in light of his own sensitivities and our own personal feelings, make it almost a relief to keep things within our family–at least until his counts start coming back in.  We have no way to predict when that will be or what it will look like, so I feel like a workhorse with my head down, focusing on little else other than putting one foot in front of the other.  There will be a time and place for visitors in the not so distant future.  It will be welcomed when we get there!

Right now, our immediate prayer needs are (1) Reece’s body starts making its own blood (Realistically, it won’t happen for at least another 10 days or more.), (2) he is comfortable and able to keep his spirits up, and (3) he stays free of infections and side effects.  Thank-you for your continued prayers.

Is This Normal?

Monday night, Reece went to bed around 11 pm.  His two-hour nap in the afternoon gave him just enough of a boost to keep him laughing and giggling until a late hour.  I fully expected him to sleep in a bit the following morning.  I was so wrong.  At 4 am, he needed to go to the bathroom.  This continued every five minutes for the next hour.  I am not exaggerating; we should have brought the bedding into the bathroom.  And it wasn’t anything graphic–it was just a little bit here and there.  But, I put my best foot forward at 4 am and didn’t question each bathroom run.  After an hour, the bathroom trips began to be spaced out a bit, but Reece was awake enough to not want to fall back asleep.  He had a tummy ache, so they ended up giving him some powerful drugs to help out, including morphine and another anti-nausea medicine that also makes kids drowsy.  Every once in a while, when I am not pregnant, I will take NyQuil for a cold and it will have the reverse effect on me.  It ends in a wakeful night of sleeping.  Reece’s reaction to the cocktail of drugs he was given was my NyQuil experience I described times 100.  Not only did he not fall back asleep, he began engaging the nurse in his jokes from the previous day, singing, talk to himself, talking to me (I was still dozing), laughing at the stars on his ceiling, talking about the balloons in his room, you name it–he covered it.

By 7 am, Reece decided we needed to clean off the playmat, open the gifts we didn’t get to yesterday, and play with hexbugs.  This was no short burst of energy–he played until 10 am on his playmat.  He then took a short break to watch a movie about boats, since boats are our theme of the day.  A volunteer came up at 11 to sit with Reece while I grabbed lunch and they played until 12:30.  Reece played on the mat with me until 2 pm, when I talked him into reading books with me on the bed.  He then wanted to play on the mat again, but I told him he had to watch at least one show.  (I never thought I would see the day when I would negotiate with Reece to have him watch MORE t.v.)  Once the show was over, he was back up and playing on the mat again until Terry arrived after work.  He had a bath before bed and finally nodded off around 7:30 pm.  He is still sleeping at 9 am this morning–he needs it!

The doctors told us a few days back when Reece was watching movies all day that in a few days, that kind of energy level would be a “good” day.  They continue to prepare us for the toughest days that lie ahead of us–probably this week and next week when the cumulative effects of the radiation and chemo combine with the new stem cells to create a harsh effect on his body.  I know it is coming in some form.  Still, I feel a sense of mild satisfaction knowing that while I prepared them that Reece has a high level of energy, they are surprised at his energy.  I asked our night nurse if this was normal for a kid the day after transplant.  She said it was not typical that he would still be playing like he was.  Reece isn’t a typical kid, nor does he have a typical energy level; I knew it would take a lot to get him to wear down.  On the flip side, it will be that much more startling to see him sleep all day and be run down by this.  Considering last weekend when the doctor said that Reece looked “pretty good” and that was the worst I have ever seem him in his entire life, we are in for some shocking changes.  Additionally, while I know he has been pretty resilient to the extreme changes his body has gone through, I am not going to naively assume that it will be any easier on the post-transplant side of things.

Last night, I went home after a 30+ hour stay here and everything sunk in at once.  Each child in our family and his or her particular situation feels heavy to me.  Of course, Reece’s health is the heaviest of all.  However, the feeling of having very little time or control with Britta also causes heartache and the uncertainty of having a third child in a few short months is becoming all too real.  I miss such normal things about life–dinner as a family, sounds in our home, spending a regular day with my kids, running errands with my kids, cooking for everyone.  It’s hard to hear about other families’ normal activities right now; I wish we were doing those things.  I don’t need a new house, a better car, a vacation every year, the latest clothing–I just need our family under one roof.

Day Zero

Day Zero is what transplant day is called around here and was it EVER a day.  It is a day to be celebrated and they treat it as such, yet it still is full of its own challenges and surprises–some welcomed and others not.

Terry arrived at the hospital early in the morning to hear what the doctors had to say during rounds.  My mom stayed overnight, so she was also around.  Apparently, Reece was nauseous early in the morning, but by the time my dad and I arrived mid-morning, he was pretty energetic.  He was playing on the chair and having a good time.  The doctors reported that Reece looks great and seems to be doing great.

It was a rare day in that we were able to have more than three visitors in the room at a time, which was appreciated.  One of the pastors from our church arrived around lunchtime to talk with us and pray with us as a family.  I think Reece appreciated having a visitor that didn’t want something from him–no blood draws, drugs to administer, dressings to clean–just someone to visit and pray with us.  I thought for sure it would be a tearful experience for me, but I was surprised to find it be a peace-filled time of prayer.  At this point, Reece was acting pretty similar to his normal self.  He was hiding under the blankets and goofing around–so fun to see!  We ate lunch and broke out the joke book that I bought for Reece’s hospital stay.  He was laughing and telling jokes to the nurses; great fun!  Reece’s favorite joke to tell is:

Q) What do you call a doctor with eight legs?

A) A doctopus

After lunch, we were informed that some of the U of MN football players were visiting the kids and wanted to come in and see Reece.  This was coincidentally the same time that they were preparing to begin the transplant and they needed Reece to take some regular Tylenol.  He was protesting and it was unpleasant; even though he knows we take this at home, he was skeptical as to how it would make him feel.  I was a little uncertain as to how the visit would go with the football players and the protesting that was happening, but I am glad they came.  Reece told several jokes to keep the guys entertained and we had our picture taken with them (I’ll try to track it down and post it on here in another day or so).  We were able to get Reece to choke down the Tylenol right before they left and everyone was clapping and cheering for him…he was teary.

However, that soon changed when we began opening some of his Blood Birthday gifts.  He opened a three-pack of Hex Bugs (to go with the first one that he loved to receive from his gal pal Rachel) and he had so much fun with them!  He particularly got a kick out of the ant that goes crazy fast all over the place and he was again back to his old self, squealing with delight.  Whenever this happens, it is a glimpse back into our “normal life” and what a pause of relief it brings to us in the midst of the upheaval we are experiencing.

The nurses brought in both bags of stem cells, gifts and balloons for him to celebrate the day (I guess they allow balloons for this occasion only), and began the transplant process.  The entire process took the length of the movie, “The Land Before Time”, almost to the minute.  Reece watched the movie and the nurse had to stand on a step stool and hold the bags over her head, as high as she could reach, so that the cells would flow better.   I kept staring at the bags thinking, please heal Reece and do nothing more.  Do what you are supposed to do and that is it.  The first cord went pretty smoothly; the second cord made Reece nauseous.  We are told that it is more the preservative that they use with the cords that brings on the nausea.  In fact, the preservative has a distinct odor to it that most people think smells like creamed corn; I think it smells more like canned, stewed tomatoes.  Reece will smell like this for a couple of days and it will gradually wear off.  The nausea subsided shortly after and Reece was exhausted.  Still, he wanted to get down on the mat and play with his new toys.  That lasted for all of a minute before it made him nauseous and he was back in bed.  He drifted off to sleep shortly thereafter and he is still sleeping now.

I am hoping tonight is a quiet and restful night.  He starts some new meds tonight that are designed to prevent side effects from his body fighting off the new blood.  They don’t anticipate that anything will be keeping him up all night, but you never know.

A million thanks for your prayers and words of encouragement!  They truly are felt and appreciated.  We are amazed at how many people (many more than we are even aware of) know of Reece’s story and continue to lift him up.  Our biggest challenge at this point is managing side effects.  One of the most serious side effects is his body fighting off the new blood and all the effects that can produce in his body.  Please continue to lift him up and pray that his body accepts the new blood and completely rids itself of Reece’s old blood.  Also, pray that his body’s acceptance of the new blood is never a concern in the immediate future or for weeks, months, and years to come.  This can be a very serious and life-threatening side effect that can take many forms.  Please pray that his body be restored to its full health, never to be battling this disease or any other side effects from it ever in his life.

Gifts for Reece from the hospital staff

Britta’s gift from the hospital staff

Playing with Hex Bugs before transplant

Reece during his transplant

 

Transplant Day Info

We’ve received a fair amount of questions on what exactly transplant day is like.  While I don’t know how everything will go myself, I want to share what I do know in an effort to paint a better picture of the day.  Reece is scheduled to have his transplant in the early afternoon.  Unlike a surgical procedure, the day should be pretty quiet.  The transplant will be similar to a blood transfusion.  He will stay in his room, be awake, and in what we consider his “normal” state and receive the stem cells through his line.  The doctor will likely stop by, but will not be in the room for the entire procedure.  Since Reece is receiving cells from two cords, I believe it will take a little longer–around an hour.  He will receive the cells back to back, versus spreading it out throughout the day.  Other than the possibility of nausea, there is very little that he needs to do to be prepared for tomorrow.  The reason we stay in the hospital for so many weeks post-transplant is that he is extremely susceptible to infections, he’s on many medications that he receives from his line in an effort to keep him comfortable and to prevent side effects, he needs supplemental nutrition, and we need to wait until his blood counts come back up to a safe level for him to leave the hospital.  Obviously, all of these things take time to happen–or not happen–so that is why he needs to be in a controlled, sterile environment.  The transplant itself isn’t the part that takes so long.

Reece knows that he is getting his new blood tomorrow and that it is his “Blood Birthday”.  I explained to him a few weeks ago that he will have two birthdays a year to celebrate for the rest of his life!  He will get presents from us and the hospital staff treats it as a special day–it IS a special day!  Hopefully, he will sleep well tonight and have a good day tomorrow.

Please pray for Reece:

• That these cords will successfully rid his body of his disease and cure him completely.
• That his body will accept the stem cells and fight off only any remaining blood–nothing more.
• That he feels well and recovers quickly.
• That he has no side effects–none.
• Anything else that is on your heart.

Please ask for big things for Reece–God can do so much more than we ever ask.  He has already done more than we have asked in this hospital stay.  Thank-you.

Tough Stuff

Two days ago (Thurs), I had been working on a post about Reece’s last day of radiation–how much energy he had, how much the doctors were surprised at how well he was eating, how he was jumping off the bed in his room when he was disconnected from his lines, and how it at times was hard to tell he was actually preparing to receive a bone marrow transplant.  That all changed yesterday.

Yesterday morning (Fri), Reece began receiving his second round of chemotherapy.  This is a different drug than the first one he received last weekend.  We were warned that this one may be a little tougher to handle, and they weren’t joking.  Reece’s chemo began around 10 am; I arrived at the hospital around 10:30 and found him looking tired, but doing okay.  He was with my mom before this and apparently he had been playing pretty well in bed.  He was more tired than usual and didn’t want to get out of bed, but he was still quite animated.  By 11 am, the nausea had set in and it was difficult to watch.  I think everything caught up with him and the added chemo tipped him over the edge.  After a brutal hour or so, the doctor ordered an additional anti-nausea medication and soon after, he was lying in bed, eating some crackers, and settling in to a day of movies.  Normally, I don’t let my kids watch very much t.v., but under these circumstances, I am told an interest in watching t.v. is actually a good sign.  Apparently, t.v. watching will become an activity that he will likely not even want to do for a while.  If you can call watching t.v. an “activity”, then you can imagine how taxing this process is on the body.  Reece did pretty well the rest of the day.  By 8:30, while Terry and I were out to dinner, he was with my mom requesting Chipotle, if you can believe it.  By 9 pm, he was sleeping.

This morning (Sat), my parents were with him while Terry, Britta, and I spent time together.  By the time I arrived at the hospital mid-day, Reece was watching movies.  He was ebbing and flowing with a sour stomach, but overall things were more under control today.  One challenge to this latest round of chemo is that he is required to go to the bathroom at least every two hours.  This particular drug is powerful and by going to the bathroom, it helps keep the bladder flushing out so the chemo doesn’t settle and cause harmful side effects.  The bathroom requirement will last until around noon tomorrow.  There was a point this afternoon where he was going to the bathroom every 15-20 minutes.   By late in the afternoon, Reece was actually eating saltine crackers and drinking apple juice!  He started supplemental nutrition today, since he lost his appetite yesterday and he will probably be on it for at least the next 6-8 weeks and possibly longer.

By this evening, Terry came over to the hospital and Reece received a bath.  He was reluctant at first, but by the time the nurse gave him some syringes to play with and to squirt water at Daddy, it was as though he was at home in our bathtub!  He was giggling and acting like himself–it was awesome; such joy in such a routine part of any other normal day!  My dad stopped over this evening after I had left to bring fresh blankets from home and apparently Reece was goofing around and acting like himself.

Reece’s last chemo round was today, so he is officially done.  Thank God for that.  I am so glad that radiation and chemo are finished–I hope I never have to witness either again in my life.  Tomorrow is a day of rest (I love that his rest day is on a Sunday!) and he will have his transplant Monday afternoon.  Holy cow, my baby boy is getting new blood in less that two days!

“Of This World” and Other Thoughts

Tuesday, I left the hospital  mid-day to go to my monthly OB appointment.  All is well with “Little Miss Kicky” as Reece and I have been calling her.  (I told Reece that he is probably the only kid on the floor who gets to have a sibling with him most of the time!)  I spent the rest of the afternoon running errands and working out, picking things up around the house, and sleeping at home.  Whenever I leave the hospital, it is such a contrast to walk out into the regular world.  In some ways, it is easier to be at the hospital, because that is where our focus is, regardless of where we physically are.  Additionally, there is less time at the hospital to ponder all that is going on.  Once I leave, that is when the wheels start turning.  And as I was doing my run/walk (yep, still running some at 24 weeks!) I was able to do a little processing again.

1) Germs

Ok, I will admit that I was already a little bit germ crazy to begin with.  But now, it is over the top.  It is almost like putting on a pair of glasses that allows you to see things from a germ’s perspective.  Your mind can go on overload if you consider all of the germs that are living in us, on us, and around us.  When I leave the hospital, it is weird to not have foaming hand sanitizer hanging on the walls of wherever I am at.  I used to enforce the “Five Second Rule” at our house all the time–chip on the floor, grab it up quickly, good.  I can not imagine I will be doing that for years now!  We have to sanitize everything that enters the room.  Everyone washes their hands when they enter the room and usually uses hand sanitizer several times while visiting.  Anything that hits the floor has to be washed or sanitized.  Reece has a play mat he sits on to play on the floor (similar to the padded blue gym mats in elementary school).  The play mat has to be sanitized any time we play on it.  Sanitizing means we use highly concentrated wipes that require us to wear gloves when we are using them.  All toys, books, DVDs, and hard surface items have to be wiped down to be used.  All blankets, sheets, and stuffed animals must be washed either daily or several times a week.  The room is thoroughly cleaned every day and we can not leave things sitting out in the room for more than a couple of days as collected dust contains mold.

2) Parenting in the hospital

I did not anticipate how difficult this part would be when we were preparing to come here.  I knew that we would have moments of parenting that would need to happen, but it is not so easy to tell your child to behave when you know they are handling a very tough situation really well in the first place.  Reece has left his room only a handful of times in the last six days.  We come and go, but he is right there.  Always.  He is taking medicine, doing mouth cares (he has to swab and rinse his mouth four times a day instead of brushing his teeth), dealing with the lines he is hooked up to, answering to many, MANY people coming in and out, and allowing some pretty painful things to happen.  I can’t expect him to be cordial every single time this stuff happens.  Where the problem lies is that he gets really pouty and cranky with some people (not many).  I finally had to have the “Just because you are in the hospital doesn’t give you the right to…” talk yesterday and he handled it well.  I wish I could bring him into a big, sterile room and just let him kick and pout and scream.  They should add one of those to the unit; I’d probably take a turn using it, too.

3) This world

This has been brewing and I need to let my mind run on this one.  It may take a while to get to my point–bear with me.  About five years ago, Terry and I read a book by CS Lewis called, “The Screwtape Letters”.  It is a very eye-opening book.  If you have never read CS Lewis’ work (other than the Narnia books), I should preface my recommendation by saying a few things.  CS Lewis is a Christian writer, not a pastor and not God, so it is one regular person’s viewpoint.  The book was written in the 1940’s and he was British, so it takes some time to adjust to the vernacular.  The most important part to know is that unlike other Christian books, this book is written as a series of letters from a demon (yes, you read that right) named Screwtape who is mentoring his nephew named Wormwood on how to become a seasoned demon, so to speak.  So he references God as “The Enemy” and the devil as “Our Father Below”.  It is challenging to shift your thinking to follow along, but is worth it to read it and think about how Satan operates in the world.  In this series of letters Screwtape discusses Wormwood’s progress that he is making on getting a regular human man to turn away from following God.  By reading this fictional story, it made me completely re-think the way the devil works.  I definitely see a lot more of the devil’s work in the day-to-day.  I think the devil has been socialized into a red little guy with a pitchfork and a creepy tongue.  Many people flat-out don’t believe in the devil at all–even if  they choose to believe in God.  It is easy to forget that he and his minions are always at work and they are very influential.  The book does a great job of describing not only the obvious evil things that go on in the world (it’s not graphic at all), but also the devil’s craftiness of encouraging passivity, bickering, political correctness, mind rationalization, and so on.  These are things I had never considered in any depth before reading this book.  I began to take more notice of things around me–even things in my marriage and family life where I could see this at play.  The book definitely has influenced the way I view things in life and where my motivations lie in regard to the level of importance I give them.

I also think of the Bible and how it references “this world” and how we are passers-by–to not get sucked into things of this world and to not get comfortable here.  I distinguish the world that God created and being “of this world” in my mind by considering that God created this physical world and it is obvious all around.  The specificity of grains of sand, to differences in land forms, to the vastness of outer space, to the inner workings of our body.  He is all over this world and it is wonderful!  However, the junk that we have brought to it is what I believe He means and that there is something better for us beyond here, if we believe in Jesus and follow Him.  The craftiness of the devil combined with sin is what being “of this world” means in regard to us not being permanent residents here.  Again, this concept of “world” can be very subtle–my need to not be offensive in any way to people to the point of not sharing my personal faith to gain acceptance from others, my need to have more, do more, be more, my prioritization of things versus relationships, my body image.  All of that is wrapped up in “this world”.

How does this all relate to Reece?  While running, I couldn’t stop thinking about each procedure he has endured or will endure.  For me, when I think of what Reece is going through and all of the kids that I have seen here, these diseases are of this world.  There is no way God created our kids to walk through this type of stuff.  I believe the devil has had a hand in all of it, back to the story of Adam and Eve.  When you watch the face of a child going through even one of these procedures, for me, it puts a face on God’s creation struggling with the realities of our world.  I can not remember a time when I felt such disgust at the devil, which has created an even stronger desire to not be defeated in spirit by Reece’s current circumstances, nor can I remember a time when I felt such an obvious realization that I am not comfortable in this life.  And back to the CS Lewis book–it makes me realize how any anger I feel that could potentially be directed at God or any decay that happens in my relationship with Him, furthers the devil’s work.  That said, I still love life in the people I know, the places I frequent, and having a relationship with God.  But seeing my child struggle, I am excited for the day when we get to wipe the slate clean and live in a place that doesn’t include bodies hurting and people suffering.  I would never want to end my life prematurely or feel like things here are meaningless.  On the contrary, I find it even more motivating to be bold in my faith and I see this realization in my life as another stepping stone in faith.  I remember a few months back, soon after Reece’s diagnosis, getting really rude with the devil–almost conversationally rude–and telling him that he flat-out wasn’t going to break me with this.  I feel like the more I allow all of this to creep inside and settle at the bottom, the easier it will be to let all the negativity bubble up and prevent the larger mission of life from being accomplished.  Being annoyed and angry with the devil is very motivating!  This may all sound crazy, but I couldn’t care less.  These are my personal, raw feelings about it.

I have a friend who tags the ends of her emails as such and I thought I would share:

Be the kind of woman who when your feet hit the floor each morning the devil says, “Dang, she’s up!”.

Progress and Batman

Sunday seemed to be an okay day.  Reece felt pretty normal and my parents spent part of the afternoon playing with him.  We both slept well the night before, but by the end of the day, after my parents had cleared out, the weekend’s events had caught up with all of us and we were all tired.  I left the hospital to sleep at home and Terry stayed with Reece overnight.  I left around 8 pm and Reece was close to nodding off.  Apparently around 9 pm, Reece awoke to the beeping of the machines and had a hard time falling back asleep.  He was homesick.  He misses home, our family, his things.  He was pretty matter-of-fact about the next morning, but it was an emotional evening for Terry and Reece.  I told him that I was at home that night and even though I was in our house, I was homesick, too.  I reassured him that without our family together, it doesn’t feel like home.

Yesterday, Reece had his first rounds of radiation.  He handled them beautifully and sat very still the entire time.  He watched “Happy Feet” while it was happening; the doctor commented on how amazed she was to see a four-year-old sit still.  He sits on a bed with his legs together and his knees in the air.  His feet are taped to the bed.  They put rubber gloves on his hands and tape his hands to the sides of his knees.  They tape his head to the bed so he knows where he needs to keep it positioned.  It is just masking tape, so he could easily wriggle out of it–I think young kids often do.  Then, he sits for roughly 8 minutes, they rotate him and he sits for 8 minutes more. It is important that he doesn’t move so that the proper amount of radiation is distributed to his entire body.  Should he start moving, they could opt to sedate him.  Since he receives two rounds a day and you can not eat for six hours prior to sedation, he would not be able to eat anything until basically supper.  I am very relieved in how well he is doing with the procedure.

One special “treat” if you want to call if that of radiation is that Reece actually gets to leave his room.  He opted for a wheel chair ride both times versus walking (simply because I think he thinks the wheelchair is fun).  Once he got to the radiation department, he ran down to the machine–he definitely still has some energy.  During this time he is also disconnected from his lines, so he has some freedom of movement and when he gets back to his room, they allow him to play for a while without hooking him up.

After his first round of radiation in the morning, I surprised Reece with a big Bat Cave toy!  For some reason, Batman is the man of the hour around here.  The Bat Cave kept him playing most of the day on the floor, which is awesome.  There may be days when he doesn’t want to get out of bed at all, so the more we can keep him interested in things that he can play with off of his bed, the better (in my humble opinion).  Tomorrow I am bringing him the Joker and his funhouse, so he will get to play with the “bad guys” as well.

After his second round of radiation, late in the afternoon, Reece came back to his room and was a little punchy.  He was calling the doctor and tech in radiation “mean” and when he got back to the room he was hiding for the nurses so they had a difficult time taking his vitals.  I don’t blame him for feeling that way at all.  We still have to parent him through it and provide consequences if he doesn’t cooperate, but we gave him some leeway on it.  The pouting and negative comments are his way of exerting some sort of control.

After dinner, Reece began spiking a small temperature and falling asleep.  I think everything started catching up with him.  They will take cultures when he has a fever to see if it is due to infection, but the doctor explained that in the BMT process it is very common to have fevers and right now it is likely due to the chemo in his body and the associated inflammation.  They put him on antibiotics overnight, but when he woke up to go to the bathroom, he refused to take Tylenol for me.  He drank some water and we read some books and he fell back asleep.  By 4 am his temp was back to normal, so all seemed well.

Today’s focus was rescue vehicles, which is one of his favorite topics.  We read lots of books and played a DVD on how fire fighters do their jobs.  Terry and Reece spent most of the day’s free time putting together his new Lego fire station and fire trucks.  As far as radiation was concerned, he sat well again today.  He did have a sunburn-like appearance to his face mid-day, but we think it is a side effect from the antibiotic he is on for his fever.  They can regulate the medicine accordingly, so hopefully it is nothing more than that.

Reece has been a “hit” with the docs and nurses.  The two things people have consistently said are 1) he is very cute and they heard that was the case before they met him in person and 2) he has crazy, thick hair.  Both are true!  We’re halfway done with radiation and Terry goes back to work tomorrow.  Hopefully, it will be a quiet night and a smooth transition.

Days 1 & 2

It has been a long couple of days at the hospital, in fact, it’s hard to believe it has only been two days.  So here’s how things have gone down so far.

We got to the hospital at 10 am Friday morning for Reece’s line placement.  We checked into the same location as where he had his biopsy, but he was wheeled to a different room for the actual procedure.  He enjoyed being wheeled in his bed, but when we arrived at IR (Interventional Radiology) and he was getting prepped for the surgery, he began to realize this was different from before.  He actually said, “I don’t like this; I want to go home.”  I felt horrible.  Child-Life had many toys there to distract him while we waited to be wheeled into surgery and one of them was a light-up wand.  He began to point the wand at us and “freeze” us with it.  It became a game that he played even until we were wheeled into surgery.  Of course we were all gowned and masked, including the many doctors and nurses…and of course Toto and Josh the Dog.  It was quite comical as we were wheeled in to see everyone playing along with Reece’s game–dodging behind machines and pretending to be frozen when he waved the wand at people.  Terry and I waited with him until he was sedated and then we left the room.

Reece handled the line placement procedure well and spent quite a bit of time in recovery sleeping.  He eventually woke up, ate lunch (again, complete with a cherry slushy), and they wheeled him up to the BMT unit.  It was a whirlwind of people who began to come into Reece’s room–doctors, nurses, the chaplain, child-life, the social worker–it was overwhelming.  Thank goodness my parents were there to keep Reece occupied during the whole intake process.

Before dinner, Reece was able to go into the shared playroom and play with toys and the volunteer.  He loved it and was disheartened when he learned he could not go in there after yesterday.  Once chemotherapy starts, the kids are basically confined to their rooms.  Our only major snafu of the day happened with dinner.  We ordered it at 5 pm and it didn’t arrive until after 7:30…unacceptable.  The nurses were so annoyed and we were beyond frustrated.  It took two calls to managers to get his tray brought to him.  Let’s hope that isn’t a pattern, although it sounds like it is somewhat typical.

Prior to the start of chemo, I had this moment of mild panic where I needed to talk to the doctor just to make sure that they were certain he has the right diagnosis.  I was reassured that with monosomy 7, it is classic for what he is battling.  Terry stayed overnight with Reece and I went home with my parents to get some rest.  The chemotherapy, I am told, went well and Reece slept well other than groggily complaining of some nausea throughout the night.

Saturday morning I spent a short time with Britta and my parents and then went back to the hospital.  I brought Reece’s matchbox cars and ramp, knowing that he would probably be looking for more toys to play with.  I arrived at the hospital and Reece was eating breakfast.  Terry had already stood at the doorway for the doctors rounds and received the report that Reece did well overnight.

Mid-morning, Reece took a bath and then experienced his first dressing change on his line.  There was lots of very sticky tape they had to remove from the covering placed on for the bath, plus the sticky bandage they use to cover the line, plus the pad that covers the actual insertion site.  He handled all the tape removal very well and we read books for a distraction.  I wish I had been better prepared for the next part–they cleaned the actual site and it was not a pretty scene.  We were all masked so that we wouldn’t breath into the site and Reece had to be very careful to not touch the nursing assistant or the site itself during the process.  The NA started swabbing down the site and Reece was grabbing both of my hands–big tears.  Again, another moment of agony as a parent.  He was quick to recover, but we will have to do this every three days in the hospital and Terry or I will need to do it once a week when we leave the hospital.  I definitely need a strategy for this one.  We let him play his “Cars” game on the iPad as a special treat and he moved on very well.

After the dressing change, we cleaned his floor play mat and he began playing much like he does at home.  However, five minutes later, he got up to walk around to another part of the mat, forgot he was hooked up to the machine (which is attached to him through his line that was probably still tender from the dressing change) and he pulled hard on the line.  Again, there were big tears and hugs.  We’ll have to get used to being hooked up to the machine and careful about the line.

The fellow (basically a medical student who has gone through regular residency, but is receiving additional training to become a BMT doc) came in to talk to us.  She advised us that Reece could still be out and about in the hospital with his mask on.  He, my mom, and I (and his machine, of course) walked down to the front desk to sign him up for more playtime in the playroom–Reece was very excited!  Not a minute passed after we returned to the room that the nurse advised the fellow was mistaken and we could not leave the room.  Reece broke the rules within the first 24 hours of being here!  He was, however, extremely disappointed.  And while I understand that everyone makes mistakes, this seems like a major oversight.  I really like the fellow, but I am not sure what happened on that one.  The main doc came in to apologize, but didn’t go into great detail about what had happened.  We’ll see if I can get some answers today.

Terry and I were relieved by my parents; they stayed and played with Reece during the afternoon while Terry and I worked out, showered, took Britta out to dinner, and ran a few errands.  We then took Britta up to visit Reece.  It was a short reunion, but I am glad they were able to see each other.  My parents left with Britta and Terry and I got Reece ready for bed.  Terry left around 9 pm and Reece nodded off shortly thereafter.  The nurse came in around 10 to get Reece’s chemo started.  I was still awake, but it was hard to look at the chemo bag and not want to grab Reece and get him out of there.  The natural parenting instinct to protect your child is overwhelming.  Still, I know it is there to save his life, so while it is poison, it is good.  Very strange.

I chatted for a while with the nurse after she finished the procedure.  We started talking about the chemo and she shared with me some of the other devastating diseases and situations she has witnessed here (nothing graphic or specific to any one person).  She was sensitive to the fact that I am a parent going through something stressful, but was explaining how there was a set of identical twins receiving a transplant at the same time and how differently they responded to the transplant.  It was a disease inherited by the mother.  I can not fathom what that mom must have felt like and my heart hurts for her.  Throughout our conversation, I felt actually grateful that Reece’s diagnosis is treatable and that while the chemo and radiation will have side effects, they do not have the effect of speeding up the progression of the disease as some diagnoses do.

Today includes another round of chemo late tonight.  My parents will go back to their house with Britta and we will try to settle into our weekly pattern.  Monday, Reece will begin radiation and we are told that is when his energy will fall and the nausea will likely pick up.  For now, he is still playing and generally acting like himself.

We are so appreciative of all of your prayers.  Please continue to lift up Reece–that he comes through this quickly and he is HEALED, that he has no side effects (we’re asking for BIG things), and that he can handle being in the room day after day.  Please pray for our family’s health–physical, mental, emotional, and spiritual.  Pray that we have the power to withstand this entire process and support Reece in the best possible way.  Thank-you.

Reece’s arrival at the U of MN

Giving Josh the Dog his line and medicine

Reece using his “freeze” wand

Playing in the playroom

Sleeping through chemotherapy