Monthly Archives: December 2011

Finally, A “Yes”!

God really has his hand on this whole situation and Wednesday was no exception.  I went to bed on Tuesday night exhausted and woke up Wednesday morning stewing about Reece’s teeth.  Terry and I easily came to a joint decision that we would likely not allow the dentist to pull Reece’s teeth. 

Reece and I headed over to the dentist’s office and as we were walking into the lobby, this is the dialogue we had (remember, it was 7:20 am):

Reece: “Mommy, I am so tired.  I’m not sure what is wrong with me.” 

Me: “Well, buddy, I think it might be your ‘special blood’ that is making you feel that way.  And you know what?”

Reece: “What?”

Me: “I think we might need to get you some new blood.”

Reece went on to acknowledge he heard me, but then commented in a very 4-year-old way, muttering something completely unrelated.  I can’t remember what exactly it was.  These are the moments I am trying to use with him to prep him for whatever conversation we decide to have with him prior to next Tuesday.  I feel like everyday dialogue as it naturally comes up will sit better with him versus trying to pin him down for 15 minutes and tell him everything at once.  I know he was listening and will remember what we talked about.  My family has been noticing he has been much more tired the last six weeks or so, but this was the most obvious acknowledgement by him that this is more than regular tiredness.  It supports our need to transplant, which in some obscure way makes me even more confident we are doing the right thing.

We head into the dental office–Reece actually loves his pediatric dental office–and are ushered to the back for x-rays of his impacted teeth.  He had regular x-rays done in August on his other teeth that looked great with no signs of cavities, so this check-up was focused on the progress of the teeth that were impacted by the accident.  It turns out, the x-rays revealed nearly a perfect recovery!  Had we not known about the accident,  one would never detect there was anything that happened to those teeth.  They did a brief cleaning and gave us a special, highly concentrated fluoride to paint on his teeth every three months in an effort to keep his teeth healthy.  (A side effect of chemo & radiation is mouth sores.  We will likely not be able to brush his teeth for a while, but rather, wipe his teeth off to keep them clean and to prevent his gums and tender mouth from bleeding.)

While we were at the dentist, Terry received a call from Reece’s doctor at the U of MN stating the test for Shwachman-Diamond syndrome had come back negative.  It was the last test they had ordered to rule out any other cause for his chromosome abnormality.  Thus, he has “garden variety” MDS with monosomy 7, if you can actually call it that.  I’m not sure that learning this is good news, it is just news. 

As Reece and I were walking in the door back at home, the nurse coordinator called regarding Reece’s teeth.  She told me there was no need to pull them!  If they fall out on their own during this process, so be it.  This delighted me!  And thank-you, God, for a “yes”–finally!  It might be a small one, but I’ll take it.

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Storytelling Giant

During the ’80’s I was (and continue to be) a huge fan of Talking Heads. Part of what I dug about their music was its ability to tell a story- true of most musical artists. However, what they did differently than most is that they combined music, art, and video. One of the videos they released was a movie entitled Storytelling Giant. In this movie, the band combined music videos with interviews with couples discussing their relationships, their love and their story.

Recently I have been spending a lot of time reflecting about the value of storytelling and the role of historians in a family. I often speak the value of these skills in my work role, however, rarely considered them in my personal life. The bedtime routine with Reece has been the trigger of these reflections, and while it can sometimes be frustrating in the moment, is one of my favorite times of the day. One of the routines that Reece has created for the family is the telling of a story from either my or Terri’s childhood. I have found myself, more often than not, spending time throughout the day trying to think of a story from my childhood that I can share with him that evening.

I am typically not a nostalgic person- once going through an experience that I either enjoy or don’t enjoy at the time, I put it on a shelf and move on- and this often proves difficult to me. However, I absolutely value (more than most other things I value) the importance of familial historians. I believe that great story telling preserves our past and guides our future and should not be overlooked. The fact that Terri and I have been pushed to become story tellers by Reece is one of the more fascinating things about our son. I don’t know how common his requests for history are among other children, but I certainly do not recall asking my parents to tell me about their childhood, especially not on such a regular basis. While Reece is building his story, he is most certainly including the stories of his entire family.

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Being Angry

I am really trying to remain positive through all of this, but tonight, I am just angry.  While the totality of the situation is overwhelming and upsetting, it is the things that don’t even seem like the biggest obstacles that are rubbing me wrong.  I haven’t been this angry about things yet.  And I’m not going to apologize or feel bad about being angry, either.  It is what it is.

About two months before Reece was diagnosed, even before the whole process began, Reece had his “big accident” at church.  We checked him into Sunday School like any other Sunday and not ten minutes later were paged to come to the check-in desk.  I walked downstairs to find Reece sobbing with a blood-stained rag in his mouth.  Apparently, he and a few pals were playing “monsters” and chasing each other around the room.  Reece’s foot caught the edge of a rug and he tripped, catching his mouth on the corner of a table on the way down.  Two of his teeth (his front right tooth and the one next to it) managed to shift upwards slightly.  He bit his lip, although he was quite lucky he didn’t bite all the way through it.  After a trip to urgent care that day and a trip to the dentist the following day, we were told to watch and see what would happen.  His teeth eventually discolored and then went back to their normal color.  He is a thumbsucker, so they have shifted around some, but you would not know anything happened looking at him today.  We were told that the dentist would monitor them and that those teeth could eventually fall out, but overall, they look normal and we had mostly forgotten about any stress related to the incident.

Fast forward two months and Reece receives his diagnosis.  In the process of discussing a bone marrow transplant, we are told that Reece will probably need to see his dentist prior to transplant to ensure he doesn’t have any cavities.  If he does, he will need those teeth pulled.  Fast forward to today…

I talked to the social worker regarding several topics and, during that conversation, asked her if we needed to get him into the dentist.  She advises that we do so; I call the dentist to see if we can get him in this week.  The dentist is going to work us in early tomorrow morning.  He calls me directly this evening to say, among other things, that he is concerned about the two teeth that were impacted by the tripping incident this past fall.  There is about a 10% chance that those teeth could die off, making him susceptible to infections, so he is recommending we pull the two teeth.  Whoa.  That is not what I was expecting to hear.  And you might be reading this thinking, “they’re just his baby teeth/that’s superficial/you have much bigger issues to worry about.”  And I agree with all of those things.  But I can not describe how sick and tired I am of playing out all of the realities of the situation in my mind.  I am flat-out not willing to do this unless the situation absolutely demands it–and it might. 

Naturally, I told the dentist that I will talk to Reece’s doctor to see what she has to say.  But I haven’t felt this strongly opposed to any of this process so far.  I assume that is mostly because there isn’t an option with most of it.  Sure, we as parents can opt to not transplant, but that really isn’t a choice for us.  I am sure if the doctor comes back and says things in that certain tone with those certain words that it needs to happen, we will okay to have it done.  But I am putting my foot down until then. 

I am tired with and angry about the situation.  Every day has stress mounting and this was the last thing we needed to hear.  I can not let them pull his teeth unless they absolutely need to do it.  I mean, how much do we lay on one kid?  Sure, to any other kid, it is just getting his teeth pulled.  To me it is making my child sick, taking away his social life and activities, changing his life circumstances, making him susceptible to anything and everything that lies in the environment and his own body…and getting his teeth pulled.  And that is sparing all the details of the days that lie ahead.   NO.  I will fight this one.  I may lose, but I am not just letting this happen without voicing strong opposition to it. 

It was two and a half times MORE likely that Britta would be the donor and that didn’t happen.  But I guess the chance of Reece having his diagnosis is about one in a million (literally), so the odds don’t seem to be on our side  anyway.  And once you actually ARE that ONE in a million, you start to realize that anything can happen.

I have a good friend who once told me to feel every emotion fully; if you suppress your emotion–whatever it may be–it does more harm than good.  I have heeded this advice on many occasions.  I know we are intentionally created to be emotional beings.  The Bible documents many of God’s emotions–including times when he is angry.  Jesus agonized over His impending crucifixion, He rejoiced with His friends, He mourns the loss of people, He shows strong empathy towards others, He shows anger, and He even weeps.  He never apologizes for any of His emotions; He never says, “I’m sorry I feel this way.”  In the next day or so I will post about our wonderful and joyous time over Christmas and the things we have been doing as a family.  I will discuss my relief over my latest ultrasound and my excitement over our new little one.  Tonight, I am angry and I’m not ashamed about it.  If I don’t let it bubble up, I can’t move on and that’s when it will become a problem.

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It’s Good to Have a Plan

Ever since we learned that Reece would be getting a transplant and subsequently be spending a considerable amount of time in the hospital, I have felt called and motivated to do one of the very few things I have control over–create a hospital distraction plan.  This is not an effort to homeschool Reece, but rather I am approaching every day with a specific topic and supporting it with books, games, DVDs, and activities around that particular topic.  It’s an effort to prepare us as much as possible for the time we will be spending in the hospital room and a way to avoid just turning the t.v. on and surfing the channels.  The social worker fully supported my approach while acknowledging that we know Reece will not be feeling his best; one of the biggest challenges and opportunities as a parent or caregiver will be to keep his mind off of his obvious discomfort.  I am fully aware that there will be days where we never get to a single item on the daily plan or that just watching regular t.v. will be something Reece feels like doing.  Still, I am not walking into this ordeal unprepared. 

I had coffee with a dear friend of mine, Suzy, back in November.  She is a former Kindergarten teacher, is getting her PhD in education, and is a busy mother of three children.  I asked her if she knew of any good homeschooling websites that I could pull material from and she offered to help me out with the entire plan!  The word “gratitude” does not even begin to represent what I feel regarding her willingness to help us out.  She and I have been exchanging emails on different topics and we were finally able to put in a few hours of concentrated time together yesterday morning. 

Every day of the week has a designated theme with six weeks worth of topics:

  • Sundays: United States (flag, founding fathers, big cities, national monuments, etc.) 
  •  Mondays: Mixed Up (five senses, dinosaurs, bugs, outer space, holidays, fine arts) 
  • Tuesdays: Transportation (rescue vehicles, airplanes, boats, trains, construction, etc.) 
  • Wednesdays: Weather (snow, thunderstorms & floods, earthquakes, tornadoes, etc.) 
  • Thursdays: Travel (Scandinavia, American Indians, China, Mexico, Canada, Africa) 
  • Fridays: Magic School Bus Adventures (bee hives, human body, pirates, rainbows) 
  • Saturdays: Bible Stories (Jonah, Jesus, Moses, Abraham, David, Noah)

I figure by organizing it this way, he will get into a pattern of knowing what is coming on the next day (i.e. Monday is mixed up, Friday is Magic School Bus, etc.)  We have designated many Magic School Bus episodes that will be used in other parts of the week, as they have so many topically relevant episodes.  I think Reece will really enjoy that aspect of the plan; almost like he is on the journey with the kids!  We chose many topics that he didn’t know much about–with the exception of transportation–in an effort to keep things fresh.   

Every week I will have seven bags at the hospital, one for each day, that contains every thing we need for the day’s topic.  I plan on being fully prepared with the first two weeks, at the time Reece is admitted, with everything we’ll need.  The rest of the plan will be in place, but I know there will be some holes as far as materials go (finding books, DVDs, etc).  We are trying to use many things that are not currently in our home so they will be new to Reece.  Suzy plans on helping me figure out what content will be needed as we move along.  Many people have asked us how they can help out.  This is one area where if you have something that you could donate (whether new or gently used), it would be very helpful to us and would directly benefit Reece and his hospital stay.  Suzy has a running list of items we are looking for (including Magic School Bus materials, craft materials, DVDs, games, books, etc.)  If this is an area in which you feel led to contribute, we would really appreciate it.  Please email Suzy at slbruns@yahoo.com for more information on what is needed and by when.  Thank-you!

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A Few Updates

Reece was in for another blood check this morning at Children’s.  While Children’s is a great hospital, it is not my favorite place to go.  Of course our reason for being there is my biggest reason for not wanting to be there, but now that we have been around this block a few times, I have other issues with the place–specifically the lab.  For starters, the blood draws are taken in a shared lab that is just like any other lab in any other clinic.  For being a kids’ hospital with a hematology/oncology specialty, it seems they would have those capabilities right in the hema clinic.  Second, there aren’t any special techniques they use that are geared towards helping your child cope with a blood draw.  Reece sits on my lap, I do my best to distract him, and I ultimately end up pinning his arm down while he whimpers or cries.  It royally sucks.  In every other dimension (including our doctor and the staff we’ve worked with), they are great, so I have very few complaints.  But when your child is there for a blood disorder, you want them to get the blood-drawing approach and process right.  It has been a totally different, much less stressful experience at the U of MN, so I am hoping we are done at Children’s for a long while. 

We were at Children’s a couple of weeks ago for a blood check and other than the red cells being large, his neutrophils had taken a huge dive.  Today’s appointment was a follow-up to see whether or not his neutrophils had recovered; they have not.  The doctor told us that in a regular clinic setting, this would send doctors into a panic, but in the hematology clinic, this is relatively normal.  In fact, he felt like the number was pretty good, all things considered.  It does mean, however, that he is more susceptible to infections.  Apparently, viral infections are not as big of an issue, but bacterial infections can be more problematic in this case.  Either way, if he happens to get a fever of 101 F or higher, we have to take him to the ER to determine if it is bacterial and, if so, he may need to be admitted for a couple of days to monitor his body’s recovery.  Additionally, as we are so close to work-up week (13 days, but who’s counting?) any infection or health-related issue could delay the transplant process.  We will need to be very cautious.  Our days of playing at the gym are probably over and our holiday gatherings will be interesting.  I already feel like I am a Purellaholic, so now what category will I fall into, “neurotic mother”?  Maybe I need a Purell holster and a t-shirt that reads, “Type-A, concerned parent, and proud of it.” 

In other news, I had my monthly OB appointment yesterday and it went really well.  I absolutely love my OB doc, so that helps.  My belly measured at 22 weeks.  22 WEEKS, people!!  That is two weeks ahead of schedule–I think this is a first for me!  The heartbeat sounded great and despite the small measurements during our ultrasound a couple of weeks back, everything appears to be normal (praise!).  We’ll be in next week for our follow-up ultrasound.  Your continued prayers are welcome and appreciated. 

As we get closer to January 3rd, I can tell the pressure is mounting.  I know next week will be especially hard.  If it’s on your heart, we’d appreciate prayers for an enjoyable holiday period, rest, and peace of mind.  Of course my number one constant prayer request is for either Reece’s miraculous healing before this whole thing starts or complete healing through transplant with no side effects.  God can do anything, right?  I’m asking for big things.  Thanks, all, for lifting us up.

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Life to the Full

Yesterday afternoon I received a call I have been anticipating all week–our schedule for the first week in January which is called “outpatient work-up week”.  It is a full week of testing Reece’s body to understand and predict how it will handle the transplant.  It’s at least four days worth of appointments that include, but are not limited to: chest x-rays, another bone marrow biopsy, blood draws, an echocardiogram, radiation therapy and consultation, and a whole bunch of talking to a whole bunch of people.  It also includes an end consultation appointment in which they review the results of the testing and discuss all of the many side effects of transplant.  I have a pit in my stomach just thinking of this meeting.  Every doctor and social worker has talked about this, “big, scary list” of things that are possible side effects, both long-term and short-term, of a transplant.  My whole “I only want to know what I need to know” strategy goes out the window for this meeting and I know it will not be easy. 

After receiving this schedule, I spent about an hour on the phone with our assigned social worker and was able to get answers to many burning questions I had over a range of topics.  Needless to say, it was incredibly helpful.  I also learned some new things that blew me away.  For example, I hadn’t given it any consideration, but once Reece receives his transplant, he will lose all of his immunizations he has had since birth.  Wow–really?  It makes perfect sense to me, but I hadn’t thought that far out.  It paints such a picture of how extreme this process will be.  He will have to start from square one a year after his transplant happens.  Other things I learned:

  • Reece will be able to have visitors (both in the hospital and also after discharge, as long as they are healthy).  I already knew that he could have people visit in the hospital, but didn’t realize he would be able to do so at our home.  Still, we will need to be very cautious on this one.
  • I asked if we should cut Reece’s hair really short before he is admitted.  (I love Reece’s hair, by the way, and was dreading this.)  Apparently, they do fun things with the hair right before it falls out, like color it and make it into a mohawk or something silly if he wants to!  And they will shave it in the hospital.  This is good news, since I would be sad to cut it before it needed to go.  His hair will start to grow back around 100 days post-transplant. 
  • The kids on the unit generally do not interact, as I originally thought they would be able to do so.  She is still going to see if there is another child around his age that he can meet on the unit.  This would be so beneficial for him; I’d love for him to meet someone going through a similar experience.  (By the way, the floor is like a ghost town–lots of big bright rooms with kids in them, but all the doors are always shut and no one is walking around other than a few doctors and nurses.  There is a shared playroom they can go into if their counts are high enough, but they go in on their own.)
  • Reece can not got back to school for at least six months post-transplant.  I knew this would be the case, but was sad to formally hear the information.  He loves his school, teachers, and classmates!

It was a helpful conversation and I felt pretty good afterward about the information I learned.  We drove our kids to my parents house to stay for the weekend, so we can get some things done around the house, do some shopping, etc.  It’s a little strange being in the house without the kids.  I went to bed feeling like I would be getting some good sleep and I should have anticipated that it wouldn’t be the case, due to the conversation I had earlier in the day.

I awoke in the middle of the night and immediately had the information spinning in my mind.  The information we discussed, coupled with the week’s worth of realization that Reece will no longer be enjoying his normal activities led me to conclude that there is a grieving process at work.  We’re certainly not grieving the loss of Reece, but rather the loss of all the expectations we place on and assumptions we’ve made about his life.  Realistically, we make these assumptions about life in general.  We expect and plan that things will go normally and don’t think much of it until something shifts those plans.  We entered into parenthood with the hope and, therefore, assumption that our kids would be healthy, whole, and lead full lives that outlast our own.  The moment I heard that Reece had a diagnosis, my heart hurt for this.  In the words of one of our doctors, “This is not the time to be planning the next 10 years of your life.” 

This is not to say that we don’t feel hopeful that Reece will make it through this procedure and go on to lead a full life.  What I began wrestling with (continued, actually, since it has been on my mind before) is what does it mean to have a full life?  I kept thinking of Reece not being able to go to school and see his pals, not having play dates, not being able to run around outside without a mask, of us being worried about all the germs and viruses that could complicate his health, and of all the possible side effects that he could be managing long-term. 

Then John 10:10b popped into my mind, “I have come that they may have life and have it to the full.”  I considered that my vision of full life for Reece may be entirely different that God’s vision for him.  I know that Reece has Jesus in his heart and I will save his testimony and how we’ve seen God preparing him for this for a later time.  But I know God very much has a full life planned for him–no matter how long that life on earth will be.  I just never considered that it would different from my own worldview on a “full life”.  When we talk about someone who has led a “full life” it is usually either someone who has passed away at an old age or someone who has passed away young, but with a wide variety of activities they enjoyed doing and with a carefree aire about them.  When I think about a “full life” for my child I think of him being able to do everything any other kid is doing his age.  Well, that won’t be the case for Reece over the next six to twelve months.  He also may come out with side effects that he manages his whole life.  But it’s a powerful thing–almost overwhelming–for me to realize that I have been completely wrong in my assumptions about having a “full life”. 

After getting off the phone with the social worker yesterday, I found myself eager to get the process started.  It was a strange realization; am I actually eager to start something like this?  Certainly, I am not looking forward to the medical process that we will watch Reece go through, but if I look at Reece and who he is in the context and truth that God will be giving him a full life no matter what the outcome, I am eager to see that part of his story unfold.

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Telling Reece

It is interesting watching a child, any child, work through the course of a day.  A child’s world is moment by moment and largely tempered by the outlook of the people surrounding them.  It never ceases to amaze me how one minute a kid can be throwing a fit and two minutes later they are laughing about something completely unrelated.  In my experience as a mom, kids are masters in the art of “letting things go.”  At the preschool age, they have very little understanding of time and they latch on to even the tiniest of facts or experiences.  This actually is a good summary of a 15 minute span of time during the course of our morning.  Reece was upset he had to turn off the t.v. in the middle of “Super Why” to leave for bible study, despite my warning up front that if the t.v was on, it would not stay on for very long and we would not have time to finish the show.  He grumbled to the car and got mad at every “mistake” I made along the way, from stepping off the curb before him to not saying the exact right words to him while I buckled him into his booster seat.  He was two grumbles away from an early bedtime tonight when he decided to drop his attitude and sit quietly.  Not more than five minutes passed and he piped up in the back seat in a cheery voice and discussed how proud I was of him when he realized he had figured out the letter “s” on his own.  The incident he was referring to happened last week while we were playing a board game.  The topic of the t.v. show never came up again and likely never will.  He does, however, recall an incident that happened a week ago that I made a big deal about in a positive way.  If you stand back and watch as a parent, you can probably see the trail of impressions you are leaving on your child–both the good and the forgettable.  It is a child’s lack of context for time, coupled with the understanding of our parental influence that has led us to our strategy on how to approach the transplant topic with Reece.

Understanding that kids have no context for time, we have not discussed any information with him, other than he has “special blood”.  If we clue him in to anything, it will likely stress him out and open the door for many questions that are so far out of our immediate future, it would make the conversation unproductive.  We have been cautious to not discuss it around him if he is near us.  It’s amazing how much he listens to our conversations–even when he is in a different room.  Interestingly, he has brought up his blood on his own and, in particular, the U of MN hospital.  He enjoyed his visit there last month and has asked me if we “ever get to back there”.  Yep, buddy, you sure do!  I am glad he enjoyed his first visit there, blood work and all.  We have found that bedtime or early morning time are natural points in the day to massage in questions or small discussions about his blood.  Every once in a while I will ask him a  question to see where he is at in his understanding, but we will inevitably have to bring this topic up to him in greater detail before we go in January 3rd.  Even then, it will be only presenting him with information for the immediate future.  That has served us well so far and I see no need at this time to change it. 

The topic of transplant is daunting to think about sharing with a four-year-old.  How do you explain to a preschooler why he will feel sick, lose his hair, be in the hospital for so long, not be able to see his sister every day, not be going back to preschool…or why he has to be rid of his blood in the first place?  But if I take a step back and think about his preschooler mindset, he doesn’t have the ability to grasp the larger picture.  And when I think about how almost everything else in life is influenced by how my words and reactions affect his experiences in life, it makes it seem like any other obstacle we would be dealing with, but on a much larger scale. 

After much consideration, I have decided to explain things to Reece in terms of an adventure.  In adventures, there are ups and downs, and usually a bigger purpose involved.  I am hoping to find some good books with child characters to reference to him, especially when we get in some of the tough spots (I already have some leads, but welcome any suggestions).  I’ve begun to realize that no matter what explanation we use to tell him, what will be the most impactful is the manner in which it is told.

The challenge this week is that Reece is ending all of his activities for the Christmas break, but he won’t be returning in January.  He doesn’t know anything about the situation, so he doesn’t realize that this is really good-bye for the remainder of the school year.  I know he will be disappointed when we have to tell him that he can’t go back to school and his other activities.  He won’t understand why he can’t go back to play at the gym or spend time integrated in social settings with other kids.  There is no way around this; it is up to us to remain positive with him.  It was incredibly hard to watch him hug his bible study teachers today, knowing that he won’t be back for the remainder of the year.  His last day of preschool will be on Thursday and I know he will be questioning why he isn’t back when January rolls around.  I’m hoping we can keep him connected somehow, but there is no avoiding the change for him. 

We carry the mental burden of the load for him; he carries the physical load; we all share the emotional load. We have to remember that he is a kid; he moves from one emotion to another in a matter of minutes, largely due to how we handle a situation with him.   While it is important to share our emotions as a family, we also have to keep in check that whatever our attitude is, it rubs off on him.  It’ll be interesting to see how he does with processing everything; I have a feeling we will be learning a lot from him and how he handles things.  After all, he is going through this in his childhood, something that I haven’t even experienced as an adult.  Clearly, he has been prepared in ways that I am not even aware and I’m certain we’ll be amazed as those preparations shine through.

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