Category Archives: Bone Marrow Transplant

A Year Later

Yesterday marked a year to the date of Reece’s transplant.  As it turns out, the day was harder for me than I had anticipated. I knew it was coming—obviously—but didn’t expect to feel attached to it in the way that I did.  We had so many hopes for this transplant and such a desire to be celebrating a full year of new, healthy blood with him.  In fact, we had sort of “sold” the whole transplant idea to Reece by explaining that he would be the only kid we knew who was able to celebrate two birthdays a year—his date of birth and his date of new blood or his “Blood Birthday”.  We had hoped to take a special trip if he was well enough.  We had hoped for a lot of things…

I have such mixed feelings about his “Blood Birthday”.  If he was here and everything had gone according to our plans, it would have been cause for a big celebration.  However, things did not go according to plan.  The new blood destroyed his body; it’s disturbing.  He was so brave about the whole thing.  He never asked why he had to go through what he went through.  He trusted us.  He so sweetly told my mom the day of transplant that he was, “…a little nervous.”  The only thing I’m celebrating a year later is what we celebrate every day–Reece.  But whatever our party here theoretically would have looked like, it would have paled in comparison to what he is experiencing now.  That doesn’t change the hurting part here, but I take comfort in knowing that.

Many memories from the hospital have all merged together, but I will never forget a year from today when Reece awoke at 4 am, the day after transplant, ready to play the entire day.  Being six months pregnant, I tried to fight through the tiredness to enjoy it.  In fact, it is my last memory of him wanting to get down and play with toys on the floor.  I’m sure he did so for a few days after, but I cannot distinctly remember what day the floor playing ended.

Playing with hexbugs the day after transplant!

Playing with Hexbugs the day after transplant!

We miss you, Bud.

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A New Space

It’s a new year and I’ve decided to move into a new space for writing.  I have come to the conclusion that I view Like Olive Shoots similarly to how I view many of Reece’s things.  They have become somewhat untouchable and I am heavily into “preservation mode”.  I plan on keeping this blog the way it is; it will remain active for the time being as I believe it is purposeful and something that people reference and have a need to visit from time to time.  Our family also needs it for reference in many ways.  It feels a little strange to be writing primarily somewhere else, but it also feels right.  Thank-you for respecting this space and for your support, which has and continues to be incredibly meaningful to our family.

Feel free to check out my new site: www.lifeafterthursday.com

Thank-you for sharing in this journey; it has been an honor to write on behalf of Reece and our family.

Terri

 

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Haste the Day

December is upon us and we are already at the point of one year anniversaries.  I’m not sure how I feel about that–I suppose it depends on the day.  I do feel a sense of relief in a lot of ways.  Several people have asked me about Christmas and have implied that it will be hard.  Yes, I am sure there will be some hard moments, but I can’t anticipate when or where those will be.  However, holidays are days that happen once a year; traditions that we celebrate on a yearly basis.  I have five buckets of memories of those holidays with Reece.  There are things that we did as a family every day, which means I miss every day.  Each day is challenging, so I guess the missing Reece part doesn’t change because of the holiday.  Last year was particularly heavy, so comparatively speaking I know that he will not be suffering any longer.  Last year, in my opinion, was much heavier knowing that he would be facing so much.  Perhaps tomorrow, my opinion on that will change.  Grief is unpredictable that way.

I am feeling a little sad that 2012 is leaving us because it is the last year that Reece was here on earth and it is the birth year of Scarlett.  Yet the weight of the year needs to leave us.  I’m relieved that I don’t have to relive this day.  Or yesterday or the day before.  Firsts seem to be a hard sort of thing, yet I’m not convinced seconds, thirds, or fourths will be any better.  So time passes and we pass with it.

Writing the book proves to be an interesting task; it’s not even close to a book yet–more like a general outline and a few paragraphs.  It is so very different to write about past events versus current life happenings.  And it is difficult, as I anticipated, to recall the things that happened.  I am realizing that I will need to be tapping into different writing exercises to come to some sort of groove with it.  I am also accepting that it may never feel like I am in a groove at all.  It may be a labor of love that is painful the whole way through.  I hope I can present something that honors Reece.  I love writing his name, so that is one easy part!  Reece.  Reece.  Reece.

I continue to look to others who have walked this path before for comfort or some sort of general understanding.  While I’m not comforted that someone else is suffering or has suffered, I am grateful that there are others that we can be in community with, even though the common ground isn’t one that anybody would choose. I have looked at a few stories of well-known people who walked through life with at least one child who passed away.  It was a purposeful decision for us to have “It is Well with My Soul” played at Reece’s memorial service.  I knew the man who wrote the song–Horatio Spafford–had suffered the loss of multiple children in his life.  A couple of days ago, I decided to re-read a general description of his life and search for more info on him.  There are many websites that give accounts of his life.  He ended up losing six children of the eight that he and his wife had.  He lost a four-year-old son to scarlet fever.  Two years later, his wife, Anna, and four young daughters were on a large vessel to Europe for a family vacation (Horatio would come a few days later to join them, but was delayed by business) when their ship was struck by another.  The following is an excerpt from biblestudycharts.com:

On November 2nd 1873, the ‘Ville de Havre’ had collided with ‘The Lochearn’, an English vessel. It sank in only 12 minutes, claiming the lives of 226  people. Anna Spafford had stood bravely on the deck, with her daughters
Annie, Maggie, Bessie and Tanetta clinging desperately to her. Her last memory had been of her baby being torn violently from her arms by the force of the waters. Anna was only saved from the fate of her daughters by a plank which floated beneath her unconscious body and propped her up. When the survivors of the wreck had been rescued, Mrs. Spafford’s first reaction was one of complete despair. Then she heard a voice speak to her, ‘You were spared for a purpose.’ And she immediately recalled the words of a friend, ‘It’s easy to be grateful and good when you have so much, but take care that you are not a fair-weather friend to God.'”

While he was sailing to Europe to join his grief-stricken wife and accompany her back to the US, Horatio penned the song “It is Well with My Soul”; the voyage he made required he pass over the site where his four daughters perished at sea.

The Spaffords had three children after this tragedy and lost yet another four-year-old son to scarlet fever.  On top of this, their church considered these deaths a divine punishment from God.

After reading the accounts in detail, all I could do was weep for them and weep for the parents all over the world who are chosen to live out life here without a child–or multiple children.  All I could think about was what incredible sorrow the Spaffords must have experienced in their lifetime and yet this beloved hymn has brought hope and peace to so many people over the last 140 years.  I had never read the part about Anna hearing she was “spared with a purpose”, but that also brought me much encouragement for my own life.  God brings us through circumstances purposefully, not in vain. I don’t know; I guess as I look at where my life is at, I need that encouragement.  I need to know that kids aren’t swept away with parents left behind for no good reason.  I think of Anna and how painful the rest of her life probably felt, knowing that she was spared–the guilt and anguish that would have followed and the need for relief that can’t be found by the things of this world.  When I read their family’s story and think of our own life as a family, I just need to know it’s not in vain.

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Few Results

We met with Reece’s doctors last week to discuss the results of his autopsy.  While I appreciated reconnecting with both doctors, I must say, I hope I never have to have a meeting to discuss such a subject matter ever again.  It was neither overly emotional nor surprising.  Still, they verbalized things that we knew all along but no one ever really outright stated.  It’s not that the staff wasn’t truthful with us.  But when you are walking that road, you can’t just state certain things in such an emotionally-charged environment.  Additionally, no one really knows for certain what is going on at the time.  It is a very confusing and complex process; Reece’s was more complex than most.  Without going into all the details that the autopsy revealed, I want to mention two things.

First, Reece was 100% donor and one cord did, in fact, win out in his bone marrow.  I guess it doesn’t really matter to me, though.  He isn’t here with us, so to me, I bring it up to tie up the loose ends that we discussed throughout this whole process.  From a blood-exchange standpoint, the transplant worked.  But honestly, it just feels like a cheap consolation prize at this point.  Second, Reece’s primary physician told us that he had the worst case of skin GVHD that she has seen yet in her practice.  Granted, she is one of the younger doctors on staff, but still, it is pretty rare for kids to have GVHD this severe.  It’s much more common for adults going through transplant.  Kids’ bodies are so much more resilient.  So, we’ve been chewing on that conversation over the weekend.  Somewhere in the archives of this blog I mentioned how I believed Reece’s story to be about enduring much as a young child.  I was right.  But that is only part of his story.

Where I struggle today is not having the opportunity to have discussed what happened with Reece himself.  In my mind I envisioned that there would come a day where he and I could actually discuss what happened.  I could explain why we made certain decisions and why, as far as what we understood, he had to go through BMT.  I know he doesn’t need me to have that conversation with him now, because he knows why it happened, why it had to happen the way it did, and how it ultimately will be used by God.  But I need that discussion.  I want to hear in his own words what it was like for him.  I want to apologize for so many things that happened.  I actually thought that I would feel some sense of closure on the medical side of things after we found out the autopsy results.  Without Reece here, it is incomplete.  For all the joy-filled feelings I have for him, it still feels like I am sitting here licking the BMT wounds.  Truthfully, I’m not sure how to bring that to resolution.  It makes no sense to constantly remind myself of what happened.  However, I could see that part never going away during my lifetime here.  Because even though Reece doesn’t need that conversation with me, I need it with him.  There is no such thing as talking yourself into feeling better about this type of situation.  As I’ve stated so many times before, it is what it is.

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Catching Up

I took an unintended couple of weeks off from blogging and it felt very good.  No offense or anything.  I just didn’t have anything to share.  I have an awareness that much rest is needed right now and sometimes that includes not deep diving into feelings or at least not rehashing them through the blog.  I have never gone that long between posts and it was odd, but it felt right.  Today, it feels right to post.  It’s eight months to the day since Reece’s transplant.  It’s two months to the day since our wedding anniversary.  Scarlett is nearly five months old.  But what really stands out for me this weekend is that it was a year ago today that I took Reece into Urgent Care and he had his blood drawn.  So it means that it is an anniversary of the beginning of an incredibly stressful road.  But, thankfully, time moves forward and the more we encounter these anniversaries, the more we move through them.  We are one day closer.

The kids and I visited my parents last week as Terry was on the road.  It was bittersweet to go there as I often did with Reece when Terry was traveling.  I hadn’t been there since Christmas when we were there as a family.  He absolutely loved going to visit Grandma and Grandpa and often talked about going there while he was in the hospital.  His bed is in my old bedroom and after we arrived I spent a minute just lying on it and remembering him.  I actually like seeing it there; he loved his bed and missed it while he was away in the hospital.  The first time he visited home in early April, he practically ran to his bed.  He couldn’t walk on his own at the time, but when we got to his bedroom he dropped our hands and moved as quickly as he could to get up onto it, nearly falling as he crossed the room.  When we helped him onto his bed, he just sat on it and grinned and stared at it.  It was as if he had never in his life been in a bed before.  I know he likes that it is at my parents’ house now.  I also have a feeling the girls will like sleeping in it when they are old enough.  If they don’t sleep in it, I will.  We always said that Reece had the most comfortable bed in our house.  It makes me smile just thinking about him all cozied up in it.

We had a half birthday party for Britta today.  Her birthday was two days after Reece’s pulmonary hemorrhage in March.  As Reece was in the PICU, we didn’t see her for the two weeks surrounding her birthday–didn’t ever get her a gift, sing to her, or celebrate–nothing.  It seemed appropriate, now that the dust has settled a bit, to celebrate her turning two.  Plus, she loves to talk about birthdays, so we figured this was as good a time as any to have a party.

Over the last couple of weeks I have had several people reach out from various places and times in my life to share unique things they experienced during the loss of a loved one.  In their sharing I am learning how important it is to safely discuss things and how individualized grief is.  I am grateful that it somehow feels safe to share some level of detail on this blog.  And I’m grateful that people have felt safe in sharing their own personal feelings with me either regarding Reece and his life or in regard to their own loved one that has passed away.

Lastly, I talked to Reece’s primary BMT physician about the autopsy taking so long.  We still haven’t received the full results.  When we do, we will go to the U of MN to discuss them in a fair amount of detail.  I asked her to call me last week (we have been emailing otherwise) to reassure me that nothing was awry with the results.  She assured me that she believed it was a matter of getting the full write-up, but not because of some strange findings.  And why, you may be asking yourself, does it matter at this point?  The results are the results.  Well, it means a great deal to me to know that things were handled appropriately and with the utmost integrity.  It is a respect thing for me.  She received the preliminary results in July, which describes what they found visually, but it does not offer the full detail from the tests they ran.  She did share with me that the lungs were quite sick and likely the main issue.  There were some other things going with various organs as well, but all-in-all everything they saw was consistent with what they believed to be going on at the time.  There were no big surprises based on the initial results.  It is painful to talk to someone about your child’s body failing.  But I need closure on the medical side of things and I am anxiously awaiting getting the full results and having the discussion.  Perhaps after we have that discussion, I will explain what actually happened those last couple of days.  Or maybe I will just let it remain in my memory.  But regardless of what comes out on the blog, I have come to realize and find it important to share that our hardest day of Reece’s life on Earth–his last day–was also his best day on Earth.  There’s a lot I don’t understand about what happened, but I fully believe that is true.

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Dear Clarity

I’m searching for clarity on how to proceed forward with Reece’s memorial (ok, clarity in my opinion on it, since Terry also gets a say in how we go forward).  I’ve struggled in trying to understand if we should be pouring our efforts into something on the medical side of Reece’s situation (MDS research, BMT-related patients, etc) or on the faith side of Reece’s life.  This isn’t to say it can’t be both, but we need to have a starting point and some sort of direction.  I have been waiting before exploring too many options on the medical side, as I want to meet with a couple of Reece’s BMT docs to get their opinions.  We have ideas on where we could possibly be impactful, but I don’t want to double up efforts with the hospital and I also don’t want to bite off more than I can chew in regard to what we want to take on.  So, we have been waiting to get Reece’s autopsy results back so we can discuss the medical options in going forward with a memorial.  We’re on hold for a couple of weeks.  The other side of the coin is the faith approach.  I’m not sure exactly how that would all look or where we would focus our efforts in that regard either.

I ran past one of the schools that Reece might have attended for Kindergarten this year.  Surprise–today was the first day of school!  This day crept up on us; we thought the first day of school for Minneapolis was next week.  It was odd to see all the kids getting dropped off.  This would have been a big day for our family–a Kodak moment.  Now it is passing by like any other day.  But it’s not any other day.  There is a hole that can’t be filled; it’s like having an empty stomach except it is heartache and there is nothing that can be done here on Earth to satisfy it.  It just is what it is.  I’m not going to make excuses for it and I’m not going to avoid it.  I’m sure there are other people out there today going through the same thing–missing out on the same thing.

Also during my run, I thought of and prayed for one of Reece’s BMT neighbors at Amplatz who is currently in the PICU fighting for his life.  He’s had a long road in BMT, in many ways very similarly to Reece.  He’s a fighter.  There’s the whole hospital side of things that we are still recovering from; I suspect it falls into the PTSD category, although I’m only putting that term out there for explanatory reasons, versus some sort of dramatic effect.  Every day was difficult; there are many traumatic and life-changing events that we experienced.  Even one day in the hospital was brutal.  Multiply that by however many days we were there.  I feel such compassion for the families going through that process.  It is still too close to our timing with Reece to be able to meaningfully put any time into supporting BMT efforts, but once we have a little distance, I know I will have a desire to stay connected to BMT families or Amplatz in some way, shape, or form.  Reece did live about a tenth of his life there.

I also prayed for the family of a preschooler who drowned yesterday.  I neither personally know his parents (friend of a family member), nor understand the pain of losing a child due to an accident.  Yet we are lumped into a similar category of grief over a child.  I immediately can relate to this family–knowing, loving, and losing a child.  It’s a genre of grief and loss, if you will; losing a child you knew, spoke with, laughed and cried with, played with, read to, hugged, kissed, and tucked into bed at night.  When we were making preparations for Reece’s funeral, the funeral director told us how rare it is these days to have a child die.  They don’t see it very often.  He works in the “business” and has for 40 years, so he should know.  It seems we have “cured” enough diseases and prevented enough accidents that the mortality rate for children is much lower–certainly a good thing. We keep getting fliers in the mail on infant loss which, for me, is hard to relate to.  I have no idea what it would be like to lose an infant.  Yes, there is a shared theme of grief and loss, so I guess I can relate on that level, but the circumstances are different.  What do I do to navigate child introductions, Reece’s birthday, picturing Reece in places he frequented, continuing relationships with friends that included Reece’s presence?  There seems to be a fair amount of resources out there on infant loss, as well as support for kids who have lost a parent.  But trying to find the group of people who have lost a child; they’re out there, but it isn’t an easy group to locate.  I need to find those people.  And, interestingly enough, we have had a few people reach out who have suffered the loss of a child.  Once they know your situation, they approach to some extent.  It has been helpful to know that we are not alone, even though we logically know we are not.

I guess answers to my questions may never come and, if they do, they will take time and living life through it.  There are no easy answers.  I know with all my heart it will be used for something and I’m antsy about it.  More immediately, I need to know where we should focus our efforts in memory of Reece.

Dear Clarity, I need you.  Sincerely, Terri.

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Memorial Service

A memorial service celebrating Reece’s life will be held on Friday, July 13, at Westwood Community Church, Chanhassen, MN.  The service will begin at 11 am with visitation starting one hour hour prior.  We invite you to wear red (his favorite color) in honor of Reece.

 

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