Monthly Archives: March 2012

Our Twelfth Weekend

Reece has been making good improvements over the last couple of days.  He is on a regular flow nasal cannula, sitting just above room air as far as his flow.  He has been without fevers for the last day or so.  We have been out walking and doing wagon rides, which is helpful, but his activity level needs to increase to help out his whole body’s functioning.

Yesterday, the nurses noticed that he had an irregularity in his heartbeat.  They see this often in kids; they monitored his heart all day and did an EKG to check things out.  The doctors were not concerned, but will monitor it every so often to make sure is not increasing in frequency.  It is likely due to the amount of drugs he is taking right now.  A doctor who happens to specialize in that area was the nighttime doctor last night, which worked out perfectly for a consultation.  She said based on where the irregularity happens in regard to his heartbeat pattern, she is not concerned.  She had the leads taken off for monitoring.  All I can say is…good.

Reece has been dealing with a flare up of his skin GVHD.  They increased his dose of steroids so he is back to receiving them twice a day.  As it did the first time he was put on the steroids at twice a day, it is messing with his sleeping habits.  His evening steroids make him wakeful at night, which then makes him nap throughout the day.  His rash seems to be holding steady–we need to see improvement.  There is still some wiggle room to increase the dose, but we don’t want to go there.  If the rash does not subside, the last resort would be to wipe out his T-cells, which would make him even more immunosuppressed–leading to even more vulnerability to infections.  Additionally, his T-cells are showing 100% donor, so we don’t want to have to wipe out any donor cells if we don’t have to.

One other interesting tidbit of info we learned this week is that according to his latest blood engraftment study, his blood composition still pretty split between the two cords.  It is more uncommon the farther we get out of transplant for one cord not to start dominating.  We’ll see what happens…he’s still 100% donor, though!

It would be awesome if the rash became controlled, the oxygen could be weaned off completely, and the fevers would stay away.  We would actually have passes to go home intermittently throughout the day as a way to get ready for the d-word.  It would be such an encouragement for him to be able to get out of here for a few hours.  It’s a good goal to have in mind.

Prayer Requests:

  • Praise for continued improvements in breathing and no further bleeding
  • Praise for a reduction in fevers
  • Continue to improve in breathing; to wean completely off oxygen
  • Protection from further bleeds and side effects of transplant
  • Improvement of GVHD rash; no need for immunosuppressive drugs; no further flare ups
  • Protection from chronic GVHD
  • Protection from infections and fevers
  • Improvement in blood sugar regulation and weaning off insulin (corresponding to steroids)
  • Improvement in regulating weight
  • Remission and life
  • Home visits and the d-word (I refuse to spell it out anymore.)

Best to all of you and thank-you!

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Journal Entry #4: Fear

I’ve done a lot of thinking about fear lately.  FEAR.  The word even looks daunting if you stare at it for a while.  Emotions are a universal language and fear is a powerful emotion.  Everyone has fears–everyone deals with fear in their own ways.  Just like any other emotion, the more power you give it, the more power it takes.  We do a lot of things to avoid things we fear–we buy insurance, steer clear of situations and people, abuse substances, acquire bad habits, seek therapy, take precautions.  Fear brings even the strongest of people to weakness and it has multiple layers.  It is, in our lives, unavoidable, but it is also purposeful.  I actually see some degree of fear as a healthy emotion; it isn’t good to be terrorized, but the core emotion was designed for a reason.  I have much gratitude for living through some of our latest fears.  Still, they are experiences I hope we never deal with again.

There have been many times in the last five months that we have faced “what-if fears”.  This type of fear is dreading a possible outcome of the circumstance at hand.  It is because of this type of fear that we make decisions that will hopefully thwart any meeting with said dreaded situation.  We walk on a lighted path to avoid the darkened street where danger lurks.  Often times, due to decisions and our ability to exhibit control, we can avoid the problem entirely.   Thankfully, that is the mode in which we typically operate during every day living.

There have been two distinct times, however, in our journey with Reece’s health where the fear we faced was “realized fear”.  It is fear at one of the deepest possible levels with almost everything outside of our control.  It was no longer a hypothetical situation; it was real.  Realized fear is walking down the lighted path and meeting the danger in the environment you have already tried desperately to control through “what-if fear” or it has come with no warning at all.  The first occurrence was when Reece received his diagnosis.  It was surreal–a million different emotions and sensations zoning in on all at once.  My mind raced; I felt as though my life was a movie playing out in front of me.  Still, there was a redeeming quality of hopefulness in knowing that we would likely get through the transplant.  There was an “out” for us–albeit a daunting one–in knowing we could rid him of the disease through BMT.  There was an ability to seek refuge in knowing that Reece could move on to live a full and healthy life.

The second time happened when Reece had his pulmonary hemorrhage. It was the deepest darkness I have ever had to experience.  There was an acute realization that we may have not made it out of that situation.  It felt hopeless, desperate, panicked.  There was very little we could do to control anything.  Not a day has gone by since that happened where I haven’t replayed that situation in my head.

One realization I’ve had as a result of these two situations is the ability to move beyond fear.  I still have many worries about this whole thing, both for our present situation and the future.  But being in a moment where your worst fears are realized allows you to let go of some of the fear itself.  You recognize that time still passes, as those moments don’t last forever.  They have lasting effects, yes, but they pass by as any other time in life.  Part of moving beyond it is realizing we weren’t really in control in the first place.  It was the realization that something else was at work and we had to sit and watch it all transpire.  I never felt alone in it.  I never felt abandoned and I knew that the Lord was near.  Just letting go of trying to control it was hard to do, but it also had some sort of calming effect in knowing we had done everything we possibly could do and it was out of our hands.  I realize I am not doing a good job of clearly describing it; it is best understood through the actual experience.  My point is, in the most fearful situation I have experienced, we were not abandoned and it felt purposeful.  Those two things were surprising and comforting and have made me realize that much of my own fear is anticipation of the worst scenario and the assumption of abandonment.

As I look back, I recognize that the specific things that I feel God has spoken to me about personally in regard to Reece have never been proven untrue.  Since Reece’s diagnosis, I have had many prayers for him–things that I have wanted for him to be spared from.  God never promised He would spare Reece from any of those things, but He did speak specifically about what He would do.  I asked God to give Reece a clean bill of health–Reece was given a diagnosis.  I asked God  to spare Reece from side effects of transplant…Reece has battled multiple side effects, including  one of the most serious.  However, even though He didn’t answer some of my prayers in the ways I wanted Him to, He never broke a promise.  And He never backed down on things I believe He specifically spoke to in regard to Reece.  He also never left us.

It would be really easy to fall into the grip of fear about Reece’s future.  I am not just referencing Reece’s hospital stay.  The chance of relapse, the chance of other complications, the chance of side effects from drugs/chemo/radiation…the list goes on…all could become overpowering in the amount of fear they produce.  I also have the fear of Mother Nature; that had Reece been given this diagnosis 20 years ago, there would have been no option.  Therefore, how much tampering with one body can happen before Mother Nature takes what she believes was her own to begin with?  We are walking the tight rope of modern medicine and that is hair-raising.  As I have reflected on the last 11 weeks and, specifically, the last three, I realize that we were brought to a place where there was nothing to do but just wait and see.  There were no other options to seek, no paths to take, no person to give us a definitive answer.  There was nothing to do but wait and see what was in store for him.  It has become apparent to me that God doesn’t make decisions on a whim.  He doesn’t rush things along and He doesn’t do things haphazardly.  I have made a lot of assumptions about how God operates, based on how I operate.  God doesn’t work that way.  He has seemed methodical and calm.  I don’t know how I truly know that, but for whatever reason, at the center of the storm, God has seemed calm.

I found that a great source of comfort (much to my mom’s suggestion) during those first critical weeks post-hemorrhage and even throughout other parts of transplant has been to get up in the morning and thank God for what He has given us in that very day.  This, I feel, sounds basic and somewhat obvious, but getting up and being thankful that I didn’t get an urgent phone call overnight, that Reece was doing ok at any particular moment, that he had a good hour/day, that we were given yet another day with him–acknowledging what was being given to us was comforting.  The fact is, this situation has shown me how blessed we were with what we had before this diagnosis, that every day is a gift, and that we have been spared from so many things; I feel it actually highlights how loving God is.  I can not stress that enough.  There have been many times over the last five months where I have had to keep telling myself that God loves us, despite feeling confused and at odds with Him.  But through what was a terrifying experience, I have been blessed in knowing that God was near; He was in control.  He did not break a promise and it highlights how much He has loved us and spared us from so many other things–both related to this circumstance and in other areas of life as well.  We have endured much, but we have been spared from even more.

“Be strong and courageous…for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

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Day +65

Here’s a quick update on how Reece is doing.  Overall, I feel positively about his progress.  Later Monday, Reece’s rash flared up, so he is back on steroid creams.  The flare has prevented his IV steroids from starting to taper off.  Because his steroids haven’t started to taper, he still doesn’t have relief from his insulin needs.  He is still fighting fevers–although low-grade at this time.  Blah.  It’s all connected.

On a positive note, Reece has been doing well with his oxygen.  Yesterday, they were weaning down his pressure (basically the amount of air that is forced into his lungs as he breathes on high flow oxygen) and his oxygen was only at 30% (we breathe room air at 21%), which is the lowest they usually put the O2 setting.  Overnight, he was able to stay on high flow, versus going on BiPAP.  They did turn up both the pressure and O2, to assist with his nightime breathing rate (everyone breathes more shallowly while asleep).  The plan today is to continue to wean down the pressure with a goal of 8-10 liters (he’s on 12 liters right now).  To put it in perspective, when he was on oxygen the first time, the pressure only went up to 8 liters, per the machine’s settings.  So once he can comfortably sit at 8 liters of pressure, he can go down to a lower pressure nasal cannula.  The pressure from the air that he is breathing is creating some build-up of air in his stomach, so his stomach appears distended (Reece and I have a similar profile right now).  Hopefully, as the oxygen is weaned, this will resolve itself.

When he is not resting, Reece has been more talkative and interactive.  He has been able to take wagon rides again and has been walking during parts of the outings.  He has been eating some and drinking lots of milk.  Yesterday, he ate macaroni and cheese!  Six glorious bites.  He’s doing well and I really hope I don’t regret posting early in the morning, because things tend to change about 20 minutes after I put up a blog post.

I know he is getting back to his old self, because the birthday cards and gifts from his preschool classmates and friends were a big hit!  Thanks to all of you who have sent Reece things, from his preschool classmates and teachers, to BSF teachers and buddies, family and friends, acquaintances, and total strangers.  I have not sent out a single thank-you card (yet), but it isn’t because we aren’t thankful.  Those things are so helpful and appreciated and Reece has received much encouragement in hearing from his pals.  We are loved.  Thank-you!

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Bold, Loving, Sensible

It was definitely not the birthday weekend that I had envisioned when we were admitted to the hospital.  We had all thought he would be home and feeling much better than he actually did.  Still, Reece did have a Lego-themed birthday cake and party, including singing and presents from the nurses and doctors, and many well-wishers.  He was battling a fever all day on Saturday, but held his own despite not feeling his best.  He had many smiles throughout the day and that was enough to make my day.  Yesterday he fared a little better temperature-wise.  He still was lower in energy.  It was hard to watch him have his birthday in the hospital; he deserves to be having fun, doing 5-year-old things.  We need to get him out of here.  It’s hard for me to post pictures of Reece right now, because I feel so protective of him.  But I am posting a picture of him with his cake.  You can’t tell by his face so much in the picture, but he thought is was pretty cool.  We never did cut into it, as he didn’t feel up to eating it.  When we get home, we will do another big party and a bigger cake and lots of goodies.

Reece with his Lego cake

Just so you know, Reece’s hair is growing back, but one of the drugs he is on to suppress his immune system (in order to avoid GVHD–all allogeneic BMT patients receive this drug) makes the kids grow hair all over their bodies and especially thick hair on their faces.  These little guys have unibrows and sometimes mustaches and other facial hair.  When he is off of that particular drug, the hair that is not normally thick on his face and body will fall out, leaving his regular amount of hair behind.  His face is puffy due to the steroids he has been on for GVHD and the hemorrhage.  They are starting the steroid taper tomorrow and it will last for about 10 weeks, assuming his rash doesn’t flare up.  He will get back to looking like his normal self.  He is a cutie despite all the weird side effects of the drugs.

I have several different posts running through my mind–things that are probably worth writing about, but I haven’t been able to pull them all together mentally to make them sound coherent.  I can, however, sum up how I am feeling in four short words–I am freaking out.  I am 34 weeks along as of yesterday.  I would be shocked if I went to my due date; it could happen, but it’s not likely.  That gives us about a month until the baby is born.  I can not fathom what it would be like to give birth while Reece is still hospitalized or how we would manage a child in the hospital, a busy two-year, and a newborn.

I see our best case scenario for Reece’s discharge being two weeks out.  No one at the hospital is even to the point of mentioning it, so things would really need to come together.  His lungs need to repair, he needs to be fever-free, and he needs to take his meds orally.  This also assumes that he doesn’t catch any further illnesses.  If anything else comes up, it means more time in the hospital.  This whole scenario is getting exhausting to watch and live through.  I can not envision our lives ever getting back to normal.  I have had some distinct feelings about things turning around.  I’m not going to weigh in on what that will look like, but my gut feelings have been pretty accurate all along.  I have a gut feeling that we will be going home sooner rather than later.  The only reason I am putting that out there is that I feel like this today, right now, this moment.

As I was getting ready this morning, a verse came to mind from 2 Timothy 1:7, “God doesn’t want us to be shy with his gifts, but bold and loving and sensible.”  I had only ever considered this verse with spiritual gifts and didn’t apply it to what I consider some of my most precious gifts in life–my kids.  This is what I plan on focusing on for the next several months in an effort to keep persevering.  Otherwise, my crisis tendency is to bury my head in the sand like an ostrich.  That isn’t an option–it only ignores the problem while isolating my kids and family.  My kids–all of them–need me to be these three things.  I have a good start on the loving part, but the bold and sensible–that’s going to take some real effort.  The only thing I feel I can control is how I handle what is given to me, so this is where I am starting.  No more freaking out over beeps in the hospital room or “what-ifs”.  Those mentalities are, among other things, defeating and draining places to live.  I’ve been doing that for nearly three weeks and I can’t do it any longer.  I do, however, still have a fair amount of concern about Reece’s recovery, getting Britta back to Minneapolis and settled, and integrating a new baby into the family.  I’m only human and I’m a Type A human at that.

Prayer Requests:

  • Reece’s fevers to subside and infections to resolve; protection from further infections
  • Reece to wean off of BiPAP and high flow oxygen; normal breathing to resume
  • Return in energy and continued increase in desire to play and do normal 5-year-old activities
  • Improvements in all things BMT
  • Discharge prior to birth of baby
  • Resolution for our family in bringing us back under one roof
  • Comfort and peace of mind for our family
  • Trust in God’s Master Plan
  • Remission and life for Reece

Thanks all.

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More Questions, More Prayer Requests

I should never do posts in the morning, because by the time they are up on the blog, the day has completely changed.  I arrived at the hospital and Reece was back on BiPAP after a brief period of high-flow this morning.  They were preparing to take him down for a CT scan.  We haven’t received the official results from the radiologist.  The doctors did review the scan and thought it looked maybe slightly more thick from junk in his lungs; there wasn’t anything obviously new.  The doctors don’t feel that he is bleeding again, but likely fighting some sort of infection.  They are not pushing for a bronchoscopy at this time, as it would most certainly mean intubation again, and would likely not change the course of treatment.

He is still battling fevers and behaving in a similar manner as he would if we were at home and sick.  He is somewhat chatty and responsive when he is awake, but he is sleeping a lot as well.  It definitely requires more work from him to breath and he is noticeably uncomfortable, including whimpering when he is sleeping.  Something is not right.

Prayer Requests:

  • Fevers to subside
  • Regular breathing to resume
  • No need for bronchoscopy or intubation
  • Protection from another hemorrhage
  • Improvement in health and no further setbacks for Reece
  • Discharge
  • Remission
  • Life

Thanks, all.

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March 23, 2012

It’s been an interesting couple of days.  Reece’s personality has been coming back with some momentum.  He has begun actually speaking in his normal style, versus giving one word requests and answers.  He has wanted to play, he’s requested certain people, and he even willingly went on a wagon ride a couple of days ago. He has been eating some and drinking chocolate milk.  What a guy!   On the getting-Reece-back-to-his-normal-self front, things have greatly improved.

Reece has been working through some lower grade fevers.  Nothing has shot up too high and there have been many times where his temp has come back to normal on its own.  Yesterday, however, he did struggle with breathing again and they put him back on BiPAP during the day (the day prior he had been on high flow for 12 hours/BiPAP for 12 hours), to give his lungs a rest.  He made improvements throughout the day and apparently had good stats overnight.  I hope it was just some extra rest that he needed after two very active days.  His chest x-ray was reported as unchanged from the previous day, although I thought it looked a bit more murky.  His lungs have not cleared entirely, which means he is either still fighting an infection or there is still some (likely old) blood in there.  We’re praying for a good day for him today and improvements in breathing and fighting infections.

I am going back to Normal Land and taking Britta to her two-year check-up this morning.  She’s rocking and rolling, so I don’t have any concerns.  She’s changed so much since this all transpired.  Her vocabulary is amazing–she knows her colors, shapes, and has counted to 20 (with a little help)!  Here’s a photo of her from last weekend.

Britta and Daddy

Reece’s birthday is tomorrow.  I can’t believe he is turning 5!  I will say that during this hospital stay, he seems much older to me than what he actually is.  I’m not sure what that is all about other than a reflection of his patience and tolerance levels.  I would have never imagined he would still be in the hospital for his birthday and yet I am happy that he has made it this far and hopeful and anxiously awaiting his return home when we can throw him a bigger celebration and he is feeling more like himself.  Still, I ordered him a Lego cake and will be picking up some special things to celebrate the day.  He is excited for it, too, as he has big smiles when he talks about it.  What a special day it will be, no matter where we are celebrating.

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Could You Be The One?

What do a former Army Special Forces soldier, a hard-core fitness ‘cult’, On-line Data Back-Up Services and a NW U.S. based coffee company have to do with each other?  They have each donated product to my ‘Be the One Run’ fundraising efforts.

GoRuck is a specialty bag making company making very cool product in Montana.  The founder is a former Army Special Forces (Green Beret) soldier who recognized the value in military grade packs for civilian (and military) use.  GoRuck has donated $150 work of product that will be given to a randomly selected donor on March 31.  Please check out the GoRuck website, www.goruck.com , to learn more.  Buy a hat or a bag or even sign up for a local GoRuck challenge if you have the nerve.

TwinTown Crossfit is a Crossfit box here in Minneapolis.  The principal owner of this gym is Teddy Kim and his commitment to healthy lifestyles and functional fitness is very solid.  TwinTown has donated a 10 visit gift card, retail value of $175, for use at either the TwinTown Crossfit or Crossfit 612 location.  This prize will be given to a local donor on April 15.  Learn more at www.twintowncrossfit.com

On-line Data Back Up services provide an invaluable service for those of us who keep so much of our lives on our computers.  Frontier Communications has a data back-up service, F-Secure, and has donated several gift cards that will provide a 3-month trial for this service.  These cards are being awarded bi-weekly beginning on March 23.  www.frontier.com for more information.

And that classic American company that changed the way much of the world views coffee, Starbucks, donated a gift card that has already been given to a donor.

In order to be eligible for a prize all you need to do is donate $25 at my Be The One Run donations page (link below).  Each $25 donation gets you 1 entry into the rewards drawings.  $100 gets you 4 entries.  It doesn’t matter when you donated, as long as the donation was at least $25, you will be entered.  However, you will only be awarded one prize per $25 donation. That same $100 donor could receive 4 unique rewards. http://www.bethematchfoundation.org/site/TR/BeTheOneRun/BetheOneRun?px=1769049&pg=personal&fr_id=1830

Please consider donating whatever amount you can.  More importantly, register to be a marrow donor. That is where the most direct difference is made.  Marrow saves lives every day. www.bethematch.com

Terry

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