Monthly Archives: February 2012

Be The One Run

Over the last (almost) five years Reece has spent nearly as many miles in the jogging stroller as he has out of it.  He has watched the Twin Cities Marathon every year he has been alive and enthusiastically gives out High Fives just past the 8 mile mark.  Terri and I have run more laps around Lake Harriet than either of us can count.  On May 19, I will be running one more lap of Lake Harriet.  However, this will be the most important 5k I have ever run.

I am running the Be The One Run to help raise funds to save lives through bone marrow transplants.  Every year 10,000 patients with leukemia, lymphoma and other life-threatening illnesses that can be cured with a transplant have no familial match, just like Reece. They rely on Be The Match to help them find an unrelated donor and get the transplant they need to live.

The funds raised will be used to help patients by:

–         Supporting transplant research

–         Helping cover uninsured costs

–         Growing the Be The Match marrow donor registry

I have a modest fund-raising target of $500 and will match donations at fifty cents on the dollar.  So $500 from donors will result in a $750 donation to Be The Match.  If that target is hit before May, I will raise the target and will start having raffle prizes for donors.  More on that to come soon enough.

Please donate if you can, pass the message on to others, and add your name to the donor list.

My fundraising page can be accessed at https://secure2.convio.net/marrow/site/Donation2?idb=23653063&df_id=3559&FR_ID=1830&PROXY_ID=1769049&PROXY_TYPE=20&3559.donation=form1

If that doesn’t work, please send an email to Help4Reece@gmail.com and I’ll get you more information.  And, if you’d like to run with me, let me know.

Thank you.

Terry

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Biopsy Results

Reece’s bone marrow biopsy results came back today and it revealed 0% of his old blood!  They are still going to run the longer test for the monosomy 7 to be thorough, but realistically, it should not be there if his old blood didn’t show in the breakout.  It sounds like one cord may be overpowering the other, but it is still pretty close as far as the split between the two.  We are pretty excited about hearing this news!  I still want to get the official monosomy 7 results, but I do feel more at ease.

It seems when we get one clear result back, something else crops up.  Today, Reece looks yellow and very puffy.  He doesn’t have the energy he had a couple of days ago.  They are going to do an ultrasound this afternoon to see if he has stones and to check for other liver complications.  Most likely this is due to the medicines he is on, so they aren’t thinking it is necessarily anything other than that.  They do want to rule things out to be thorough.

Reece is not feeling well.  Despite all the progress he is making and all the celebrating we are doing, he is still battling tummy aches, tiredness, and feeling ill.  We want to see him return to his normal self.  It will be a long road to get there, but that is a big prayer request right now.

Praise:

  • Awesome bone marrow biopsy results
  • Fevers down

Prayer requests:

  • Clear ultrasound results
  • Clear monosomy 7 results to support the bone marrow biopsy
  • Return in energy and general wellness for Reece (he needs this!)
  • Protection from fevers, infection, GVHD, and relapse
  • Discharge

Thanks for lifting Reece up in prayer!

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Updates, Hospital Visits, and Parenting, Oh My!

It’s been an interesting weekend for us.  I am pleased to report that Reece has done quite well over the past few days.  He was up and around on Saturday–he took a wagon ride early in the morning and spent about five minutes in the playroom before he announced he was done and needed to go back to his room.  They are working on tapering down his pain and anti-nausea medicines and, so far, things have gone okay.  He hasn’t been vomiting much, so they are not proceeding with the GVHD scope tomorrow.  Yes!  He did spike a fever over the last few days, so hopefully that will come back under control.  He has also been gaining more water weight again, so his diuretic has been increased to try to compensate.  The docs have hinted at possible discharge later this week, but many things need to align before that happens.  Still, we are hopeful that the end of this particular hospital stay is in sight.  I think the earliest day we can hope for is Friday, but I am not going to hold my breath.  One day at a time is all we are focused on and that is five days away.

My mom was up with Britta this weekend and took significant chunks of the hospital shifts so that Terry and I could spend time together and with Britta.  Terry hasn’t spent a night away from the hospital in two and a half weeks, so Friday night was going to be his first night in our bed in a long time.  He went to bed at 7:45!  Unfortunately, he couldn’t avoid being woken up or hospitals in his cherished night at home, because around midnight I woke up with some pretty strong abdominal pain.  By 12:30 we were on the phone with the nurse line.  By 12:45 we were calling friends to come over to watch Britta.  By 1 am Terry, Britta, and I were making our way over to Methodist Hospital to get checked out.  Terry dropped me off and then brought Britta back to the house to have a friend watch her.  (She was a trooper–smiley, happy, went right back to bed.)  All I could think about was (a) this is way to early to be having this baby, (b) I really hope I don’t end up being put on bed rest, and c) we have no ability to save the umbilical cord right now, since they aren’t sending me the kit for another couple of weeks.  I also kept thinking, “This can not seriously be happening.”  They monitored me for a couple of hours and made sure everything was alright.  I was not in labor, although they did pick up some mild contractions, that I could not even feel.  The good news is, I left without having any issues.  The unfortunate part was that Terry didn’t manage to get a night away from the hospital.  We crawled back into bed around 4 am and got a few more hours of sleep before Britta woke up.  I have another ultrasound scheduled for Friday morning, so we’ll check this little gal out and see how she is doing.  I was just in for a check-up last Thursday and everything seemed well with her.  I suspect she is doing just fine.

When I got back to the hospital this afternoon, I had been gone for nearly two full days.  It is the longest time I have been gone since we have been here.  It was hard to be away, but helpful as well.  When I walked back into Reece’s room, he was sleeping.  When he awoke to use the bathroom he took one look at me and started crying.  I am not sure what that was all about, but it is one of the few times I have seen him cry up here, believe it or not.  Either he was glad I had been gone or glad I had returned.  I choose to believe the latter.  After my mom left, he and I had some tender moments just chatting about how much I missed him and how jealous I get when I have to share him with other people–he got a big smile on his face when I told him that.  I also told him he is my “best good pal” (in the words of Forrest Gump) and how I have spent more one-on-one time with him than any other person in the whole world.  I love him so much.  He must be feeling better, because he made sure to boss Terry around a little bit when he got here a few hours later!

I have had at least one now-I-am-the-grown-up moment or realization since we have been here.  For the first couple of weeks we were here, I think I was shell-shocked.  Watching Reece go through this was difficult and I think in my own need I was looking for signs from him to provide me with relief and comfort.  I wasn’t consciously trying to demand it from him, but naturally, I was looking to be encouraged by what he did or did not do.  In the process of doing so, it dawned on me that I was so consumed in my own need to feel comfort, I was doing a terrible job of being a source of comfort to Reece.  It’s not that I wasn’t supporting him, but I wasn’t doing one of the basic things that parents need to do to help their kids out–helping them to feel like everything will be okay.

My parents did a great job of making me feel like it was going to be okay, no matter what the circumstance–at least that is how I remember it.  They still do that even now that I am an adult; the need for this comforting is always there, no matter what the age.  Now I realize that just because they don’t know how things will turn out (and who humanly does?), doesn’t mean they don’t say things to help me feel like it will be okay.  It occurred to me that I need to be doing this for Reece.  I am no longer only a child that needs this comfort, I am a parent who needs to provide this comfort.  I need to do things in a way to make Reece feel confident and have confidence that he will be okay, no matter what.

Several weeks ago, as I was getting ready at home to come to the hospital, I told myself that I needed to start providing relief as a parent, versus waiting for Reece’s improvement to relieve myself.  From that day forward, I began to talk to him like were back in our house and say things that were familiar to him; I started acting like myself around him.  I made sure that I sounded confident in the way I addressed him.  I began telling him that he WILL get better, the he will go home eventually, that he will get his energy back, that he will go back to school, etc.  And you know what, I actually began to feel better myself as a result.  There have been so many moments where I have let my doubts and fears override my demeanor.  I have not wanted to lie to him, to set his hopes up and then have to bring them back down.  But I realized that I am not promising him things that won’t happen and part of being a parent is instilling confidence in your child, even when you may not know that things will turn out one way or the other.  Putting my best foot forward in this does not mean Reece hasn’t seen me cry or show other emotions.  He very much has experienced many emotions of his parents in this.  But his confidence lies in how we handle the totality of the situation and without helping him feel hopeful, I feel we are dropping the ball.

So as Reece has started to slowly improve, I have begun to talk about our house, our family, plans we have in the upcoming months, and normal things that we will be doing in the near future.  Yes, we WILL be doing regular things again.  We are trying to pull him out of his hospital world and bring him back into some sort of normal life.  Many things we can not control, but our actions and words, we can.  One thing I have learned in my adult life is that home is much more about the people you are surrounded by, versus the surroundings themselves.

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50/50

Ok, I’ll fully disclose that I have hardly logged into this site all week.  Nothing personal–I am just burned out and, until today, didn’t feel like talking about it or writing about it.  Additionally, I was waiting to hear back on some engraftment study results before I did another post, so I could share where Reece’s blood progress is at.  Apparently, “about three days” means closer to one week, with regard to hearing back on test results when you’re in a hospital.

Anyway, a couple of things have happened this week in regard to testing Reece’s blood.  Before I go any farther, let me explain a little something about the hierarchy of importance in these tests (these are my own terms).  Getting results from the blood is one thing, but the Big Kahuna of all test results lie in the bone marrow.  To put it in perspective, during the diagnostic time period last fall, Reece’s blood showed very few abnormalities or “dysplasia.”  It was the bone marrow that revealed the monosomy 7 and other dysplastic features that landed him with the MDS diagnosis.  In fact, the genetic testing for blood could have been totally normal, while his marrow would have revealed something genetically different.  Keep that in mind as I am discussing this next part.

On Monday, Reece’s blood was drawn to do an engraftment study.  This tells us what the makeup of Reece’s blood is between his old blood, Cord A, and Cord B.  Today, we were told that the study revealed nearly a 50/50 split between the cords with only 1% coming back as Reece’s old blood.  Praise God!!!  The 1% that remains of his old blood is “negligible” and not a concern by the docs.  I asked the doctor, “So this is good, right?”  His response was, “It’s perfect.”  He was wearing a mask at the time, but he had a huge smile underneath.  It was great to hear and see!   A lot of times one cord will “win out” over the other and take over the blood completely.  This may or may not still happen.  I went on to ask the doctor if he would be at a higher risk for GVHD if both bloods were always present and he said it would actually mean a lower chance.  I don’t get that one, but ok.  Perhaps it means that the two bloods will hang out with each other and leave Reece’s body alone?  No idea and don’t care as long as everything is doing what it is supposed to do.  The doctor also made a comment that indicated he would expect the marrow engraftment study to be consistent with the blood engraftment study.  So allow me to back up a bit…

On Wednesday, Reece had a bone marrow biopsy.  They will be looking for the presence of monosomy 7, which is why Reece’s blood is dysplastic in the first place.*  Any presence of monosomy 7 is obviously a bad sign.  They will also do an engraftment study, similar to the one done on the blood.  We don’t expect the results to come back until next week.  If I sound a bit reserved on the results we learned today from the blood it is because it feels like we have been here before.  When we were in the diagnostic process, we had MANY blood tests done.  Even the preliminary appearance of the marrow looked normal.  It was only under this longer scoping process with the marrow that anything was found.  Until that comes back clear, I feel pretty reserved on the whole deal.

Every week we have been here I have thought, “This has been the hardest week so far.”  This week is no exception.  On paper and clinically, Reece has improved.  His fevers are down, his oxygen is back to normal, his counts are coming in.  But he has been vomiting quite a bit.  He has shown improvement over the week, but as of the last 36 hours, the vomiting has returned.  This whole ordeal is like a tricky puzzle.  So many symptoms overlap, so the vomiting could be from his gut not yet wanting to process food and liquids, from stress, from medications, from withdrawal from medications…it is very confusing.  Long story short, if they continue to taper down the medications and Reece’s nausea gets worse as a result, they will be doing a scope of the upper gut on Monday to see if he has GVHD in that area.  He is improving, but it is just one thing after another.  And he has hardly any energy at all.  These past few days he has wanted to nothing but sleep.  Again–why is this?  Is it because he is fighting something off, he is making up for restless sleep over the past few weeks, he is overly medicated?  While we have a lot to be thankful for–and we are thankful–I feel depleted on just about every level.  One of the worst parts of this is knowing that my crazy-energetic 4-year-old wants to sleep all day, versus play and do fun things.  He can be out of his room, but it takes a lot of coaxing to get him there.  It just isn’t right and when I say, “I want my kid back,” that is what I am referring to.  He is doing better, but he has a long way to go.  I know this is a process, but for the last 36 days, he has been in this room, battling it out.  Enough–I want this to be done and I want him to get back to being a kid.  It is a desperate feeling.

Praises:

  • Reece’s blood engraftment study results
  • Subsiding of fevers

Prayer Requests for Reece:

  • Nausea to subside; no GVHD
  • Clear marrow engraftment study results and NO monosomy 7
  • Ability to get off of medications; protection from withdrawal
  • Protection from infections
  • Return in energy and desire to do normal things
  • Discharge

Prayer Requests for Us:

  • Perseverance
  • Trust in God
  • Tolerance for this process
  • Ability to meet Reece’s needs
  • Rest

Thanks for your continued support and prayers and for lending an ear.

*A brief refresher for you.  “Myelodysplastic” literally means abnormal bone marrow.  MDS is either considered primary, where there is no obvious cause or secondary, where there is an obvious cause.  Secondary MDS would be a result of chemotherapy or having Down Syndrome, among other reasons.  Reece has primary MDS as a result of having the genetic abnormality of missing one chromosome 7.  They have no idea why or when this happened, thus there is no obvious cause to it.  The missing chromosome made his blood do odd things, most noticeably it enlarged his red blood cells.  Eventually, it would have caused different parts of his blood to go haywire.

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Just Another Day on the BMT Unit

Another weekend has come and gone and we are proceeding forward.  Reece’s blood is being drawn today to see how much of his blood is new, versus his old blood.  I had hoped to hear back today, but it takes three days to get the results back.  Thursday.  Oy.  He will have a bone marrow biopsy sometime this week.

He is vomiting a lot.  Apparently, it is pretty normal for kids to experience a lot of vomiting, especially since they have not been eating for several weeks.  They may do an ultrasound to make sure everything is ok with his gall bladder.  There is a chance that he will need to be tested for GVHD of the upper gut.  Again, oy.  We could use some prayer on this one.  Pray that his nausea is only related to getting his body used to eating again and that is subsides soon for Reece’s comfort.  Pray that this is not GVHD or any other complication.

Also, please continue to pray that Reece’s old blood is completely gone.

Patience is a virtue that I am working on, but continually struggling with.

I am tired.

I am sick of this joint.

I want my child back.  All of him.  Except his old blood.  Not that.  Everything else, though.

I am going to go read my book while Reece sleeps so I can get a mental break from this.

Cheers.

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A Negative Is A Positive

Reece has had a great couple of days!!!  YES!!!  It feels so good to say that.  He had his biopsy yesterday to test for GVHD.  The first glance of photos showed relatively clear results.   After he came back from the procedure, he was doing so well with his breathing, they took him off of supplemental oxygen and he has done great!  This morning, the docs had a good report on his progress.  His counts look good, his fevers are coming down, his oxygen needs are pretty much back to normal, his rash is basically gone.  AND–we found out this afternoon that his tests came back negative for GVHD!!!  YES!!!!  I love it!!  It brings tears to my eyes.  Never has the word “negative” felt so positive!  Of course, GVHD could still happen–it could crop up later.  Today, it isn’t there.

So we’re praising the Lord for answered prayers (and many “yes” answers, at that):

  • No GVHD so far
  • Off of supplemental oxygen
  • No infections thus far (although they still feel that an infection is what he was fighting in his lungs)
  • Improvement in blood count numbers
  • Improvement in symptoms from earlier this week

Here are our prayer requests:

  • Continued improvement in blood counts
  • On Monday, they will test to see how much blood is cord A, cord B, or his old blood.  Pray that one of the cords has taken over and that his current counts are not from his old blood
  • A bone marrow biopsy this next week that shows good results
  • Protection from infections
  • Protection from GVHD and other complications
  • Reece’s energy to return
  • For pain, fevers, and nausea to go away
  • Improvement enough for Reece to return home

My dad and I were chatting this morning, well before we knew about the results of the GVHD test.  I was telling him how I have had a realization during the last couple of months regarding prayer and God’s answers.  Of course, we were hoping that this latest test would come back negative.  However, this has been a long-term prayer of mine and will continue to be–realistically it will be there for the rest of Reece’s life.  We have had some answers to prayer from God that have abruptly been “no” or “not now”.  I have tried to resist feeling entitled to a “yes” after receiving some disappointing answers.  In other words, “God, you said no to this, so now we get a yes on that.”  I know He doesn’t owe us anything.  In fact, everything really begins to feel like a gift–each moment, each smile, each day your child wakes up–things that normally are taken for granted.  Still, I was so hoping that this test would come back negative and help sort of balance out the equation.  God doesn’t work like that.  Yet I find my mind getting into those ruts.  I have to keep fresh on acceptance of whatever comes our way.

Additionally, I have caught myself many times thinking of my prayer life and what I do with it–how much am I praying, how exactly am I praying, how bold am I with God, am I praying faith-filled or doubt-filled, and so forth, as though it would change the way a prayer is answered.  Again, what a brain rut this becomes.  I don’t believe God is looking for some sort of formula in how I am praying.  His answers have nothing to do with what I am doing or not doing–including frequency, type, or content of prayer.  His plan is His plan.  Yes, He wants me to ask Him in faith and to trust Him, but His plan is still in place.  That is my personal truth in this; I know there are lots of varying opinions on prayer.  This is what I have realized for myself–nothing more.  Truth be told, my prayer life is very different right now than what it normally is, in that I have spent far less time in concentrated prayer and most prayer time in intermittent prayer throughout the day.  I still try to do my devotional at night, but some nights I am so tired, I can’t help but just go straight to bed.

Three big things have come out of this change in my prayer time.  First, it has highlighted how naive I have been to think that God’s faithfulness to me has anything to do with my faithfulness to Him.  That goes for any situation in my life.  Second, His answers don’t change based on length of time spent in prayer.  Rather, I have noticed the less time I spend in prayer, the more I miss it.  Where for most of my life, I thought if I wasn’t praying, I was somehow going to be forgotten by Him or punished in some way.  I now realize that since I have spent more time with Him over the last several years, I miss not spending that time!  He has become a trusted friend.  The time not spent with him doesn’t change His devotion to me, but it highlights how much I miss Him.  Third, the time I am not spending in prayer, doesn’t mean He hasn’t heard my requests.  The Holy Spirit intercedes on this one and it is powerful.  Much of the time I have had no clue what Reece needs here.  Even the doctors are troubleshooting.  God knows it all–he doesn’t need a diagnostic test to understand what Reece needs.  Yes, the Holy Spirit is doing some powerful work in places we don’t even realize.

My whole realization through this (in my opinion, of course) is that God’s plan is His plan.  Just like we are saved by His grace through faith, not by our own actions (Ephesians 2:8-9), so I believe we receive answers to prayer.    That doesn’t mean we shouldn’t ask, but His sovereignty covers everything.  It has nothing to do with how many times I ask, what words I use, how I say something, if I am on my knees, or if I am praying certain prayers.  He hears and sees the need, even if we can’t vocalize it or even realize it.  I have been harder on myself than God has–he knows every thought rolling through my head.  He knows every fear, heartache, painful moment, silent need.  And He addresses them; He is near whether I know it or not.

The last piece I wish I had shared earlier in the week, because it was such a great experience, and it was in the middle of some very challenging days when it happened.  These last two weeks have been incredibly difficult.  On my drive home sometime this past week, I was listening to a song (Big Daddy Weave; Audience of One) and I felt so grateful to God.  Truly.   It seemed so strange to be in this painful place and all I wanted to do was praise the Lord!  I am the kind of person who, when singing songs during a church service, something always holds me back from raising my hands, clapping, or really outwardly worshipping, other than singing the song.  While listening to this song, I was overwhelmed with gratitude and I am pretty certain if I hadn’t been driving, I would have flung my arms wide open.  Feeling broken down, I have found in this that it makes me so incredibly grateful to know that Reece has a powerful God who loves him, that we are not alone, and that every day we are blessed to be here and to have the things we are given.

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More Testing

I walked into the room this morning and Reece was smiling at his dad, who was dancing to a Lightning McQueen card that his grandparents had sent him that plays music.  I joined in the dancing and we managed to get a laugh and several smiles out of Reece.  As far as how he is doing, it is a mixed bag.  His counts are very good–discharge level good–so of course this is helping with his recovery.  The down side is, he is still on the oxygen, although he is making good improvements each day, and he is dealing with symptoms that they are thinking are Graft-Versus-Host Disease (GVHD).  It is a side effect of transplant where his body is fighting off his new blood cells.  There are two “versions”, if you will, of GVHD.  One is called acute GVHD–it happens within the first 100 days post-transplant.  It responds well to treatment and is considered somewhat helpful in getting rid of his old blood.  Since none of the tests so far have come back positive for infections, they can not explain his fevers, rashes, and other flu-like symptoms he is having.  This is why they are doing further testing to see if it is acute GVHD.  There is a higher risk than normal for him to get this, based on the two-cord transplant.  It was part of the reason we struggled to make the decision to participate in the study.  He received a high volume of stem cells for his body, plus two different blood types from two different cords.  Additionally, his counts came in very fast.  It makes sense that most signs point to acute GVHD.

The other part of our struggle to participate in the study, was the other type of GVHD–chronic GVHD–that can occur typically after the first 100 days post-transplant.  It could be years down the road before it makes an appearance.  It doesn’t respond as well to treatment and, like its acute counterpart, can take various forms.  Just because you get acute, doesn’t mean you will get chronic, and vice versa.  There is a higher chance to get the chronic version if you have had the acute, but it isn’t a one to one relationship.  Chronic GVHD is rare in children, but the term “rare” doesn’t mean much to me these days.  Chronic GVHD, my friends, is probably my biggest fear of this whole process.  What happens is you basically have swapped one disease (MDS) for another (GVHD).  This is quality of life we are talking about and I don’t want my child to suffer for the rest of his life.  I want him to go on to do fun, normal things.  I want him to experience the innocence of childhood–not the realities of chronic illness.  Do me a favor and don’t do a Google search on GVHD.  Or at least don’t ever tell me about it.

The “good news” is that his two-cord transplant doesn’t put him at a higher risk for chronic GVHD–only the acute version.  Well, I guess we don’t ever talk in absolutes these days, so I should rephrase by saying there is no statistically significant difference in risk for having chronic GVHD with a two-cord transplant versus a one-cord tranplant.  That last sentence is thousands of dollars worth of college stats courses being put to good use.  BAM.

Tomorrow morning, Reece will be having a biopsy done to see if his symptoms are, in fact, due to  acute GVHD.  If so, he will be given approximately 10 weeks worth of steroids to treat it.  And it is treatable, praise!  Still, this has been a MAJOR prayer request of mine.  Please, Lord, please let your answer be “yes” on this one!  I gave myself a pep talk, followed by a short prayer this morning to have a good day with Reece and to let God worry about the details.  As of 3:37 pm, I am giving myself a C+ in the “handing it over to God department” and that is some generous grading.  But I will have plenty of practice in this regard, because the risk for chronic GVHD and other complications will always be part of Reece’s life.

Prayer Requests:

  • Reece to be completely off oxygen
  • A smooth procedure tomorrow morning
  • No GVHD and symptoms to clear on their own
  • Protection from infection
  • For Reece to re-gain energy and strength
  • For hospital discharge in the very near future

Many thanks to all!

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