It Is What It Is

Reece received a boatload of platelets last Tuesday and wasn’t in clinic until Friday.  The doctor thought perhaps he was beginning to make some of his own platelets.  On Friday morning, I passed by Reece sleeping in his bed and noticed that he had blood all over his face and pillow.  He had a nose bleed like I have never seen before (in fact, his first since this whole process began).  When we arrived at clinic, we found out that his platelets were even lower than normal.  So–no–he is not making his own platelets yet.  We continue to strive for the impossible, which is not spending our entire week in clinic.  It’s hard to describe why this is the case other than a platelet transfusion alone takes normally 3-4 hours, start to finish.  Since he needs so many, he gets at least three transfusions a week.  If he needs red blood cells, that adds two more hours.  Add on any other appointments or clinic needs and 3/4 of the day gone.  We are trying to only be there Mon/Tues/Fri, but even this week we are going back today to meet with Cardiology as a follow-up to a heart abnormality that he had during his hospital stay.  I’m not sure why this couldn’t have happened while we were still in the hospital, but it is what it is at this point.  So, we are trekking back over the U of MN this afternoon to get his heart checked out.  I am hoping it all looks good.  His heart, as compared to all other major organs in his body, has been the least concerning.

As far as Reece is concerned, he is still about the same as he was last week.  I got to Monday afternoon and started to get so frustrated with the long weekend of constant warm blankets and lying around and had a bit of a mental breakdown.  So we have some new strategies to try to get Reece off of his warm blanket addiction.  We are using “blanket dollars” that were created by the Child Life crew at the U of MN so that he only has so many warm blankets he can use in a day.  While that is a decent strategy, I finally told Reece that we are going to use regular blankets other than at night and he can use his warm pack (microwavable) underneath his blanket during the day if he is still chilly.   Because he is using these blankets all day, I am sure that room temperature air does seem cold.  Additionally, the doctor is having a tough time discerning if all of his redness is from his GVHD or if it is partially due to the constant heat on his skin.  Truthfully, when he gets up to do anything, he is almost sweaty underneath all the blankets, so it is likely making his skin appear even more red than it really is.  Apparently, it is somewhat normal for kids to adopt a comfort measure from the hospital and take it home with them.  There is a girl in clinic about Reece’s age who carries around a bag full of ice, since she was used to eating ice chips in the hospital.  Unfortunately, Reece’s comfort measure prevents him from getting up and moving around, so it needs to be managed and ultimately removed.  And I thought getting rid of thumb-sucking would be my challenge with Reece! 

The gloves finally came off on Monday night and I decided to check out prognosis numbers.  All I can say about it is that I was ready for it.  Every time I woke up to nurse the baby, I thought about the numbers.  And then on Tuesday, I stopped thinking about them.  I’m glad that I didn’t learn about them when we first found out his diagnosis.  But learning about them at this point in the process made sense to me.  I am no longer naive and we have experienced enough.  It felt weird to not know that part.  It is what it is.

Sleep Deprivation

I am doing solo baby duty at night and I am better rested than Reece and Terry.  They are going on six days of sleep deprivation.  Reece goes to the bathroom every 30 minutes at night and then several times in a row.  Additionally, he is constantly cold, so he is asking for warm blankets around the clock.  He has a normal temp, his skin feels warm, but he is cold.  No one can figure out why this is the case.  However, due to the cold and the extreme exhaustion he is not motivated to get out of bed at all throughout the day.  Then picture all of this with the “Scooby Doo” and “The Smurfs” theme songs running in the background.  Transplant.  Recovery.  Hell. 

Since Reece has been bumped back up to the highest level of steroids, his insulin needs are very high again.  He was spilling glucose into his urine which could explain the frequent bathrooming.  Endocrinology increased his insulin again, so hopefully that will help.  Because he takes steroids twice a day, I believe that is keeping him awake at night as well (he followed that pattern in the hospital).  The always-being-cold phenomenon is baffling.  It could be from his sensitive skin, although I doubt it.  They checked his thyroid which is normal…wow…score! on getting a test result back as “normal”!  My guess is that both are more learned behaviors more than anything.  I think the frequent bathrooming is more of a paranoia and the coldness is a desire to have more warm blankets (a replacement for the thumb-sucking that went out the window due to all of the hand-sanitizing we were doing).  Still, we have to get beyond these patterns to somehow normalize for everyone’s health. 

I once worked for a guy who coached me to always commit to a deadline with more time than needed, so I would set myself up to be finishing my work ahead of schedule–he wanted me to manage the expectations of my bosses in such a way that always set me up to look good.  I realized today that a big part of my mental problem is that I keep setting up expectations for things based on what the average kid in BMT does.  Clearly, Reece hasn’t had an average BMT experience. Therefore, things will most likely always take longer than what we have been told.  Thus, I am always set up to feel disappointed when things take longer than they should.  There was a distinct moment in the hospital when I released all expectations of leaving any time soon and it freed up my mind to focus on other things other than leaving the hospital.  When Reece was in the PICU (around Day +45), I asked the doctor if we would even be out of the hospital at Day +100.  He said we would likely be out before Day +100, but not sooner than Day +75.  The average pediatric BMT patient is discharged around Day +35.  We were initially discharged at Day +91.  But this doctor managed my expectations in such a way that I was no longer clinging to leaving any time soon.

I shared in my last post about a mom that always seems to have her act together up in the hospital.  She has a calm demeanor and a cheerful disposition.  Yet this is the mother that only two years ago lost her older soon to the same horrific disease that her younger son is bravely battling.  I mean, doesn’t she have the right more than most people to feel bitter, worried, and angry?  She knows the worst outcome that her son’s struggle could have.  Yet at the same time, her expectations have been managed.  She knows the full spectrum of possibilities.  I suspect there is a part of that mom that understands the loss of one child and instead of focusing on all the things they are missing out on by being in the hospital, she is determined to keep plugging away with her other son in hopes of a better outcome. 

I hope I am wrong with this next statement, but I believe that Reece has quite a battle ahead of him with his skin.  I think his story will not be about being miraculously saved and spared from things, but rather about being spared from little and enduring much.  His will be a story about perseverance.  I keep praying for things to just go away, but they seem to keep on persisting.  I don’t like making predictions, but I have a strong feeling about this, much like I did around the time of his diagnosis or even last summer when I knew there was something headed our way, prior to anything ever happening with Reece.  I really hope I am wrong on this one. 

In light of that, I need to figure out this problem of things failing to meet my expectations.  I have had to give myself so many pep talks and recalibrate my expectations so many times.  I decided yesterday that I need to drop any expectations (as best I can) about this next year.  It is so hard to just let go of things we were planning on doing.  While I will register Reece for preschool in the fall, I decided to purchase homeschooling materials to help out in the interim.  I am putting together a physical therapy plan for us to use at home when we are not in PT in the clinic.  I am putting some things on the calendar for myself–social goals, if you will–so that I have some things to look forward to doing outside of our home.  And that megatheme of hope is keeping me on the straight and narrow.  And the harsh-but-true reality is as long as it is another day we can spend with Reece, it is a good day.  We’re not losing him today.  Now, if we could only get some sleep around here…

Reece’s Skin

A quick update.  Basically no news means it is too crazy around here to post.  It’s been a crazy week…some good things and some challenging things.  I will try to post more tonight.  We had a good weekend for Mother’s Day.  Britta was with us, so we were a family of five for one blessed night.  Then, Britta slept in until 10 am and we realized that she was under the weather.  It turns out that she has strep throat.  She is with my parents again this week, but I feel terrible that she is sick and I am also hoping that no one else–including Reece and the new baby–was exposed. 

Clinic is completely chaotic and I feel like we live there.  There have only been a couple of days where we haven’t been there for hours and hours.  Reece’s situation is so complex and to see some of the other kids in clinic that were hospitalized the same time as Reece–skipping and walking normally–just reinforces his weakened condition.  Again, I’ll go into more detail later.  But yesterday the doctor came in and started discussing his concern for his skin–that perhaps we need to start thinking about chronic GVHD.  This felt devastating to me.  She consulted with another doctor and because the rash isn’t clearing up, she sent us to dermatology for another skin biopsy to confirm that he still has active GVHD.  He is demonstrating more signs of acute GVHD, versus chronic GVHD, so right now they are putting him back at the TOP of his steroid taper and giving it another go.  What a disappointment.  She basically said she, “didn’t know what to make of his skin.”  Ugh.  Additionally, he is always cold.  I mean freezing cold.  Our upstairs level of our home is in the mid-70’s.  When he is up there he usually has anywhere from three to six heavy blankets on him and we are constantly warming them up in the dryer.  The doctor also doesn’t know what  to make of this, but the dermatology group said it is likely from the raw condition of his skin. 

In short, they are treating his skin rash still as acute GVHD, but if it doesn’t respond well to the additional steroids, I am sure they will classify it as chronic.  Chronic GVHD is “very rare” in kids, but of course, that seems to be Reece’s forte in regard to transplant.  Chronic GVHD is difficult to treat…it can last months, years, and possibly a lifetime. 

He could use your prayers for his skin to respond to the steroids.  That the rash be completely and permanently removed.  That no other flares or other types of GVHD occur.  That has insulin needs go away and his life can get back to being normal.  That he starts making his own platelets soon to alleviate the need to be in clinic so often and to continue to heal and protect his lungs. 

Will this ever get better?

Good news–no monosomy 7!  So right now, he is completely free of MDS.  Praise!

More later…

Lotsa Good Stuff

Reece was discharged again yesterday!  Unlike our first time getting out of the hospital, this time we basically slipped out the back door.  We wheeled two of our three kids out of the hospital and drove home like it was any other day.  Strange.  But true.  Coming home wasn’t nerve-wracking.  We know the home routine with Reece, so it was more execution of the plan versus getting comfortable with a new system.

Last night was the first night we slept in our home with just our immediate family, minus Britta.  We decided to get our system down with our less-energetic children before adding her back into the mix.  It felt great to be home with Reece again.  Both Terry and I are fairly sleep-deprived, but we have been for months, so it feels somewhat normal.  Both children are up at all hours of the night, but thankfully it is only for brief periods right now. 

Over the last couple of days, we have received several pieces of good news:

1. Reece and his new baby sister are donor matches!!!  I could not stop smiling when our doctor shared the news.  There is only a 25% chance that a sibling is a match, so we feel very blessed that this is the case.
2. Reece’s engraftment study results came back and he is 100% donor!!!  In the blood, the two cords are still split nearly 50/50, but in the marrow, the split is 98/2.  And yes, Reece’s blood type will actually change, since the cord that won out is a different type than Reece’s original type.  Again, strange.  But true.
3. Reece made his own hemoglobin overnight!  While he has been making white blood cells for quite some time, it takes longer to start making hemoglobin and even longer to make platelets. 

Speaking of platelets, that is the key to keeping Reece’s lungs healthy, so until he begins making his own platelets, he will be in the clinic likely every day getting transfusions.  Right now they are keeping Reece’s platelet level about five times higher than the average BMT kid.

I know anything can happen, but I told Terry tonight that this is the first time I have actually believed our life will get back to normal.  I have been convincing myself for the last five months that it will, but I am almost able to see it.  And just tonight I realized that I am at a place of acceptance with whatever happens.  That’s a good place to be.

Praise God from whom all blessings flow!

Job

The day turned out to be better than I had expected.  The doctors decided to replace Reece’s Hickman line (placed on the chest; where all his lab draws and IV meds are given) with a PICC line.  A PICC line, like a Hickman line, goes into the heart, but it is placed in the arm, versus the chest.  PICC lines are not typically used with BMT patients as they are not intended to be as long-lasting as Hickman lines and they are not used for administering chemotherapy.  Often times, however, if the kids are post-chemo and they tug the Hickman line out, they will use a PICC line as a replacement. 

Additionally, Reece did have his bone marrow biopsy today.  Had the line not tugged out, the biopsy would have been postponed, so I am glad that it all worked out the way it did.  The biopsy results will take probably two weeks to get back, but it will tell us about the success of transplant thus far (i.e. if Reece is still in remission).  It’s a bit nerve-wracking, but since we didn’t do the Day +60 biopsy due to his lungs, I have been antsy to have this one done.  The blood has revealed 100% donor, but the marrow is where the real answers lie. 

Reece’s breathing looks really good.  The doctors want him to preventatively stay on bi-pap for one more night.  Assuming his numbers continue to look as good as they have the past couple of days, they will take him off of bi-pap and see how he stats.  They want to give him 24 hours off of oxygen to see how he does.  From there, they will make a plan so that when he is sent home, we are all comfortable with the oxygen plan and equipment we will be using.  The hope is that he will be home again this week.  Please pray that he can be done with oxygen.  That when he comes off of bi-pap he is strong enough to breathe on his own both awake and asleep. 

These last few days have left me weepy.  Between the postpartum hormones and Reece’s latest hospital stay, I have felt very low.  The hardest reality for me is the dichotomy of having this blissful experience of adding a new baby to our family contrasted with the depressed feelings of knowing the suffering of my other child.  The joy contrasted with the sadness reopens the wound and sharpens the senses that have been somewhat dulled over the past several months.  In essence, I have felt robbed of a time of life that we should be fully enjoying; we should be given a carefree time when our children are young.  And our children, most definitely, should not be dealing with suffering and struggles.  And then I have realized that it is so easy to fall back into this feeling of entitlement; that we should be given these things, but we are not.  In fact, many people are not given this carefree feeling that I was expecting would be ours.  It becomes very confusing…I want to be mad about my perceived loss and I do feel like something has been taken from us and yet I know in my heart that it isn’t the right mentality.  That is, it feels wrong to me to assume that everything should be so carefree…carefree was never promised to anyone.

 So, in light of that, I decided to get caught up on some devotional reading last night.  The devotional I have been reading from is entitled Streams in the Desert.  I had several people give me copies prior to Reece’s hospitalization and I would highly recommend it if you are walking through something that is particularly difficult.  Job’s suffering has been an ongoing reference to me these many months and as I was reading through several days of devotions, one excerpt struck me in such a way that I found it encouraging.  Interestingly, it is from April 22, which is my birthday.  This next passage is a direct quote from my devotional:

The pain would be removed from many an agonizing trial if only I could see what Job saw during his time of severe affliction, when all earthly hope lay dashed at his feet.  He saw nothing but the hand of God–God’s hand behind the swords of the Sabeans who attacked his servants and cattle, and behind the devastating lightning; God’s hand giving wings to the mighty desert winds, which swept away his children; and God’s hand in the dreadful silence of his shattered home.

Thus, seeing God in everything, Job could say, ‘The LORD gave and the LORD has taken away; may the name of the LORD be praised,’ (Job 1:21).  Yet his faith reached its zenith when this once-powerful prince of the desert ‘sat among the ashes’ (Job 2:8) and still could say, ‘Though he slay me, yet will I hope in him’ (Job 13:15).  –J.R. MacDuff

The Lord gave us this new baby and the Lord created our eldest child knowing that his health would be taken from him at this tender age.  Until this time in my life, I have never sat among the ashes.  However grim it feels, I know the Lord is good and I continue to hope in Him.

Ups and Downs

I have been feeling pretty down over the last few days with Reece in the hospital.  Yesterday, I discussed with the docs my concerns about Reece’s breathing, skin, and mental and physical health.  They were quite positive about his breathing and skin and supportive of my ideas regarding Reece’s holistic health.  They kept him on bi-pap yesterday as a preventative measure…he is not requiring it for breathing.  His counts look good and do not reflect any further bleeding.  In retrospect, they believe he started bleeding sometime last week.  They were hinting at Reece only needing to be here a few more days. 

Initially, the plan was that Reece was going to have his Day +100 bone marrow biopsy today.  (We hit Day +100 last week!)  However, due to Reece’s breathing issues, they were going to postpone it for a few days.  HOWEVER, early this morning, Reece’s central line was accidentally yanked out, requiring it to be replaced sometime today under sedation.  It is actually surprising that Reece has been here this long and it hasn’t already happened.  

So, I have no idea how this will all go today.  I am hoping there is no need for intubation, although I am nervous about that.  I am not sure how his lungs will handle the sedation.  I am not sure if they will do the bone marrow biopsy since they are going to be sedating him anyway.  I hope they do, as it would require one less procedure under sedation.

The part about the line that is tough for Reece is that when the line is initially placed, it is very sensitive when they clean it every couple of days.  It had healed over in the months we were at the hospital, so changing the dressing wasn’t difficult.  Now, with a fresh line placed and his skin overly sensitive from the steroids, it will be painful for him. 

Reece is the toughest kid I know. 

Prayer  Requests:

• Reece and his lungs to handle sedation well; no setback in breathing issues
• Continued improvement in all things BMT
• Remission
• Life
• Discharge
• Improvement in mental and physical health

I’ll keep you posted.  Thanks, all.

Who Wants Twins Tickets? #joemauer fan club

We have had a number of great people and organizations donate money, gift cards, bags, and now 2 tickets to see the Minnesota Twins play the Detroit Tigers at Target Field on May 27.  A co-worker of mine, Marty Hinrichs, is President of the Joe Mauer Fan Club and has donated two tickets to be awarded randomly from all donors to my Be The One Run fundraising campaign.  The Minneapolis Be The One Run is on May 19 and I will be selecting the winner of the tickets immediately after the race (pulling a name out of a hat, literally).

Thank-you, Marty, for this generous donation.  And thank-you to everyone who has provided support to my family these last several months.  It means more than we can ever thank.

Terry

Hospital Update

Here’s the latest–the short version.  After much discussion yesterday between the doctors, the pulmonologist looked at Reece’s CT scan and felt he had another mild bleeding episode.  They have pumped his platelets back up and are keeping him, as a precaution, on bi-pap for at least the weekend.  He was breathing okay on high flow oxygen overnight and today, but they feel that things could turn if they are not very careful.  His hemoglobin took a dip overnight, so they gave him red blood cells and will be monitoring his hemoglobin every few hours to see if it drops dramatically–it would indicate an active bleed. 

I am sure Reece will be in the hospital again for a week or two at a minimum.  We are praying that his lungs heal and that no further bleeding occurs.  He is a trooper and handling it better than I am.  I have hit a new low in this whole process.  It’s too hard to write about it at this time. 

Prayer Requests:

• NO further bleeding; healing for Reece’s lungs
• Remission and life for Reece; protection from infection and other complications
• GVHD to stop flaring and be gone for good
• Improved mood and mental health for Reece
• Progress in getting his mobility back
• Ability to cope and manage life for the entire family

More later.  Many thanks.

Another Urgent Prayer Request

Among lots of fun and exciting news that I had envisioned posting as my next blog post, the mood has changed around our home.  Reece was re-admitted to the hospital early this morning with breathing complications and I am waiting to hear how things are going.  It sounds like he will be going back on high flow oxygen and I am praying that it will do what it needs to keep him from having to do anything more drastic.  We are not sure how this all transpired.  He had a very positive first week and a half back at home.  Two days ago he was weight up, since he has getting some IV fluid replacement at home.  His weight came back down yesterday as noted in clinic, but apparently his lungs can’t handle whatever is happening.  I am praying it isn’t another hemorrhage.  They are doing a CT scan at 9 am to rule it out, but I am really worried.  Pray as you feel led.

Many thanks.