"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Monday, November 28, 2016

"She's here Mom, and she already knows."

Rowan and I had to miss my Mom's funeral back home in Ohio today, since Rowan is still in the intensive care unit at Seattle Children's Hospital in Washington. Brian, Zoe and Ian did make the trip from Texas to Ohio, and were able to be there with the rest of my family.  It was so hard not being there, but Brian and my sister Jennifer made sure to send me photos throughout the day, so I could feel like I was there.  It looked like a truly beautiful service, which is only fitting, since it honored such a beautiful life.  They are sending me video footage of the service, but for now...these photos meant the world to me today.

The service was held at Conroy Funeral Home. It rained for a bit, which by my recollection, it has done in Springfield for every single funeral I ever attended as a child or an adult.

Zoe, Olivia and Veronica, along with my sisters, compiled these breathtaking photo boards commemorating a life well lived.  Zoe free-handed the titles just beautifully.

The whole family was present in this picture...minus Rowan and I, and the 6 great grand children.

Here is the room, filling up, with family, friends, and coworkers, all there to pay their respects.

Everyone said that the pastor did a beautiful job.

Since we couldn't be there ourselves, Rowan and I wrote eulogies of our own.  They started out by us talking about my Mom with a creative writer from the hospital, last week...on the day my Mother died.  Rowan and I continued to reminisce about Mom/Grandma Debbie the rest of Thanksgiving weekend, and eventually wrote these individual pieces...which were read during her service today.

This is certainly one of the most difficult days of my life.  I wasn't just far from my family and lifelong friends, I missed my own mother's funeral...it's as hard to type as it was to comprehend.  Rowan and I were busy all day, with meds, therapies, pumps, alarms, etc.  And the staff here tried their best to comfort and console us, as well as distract us with laughter or song when they could.

But, the best part of the day, was when Rowan was enjoying a change of scenery again.  The nurses, PT/OT and I moved him to the couch by the window, so he could have some time out of his hospital bed.  He said he wanted to take a nap, so I told him, "If you dream of my Mom, tell her I love her and I'm sorry I'm not there today."

Rowan smiled and told me, "She's here Mom, and she already knows."  He woke up a little bit later and smiled and waved up towards the ceiling, saying that he saw my Mom and his friends in heaven.  Then he fell back asleep and slept peacefully for over an hour.

His peaceful grin is a pretty good picture of the peace I then felt on the inside myself after this conversation.

Thank you Rowan.

Thank you God.

Thank you to my entire family for putting together such a special viewing and service for our Mom, Grandma, Great Grandma.

Thank you to all her friends, coworkers, congregation members, etc. who came to honor her today.

Thank you Mom...for ever, for always, for everything!

Sunday, November 27, 2016

Day +40 (again)

Today is Day +40 post Rowan's second transplant.  His ANC (absolute neutrophil count) is still over 2000.  It has been 2000-3000 since he engrafted this time (on Day +20).  This is great news!  His first transplant failed and the ANC dropped to 0 (on Day +37), so we have been holding our breathe for quite some time now.  How his graft is doing, is actually the least of our current worries though.  

So, I have a few specific prayer requests ...

1.  Please pray for Rowan's kidneys.  They are not well at all.  He has now been on 24 hour CRRT daily dialysis for 6 straight weeks.  The only chance he has of getting out of ICU is for him to be able to switch to 4 hour a day HD dialysis.  He is, unfortunately, no where near doing so. 

2.  Please pray for his blood pressure.  His continued hypotension is one of the main reasons he is having difficulty having fluid pulled in a shorter amount of time on the dialysis circuit.  He has been on and off pressors (norepinephrine drip) many times in the past few weeks.  We need his blood pressure to rise, stabilize and maintain...without iv pressors.

3.  Please pray for his tummy.  He has gut GVHD in his colon, as well as some very distinct pin point pain in his stomach.  His gtube feeds had to be stopped again after just 2 days. 

4.  Please pray for the fungal infection in his lungs.  Fungal infections are very difficult to eradicate and can take weeks to months of treatment.  The drug he is on to treat it adversely affects your kidneys, so the sooner we get off of it, the better. 

5.  Please pray for the blood clot in his femoral artery.  They have chosen not to treat the clot right now, because of how complicated his health is.  They will monitor it periodically via ultrasound, and also watch for changes to his leg, lungs and heart.

6.  Please pray for Rowan's physical rehabilitation and strength.  His body has atrophied, losing any muscle tone he ever had.  He is also experiencing a lot of swelling/edema, making it hurt to move at all.  Some days his neck looks like an infant trying to hold its head up for the first time.  And he cries if we make him sit upright or move his limbs. Everything hurts him right now.

7.  Please pray for his emotional state.  Steroids can wreak havoc on a child's emotions (and they are), but when you add to that the fact that he is on his second back to back transplant, has been hospitalized for over 18 weeks, and 6 of those straight have been spent in the ICU, you can imagine the toll it is taking on not just his body, but his brain.  The tears flow freely and frequently.  The frustration and anxiety is real.  He is afraid to sleep at night, and says he feels trapped.  It is truly heartbreaking!  He doesn't want to be like this, and he cannot control it very well himself because of the medications he needs.

8.  Please pray for me.  It is extremely trying and tiring.  I am doing the best I can, but would appreciate a boost of energy and strength from above.

There are still good things happening, don't get me wrong.  We have not lost our faith or our fight.  We simply would appreciate some extra prayers right now.  I hope the specific requests above help you direct your thoughts and prayers.

Thank you all for your continued prayers and support.

Can't wait until we have another miracle to report...

And we will!

Thursday, November 24, 2016

Mom~ Part 3: "Funerals are for us, not for them..."

Finding out that my mom passed away, while I am not just living far from home, but now in the hospital with a critically ill child, even further from home, is almost more than a daughter can take.  I have a very close, loving family.  They all, and I do mean ALL, still live at home in Ohio.  I am the only one who moved away.  Today, the burden of guilt and distance was almost too much to bear.  But I had so much love and support holding me up, along with Rowan preaching words of wisdom that I just could not argue with.

The thought of leaving my son, in the midst of a 2nd transplant, battling multiple complications, in an ICU, in a hospital 2000+ miles from home, makes me feel like passing out.  But the idea of missing your own mother's funeral...equally nauseating.  I cried to my family back home in Ohio, but they all assured me that they understood, and told me that nobody expected me to leave Rowan to come home to Ohio.  I talked to Brian and the kids, and they likewise assured me..."we will go, its ok, we know you can't leave Rowan."  Still, I battled myself internally all day. 

But Rowan...

But Rowan gets things better than I do.  He is an old soul, in a frail little boy's body.  He knew what to say to me ALL DAY.  When I told him that I didn't know what to do, he held my face at told me, "Remember Mom, funerals are for us, not for them.  She's already in heaven...she won't be there.  It's ok if you aren't either."  He followed up by telling me, "She's in a better place.  She's with Jesus and all my friends.  I'll try to dream of her in heaven.  I won't even wait until bed time...I'll do it when I nap today."  He also reminded me, "We still have to look for the good Mommy.  Even now."  So we did...

Had Rowan not gotten so sick, had he not been moved down to ICU, intubated and on dialysis, I don't think my Mom would have felt such an urge to travel here so suddenly last month.  God may have mysteriously used Rowan's critical state, to urge my Mom to come.  Had he not...had she not, we wouldn't have gotten to hug her one more time, I wouldn't have the photos I do, she may not have had the peace she needed. And the nurse who had Rowan the days that my Mom was here, stopped by our room tonight.  She hugged me and she cried with me in disbelief.  Then she shared with me that while I was out in the waiting room with my sister and niece, and everyone was getting ready to say their goodbyes that weekend, she witnessed something.  She said it was just my Mom and Rowan and her in the room at the time.  Mind you, they came when Rowan was still in a pretty bad state.  He was intubated when they first arrived, then extubated the next day.  He barely opened his eyes, and did not interact or speak much at all.  But this nurse shared with me tonight, that Rowan turned towards my Mom and whispered "I love you".  It was the last words he ever spoke to her.  I would never have known that, had this nurse not witnessed it herself and shared it with me tonight.  So grateful to know this now.  See, on my Mom's Facebook page, the last post she made was this...less than 6 hours before she died. She reposted my latest blog about Rowan's hearing aid.  I know how much she loved Rowan, and he does too.  Thanks to the nurse, it also warms my heart to know that my Mom knows Rowan loved her too.

Brian said something today that really hit the nail on the head, as a way to describe just how spiritual and giving my Mom truly was.  He told me "I can't help thinking that your Mom probably went up there so she could tell God face to face that he could have HER, but he wasn't touching her grandson (Rowan:)  Then when my sister and I talked later, we also said that the whole time Mom was here in Seattle crying and praying for Rowan at his bedside, she was probably telling God: "Take me. Take me. Not Rowan."  We all agree, that's just who she was.  We all agree, she is up there with Him now, not just watching over Rowan, but pleading for his life, advocating for him...reminding God, "you're not done with him yet".  If Rowan needed another angel to look out for him from above, I guess I can let go of my Mom here on Earth.

I hope you understand me not coming home to Ohio for your funeral Mom. I hope Dad, Jen, Amy, Meghan and Brian are right, that you would want me to stay right here by Rowan's side...just as you stayed by mine so many times before. 

Wednesday, November 23, 2016

Mom~ Part 2: "God is still God!"

After looking at the last photos I took of my Mom, I went to my text history next. 

The last text my Mom sent me ended with "Praise God forever!" 

I will, Mom.

The one before that, she ended with "God is still God, don't forget that.  He will finish what he began." 

I believe you, Mom.

The one before that was this message...

Yes He is, Mom.

 I may not always have known how important each and every thing she said to me was at the time...but I am clinging to these final texted words tightly tonight, and I will NEVER, EVER forget them.  She was listening God.  I am listening Mom. 

Your faith was always inspiring Mom.  You and Dad, (and then later, you and Bill), have always modeled Christ-like faith and repeatedly bore your servant's hearts.  You have fed the poor, opened your home to foster babies, saved lives, come alongside the broken, brought people to Jesus, given the shirts off your back and the food out of your cupboards.  You didn't just give to all of your children and grandchildren, you gave to friends, and complete strangers, alike.  You taught us well.  I give today, because you gave all of my life.  I pray to God that my children have learned the same.  What a legacy to leave.

Tonight is one of the hardest night's of my life.  But I am repeating to myself, again and again... "God is still God!" and reminding myself to "Praise God forever!"  even now, when this hurts like hell...

Mom~ Part 1: "Just in case..."

This morning started out great.  Rowan had a good night's sleep after his trip to the OR last night.  We woke to one of his favorite nurses coming down from upstairs to say hi and bring him a Thanksgiving card from all the nurses on the transplant floor.  We were laughing and hugging and I was taking pictures of her and Rowan. All of the sudden I noticed that my phone had several missed calls, from family members in Ohio, and a text from my sister telling me : "I need you to call me".  I called her back and got the worst news of my life..."Mom is dead.  She fell at work.  She had a heart attack.  She's dead Carrie."

I fell to the floor... 
in total shock and disbelief...

There were 3 nurses in the room at the time.  One came to me, the other 2 to Rowan.  They held us, they consoled us, they prayed and they cried too.

She couldn't be gone.  She had just been here to visit Rowan in the hospital, 30 short days ago. She sat by his hospital bed for 2 straight days, crying, praying, talking to him in his ear.  I hugged her goodbye in the lobby on the last day and promised her we were doing everything we could for Rowan and she made me promise that I would "bring that boy home".  She assured me "God's not done with him yet." and I agreed.  I told her I loved her, and not to cry...but it was too late.  That is how most of our visits together ended over the last 20+ years, since I moved away from home...me hugging her as I left and telling her not to cry.  She never listened.  She always cried.  Today it's me that can't stop crying. 

After talking to each of my sisters, my dad, one of my nieces back home in Ohio and Brian, Ian and Zoe back home in Texas, I sat and cried most of the day, while Rowan slept.  I looked back at the last photos I had of her.  Here they are.  They are from her recent visit to Seattle to see Rowan.  When I looked at these photos, one thing in particular struck me.  It's hard to type.  I didn't verbalize it at the time, and I still barely can now...but it is the real, honest, truth...

I took these pictures, "just in case".  But you see, I took them just in case SHE never got to see HIM again.  Not the other way around.  It's sad to admit, but I believe it's very important to recognize now.  I remember that as I watched these precious moments: of my sweet Mom, finally getting to come lay eyes and hands on her beloved long-distance grandson, who had been so gravely ill, and was hospitalized even further away than usual, she was both heartbroken and peaceful at the same time.  She NEEDED these moments...I just didn't realize how badly.  I didn't know the true value these photos would hold.  They were meant to be a gift to her, if Rowan didn't make it through this.  Now, they are a gift to me, and I hope to him...because she's the one who didn't make it to our next visit.

You just never know.  Treat each day like your last.  Recognize important moments in your life.  Soak them in, and capture them on film if you can.  Because, life is just too short...and you just never know when a moment with a loved one may be your last.

You were such a beautiful soul, with such a kind, giving heart, Mom.  If someone could love too much, it was my Mom.  If someone could care too much, it was my Mom.  If someone could give, almost to a fault...it was my Mom.  She gave of herself more than anyone I have ever known...and while we teased her about it while she was alive...tonight, I hope I learned enough from her to give even half of much of my heart as she did.  And tonight, more than anything in the world...I wish I could tell her that.  I wish I could tell her how much I appreciated all her sacrifices, how much I admired her giving heart.  I wish I would have told her that...just in case she didn't know.

"I want to hear everybody again."

"I want to hear everybody again."

Rowan has had increasing anxiety about his hearing loss.  About a month ago he lost all of his hearing for nearly a week.  Slowly, he started to regain some of it in his right ear, and we have been able to at least communicate with him that way.  However, if a doctor or nurse comes in to talk to me, and it is on the left side of Rowan's bed, he immediately starts to cry and yell, "what? what is he saying?"  He also used to love to sleep with his eye masks on while here in the hospital.  It allowed him to tune out all the lights of the equipment in his room, and the nurses coming in and out at all hours of the night.  Since he lost part of his hearing though, he freaks out if you try to give him one of his masks.  He screams, "No! Then I can't see OR hear.  I have no senses!"  Part of this is of course delirium or agitation from being hospitalized for so long (4 months), confined to a bed for so long (6+ weeks), in ICU for so long (38 days).  But as you can imagine, if you were Rowan and you had not only always had your hearing, but also always been highly interested and involved in your medical care, this would really be a major deficit.  He feels scared and alone at times, unable to hear or communicate or know what is going on.  For this to have happened so suddenly, and in such a scary setting, you can certainly understand Rowan's reaction.

The audiologists did several types of hearing tests back then and let us know that the left ear had significant loss that was not expected to return.  Today, they came and did repeat testing, and it confirmed those results.  His right ear is impaired at the highest and lowest frequencies, but okay in between.  The left is still quite significantly impaired, at all levels.  Due to Rowan's level of anxiety, and the amount of time that he is likely to have to remain here in ICU and in the hospital altogether, they decided to mold him immediately for a hearing aid.  Thankfully the otolaryngologist and the audiologist felt the seriousness of his specific situation and both pushed to have this process expedited.  He was molded for the aid immediately after the testing today, and it should arrive sometime next week.  Rowan cried happy tears when he heard this.  He said, "I just feel so thankful.  I want to hear everybody again.  I want to sleep at night. I've been so scared."

Here are some pictures from the process as it transpired today.  The audiologist was amazing, and showed Rowan and I every single step. Very cool! 

The testing...

The molding...

And a little fun.
She asked Rowan and the physical therapist (who happened to be there at the tail end of the appointment, working out Rowan's extremities), "What emoji should we make with the left over putty?"  They both agreed...

And she obliged...

You will hear again Rowan.  No need to fear.  No need to feel alone.  God is healing you, and there are many people helping him facilitate that.  Thank you for giving them the heart, the motivation, and the means to do so.

Friday, November 18, 2016

Miracle #8: "0% 100% 0%"

After the hits we took yesterday, we were praying for some good news...and we got some.  It does not necessarily relate to the 3 complications we learned about yesterday, but it definitely is important.  I will keep this short and sweet, because we have a lot going on here today (art line, CT scan, ultrasound, care conference, etc.), but I didn't want to wait too long to share this news.

We received the results of the chimerism test last night.


There are no more of my cells running through Rowan's peripheral blood. 

There are no more of Rowan's cells running through his peripheral blood. 

The test shows that they are all Brian's cells. 

This is tremendous news.  When his last transplant failed, of the three types of cells tested Rowan had one that was 100% me, one that was 100% himself, and one that was missing or 0%.  That mixed chimerism led to graft failure.  This current chimerism indicates graft success.
(*There is still potential for the graft to fail, but they said that is unlikely, especially with such a robust engraftment this time.) 

It looks like Rowan now has 100% of Brian's healthy immune system as his own now. When Brian told Rowan this, Rowan said "and we shall conquer the world!"

We are calling this Miracle #8!

(to be continued...)

"Devastating news?" or "Happy accident?" ... Well, that depends on how you look at it.

I apologize that it took so long to update tonight after the episode Rowan had today in the ICU, but I am certain you all understand where my focus was.  Rowan was in a lot of pain, complaining of his back hurting all morning.  During occupational therapy and speech therapy, we just repositioned him a few times, thinking that was all that was wrong.  Shortly after those sessions, he wanted to take his nap, but could not get comfortable.  The nurse and I tried getting a look at his back, since that was his chief complaint.  When we touched it anywhere near his recent LP site, he went through the roof.  She tried and then I tried, and all of the sudden he said, "Mom, I can't see you!" and his next blood pressure read was 50s/30s (and he was already on a norepinephrine drip). We thought it was a fluke, but when we started cycling his cuff every 5 minutes, it became evident that something was wrong.  Thank God for a fast acting ICU staff, because Rowan was take off of the CRRT dialysis circuit and taken down emergently to CT, within the hour.  They did a CT scan of his abdomen and spine, and I think we all believed that they would find a leak, abscess or bleed of some sort that occurred as a result of the lumbar puncture he had done earlier this week.  Boy, were we wrong...

God works in mysterious ways.  I know that sounds almost cliché to some people.  But He truly does, and today was just a little more proof of that.  The CT scan did not show any reason for his back pain.  There was no evidence of a problem that may have occurred at his LP site.  There was no clinical evidence to explain what he was experiencing at that site at all. 

There were findings. 
Three specific ones in fact. 
Just not the ones any of us had on our radar. 

This evening, after much review, discussion and consulting, between the ICU, BMT, Infectious Disease, Nephrology, Hematology, and Radiology teams, we were given the following news...

1. Rowan has a blood clot in his right femoral artery.  (This is the site of his dialysis/Mahurker line that he just had pulled a few days ago, the one that was causing him so much pain.)

2. Rowan's lungs are hazy and full of multiple nodules, including one very large one in the left lower lobe. (It is unclear if this could be a sign of a bacterial infection or a fungal infection.)

3. Both of Rowan's kidneys show significant signs of renal cortical necrosis. (This most likely means that his kidneys will not recover, that he will remain on permanent dialysis, unless he becomes a candidate for kidney transplant, somewhere down the road, post bmt.)

Talk about a gut punch.  The wind was definitely knocked out of us all.  How did we go to CT expecting to find one answer for one specific symptom, but come back with not one, but three separate, three different complications...three!

There is so much to consider, swallow, grasp, and tackle.  It will take us a few days to completely understand where we stand with regards to all three issues.  The labs have been ramped up, the teams have grown, and as I type, the imaging and other tests are being ordered.  A lot remains unclear.  Rowan remains on IV pressors, in pain, with vitals that are still unstable. 

We have so many questions...but so do the doctors.

However, when I leaned in and whispered into Rowan's ear tonight, I told him: "You are the toughest kid I know.  I know this doesn't seem fair. But you got this! God is with you very step of the way.  I can't wait until there are no more surprises, no more complications, no more hurdles to jump.  Rowan...I am so sorry!" He of course, humbled me even further...he without hesitation, told me: "It's okay...I can get through it."

I know he can.  I believe he can.  I trust he can.  I have hope he can.

That does not make the news easy.  That has not kept the tears from falling. 

But, that helps us keep going.  It helps us put one foot in front of the other.

I am choosing to "look for the good" as Rowan has instructed me to do.  I am choosing to acknowledge the fact that, had Rowan not had this strange, sudden, severe, unexplained back pain today...we would have not discovered all three of these serious medical complications as quickly, and certainly never all at once. 

Thank you God for revealing the problems.

  Thank you in advance for providing the solutions.

We are believing that this is an example of your divine providence, defined as "timely preparation for future eventualities".

In the simplest of terms, we are choosing to see this as a "happy accident".

Tuesday, November 15, 2016

Miracle #7: "My liver is ok!"

Rowan has had some increasingly alarming lab results recently.  His liver labs in particular were worrying both ourselves and the doctors. They climbed higher and higher for several days in a row.  Some of them were higher than I had ever seen his.  One of the biggest concerns on everyone's radar was something called SOS (sinusoidal obstruction syndrome) or VOD (veno-occlusive disease) of the liver, which can occur after receiving extensive high-dose chemo.  It can be a very serious, and even life threatening complication of transplant.  Rowan's little body has been through so much already.  We were very concerned, and afraid he wouldn't be able to handle a battle against a complication as potentially dangerous as this. 

Well, this was just another opportunity for God to shine.  Last week Rowan had an in-depth ultrasound with doppler, to assess his kidneys, liver, bile ducts and hepatic arteries.  The ultrasound took over an hour to conduct and he had to be perfectly still while they measured the flow through the hepatic arteries specifically. 

Here are some of the excerpts from the final report:

"Normal abdominal Doppler... no findings to suggest sinusoidal obstruction"

Rowan did not have any evidence of VOD or SOS!  In the last few days his liver labs have begun to trend down now too. So, it appears, at least at this point, that his liver is okay.

We are calling this Miracle #7!

(to be continued...)

Saturday, November 12, 2016

Day +25 or Day +100, either way, he's still here

Today is Day +25 post Rowan's second transplant.

It is also Day +100 post his first transplant. That is the target date for when you typically get discharged to go all the back to your home.  The date that you no longer have to be in the hospital or less than 30 minutes from the hospital.

Instead of heading back to Texas today, Rowan headed down to surgery again.  Instead of packing up the car to leave Washington, I sat and waited for four hours for him to get back to his PICU room.  Instead of ceasing treatment, Rowan had a permanent line placed so he could continue ongoing dialysis treatment.  Instead of packing away his beads of courage to take home, he earned a dozen more beads to add to them, today alone. 

So, it was kind of a hard day...

I cried a little when I sat down to journal today.  I had pre-dated the entire journal, up through day +100, when we started the first transplant.  I added in the new daily count once we started conditioning for transplant number two, but I left the old daily count there as well.  For some reason, I still wanted to know.  But seeing today's two numbers: "Day +25" and "Day +100", on the same page, hit me hard.  That is a big milestone.  It is actually THE biggest goal you have during transplant.  Hitting Day +100...it's HUGE!

The longer Rowan was down in surgery, the more I thought about the what ifs. What if transplant number one had been successful? What if Rowan had not had all of these complications?  What if we really were headed back home to Texas this weekend?  My mind was spinning. 

All of the sudden, I heard a little voice inside my head...it was Rowan's.  It was saying, "What if I wasn't down in surgery?", "What if I hadn't made it through some of these complications?", "What if I hadn't made it to transplant number two?"  Rowan wasn't in the room with me.  He was in surgery having the temporary dialysis line pulled from his groin, having angioplasty to open up a vein in his chest, having a new more permanent dialysis line placed through his jugular into his vena cava, and having a repeat lumbar puncture done to check the levels of his CMV encephalitis.  But still, I could hear his sweet little voice, reeling me back in, reminding me of what's truly important. 

No, Rowan wasn't actually saying those things to me, but I do believe, that had he not been under anesthesia, had he heard what I was thinking...he would have said something just exactly like that.  He would have made me think of the positives, rather than the negatives.  He would have looked for the good, and found it.  So, I turned my thoughts around.  I tried to think how Rowan thinks.  And it helped.  It actually helped a lot.

So, Day +25 or Day +100...either way...he's still here with us...he's still fighting...and God is still using him to teach us valuable life lessons. 

I will continue to count both days, because they were both part of God's plan, but I will first and foremost appreciate that there is a today at all... no matter what it's number may be.