Surprise visit from a friend...48 hours that will help him for 48 days or more!

This past Tuesday, just after the doctors rounded, the nurse told me that Rowan had some surprise visitors from Texas waiting to see him.  We were not expecting anyone else, so at first I had no clue who it may be.  As I walked up to the front though, I suddenly thought to myself..."No. They wouldn't have.  Would they?"  See Rowan and one of his Kidd's Kids friends, Christa, have a long history of surprising each other.  Rowan has jumped out of a box on her front porch on Valentine's Day.  She came to surprise him for his baptism, etc.  Sure enough, as I rounded the corner there they were.  Christa and her Mom!  They had flown over 2000 miles to surprise us.  I was blown away.  I told them, "Ok, ok, you win.  We will never be able to 'out-surprise' you after this."

It was a quick two day stay, but a very important one for these two kiddos...

and us two mommies...

  Christa is 3 years post-transplant herself.  She has been through much of this herself.  She is a great source of comfort for Rowan.  In the short 48 hours they just spent together, she was able to hold his hand during wound care, send him off to the OR, play video games, console him as he cried from pain, play board games, watch movies, walk a lap in the hall, listen to music together, color and so much more.  The bond they share is beautiful.  Those 48 hours will help him for 48 days or even more.

Thank you from the bottom of our hearts, to Christa and Gina for making this trip a priority, to Johnny and Gene for letting them come see us, and to everyone who helped make this trip possible with airline miles and hotel points.  We love you dearly, and your visit filled our souls!  Safe travels home today.  See you soon.

"Finding Bigfoot...Finding Rowan!"

I thought maybe we could all use a happy story today, so I wanted to share something amazing that happened this past week.  A Facebook friend whom we "met" because her little boy also battles many similar health issues, and also started coming here to Seattle to see the same SDS specialists that Rowan did, decided Rowan needed something to smile about.  She knew that one of his passions was Bigfoot.  Her own son is also a huge fan.  They want to go Squatchin' together someday when they are both healthy enough to finally travel and meet each other.  Well, she decided to reach out to the hosts of the Animal Planet show, "Finding Bigfoot".  She wasn't sure anything would come of it, but just felt like she had to try.  So, she sent them an email about Rowan.  What happened next was unbelievable.

Within ten minutes, one of the hosts, Ranae, messaged back and told her that she would love to come visit Rowan and bring him some Finding Bigfoot gear/swag. 

Then, within the hour, a second member of the show, Bobo, also messaged back!  He said that he would love to reach out and call Rowan here in the hospital. 

They both asked her to have me email me them our contact information.  Before I even had the chance to do so the next morning, the phone in Rowan's hospital room rang.  I picked it up and it was the hospital operator telling me: "Someone is trying to reach your family.  they say they are from the show Finding Bigfoot?"  I freaked out! I told her "Yes, you can put him through."  Then I told Rowan what was going on.  In the meantime, a nurse assistant had just entered the room to check Rowan's blood pressure.  She looked very concerned all of the sudden and told me that Rowan's BP was 165/110.  I told her to wait a minute and let him calm down, that I thought I knew why it was so high.

Moments later, the phone rang again.  I picked it up and heard a very familiar voice (from TV).  It said: "Hi.  This is Bobo, from Finding Bigfoot.  Is Rowan there?"  I was shaking myself, but Rowan...Rowan freaked out! He was shaking, his voice was quivering, he had tears in his eyes, etc.  But he took the phone from my hand, took a deep breath and said "Hello?" 

Bobo and Rowan proceeded to have like a ten minute conversation.  They talked about Rowan's favorite places to go Squatchin' in Washington.  Bobo told him there were actually good spots in Texas too.  Rowan told Bobo that he and Ranae were his favorites on the show, etc.  It was so awesome.  You all know how happy and positive Rowan is, but this was different.  I hadn't seen true joy and amazement on his face like that in a very long time.  After more than 60 days in the hospital, Rowan started dreaming about getting out again.  After he hung up, he said: "I can't believe that just happened. I was stuttering the whole time.  He said that him and Ranae are going to try to come see me here...in the hospital!"

Listen to his voice...sooooooo excited!

Rowan beamed about this, the rest of the day.  He told every nurse, doctor and assistant who came in the room..."So, Bobo called me today."  Then later, just before bed, Rowan told me: "I hope they really do come see me.  And who knows, maybe someday I can go walking around looking for evidence with them, or show them my favorite spots...but not with cameras and the whole show or anything...just me and them, walking in the woods...like friends."  With that, he drifted off to sleep with the biggest smile ever on his face.

Thank you Tanya for your heart to help put a smile on Rowan's face.  Thank you Ranae for responding to Tanya's request so quickly.  Thank you Bobo for calling the hospital directly and tracking Rowan down.  Even if you two don't make it up here to see him, that phone call will be one of the highlights of his life.  And if you do...we will be sure they don't check his blood pressure while you are here...because this sick little boy will probably be bouncing around the room (or at least the bed), talking about Bigfoot with his favorite cast members, from one of his all-time favorite shows. (He even has the same hat that Bobo wears:)

(Side note: This is how big of a Bigfoot fan Rowan is.  here is a picture of his phone case, personalized by a friend.  And he mentioned months ago that he wants to have a post-transplant party (after Day +100 of a successful transplant) across Puget Sound, and that he hopes Bigfoot comes out "with a party hat and a kazoo, leading the conga line.")

Today the numbers changed...

As many of you have now heard, we were told this past week that Rowan's transplant failed.  He rejected my cells.  He has zero immune system, and needs to have another transplant as soon as possible.

To say that my heart nearly stopped in that meeting is an understatement.  I was mad, sad, scared, you name it.  This little boy has fought hard his entire life.  He has so much to offer this world.  This isn't fair.  Not like this.  God isn't done with him yet.  Those are the thoughts that raced through my head.

After I took a shower (mostly just so I could go cry in the bathroom, without Rowan seeing me), I tried to pull myself together and asked Rowan if he was ready to read his devotional.  The title of course made him smile...it was a sign from his angel friend Jalene..."Shake it off!"

It was a poignant reading too.  We do not understand why this is happening.  We wish with all our hearts that it wasn't.  But we trust God.  We know he has a plan for Rowan.  So while our nerves are shot, our hearts racing, we have to just keep putting one foot in front of the other.  We will spend every minute of every day loving on our boy, and helping him fight for his life.  The first one didn't take.  We will shake that off.  We will Rally for Rowan.  We will try again.

Today was Day +50 post-transplant.  We have been in the hospital for 63 days so far.  But today the new plan was given to us.  Today the numbers changed.  We are no longer counting up.  We are now counting down.  Counting down to the second transplant date, October 14th.  That makes today, Day -21. 

Not Day +50...

but Day -21.

Today the numbers changed...but not for God.  He already knew this part.  He already wrote these numbers down.

I woke up at 2 am last night, and immediately fell to my knees, next to Rowan's hospital bed.  Brian had asked me to look up a Bible verse earlier that evening, one the Uber driver had given him on his way from the airport to the hospital.  Psalm 37:5.  I sat on the floor next to Rowan's bed, crying, reading and rereading that verse.  Until I finally decided to go erase the cutesie saying I had written on his sliding glass doors on his first transplant day, nearly 2 months ago...("I asked my Mom to marrow me, she said yes!")

That ship had sailed.  It was time to move forward.  Time to write something new on the glass.

It was time to commit this whole thing to God.

Time to trust in him...

and pray that he WILL do this!

We love you Rowan.  We will be here fighting with you every step of the way, and we trust that God WILL do this.  Your story is not over yet, sweet boy.

Day +42: A sea of support...

It is obviously difficult being away from home...away from family, friends, familiar nurses/doctors and surroundings, etc.  However, Seattle has welcomed us with open arms, at the same time that Texas has continued to support us from afar.  Yesterday especially, there was so much evidence of that.

It was a difficult day.  He had to go down to have his line removed because he has 3 different bacteria growing in his blood.  While he was under they put in 3 separate peripheral ivs in.  Once he got out of recovery, one of them had already blown.  A few hours later a second iv failed, so he had to have yet another one placed, awake this time.  He also continues to have an anc of zero.  That means no immune system.  His CMV virus is also active.  He is on 3 iv antibiotics, an iv anti-fungal, an anti-viral, and steroids, plus tacrolimus, and multiple iv medications and fluids.  Many of these drugs are harsh on the veins and some on his organs.  His puffiness also increased and he was up more than 2 pounds overnight.

There were several things that blew me away yesterday in a positive way too though. 

First, his night nurse, left me this encouraging note on Rowan's morning labs. 

When I came back up to the room after speaking to the surgeon, who told me that they were indeed able to successfully pull his line and place the 3 peripherals, the nurse let me know that someone had delivered me Chic-fil-a and that she had put it in my fridge.

Less than an hour later, the Chief Nursing Officer for Seattle Children's, came by to personally deliver me a fresh lunch that she had ordered for me.  She had come to check on me the day before as well.

The reason that the Chief Nursing Officer even knew about Rowan and I was that the Chief Executive Officer of Methodist Children's Hospital (back home), had phoned ahead many weeks ago to ensure that we were well cared for here.  Who does that? What hospital makes personal calls and emails to make certain that their patients have the best possible transition to a new facility, over 2000 miles away.  Well obviously, Methodist Children's Hospital in San Antonio and Seattle Children's Hospital do.

Next, I received a personal email from the first specialist that we started seeing here in Seattle 2 years ago.  She was in town for a conference and reached out to try to come visit Rowan and I in our room, all the way from Boston.  Unfortunately, Rowan was taken down to surgery early so it didn't work out today, but just knowing that she still thought of us, and still cared...blew me away.

Then I got a package from Brian that cheered me up.  He knows how much I love Hatch Chile Fest at Central Market every year, and all the yummy Hatch Chile Pepper products in all the stores.  So, he sent me some Hatch Green Chile pita chips, Hatch Queso, etc.  Such a thoughtful gesture.

And look at this second amazing poster one of the cnas drew for Rowan, and had some of the nurses write notes to Rowan.  It is precious! And so perfect for Rowan.

Finally, and this is where it gets weird (and I need some of your help)...The first cna that I saw once I was back on the floor after Rowan's surgery, was wearing one of his light blue, "Rally for Rowan" t-shirts.  She said "Thank you so much, I love these!" 

I looked at her bewildered.  I was stunned.  The light blue version of her shirt had not been sold for quite a while.  How did she suddenly get one?  Did she know about Rowan before he got here?  And then (and I'm not even kidding you), I seriously thought to myself: "Did she go make Rowan's bed up while he was down in surgery and just took one of my Rally for Rowan shirts?"  It was so bizarre! Then, as I walked down the hall...nurse after nurse, and all the cnas, had on Rally for Rowan shirts. 

My mind was blown.  I cried.  Then I went to our room and cried some more.  Our nurse for the day said "yes, I believe it was your sister's friend that dropped them off for us.  I put them all in the break room, and everyone is grabbing them."  I knew that didn't sound right, so I asked, "Do you think maybe they said it was a sister of a friend of mine?"  That theory hasn't panned out yet either though.  Everyone is baffled!  I cannot for the life of me think of who in the world was nicest enough, kind enough, generous enough to buy these shirts and donate them to the people who are caring so closely for Rowan right now. And the funny thing is, he has been on 1 floor, in 1 room the whole time, but nurses and therapists were getting word of the shirts and coming from the floor below us to come grab a shirt as well.  So I must ask you all: "Who did this amazing thing?"  Who brought me Chick-fil-a today?  Who donated dozens of shirts in order for my son to feel surrounded by familiar love while he fights this tremendous battle?  Please let me thank you!  Please reveal yourself, and let me know how you came to follow Rowan.

Even more important, is the quote on the back of this particular shirt.  It is another popular Rowan-ism, but it is so poignant as well.  "If you can't see the good, make the good!' 

The recipients of today's blessings were not just Rowan and I for witnessing this amazing gesture of love and support, but also the people who received it themselves.  They were thrilled. They were thankful. They were supportive.  One by one they passed his room and flashed their shirt, or even in groups of 5 or 6.  And they all LOVED the quote.  As the last group left the edge of Rowan's room, they mentioned the quote, and then one or two asked Rowan himself if they had permission to borrow his quote.  He and I of course said yes!  What I find ironic...or providential, is that the hematology/oncology/transplant nurses are the ones that somebody blessed with this huge stack of shirts.  They are such special individuals, doing a very difficult job.  They witness a lot of sickness, and a lot of sadness, every single day they come to work.  They don't always see the good, but you can sure bet they help make the good!  Thank you!