"Our Little Trooper"

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

Monday, May 30, 2016

Chef Rowan's Cooking Demo at Culinaria...Takoyaki...Yum Yum Fun!

Rowan had the distinct honor and pleasure of being asked to be a celebrity chef at the 2016 Culinaria Event at La Cantera Resort last weekend.  He partnered up with Jeff Bridges from Copa Wine Bar and they practiced making various types of sweet and savory
Takoyaki.  Takoyaki is a Japanese snack made from a type of pancake batter, typically with octopus in the fritters.  Jeff and Rowan made 3 savory versions using octopus, shrimp, and crawfish, and 2 sweet versions using nutella and caramel bits.  ALL of them garnished beautifully and were so delicious!
Friday night, they practiced...

Rowan arrived at La Cantera Resort Saturday morning and was welcomed with some pretty amazing swag!

He got to hang out with some family and friends...

and make some new friends too...

The venue was gorgeous, and it was such a beautiful day.

Then it was time to get to work!

Rowan's octopus jokes were a huge hit.  He had the guests laughing out loud!


Thank you Chef Jeff from Copa, Joe Carr from Joseph Carr Wines, and a huge thank you to Ginger with Culinaria for arranging all of this for Rowan and making one of his dreams come true!

Even after cooking in the hot sun for dozens of guests, and entertaining them with his octopus jokes, Rowan literally skipped out of the event...
Then, while waiting for the shuttle to come take us back to our car, he broke out in his happy dance...

It was such a fun day...

and Rowan was one very happy chef, calling it "another best day ever"!

Thursday, May 26, 2016

"If they aren't my match, maybe they'll be someone else's."

In case you haven't followed Rowan's story long enough to know where he stands with regards to a bone marrow donor match, here is a short synopsis...
1~ Despite his life threatening ongoing health issues, and repeat hospitalizations, doctors here in Texas have always felt like Rowan would be too risky to receive a standard bone marrow transplant. 
2~ We have spent the past 2 years traveling to Seattle, Washington, seeing specialists there on multiple occasions.  They have done exhaustive testing and research and finally determined that the benefit of a special type of bone marrow transplant protocol that they have a clinical trial for there in Seattle, should outweigh the risk for Rowan. 
3~ Due to his ongoing septic episodes, repeat ICU stays, and continued dependency on tpn, neupogen and ivig infusions, they decided it was time to proceed with transplant this Summer 2016.
4~ His sister, Zoe and brother, Ian were both tested over a year ago and Zoe was found to be a perfect 10 out of 10 match!
5~ Unfortunately, further lab work for Zoe uncovered a multitude of unfavorable markers, including autoimmune and connective tissue disease, among others.  So, she was rejected as Rowan's potential sibling donor.
6~ The transplant team ran a search of the national bone marrow registry and found zero suitable donor matches for Rowan.
7~ The transplant team is currently looking at HLA typing from both Brian and myself, Rowan's parents, to see if one of us would be preferable over the other to be a haplo-identical or half match donor.  This has not been considered an ideal type of transplant in the past, due to the increased complications of not being a full match, and increased graft versus host risks, but there have been some improvements to the protocols that they can now choose from.  In the absence of an approved sibling match, and with zero matches from the registry, we do not currently have any other viable options.
We obviously were devastated when they declined to use Zoe, she was our ace in the hole.  Then, to get the double whammy news that there were no matches found during the unrelated donor search, that was a bitter pill to swallow as well.  But not for Rowan...ever the optimist, Rowan told us, "It's okay Mom, God already knew I didn't have a match on there.  He's got it all worked out." 
As we wait to hear if Brian or I will be a suitable choice to participate in the haplo-transplant, we are reciting Rowan's words in our heads constantly..."He's got it all worked out."  In the meantime, the transplant team assures us that they will continue to scan the national registry, hoping that someone newly added will be a better match.  That is where our family and friends, and even strangers come in.  We are asking that everyone who is willing and able to, please sign up on one of the donor sites.  There are several avenues to do this: 

Come out and join us next Tuesday, at a Marrow Me Donor Drive being held in Rowan's honor.  All it takes is a quick cheek swab!
Hosted by: Keller Williams City View Office 
Date: Tuesday, May 31st
Time: 10 am to 4 pm. 
Address: 10999 IH10 West, Suite 150, San Antonio, Texas 78230
Ages: 18 to 44 years old
When we told Rowan that people were signing up all over the country to be swabbed to see if they were his match, he immediately said: "I'm so happy people are trying to see if they are my match, and if they aren't my match, maybe they'll be someone else's."  He's right! You might not be Rowan's match, but you'll still be his hero, and you could save someone else's life in the process.
One last thing, because Rowan is ALWAYS thinking of others, last night he asked me if we could ask people to please bring a box of cereal to the Marrow Me donor drive Tuesday, so he can add it to the cereal he has been collecting for Methodist Hospital to give to the San Antonio Food Bank in June.  He said, "that way we can save two birds with one stone!"  I like how he thinks!
So, we hope to see you out at Keller Williams City View Office next Tuesday, either to get your cheek swabbed, to drop off cereal, or to do both!  Rowan will be there to thank you, hug you, and do his happy dance...


Friday, May 20, 2016

"Maybe Justin will be the one to show me around Heaven when I get there."

Justin Easterling passed away from a rare form of Leukemia earlier this month.  He was 12 years old.  He and Rowan attended the same hospital and infusion clinic, but we had only seen them in passing.  Then, both Rowan and Justin were invited to participate in a Ferrari Kids event together one Saturday.  

The boys each got to ride in gorgeous Ferraris which ended up at the grand opening of a new Walmart, where they were given gift cards to go on a fun shopping spree inside.  We laughed with Justin's parents as we passed inside the store, each with carts full of games and toys.  Justin shared his winnings with his sister, and Rowan did the same for his brother.  I told Justin's Dad, "looks like y'all are gonna have a busy night tonight!"  That was the last time we saw Justin and his family.  Justin slipped peacefully away in the hospital a week and a half later, from complications of his disease.  When I told Rowan the news, he immediately said "At least he's not suffering anymore.  He looked so weak and tired. I don't feel bad for him, but I feel bad for his Mom and Dad, and his little sister.  They must be so sad." A few days later when I woke up, and disconnected Rowan's tpn,  I noticed Rowan sleeping like this...


I took a picture because he just looked so peaceful.  Then he giggled out loud a few times.  When he woke up I asked him why he had been laughing and he said, "Mom! I dreamed of Justin in Heaven.  He's not in his wheel chair anymore, and he looked SO strong!"  He went on to explain that Chrissie, Jalene and Julian were all there welcoming him.  He said that they were playing tag, chasing each other around and that "Natalie was their in her flip-flops still, taking care of all of the kids.  Rowan told me, "I couldn't hear what they were saying, but it seemed like they were all showing Justin around.  I prayed that they would help him not be scared, and it really happened!  Thank you God and Jesus!"

Rowan wanted to paint a picture for Justin's parents, so he worked on drawing this special piece... 

Then he painted it in beautiful bright watercolors...

The finished product...

Justin loved Spider Man, and Rowan painted him with one hand "spitting out it's web toward Heaven" because Rowan said "He was ready to go, and God is reaching down for him with his big arms."  He hoped that this would make Justin's family know that he was okay, "because God has him in his arms now".  We framed the painting and mailed it to the Easterling family.  We couldn't attend the celebration of life, but Rowan was very happy to hear that they had the painting on display there.

After Justin's Super Hero themed celebration of life, Rowan got to see Manny and he gave his very own color copy of the painting, because he knew how much he loved Justin too...

A few nights later, as we were falling asleep Rowan told me, "Mom, I'm not afraid to go to Heaven.  Justin was so strong and happy there, and he wasn't sick anymore.  I think God gives me these dreams of Heaven so I'm not afraid when I get there...Maybe Justin will be the one to show me around..."  And just like that he fell asleep.  

I cried softly in bed for nearly an hour.  It's so hard for me to think of losing Rowan to his disease too, but to hear how much peace he has about it, blows my mind.  It's shocking and comforting at the same time.  Don't get me wrong, I hope and pray with everything I have, that we have many more years with Rowan here, but if he does leave us, I will know without a shadow of a doubt that he wasn't afraid, that he is healed, whole, healthy and strong, and that God reached out for him with his big arms, and Rowan probably used his Iron Man repulsor blasters to shoot up into them, just like Justin used his Spider Man web blaster.

Continued prayers for the Easterling family.  Thank you for allowing us to pray for you and your sweet boy, thank you Manny Diotte and the Ferrari Kids organization for giving us a priceless memory with Justin on one of his last good days, and thank you Justin for coming to Rowan in his dreams and giving him such peace.