Saturday, April 30, 2016
Transplant talks from the tub ~Part 2 "It's the first time I'll actually be waiting for a hospital stay to get here."
As most of you know, Rowan is no stranger to hospitalizations, surgeries, and other medical procedures. It's what he has dealt with his whole life so far...repeatedly. But the prospect of getting a bone marrow transplant is still a HUGE deal. When he was in the tub the other night (remember I mentioned there was more to the conversation), Rowan said excitedly, "It's the first time I'll actually be waiting for a hospital stay to get here." I told him I was glad to hear he was actually excited about it, because it has been such a big decision for our family, we wanted to make sure he was ready and willing too. I told him that since he was under 18, his health care choices are up to his Dad and I, but that we feel he knows his body better than anyone and that he is mature enough to 'help' us make decisions about his care.
See, if Rowan had cancer, or was in complete bone marrow failure already, we wouldn't have a decision to make...it would be a no brainer...it would be time to transplant. But Rowan is much more complicated than that. He does have a primary immune deficiency, anemia, iron deficiency, chronic neutrapenia, and has required daily neupogen and biweekly ivig and iron infusions for years. His repeat battles with sepsis have been threatening his life since before he was even a year old. Coupled with his other health issues, his poor functioning gut, seizures, asthma, migraines, hydrocephalus, Chiari malformation, endo-lymphatic hydrops/meniere's, etc, Rowan's medical condition is very complicated. It took Seattle 2 full years, with repeat trips up there, extremely in depth testing, over a dozen specialists, and many modifications to his treatment, before the transplant board finally came to the consensus that it is time to transplant. Brian and I know that they have left no stone uncovered, that they have not taken this decision lightly. Nor have we. I just wanted to make sure Rowan was on board. And boy is he.
He told me, "Mom, you know me. I hardly have patience to fall asleep, I hardly have patience for a game to load, I feel the same way about my transplant...I just wish it was sooner. I'm ready for it. I'm ready to get better. I'm ready to not be so sick anymore, to stay out of the hospital more, and to finally go to real school. It's time Mom. The doctor's know it. You and Dad know it. I know it."
I sat there in tears, thinking, "Thank you God. What more could I ask for?" Rowan is completely ready to fight through this transplant...and to get better. I thought that was all the confirmation I needed...but Rowan of course had even more for me...
To be continued...
Wednesday, April 27, 2016
I had a human, mommy moment tonight I guess. As I gave Rowan a bath this evening, I had a lot running through my mind...words like: bone marrow transplant, Seattle, insurance, donor search, no medicaid coverage out of state, housing, GVHD, etc.
I brought a couple of Rowan's homeschooling books to the bathroom with us, because honestly, some of the best, uninterrupted, "unhooked", one on one time we get, is when Rowan is in the bathtub. I had planned on doing "history bath" as we call it, and he had just read another chapter of Charlotte's Web, so I hoped he could answer some of the study guide questions from the tub too.
However, Rowan must have felt my stress level. I try to keep a brave front for him, but he is a very good read, so it doesn't always work. As the tub filled, but before I could even pick one of the books up, Rowan said, "What's wrong Mom? What are you thinking about?" I was about to say "nothing", but I knew he would see right through that fake answer. Instead, I said, "I'm just thinking about everything that goes into planning your transplant, and into relocating to Seattle for it. I'm fine. Just a lot on my mind." Then he did what he does best. He redirected me. He taught me. He opened my eyes.
He said, "When I'm worried or scared Mom, I just focus on the good. That always helps. What if we talk about how much the transplant could help me, or what if we plan my after transplant party? Would that help take your mind off the bad stuff?"
I answered, "Yes Rowan, yes, it would help a lot."
What happened next was an hour or more long bath time for Rowan, with no homeschooling done (and that's okay), where Rowan and I party-planned, laughed, cried, typed notes on my iphone, discussed possibilities, probabilities, odds and potentials. I will never forget this night, this bath time, this moment. The moment I learned how to prepare for, cope, handle and deal with potentially life changing, but also potentially life threatening choices...from my 9 year old.
Focus on the good.
Focus on the potential.
Focus the possible.
Up next... Transplant talks from the tub ~Part 2 "It's the first time I'll actually be waiting for a hospital stay to get here."
Saturday, April 23, 2016
Rowan has gotten to do some pretty amazing things in his 9 years of living so far, and today was one of those special times. A huge thank you to Manny Diotte, The Ferrari Kid organization, and all of it's amazing volunteers. Rowan became a Ferrari Kid today, and participated in one of their red carpet events in San Antonio. It started at the Ferrari dealership this morning, and ended at the grand opening of a new Walmart out near the Dominion. On the way home, I asked Rowan if he had fun riding in the Ferrari and he said, "it was much more than a car ride Mom." Then he went on to say, "It's so kind of Manny to do this for kids like me. I felt really special, and lucky...not like a sick kid."
Here is Rowan at the Ferrari dealership. The cars were beautiful, and it is so wonderful that they have these awesome volunteers who bring out their personal Ferraris just to show these kids a good time. And it was a beautiful day for a ride!
Once the Ferraris arrived at the new Walmart, there was a huge reception, a red carpet, people taking pictures, etc...truly first class all the way.
Rowan was tickled that people were even asking for autographs;)
As if the Ferrari ride and reception weren't enough, each Ferrari kid received a goodie bag and another big surprise... Manny told us all that Walmart had contacted The Ferrari Kid foundation and told them they wanted to give them money for the kids to spend at the grand opening, so each child received a Walmart giftcard to go on a shopping spree inside. So generous of them!
Talk about FUN! Rowan had a hard time choosing what he wanted, but the gift card was so generous that he was pretty much able to get it all!
(Someone recently gifted Rowan a bike, so he didn't get this one, but he did ride it around the store and did pick out an awesome helmet, bell/buzzer, bike pump, and "Jesus loves me" license plate for his new bike.)
Then he and Ian headed to the video game section, where they picked out 3 new xbox games...
His final choices...walkie talkies and new tennis balls.
At lunch afterwards, Rowan had a blast using the walkie talkies. They will work 23 miles away from each other, but he had fun even using them a foot away from his Dad:) And I have a feeling we are going to be hearing "over" A LOT!
Thank you so very much Manny, Sunday (Rowan's Ferrari driver today), Walmart Dominion, the Ferrari dealership, and each and every volunteer that made this day super special for Rowan, our family, and all of the other Ferrari kids. And Rowan was certainly right..."it was much more than a car ride!"
Monday, April 11, 2016
Tonight, Rowan got discharged from the hospital after 7 days... 6 of those days being in PICU. One of the first things that he was most excited about was getting a bath...a bubble bath, to be more specific. After I spent almost 2 hours emptying the car, sorting bags, starting laundry, etc., he was ready for his bubble bath.
In the tub, Rowan relaxed and soaked for nearly 15 minutes. Then, I noticed that he seemed to just stare off, fixating on the bubbles. He looked so deep in thought. I asked him what he was thinking about, but I could never have imagined how profound the thoughts he was having were...
Here is what he said:
"I like bubbles. Bubbles make me happy and sad. They remind me of my friends... bonding and joining together, and then slowly popping away.
They make me happy, because at least we did get to meet and bond together for a short period of time, even when we slowly start popping away eventually. Still, I like bubbles."
He thought for a moment and finished with: "In heaven, if there are bubbles, I'm pretty sure they never pop."
I pray that everyone gives that time to soak in...that you recognize who/what makes you happy in life, and even better, that you realize what will make you complete in heaven.
Saturday, April 2, 2016
The Guardians of the Children Von Ormy hosted their 8th Annual Fiesta Party/Children's Fair today on the west side of San Antonio. They had free music, face painting, coloring, games, food and drinks, tractor pulled train rides, and so much more. The biggest part of the event was the bike raffle. They had around 75 brand new kid's bikes being raffled off. Talk about excitement and smiles from kids of all ages!
Since Rowan was made an honorary "Lil Guardian" member last month, he has been so excited to have an opportunity to wear his leather vest, with his road name "HOPE" on it, and to stand with his brothers, and serve the community.
Today was that day. The whole way there, he kept saying, "I can't believe this is my first official GOC job", "I finally get to help the Guardians help other kids" or "Yes, my first real volunteer job as HOPE!" We talked about the bike raffle on the way too, and he wanted to stop and buy a bike to donate to the raffle as well. He picked out an awesome Avengers boy's bike and wheeled it in to the event proudly...
He placed the bike up front with the rest of the other donated bikes...
Inside the event, it was awesome...
Such an amazing kid friendly, kid focused event. With lots and lots of Guardians and other amazing groups there: from Von Ormy, the Hill Country, and San Antonio, working together to help under served children in the area.
April is Child Abuse Awareness month, so this was also a perfect way for them to raise awareness and show their support for children in the community. Rowan and I were very privileged to be a part of today's festivities.
Before we left, Rowan spotted a little boy on the playground. This little boy happened to be the one who won a bike in the raffle, and chose the Avengers bike that Rowan himself had donated. Rowan just stared and stared at that little boy riding the bike around the playground, and he smiled the entire time he watched him. Someone suggested he get his picture taken with the boy who won the bike, so Rowan asked me if he could go the boys parents if that would be ok. Rowan approached the family and sweetly said, "Excuse me...I donated that bike, and I'm so glad your son won it. Could I get my picture taken with him and the bike?" The family said yes, and thanked Rowan, and I got this picture...
As we walked to the car, Rowan said "It's such a good feeling to give someone something...it's actually the best feeling." I told Rowan how proud I was of him, for picking out, purchasing and donating the bike, and how I was even more proud of how much it warmed his heart to give." Then I started thinking...Rowan does not even own a bike of his own. He wants to. He even has it on his bucket list to learn to ride a two wheel bike. But, he has never ridden one himself, not even with training wheels. But you know what, he didn't ask me to keep the one we bought today, he didn't ask me to buy one for him today when we were at the store, he didn't ask me if he could sign up for the bike raffle, and he didn't once look sad or forlorn watching 75+ other kids go up and choose their brand new free bikes. Nope, instead he smiled from ear to ear, watched other kids ride bikes, played tag with some new friends on the playground, and thoroughly enjoyed himself. That was a "Proud Momma Moment", and Rowan is right..."It IS such a good feeling to give someone something...it IS actually the best feeling."
Thank you Guardians of the Children for all you do for the children in this community, the abused, neglected, impoverished, under-served, and all the others that you are setting the example for! You are touching more lives than you know...ours included!
Just look at the smile on Rowan's face, the whole time...
Thank you so much Danny "Bootlegger" Lopez, and all of your Guardian's of the Children Family. Rowan is so happy to be among you, to stand beside you, to serve, and especially, to give...