Saturday, February 28, 2015
Rowan's sweet friend Jalene's condition started to deteriorate today. She started falling down and having small seizures at home. She stopped being able to keep her balance or even walk on her own. As the brain tumors grow and multiply, this is likely going to continue to happen. They are not sure how quickly things will progress. All they can do is make the best of each day, and as her Mom says "enjoy her". Let me tell you, they are doing a phenomenal job of that. They are two of the strongest parents I have ever met. I admire them, while my hearts breaks for them at the same time.
Rowan really wanted Jalene to have her finished butterfly hand print picture, and her Mom said we could come over tonight. I made their family dinner, boxed it all up and headed to San Antonio with Rowan, the shepherds pies and the artwork.
I tried to prepare Rowan for how she may be feeling, and told him that she may just be resting or sleeping. I warned him that we might just have to show the finished picture to her parents and leave it for Jalene to see later, when she was feeling better. He said ok, and then asked if he should hug her or kiss her on her forehead is she was asleep...I cried softly for the rest of the drive. Such a sweet, caring, thoughtful friend he is.
Thanks be to God, Jalene really perked up when we were there. I was overjoyed to see her standing, and even walking slowly, although unsteadily, on her own. She smiled when we showed her the shadow box with her hand print butterfly in it. She traced the butterfly body with her little finger and immediately noticed the sparkles (I used a glitter modge podge to seal it after I painted the sky and the body of the butterfly). Rowan was so happy to present it to her. It is a moment I will never, ever forget.
Jalene's Mom and Dad loved it too.
But then her Mom, Jen, asked me about the one they did together, the one with both of their hand prints. I told her that I had kept that one at home for Rowan and I. She asked me to send her a picture of it at least. (Luckily, I could do better than that though:) I had actually had a couple mounted pieces of artwork made, that were made from pictures of both of the butterfly hand prints. My plan was to donate them to the silent auction coming up next weekend, with the proceeds to benefit their family. I had decided on the way to their house that I was going to give one of the ones that was made from just Jalene's hand prints, to her grandma and grandpa there at the house. Now, I decided to give the one made from both kids hand prints to Jalene's Mom. They look so beautiful as a set. I was so happy to be able to do it. And they were so grateful in return.
We all agreed that they would look precious side by side on a wall in their home. I promised to have more made for the auction, because I just know they have lots of family and friends that would love to bid on priceless art work made by this little angel, Jalene. I was so grateful that I had brought the ones I already had made (for the auction) with me. That was definitely a God send, and now they were in the hands of the people who needed them and deserved them most.
Sweet Jalene and Rowan hugged each other again before we left, and I was able to capture some of my favorite pictures yet of these two angels. I was so glad we made the trip in to see them again. These are memories I will carry with me forever. On the ride home, I realized that it had just as powerful an effect on Rowan...
When we got in the car, I said "Oh Rowan, I'm so happy she was feeling okay tonight, aren't you?". Rowan said, "I bet she did it for me, because she knew I was coming to see her." I laughed and said, "You think so?". He thought for a minute and said, "Well, it was either that, or God was giving us a miracle. And even if it is just a small miracle, I'll take it."
That pretty much sums it up...
We continue to pray for a miracle for Jalene and her family, a BIG miracle, but will continue to appreciate and "take" each and every small one we can get.
I hope that this story helps you all focus on what is really important in life...
family, friendship, love and faith.
I hope you appreciate the small miracles in your life, not just the big ones,
and as for the people in your life, please...enjoy them!
Thank you Jen Salinas for showing us how to do this.
And thank you Jalene, for showing us how to live, and fight, and inspire...
Continued prayers for the entire family.
Wednesday, February 25, 2015
Well, I received "THE" email from Seattle today. I called Rowan in to read it himself, which he did.
He pretended to pass out for a minute...
Then he sat up and thought for a minute...
Then he smiled big with tears in his eyes...
When we went downstairs, and Brian, Cindy and I talked to him about the news, he started to make this sign...
Cindy, Rowan and I got in the car to go meet up with Zoe to give her the news, and then to pick up Ian from school to give him the news...
First off, was Zoe, because she had just gotten off of work...
We met her in the parking lot after work and Rowan showed her this sign...
...then, Rowan flipped the sign and gave her the big news!
She was a little bit in shock at first...
But they jumped into each others arms within minutes!
Her reply was "I knew it would be me, you're my ginger twin!"
Next up, was to go pick up Ian from school, and break the news to him...
Unfortunately, Ian was not a match for Rowan. As much as Ian wanted to be, and as much as Rowan wanted him to be (Rowan hoped it would be Ian because Zoe historically has been afraid of needles or anything medical.), it just wasn't God's plan. Rowan was so afraid that Ian would be upset. He told me, "Mom, go get him the biggest thing of ice cream you can find first. He is not going to be too happy that he's not my match."
As we pulled up to pick up Ian, Rowan said, "Mom, I got this. Let me break it to him first."
Which he did.
Rowan told Ian immediately, "Dude, I'm sorry Ian, but it's not you. It's Zoe. She's my match".
Ian was a little bummed that it wasn't him at first, but was so grateful (as we all were/are) that it looks like Rowan does have a sibling match after all.
Lots of emotions floating around this house today...
Joy. Excitement. Shock. Fear. Relief. Hope. Faith.
Rowan and I leave within the next couple weeks to go to Seattle to meet with the transplant board and the other specialists and discuss the plan/timeline, but today's email was really, really big news!
A few minutes after we got home from picking Ian up from school, Rowan asked me if he could sit outside on the back step. I checked on him a few minutes later, and found this...
...a very contemplative, yet still smiling little boy.
I asked him if he was ok?
He smiled and answered, "Yeah, I'm just chill-ax-in out here. It's such a pretty day and I'm just so happy. I can't believe Zoe and Ian say they would both do this for me. I wanted it to be Ian because he isn't afraid of pokes, but if Zoe is ok with it too, wow... I really have the best siblings in the world...both of them!"
"Just another reason I like, REALLY, love my life!"
Praising God today!
... and Seattle Children's Hospital, for encouraging the bone marrow typing, and for requesting the blood from Zoe and Ian, and San Antonio's Children's Cancer & Blood Center for drawing and sending Zoe and Ian's labs, and all of you, our friends, family and prayer warriors, for supporting us through this process. When Rowan and I return from our next Seattle Trip (in March), we will know if this is a go or not, and if so, when. We ask that you continue to pray for clarity and safety and peace and health for Rowan, Zoe and the rest of our family.
Our last request comes from Rowan...
"Love your life! Like, REALLY love your life. I do. You should too."
Sunday, February 22, 2015
Over the years, the friends that Rowan has made have not come from school, where most kids his age make friends. Rowan is home-schooled due to his compromised health, immune deficiency and frequent hospitalizations. The majority of his friends, he has met either at doctor appointments, Children's Cancer & Blood Clinic, during art therapy, or in the play room at Methodist Children's hospital. The bond that these children have, is like no other...the same goes for their parents. There is an instant kinship, a special unspoken understanding, a bond that I can't even put into words. It is a "club" that no one wants to join, but if you are a part of it, those friendships are a God-send. This post is about one of those special young friends, her unimaginably strong mother, and how we are blessed to have them in our lives.
This is one of the first pictures I have of Jalene and Rowan in the Art/Play Room at Methodist Children's Hospital. It was less than a year ago, yet nearly a lifetime ago.
They made these little finger casts and decorated them. Rowan named his "Super Rowan". Jalene's Mom, Jen and I talked while the kids worked on their project with the Art Therapist. It was therapy for us I'm sure too...having someone to talk to, someone who was going through unique yet similar trials. Little Sophia was there too, and her equally strong, amazing Mother, Rossio. During that stay, the kids would meet in this room several more times. The art projects changed each time, and the friendships strengthened. I am sure at that time though, none of us knew the changes that were to come.
Fast forward several months...Sophia has just finished her final chemotherapy treatment, had her brain mri, and been declared "Cancer-free".
Rowan and his siblings just completed their HLA typing and we are waiting to hear news from Seattle as to whether his sister Zoe, or his brother Ian, will be a perfect match for his bone marrow transplant.
And Jalene, is fulfilling as many bucket list items as she can, because her parents were recently given the worst news imaginable... her PNET brain tumors have returned, multiplied and are growing. There is nothing else the doctors can do for her. Barring a miracle, she will soon lose her life to this disease. (Though as Rowan will tell you, "It is never too late for God to do His miracles!")
Rowan and I have been so touched by Jalene and her family, that we have done our best to rally our family and friends to help her fulfill as many of her bucket list items as possible. I was blown away by the response of our loved ones. They purchased a motorized "Frozen" themed Mustang convertible power wheels, bought plane tickets for her grandmother and grandfather to join Jalene and her family on her Disney World Make-A-Wish trip, sent money, helped send them to Colorado so Jalene could see snow and build a snowman, and helped me put together the following customized gifts so Jalene can have memorable, personalized, private spa days at home with her Mom, Jen and her sister, Zoe.
On top of all of the manicure, pedicure, facial and bath products and equipment, I bought slippers, headbands, eye masks, and robes in each of their favorite colors.
Red for Mom, Jen...
Purple for Jalene...
Blue for sister Zoe...
Jalene loves butterflies, so I added butterflies in each of their favorite colors, onto their individual robes...
I love, love, love wrapping presents ( I secretly wish I worked at Gimbels as a gift wrapper), and I was so happy to find the PERFECT keepsake gift boxes with the perfect messages on them, and wrapping paper that matched and had butterflies on it.
Tonight, Rowan and I went to deliver these gifts to Jalene and her family at their home. They just returned from California this afternoon (from one of her bucket list trips to visit her cousins). They spent last night in the emergency room in California, where a CT scan revealed that one of her tumors is bleeding into the ventricle. The doctors there told her to go ahead and travel home as soon as possible, before her condition worsened. I don't take this time lightly. I can honestly say that we are the ones who were blessed by this experience, but I pray we helped them even a fraction of that amount.
One of the main reasons Rowan wanted to go see Jalene so soon was so he could "do art" with her again. This past hospital stay, she was there on the 4th floor, but he was in ICU on the 2nd floor. Then, once Rowan moved up to the 4th floor, Jalene got discharged. He never had the chance to "do art" with her this time. It has been on his mind ever since, and he just kept asking me, "When can I do art therapy with Jalene again?" That got me thinking, and Rowan and I came up with a great keepsake art project that we could do with her at her house. Rowan and I got it started at home this morning...
It was Rowan's idea that they could make a butterfly since they are her favorite. I suggested hand print butterflies. Then Rowan came up with the idea that it be half made from his hands, and half made from Jalene's hands. I call that a perfect, in every way, God-directed, art project. We brought all the supplies with us, so Jalene could finish Rowan's butterfly picture, and a blank canvas so she could make one for her Mommy, just with her hand prints, and brought lots of paint to choose from so she could make it in all her favorite colors.
(This is one of my favorite pictures...a young friend painting the hand of his even younger friend... for some reason it reminds me of Jesus washing the feet of the disciples. I suppose because Rowan and I are definitely humbled by Jalene's Journey, and that he and I certainly feel it is our duty and honor to serve her and her family. If in this small way we are able to bless her and her family and humbly serve God, we are more than grateful for that opportunity.)
The butterfly paintings are not complete yet. I have plans to finish them tomorrow. Rowan will keep the one that has both of their hand prints, and we will return the one made completely of Jalene's prints to her Mom and Dad. The process, the time spent together "doing art" (as Rowan calls it) , and these pictures, with the hands of these two sweet angels... those memories will last long after the pink, blue and purple sparkly paint has faded.
One of the other little gifts that Rowan picked out for Jalene is butterfly window clings. He knew she loved butterlfies, and he knew he loved window clings. What he didn't know, is that she loved window clings too:) Jalene went straight to her newly made-over "Frozen" Special Spaces Room and started putting the butterflies onto her window.
Knowing Jalene probably needed a break, and that her family deserved as much quality private family time as possible, we thanked Jalene and her Mom and told them that we would be going. Then I asked Jalene if she liked "selfies" and if she could help me take one with her and Rowan. The outcome was priceless. I will cherish these next few photos forever and ever.
I pray that all who read this, be blessed by this story. I know that Rowan and I have certainly been blessed by Jalene and her family, and will continue to be touched by them forever. I also ask that you continue to pray for Jalene and her family (you can follow them on Facebook at "Jalene's Journey").
More than that though, I pray that you cherish every moment you have with your loved ones, and make beautiful, wonderful, special, memories like these.
God bless Jalene and the entire Salinas Family.