Today marks Ryan's hundredth day anniversary since his bone marrow transplant. One hundred days of new life.
Today we are feeling especially grateful for Ryan & his amazing strength & resilency, his generous bone marrow donor, and all our family and friends that so lovingly helped us get through an incredibly difficult time in our lives. It is such a special day today. Every day has become a special & precious day for us, but today is even more so.
As Jason so succintly put it, there are only 265 more days before we are given the chance to meet Ryan's hero (his Bone Marrow Donor).
Ry has an appointment at COH today and hopefully we will get the official thumbs up to allow him to go out in public without a mask, eat at ("reputable") restaurants, perhaps even visit Disneyland with him?
I just want to add, that if you are not registered with the National Bone Marrow Registry as a donor, please consider doing it! You could save someone's LIFE, just like Ryan's donor saved Ryan's life. Jason and I are both on the registry and have been on it for the past 4 years. We registered before we ever knew that Ryan would ever need a transplant. We saw Ryan undergo countless bone marrow biopsies and lumbar punctures since he was only 22 months old and strongly felt that if he was strong enough to handle that, then we are definitely strong (and healthy) enough to be able to donate marrow (AKA "LIFE") to someone in need. If we are ever found to be a match, it would be a great honor and priviledge for us to be able to help someone have a second chance in life, just like the chance that Ryan has been given. ...So please, please go out and register if you haven't already. You can do so for free at City of Hope or at our annual LAFD/LAPD St. Baldrick's event on March 12. ...And if you have any questions about it, please send me an email. I'd be happy to answer any questions.
Super Bowl Sunday pics-- why waste it watching football? (hahaha!)
Walk in the rain, jump in mud puddles, collect rocks, rainbows and roses, smell flowers, blow bubbles, stop along the way, build sandcastles, say hello to everyone, go barefoot, go on adventures, act silly, fly kites, have a merry heart, talk with animals, sing in the shower, read childrens' books, take bubble baths, get new sneakers, hold hands and hug and kiss, dance, laugh and cry for the health of it, wonder and wander around, feel happy and precious and innocent, feel scared, feel sad, feel mad, give up worry and guilt and shame, say yes, say no, say the magic words, ask lots of questions, ride bicycles, draw and paint, see things differently, fall down and get up again, look at the sky, watch the sun rise and sun set, watch clouds and name their shapes, watch the moon and stars come out, trust the universe, stay up late, climb trees, daydream, do nothing and do it very well, learn new stuff, be excited about everything, be a clown, enjoy having a body, listen to music, find out how things work, make up new rules, tell stories, save the world, make friends with the other kids on the block, and do anything else that brings more happiness, celebration, health, love, joy, creativity, pleasure, abundance, grace, self-esteem, courage, balance, spontaneity, passion, beauty, peace, relaxation, communication and life energy to...all living beings on this planet.
Bruce Williamson, "It's Never Too Late To Have A Happy Childhood", 1987
Yup, savoring mostly lots of good, simple living! We've been riding a "happy wave" the past few days.
It started on Thursday, with a trip to my new chiropractor/physical therapist. She's amazing! She fixed my back the week before (I had pulled a muscle and have issues with my gait + posture due to my broken shin/ankle bones + surgeries in 2009). This week we were able to start focusing on my ankle/leg, the cause of all my issues. We're taking baby steps, or "peeling off layers" of injury/bad habits slowly. She totally gets it! She totally understands that I don't trust my ankle because it's so weak, and validates the fact that my ankle is responsible for my back pain. Anyhoo, I've been given the green light to slowly start exercising and losing all the leukemia weight I've gained in the past four years since Ryan was first diagnosed. She and I will meet once per week and I will be doing various exercises on my own at home and eventually in the warm therapy pool and lap pool at the Y. I had a relatively early morning appointment with her and I left feeling soooo jazzed up + inspired + empowered + motivated.
Ry had home school that morning as he does every week day. He continues to make TREMENDOUS progress. I find it remarkable that he is learning so FAST despite the total body irradiation and all the other CRAP he endured last year. Ryan is a BAD ASS. In three short weeks, he went from finishing recognition of all the upper & lower case letters in the alphabet to understanding that letters make sounds AND then... READING SIGHT WORDS already!!!!!!!! It's A M A Z I N G !!!! Here is a little video I shot of him a little over a week ago, on the first day that he started reading (sorry for making you tilt your head-- I couldn't figure out how to rotate the video which was shot with my cell phone):
It's not all roses everyday when school time approaches, though. He periodically tries having nasty tantrums and being incredibly defiant to try to weasel his way out of school. We've been stern with him and so has Teacher Maryl, and its slowly sinking in that school is inevitable and a natural part of his life. She is such a wonderful teacher! Ryan has been taking his shark, Bruce, with him to school everyday. He's been spending a lot of time dragging Bruce around, and Bruce is a good support buddy for him. Bruce even listens to Teacher Maryl when Ryan refuses to, lol... Such a good influence for Ryan!
After school, Ryan had his regular appt. @ COH. Jason and I were going to take him together, but decided that I should stay home and "clean." Unfortunately, the Madsen stork delivered my new Madsen cargo bike and ruined all my plans for cleaning that day. Tsk-tsk!! ...The good news is that it started a happiness tsumani!! I was G I D D Y when I saw the stork freight truck pull up with my bike!
I even grabbed my camera (I promised the folks at Madsen Cycles that I'd take pics and email them some). I opened the front door and asked the truck driver if he was delivering my bike and he non-chalantly said with a slightly confused look on his face something to the effect that he was delivering a STOVE. My heart sank a bit. I asked him, "REALLY??? For who? The neighbors?" with a sad, pathetic look on my face. I felt like such a disappointed little kid. He laughed and said, "Yeah, I have your bike!" HAHAHA! As Eddie Murphy would say, "Haha, very funny, M-F-er!" He opened up the truck and I felt like a little kid on the best Christmas day of her life!!! There was our new bike in a giant box!!
Nick was visiting for a few days, so I asked him to come out and help unload/unpack it. I was a little bummed that Ryan was not home to experience all of this with me. My neighbor, Camille was home and I dragged her over to see the bike. Here's the big reveal, with Nick cutting all the plastic straps off and the delivery guy, Hector, hanging around for all the excitement.
I had just downed a venti Skinny Latte Frap and I felt SUPER high on life, high on caffeine, and high on my new Madsen bike! OMG! So, Camille convinced Hector to take away all the packaging for me (she is GREAT at guilt-tripping people into doing things, hahaha!), and I thanked him profusely for making my day and after he drove his big truck away, we all took turns hopping on the bike and riding it around the neighborhood. RoRo came by a little later and she made me ride my bike and sing the Eddie Murphy "ice cream" song while she videotaped me riding my bike because I had posted on Facebook:
{ BEST.DAY.EVER (since Ryan got out of the hospital!). I feel like hopping on my new Madsen bike and riding up and down the block pretending I’m Eddie Murphy and singing, “I gotta ice cream, I gotta ice cream, you cannot have it, you cannot have it, (cos your mommas on the welfare and your daddy’s an alcoholic…)” LOL!! But instead I’ll sing: “I gotta Madsen bike, I gotta Madsen bike, you cannot have it, you cannot have it!” OMG, I feel like a 10 year old having the best Xmas + Bday all rolled up into one day! CAN’T WAIT FOR RYAN to get home so I can take him on a cruise!! Thank you, DPH Foundation and Madsen Bikes!! }
and:
♪♫ Bicycle bicycle bicycle I want to ride my bicycle bicycle bicycle I want to ride my bicycle I want to ride my bike I want to ride my bicycle I want to ride it where I like! ♪♫
"Giddy" is an understatement. Look at this sweet baby:
After what seemed like an eternity, Ryan, Jason and the girls all finally got home, and it was time to take Ryan on his first ride:
I also let Jasmine hop in the bucket with Otis + Bessie (our two smaller dogs) and took them on a cruise around the neighborhood after Ryan went inside with Jason. Unfortunately, I didn't get any pictures of that, which is totally disappointing because they looked sooo cute! :(
Ryan and I see eye-to-eye on the bike... He is just about excited about it as I am! It's been a looooong time coming! I have wanted a beach-cruiser-y bike for YEARS, and then decided I wanted an Electra Townie with an Xtracycle package for hauling Ryan around. ...Then Ryan relapsed and suddenly, an Xtracycle didn't seem like the right thing for us. I had known about the Madsen cargo bike for a while and coveted one, but didn't think we could afford it, etc... Once he relapsed, I knew that was ultimately the bike for us. The bike that would get us back outdoors, breathing fresh air and helping us to enjoy life to its fullest again. The bike that would be the beginning of many, many adventures. The bike that would help me to lose the ridiculous amount of weight I've gained since he was diagnosed. The bike that would help me to get fit again and able to enjoy nature. I started bombarding Jason with Madsen Bike propaganda and brainwashing him as to why we NEEDED this bike.
AND
Super thanks to Madsen Cycles and the DPHF, for helping us to make our dream come true. ♥ Thank you both from the bottom of our hearts!!! This bike is going to be such an integral part of our healing process.
As for Ryan's appt. at COH on Thursday, it went really well. Jason reported on FB: "Actually we needed to switch up his meds a bit. But otherwise doing well. He is still on relatively few meds compared to other kids that have gone through the same procedure." His counts have all continued to remain quite stable and in the good range, with the exception that his liver values are slightly elevated, so Dr. Pawlowska decided to put him back on Actigall, which is commonly given to bone marrow transplant patients to prevent veno-occlusive disease of the liver. They monitor his liver with his weekly blood test results. He was taking Actigall when he was an in-patient, post-transplant. Anyhow, his liver values are only a little bit elevated, so it's more like an orange or yellow flag, as opposed to a red one. I wrote to Dr. P today, asking for permission to take Ryan for bikes at the beach during the weekdays, and to also take him beach camping (in our travel trailer) the week of his 100th day post-transplant anniversary. She responded: "Yes and yes. The bike ride sounds excellent and I hope you enjoy the beach." !!!!
I know I have to wrap up this post, so I'll leave you with a few pictures from our bike riding adventure today (yesterday, actually, since it's waaaay past midnight already) and the link to our Flickr album with all of today's pics.
Nick went home today. :( ...Tomorrow we will embark on another bike adventure: riding to the pharmacy to pick up Ryan's Actigall. This time, we'll take Teresa + Jasmine with us. I can hardly wait! ♥
