I know I already wrote this a few posts back, but life continues at lightening speed for us. Spring has become a traditionally busy time for our family, mainly due to all the pediatric cancer fundraisers that we are involved with. It's an important time for our family to give back, pay it forward and help others. A friend made a remark a couple of weeks ago that I was "over-extending myself;" however, I disagree. I have to reiterate that these fundraising events have become EXTREMELY important to our family; even more so now that Ryan relapsed and completed relapse therapy. His relapse and subsequent treatment are proof that there is so much more progress to be made in treating pediatric cancers and in finding a cure so that NO MORE KIDS AND THEIR FAMILIES WILL EVER HAVE TO GO THROUGH WHAT RYAN WENT THROUGH. We also feel that it is essential to provide whatever support we can to other families, just like we were given massive amounts of support while we were in the thick of things (and we continue to receive support from family and friends). It is crucial because Jason and I can't fanthom going through that horrifying process alone.
With that said, the 2011 LAFD/LAPD St. Baldrick's Foundation Event was a huge success!!! It was ridiculously fun as it always is, and this year, everyone helped to raise over $75,000 for pediatric cancer research (cash and check donations are still being tallied/added)!!! The silent auction/raffle brought in ~$1200 on it's own. We can't thank everyone enough, especially our generous friends and family who donated to Team Ryan, and our Team Ryan teammates who worked hard to raise money and gleefully shaved their heads and/or volunteered for this important cause.
Above: Team Ryan BEFORE they braved the hair clippers.
Above: Team Ryan AFTER they braved the hair clippers.
Above: More Team Ryan members!
This year, Nick was able to once again shave his head in honor of his little brother, along with his best friend, Daniel (who has become over the years our "other oldest son" ), and Nick's lovely girlfriend, Vivian, also attended the event and worked hard alongside Jasmine & Teresa and the boys to sell raffle tickets and promote the auction.
Both Teresa and Jasmine cut their hair short again this year and donated it to Locks of Love.
It makes me so happy that this event and cause is not only significant for me & Jason, but that it has so much meaning for our kids and even their friends.
Our awesome friends, Larry & Kori, spent the entire day with us at St. Baldrick's and Larry had his head shaved and raised over $1100 for pediatric cancer research in the process.
His son, Zach (who is still in high school) also shaved his head and raised several hundred dollars. Dot Jones, from Glee, was a guest celebrity barber, and she helped shave Jason's, Larry's and Zach's heads. Zach went a little further and managed to have her autograph his bald head.
I mentioned Larry because it was his birthday and that is how he chose to celebrate it. I can't put into words how thankful I am to Larry & his family for doing that on his birthday. ♥
It was amazing as always, to see so many friends and family members stop by at the event or spend the entire day there! This year, I was able to see some friends that I hadn't seen in person in years, including our friends, the Hartmans, who surprised us with a visit, and my friend, Linda, who I hadn't seen since HIGH SCHOOL, and her beautiful baby daughter.
The Van Dyk/Taylor clan drove once again all the way up from Oceanside on the day of the event.
It was equally exciting to see other friends who year after year show up and support the event. It was a good, good time!
This year we honored seven kids at our event, including: Ryan; William; John (who became an angel in 2005); Ryan's buddy, Bodie; Sully; and two teenagers, Candace and Freddie, both whom I had the pleasure of meeting within the past year (wishing it wasn't because of the shared circumstances).
I hope to have a Flickr album with pictures of the event up soon. I've been experiencing problems with my remote hard drive, and hope to resovle the issue with the event photos within the next couple of days. I will post the link once the album is up.
This past weekend, we participated in several more events. Beginning on Saturday morning, our family participated in the first annual Michael Hoefflin Foundation (MHF) Pediatric Cancer Challenge Walk. Here is a link to a news article which discusses the event. Unfortunately, only Jason, Teresa, Jasmine and our friend Rochelle, were able to attend. Ryan and I were also supposed to attend; however the night before the event, Ryan was up most of the night (having tantrums about sleeping in his own bed and just sleeping in general), and I didn't get to bed until around 5 am because of that. Ryan and I stayed home and caught up on our sleep while Jason and the girls went out and supported & enjoyed the event. The MHF helped us out tremendously while Ryan was an inpatient, and they continue to help our family and families like ours. They also have monthly meetings and occassional fun events for the kids, like a bowling party that's coming up soon.
That evening, the festivities continued. The Los Angeles Kings, in conjunction with McDonalds, honored some kids from Camp Ronald McDonald for Good Times, and local Ronald McDonald Houses during the Kings' Legends Night for Ronald McDonald House Charities of Southern California. They had a special event suite for the kids & their families, and after the game, they escorted the kids onto the ice for the special "Jersey off their Backs" ceremony. The Kings were wearing special retro jerseys for the game, and during the ceremony, each player came out onto the ice and gave a child his jersey. They also autographed the jerseys and chatted with the kids a bit. It was an amazingly exciting night, and Ryan had a fantastic night at his first Kings game ever. Jasmine, Jason & I thoroughly enjoyed ourselves as well (Teresa did not attend due to a misunderstanding, and also because of the fact that she's not a big hockey fan). I was floored by how generous and kind the Kings organization was to our families.
The next morning, it was pouring rain. However, we ventured out to meet with some good friends for a special menudo & posole breakfast, complete with mariachis singing in the rain. It was a Relay for Life fundraiser, held by the our friends, the Torres Family, in honor of "Tata" Torres, Sandra Torres, and Louis Salazar. It was an adventure being out there in the rain, but there's no way we would have missed it. The homemade posole was phenomenal, and the Torres Family had an amazing turnout. After the event, we hit Starbucks and then went home and we ALL changed into our (DRY) pajamas and enjoyed a ridiculously lazy, rainy day.
This week we are still off & running. I've been trying to do damage control from all the housekeeping neglect I've inflicted.
Ryan is also in the process of being reassessed by the school district for his developmental and speech delays. Yesterday we had an entire assessment team from the school district over at our house. They are returning on Friday for additional evaluations and then next week for Ryan's trienniel I.E.P. meeting. Ryan still has homeschooling Mon-Fri, and in addition, he also has a speech therapist who works with him here at home on Mondays and Wednesdays.
Thus far, his evaluation by the pediatric neuropsychologist at COH in November shows that Ryan has a "Cognitive Disorder" which is unspecified (it's hard to pinpoint this stuff with little kids who have a hard time focusing and sitting during the long evaluations). He "continues to experience difficulties in the following areas: attention and concentration, language abilities, fine motor skills, visuospatial abilities, executive function and adaptive skills." The preliminary triennial assessment results are pretty consistent with the COH findings. Is this all due to his chemotherapy? Is it due to the total body irradiation he received? Or is it a result of all the hospitalizations and lack of "normal" socialization for a young child? We don't know and might not ever be able to pinpoint one thing or a group of things. Most likely, it's a combination of the above. His neuropsychologist, Dr. Jeanelle, did say that it is most likely NOT from the total body irradiation, because research has shown that for some strange reason kids do not usually show cognitive effects from radiation until around three years after the treatment.
I recently came across the "cancer blog" of a young teenager who finished treatment for Hodgkin's Lymphoma and went on to write a book in order to "raise awareness of childhood cancer and provide comfort for kids and their families through (her own) personal experience." On her blog, she talked about being truthful about her recovery and about how her "cancer battle was not over when treatment ended." She continued: "...It was the beginning of a whole set of other problems that turned out to be the most fierce battle of all to get well. I want more people to know that this is truth for many children. Not only do I want people to know this truth, but I want people to understand that, after cancer treatments, children are like 'giant, open, walking wounds,' with a huge job of recovery before them."
It is so true. That is kind of where Ryan is. I don't think hes a "giant" wound, but I do believe that his wounds were very deep and they are still very fresh & open, and there is yet a lot of recovery and damage control to be done. Honestly, we might not ever be finished with it.
Cancer parents are also like "open, walking EMOTIONAL wounds," too. We cringe everytime our kid gets a low grade fever or the sniffles. We wonder if this signifies a return of the cancer. It might sound like an exaggeration and most cancer parents don't like to talk about it with non-cancer parents, but it's true, and amongst each other we agree to it whole-heartedly. I don't know if that wound will ever completely heal for Jason and I. I think that the odds of it healing more thoroughly were better before he relapsed, but now that relapse and it's treatment is behind us, I think that it's much more of a gaping wound than it would have been otherwise. It requires SO much more maintenance to keep the emotional wound in check. For example, Ryan has actually had a minor case of the sniffles the past 3 or 4 days, and a little part of me is freaking out over it. It takes me back to the fact that he had a cold when he was first diagnosed with leukemia, and he had a lingering cold throughout most of his maintenance chemotherapy, and when he finished treatment, he relapsed, so a part of me associates Ryan having the sniffles with the possibility that the leukemia is lurking. Might sound dramatic, and some people might feel compelled to admonish me to think "good thoughts," but I'm being honest. The rational part of me, reassures me and tells me that it's just the sniffles and reminds me that Ryan is a strong boy and he is doing FABULOUS post-transplant. He has a regular follow-up appointment tomorrow at COH after homeschool, and also a play-psychotherapy session with Dr. Jeanelle. I am looking forward to getting his blood test results so that I can silence the doubt monsters that reside within me... Once again, I have to borrow words, this time from another parent, and add & remind myself that I, too, MUST "refuse to let worry move in and push out the ability to enjoy his presence in this world."
...In closing, now that St. Baldrick's and the MHF walk is behind us for this year, we are gearing up to do the annual Camp Walk for Kids which supports Camp Ronald McDonald for Good Times, a year round, medically-supported, cost-free camp for kids with cancer and their siblings. I will post more about this walk tomorrow because I've been rambling on for some time now.
If you're still reading, I salute you! Thanks for stopping by.
Comments