Pre-B Standard Risk-High Leukemia diagnosed on March 3, 2007. Completed 3 years and 4 months of chemotherapy treatment on 7/3/10. Diagnosed with Relapsed, High Risk Acute Lymphoblastic Leukemia on 7/13/10. Unrelated Bone Marrow Transplant on 11/16/10. Now cancer free!!! Still being monitored for signs of relapse and/or side effects from treatment.
I wanted to post about this topic yesterday night, but I was pretty upset and wanted to sleep on it. I woke up this morning just as upset about it as I was yesterday. So here goes...
I want to start by saying that while I do have respect for the work that the American Cancer Society (ACS) does for adult cancers, I have been quite disillusioned with them for some time since finding out that while they collect billions of dollars in donations each year, they only allot HALF A PENNY from every dollar they collect towards pediatric cancers. That's ALL PEDIATRIC CANCERS COMBINED. Totally unfair considering they utilize sick children in their ads and campaigns quite a bit for someone who does not support them.
Anyhow, yesterday, the following blog post from the ACS DIRECTOR OF MEDIA RELATIONS was brought to my attention (I have cut and pasted the original file since he felt compelled to remove/revise it today because he received over 350 comments from outraged readers and who knows how many angry emails in his inbox):
Bald Barbie Demand is an Over-Reach
Posted on January 13, 2012 by asbecker
We apologize if the below post offended some of our readers. We realize that in our zeal to highlight an issue that deserves debate, we may have sounded insensitive. This post was written to provoke debate about the proliferation of products marketed to raise awareness, and we think asked legitimate questions. We believe discussions like this can help focus all our efforts more closely on our shared goal of defeating cancer.
You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,
“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”
To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.
In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.
We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?
The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.
This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.
Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.
My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?
Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.
Personally, I am not especially interested in the Bald Barbie controversy, but I was appalled by his callous remarks and the incorrect information he disseminated throughout his post and felt compelled to post the following response in the comments section of his blog (note: I didn't realize at the time that his name was Andrew Becker, and thought it was "Asbecker" which is the name he posts under):
Wow, what incredibly condescending and inaccurate remarks, especially considering that they were written by the DIRECTOR OF MEDIA RELATIONS for one of our country’s top cancer fundraising charities (we are talking BILLIONS OF DOLLARS here). Mr. Asbecker, you erroneously described pediatric cancer an “exceedingly rare” disease when it is IN FACT THE NUMBER ONE DISEASE KILLER OF CHILDREN (“more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined”).
In your article, you tried to liken the chances of being struck by lightning (which are ONE IN ONE MILLION) with the chances of a child being diagnosed with cancer (which are ONE IN FIVE THOUSAND or TWO IN TEN THOUSAND; in simpler terms, “a child in the U.S. has a 1 in 320 chance of being diagnosed with cancer before their 21st birthday”). I am not twisting your words; you wrote: “If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.”
Mr. Asbecker, I have some questions for you that I would like for you to answer as a representative of the ACS and as their Director of Media Relations… If pediatric cancer is so “exceedingly rare,” then why has it touched my family 3 times in a little over a decade? I have a cousin who was diagnosed at age 6, my own son was diagnosed at 22 months of age, and our close family friend was diagnosed at the age of 14. There are no obvious correlating factors involved. Why are pediatric oncology wards usually filled to capacity and why is it that approximately 46 children are diagnosed everyday in the U.S. with some form of cancer? Why is it that approximately 2300 kids (NOT 1340 as you erroneously suggested) in the U.S. die each year from it?
Why is it that you and the ACS feel that you deserve to even weigh in on this topic and ask questions such as: “To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit?” How about answering this question instead and being HONEST with the public: What does the ACS accomplish (specifically in terms of pediatric cancer) and WHO DOES IT BENEFIT??? Why does the ACS only contribute .5% of every dollar (less than one penny!) collected in donations towards pediatric cancer???? Why does the ACS actively use photos and videos of pediatric cancer patients in their P.R. campaigns, actively recruit children for their Relay for Life events, and use schools for staging these events, while doing SO LITTLE to help them fight cancer? Forget about the Bald Barbie Movement, the ACS should be asking itself whether it’s own movement is meeting the demand for pediatric cancer research funding, prevention and services as much as it would like for the public to imagine, and also whether the funds contributed by the ACS towards pediatric cancer “will result in any meaningful support reaching those who need it.”
In my opinion, the ACS should clarify their new slogan “The Official Sponsor of Birthdays” by changing it to “The Official Sponsor of More Birthdays for ADULTS ONLY.”
This effort to ask Mattel to create a bald Barbie is not just “about fighting cancer” as you imply. It is so much more than that. It’s about providing comfort for children afflicted with cancer and for children who are close to someone who is battling cancer. Children process things much more differently than adults, and that’s why every major children’s hospital and pediatric ward has an in-patient playroom and why there is such a thing as play therapy for children.
I also believe that even if Mattel did agree to manufacture such a doll and donate the proceeds to true pediatric cancer charities such as St. Baldrick’s and Alex’s Lemonade Stand, I am sure that they would donate more than just a shoddy, token half penny for every dollar they collect, unlike the ACS’ current practices.
You wrote: “In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives), do we need one more thing whose function is to ‘raise awareness’ about cancer? Is raising awareness worthwhile?” RAISING AWARENESS IS EVERYTHING BECAUSE WITHOUT AWARENESS THERE ARE OBVIOUSLY NO DONATIONS, WHICH MEANS BILLIONS OF DOLLARS OF LESS FUNDING FOR CANCER RESEARCH & PREVENTION. Come on! You know this already, don’t you? Please be honest and disclose the amount of annual ACS revenues which are dedicated to raising awareness and the need for funding for prevention and research??? Don’t even get me started with your remark about our world being littered with “cancer totems.” Why is it okay for the ACS and Susan Komen and many other organizations to do more far more than their share of the “littering,” yet, when someone approaches a major manufacturer to create a doll which will not only comfort children, but also raise money for pediatric research, why is it suddenly not worthwhile to litter our world with such awareness?
As far as “a limited number of which are from ACS initiatives”— let’s be HONEST; the ACS markets and peddles HUNDREDS of different kinds of cancer totems (http://www.acsgiftshop.com/default.aspx), and yet, you are protesting the manufacturing of ONE Bald Barbie for children? What is this really about?
You went on to state that “sadly, some 1340 (erroneous statistic) children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support…” Sadly this sympathy and support comes from sources other than the ACS.
To suggest that parents, other family members and friends of children who either have cancer or are somehow affected by cancer are a “social media mob” and/or “consumer bullies,” or to suggest that this is merely a “publicity stunt” as one of your supporters wrote, is incredibly irresponsible, insensitive and an “over-reach” in itself.
Put yourselves in our shoes. I think if you had a child or were close to a child who had cancer, you would take a much difference stance and I doubt that you would even be able to retain employment with the ACS in good conscious based on the principles raised above. Thanks for your two cents in this matter (really just half a cent, actually), but you can keep the chump change.
ACS, how about changing your policies so that they are more fair towards the sick children whom you exploit in your marketing campaigns instead of just apologizing to “some of the readers” that you offended? That would be a more logical approach to focusing your efforts on defeating cancer in all age populations, not just adult ones. I feel that is a much more legitimate question than any of the ones raised in this article or your subsequent apology.
Andrew Becker's poorly thought out and condescending, hurtful remarks created a HUGE outcry from parents and loved ones of pediatric cancer patients, in addition to healthcare professionals and even adult cancer patients and/or ACS supporters. This outcry has been all over the internet, including on the ACS' Facebook page, their blog and other blogs. Today, he felt compelled (or coerced) to retract his original statement and post this "updated" version:
Bald Barbie Demand is an Over-Reach –UPDATED
Posted on January 13, 2012 by asbecker
I want to sincerely apologize for the pain my post, which I have now removed, has caused. Like many other committed staff members and volunteers at the American Cancer Society, I have lost loved ones to cancer, and I work here because I want to help end the suffering caused by the disease. But losing a child to cancer (or for any other reason) is unimaginable to me. The idea of having one of my children diagnosed with cancer is a pain I cannot comprehend. I am sorry for making anybody feel marginalized. It was not what I intended. It is not how I feel.
When I set out to write I wanted to raise questions about activism and social media around disease. I did not mean to imply that I or the American Cancer Society believe that sick children are not important. Indeed I wrote that each of these cases is tragic, and that the children and their families deserve both sympathy and support. That is what I believe.
I am committed to repairing the relationship between the advocates I have upset and the American Cancer Society. The idea that my words would cause people to lose faith in the good work of the Society is horrifying to me. The Society succeeds because of our more than three million volunteers, and because of millions of others who generously support our work. In my more than four years working at ACS I have seen one example after another of this organization’s incredible mission being carried out, and each time, I am inspired. I have also seen success that extends to all of us, as cancer incidence and death rates continue to drop. I hope I have not jeopardized the good will that makes this progress possible.
Andrew Becker
To which I responded:
Dear Mr. Becker,
Thank you for your apology, however, ACTIONS SPEAK LOUDER THAN WORDS. An apology with no actions to back it up is damage control at best.
It’s time for the ACS to change it’s policy towards pediatric cancer. The fact remains that that the ACS only donates less than half a penny towards all pediatric cancers for every dollar donated to the organization. If you are so committed “to repairing the relationship between the advocates (you) have upset and the American Cancer Society,” then it is only logical that you begin to work on repairing this heinous policy. Alternatively, stop using children in your campaign slogans and stop encouraging them to raise money for the ACS since your organization is unwilling to step up to the plate for them when they are diagnosed with cancer.
I want to be clear and state that this is not just an issue involving a bunch of irrational, emotional parents fighting to have a bald Barbie created. This is so much more than that. This is something that has been on-going for a long time, this problematic relationship between the ACS and most pediatric cancer parents. This issue is based on the fact that pediatric cancer is so severely underfunded, and the ACS just contributes to that dilemma by using children in their campaigns to collect donations, but allotting pediatric patients and research only .5% of the total donations they collect.
Ryan matters. Every child afflicted with cancer matters. They are worth so much more than just .5%.
In the words of another parent: "Children are our future and these are the people that will be taking care of US at some point so we need to give them a chance to live a full life just like we have. Not to take away anything from someone suffering through an adult cancer but they are ADULTS….they have voices and the means to raise money and to get the word out. Children suffering through pediatric cancer do NOT….so we need to be their voice."
The Great Cornjulio!
Ryan had his regular check up at City of Hope today, and (in Jason's words) "Regular labs and all are normal. He also started his immunizations all over again. Four shots, one in each limb all at once. OUCH!! Even with all that he was jumping, laughing and yelling as we left." He is seriously tough & happy stuff!
By the way, speaking of happiness, HAPPY NEW YEAR and BEST WISHES to all of you from our family!!! It has been a LONG time since my last post and I also feel bad about not sending out cards this past holiday season...
I feel totally compelled to get back in to the blogging groove this New Year. Blogging last year while Ryan did some major recovery work following his transplant was very hit and miss, partly because we have been so busy catching up on life and getting to this point where we now feel like we have somewhat of a "normal" life again after so many years of everything revolving around Ryan's treatment and survival. Not just his survival. Our survival. Surviving day to day. The other reason why I didn't blog much last year was because I had so many conflicted feelings and a lot of anger that I had to work through. It took a long time to work through most of it and understand where it was coming from and why. I was trying to process everything we had been through. There was a lot of grieving and anger and I was starting to wallow and lose myself in it. It wasn't necessarily the feeling sorry for myself type of grieving and anger; more like the "Ryan is better and I am grateful everyday day for that, but I'm also *so fucking incredibly pissed* that there are so many kids & families out there who are still struggling through this cancer bullshit and some of them are not making it, but no one else seems to think this is a problem (except other peds cancer peeps) but I do and I don't know what to do with all these pent up emotions" type of grieving and anger. I was really angry for a long time and didn't know how to express it, understand it or channel it. Since then, I have learned that I'm entitled to be angry, but I've also learned that there is so much positive stuff that can be accomplished with such intense energy and emotions. ...And that has brought me so much more peace & clarity and made me much stronger and happier.
As for Ryan, Teresa, Jasmine and Nick, they are all doing well. They are dealing with the normal challenges of growing up instead of living the life we had to live for four and a half years. I feel like this blog post should be a recap of what they've been up to since last year because I didn't send out a Christmas/New Years card. I feel like a bad mom, because I have been able to get them done the past few years dsepite Ryan's illness (even though I didn't always have a chance to finish sending them *all* out, lol) but I didn't this year, and also I like seeing them and having them as a tangible record of the kids' progress/growth each year.
Ryan is doing phenomenally well. He is flourishing. He is such an incredibly happy & resilient kid. He has made an excellent recovery and transition. His days are spent at school playing catch up and learning lots of new stuff in kindergarten and playing with all his buddies. He played soccer this fall and it was the first time he has ever been able to participate in organized sports. He loved it! He was a bit awkward because he hasn't been exposed to the regular physical activities that most kids his age have been exposed to, but he love almost every moment of it. He could be seen 90% of the time running around the soccer field with a huge smile on his face. He wasn't particulary interested in strategy or being competitive like most of his teammates were starting to be. He just seemed so happy to be running around on a field, breathing fresh air with a bunch of kids his age. Watching him run was breath taking and I cried his first few practices and probably during his first game because it was so hard to believe, yet so beautiful to see. Something so simple.
Believe it or not, he also had a chance to kind of learn how to ice skate in December, thanks to an amazing young woman (and fellow camper) named Kristina, who set up a free ice skating day for our entire Camp Ronald McDonald for Good Times family. She did this as part of her requirements for earning one of Girl Scouting's highest merit badges. She also made arrangements for volunteers to coach the kids out on the ice. Ryan's volunteer buddy/coach opened up a whole new world of fun and speed on ice for him and he enjoyed it immensely!
Jason and the girls also had a chance to get out on the ice while I stayed on the side lines, observing, with a somewhat broken camera (which has since been fixed, thanks to the generosity of a very special person). I tried getting out on the ice initially but quickly realized that my ankle was still too weak for ice skating due to the fracture I sustained nearly three years ago (on that fateful day, sliding down a small hill in Death Valley, lol).
When he is not at school being a well behaved student, Ryan is at home with us being a mini tyrant, bossing us around. Or at least trying to boss us around. He is getting better about that. He still thinks he's the boss of us at home. He loves playing video games, despite the fact that we didn't allow him to play them until he was hospitalized after his relapse. He is now obsessed with them, I am embarrassed to admit. He also enjoys playing with his toys, riding his bike, riding his police car, watching movies and having us read books to him. He is in LOVE with the iTouch that was generously gifted to him last year by employees from College of the Canyons who adopted his "mini wish" last year through their annual "Make a Difference Day" program. His iTouch has really, truly made a huge difference for him. He has educational apps, movies and games loaded on it, and it especially comes in handy when he has visits at City of Hope, and while we are travelling there, in addition to the three times that he had to visit an emergency room last fall (two visits for the fever while we were camping in BFE, and one more when he split his lip and gumline open). We also use the iTouch and the video games to bribe him to do what he's supposed to do on a daily basis, as in "finish ALL your homework" or "pick up ALL your toys" "if you want to play videogames or watch a movie on your iTouch today." It works wonders on him and has helped us a lot. Remember, this is a kid who almost drowned in toys/rewards when he was really sick and who really couldn't have chores or normal daily tasks. So we had a lot of disciplining to catch up on the past year. Surprisingly, Angry Birds stickers also work well in enforcing good behavior with him. We also use regular stuff like "finish blah blah blah if you want to go outside and play."
The only lingering issues that Ryan currently struggles with as a result of his treatment are developmental delays and cognitive issues. He remains a couple of years behind his peers physically and academically. He seems to be catching up with them socially and emotionally. He has an aide in class, the lovely Ms. D., whom he shares with another student. He is in a regular kindergarten class, but it's called an "enhanced kindergarten classroom" because of the "one-on-one" aide that two students share. She is also able to help other students, but her priorities are with Ryan and the other student. Ryan struggles to focus on and process information that might come naturally for other kids his age. This is probably a result of the intrathecal chemotherapy that he had at such a young age and for such a long period of time (intrathecal means injected into his spinal canal). He had 27 of those toxic (but life-saving) injections between the ages of 1 and 5.
Ms. D. helps him to remain focused, explains tasks to him and helps him through it. She is also starting to encourage him to be more independent, as is his regular teacher, Ms. C. Ryan is still learning to write his first name independently without tracing it, while other kids in his class have already moved onto writing small sentences on their own. He still struggles with recognizing many of the sight words that other classmates are now reading and forming sentences with independently. He still can't really draw simple, recognizable pictures. During P.E., he is unable to keep up with simple instructions and exercises. His mind and body simply aren't communicating properly enough for him to do it on his own yet. However, he has made TREMENDOUS progress since the school year began and continues to make progress and we are extremely proud of him.
He continues to have half an hour each of speech and occupational therapy at school each week, and in addition to that, Jason and I recently started taking him to a place called "Wellness Works" for an extra half hour each of weekly speech and occupational therapy, in addition to a half hour of physical therapy. This is all to help improve his coordination, fine and gross motor skills, and to help him catch up. He loves going to Wellness Works. His therapists are amazing there and actually offer weekly feedback and homework assignments for him at home, unlike the ones at school, who I only meet once a year during his annual Special Eduation assessments, or if I seek out a special appointment with them on my own. I have learned the past couple of months that there is a world of difference between private therapy that you pay for and therapy that is offered through the school district. I'm not trying to say that the school therapists suck (although one of his speech therapists last year was a bit of a nightmare), but in terms of feedback and a coordinated relationship between the parents and the therapist, you get what you pay for. I wish I knew this years ago. Twelve years ago, to be exact, when I first started dealing with Special Education services for Jasmine and Teresa. They have had some good therapists & some decent ones, but seeing Ryan's private speech therapist in action with him makes me wonder what other advances we could have accomplished with the girls had I known about the world of private speech therapy the past twelve years. I highly recommend additional private sessions for any child who needs speech therapy.
My purpose in sharing Ryan's struggles is not to just complain and feel sorry for him. I don't feel sorry for him; I admire him! He's a tough little dude, tougher than most adults, and I'm incredibly proud of him and his accomplishments and triumphs. I guess in a way I am complaining, but I am complaining with a purpose because I want for people who are not directly affected by pediatric cancer to know that 3/4 of kids like Ryan are affected by life long, long term side effects as a result of the very treatment that saved their life. "When the doctor says 'Go home, you're cured,' that's not the end of the story," for pediatric cancer patients. The lucky 75% who survive "have the rest of (their) life to get busy living through the challenges and consequences of not dying from (their) treatments..." ...And that is NOT okay. Trust me, Ryan's learning disabilities are the least of my concerns for him and I am grateful that his disabilities are not extremely severe. However, I have met and heard about other kids who carry a much larger burden and wage a much harder struggle. I am NOT okay with the fact that kids who have already been through so much go on to have life long burdens and struggles as a result of toxic treatment. ...And that is why we must continue to support research and further advances in pediatric oncology.
...but I digress, because I've kind've wandered off the topic of how all of the kids are doing and what they are up to.
So Ryan in a nutshell is a super happy camper, full of energy and might, and busy catching up and making up for lost time.
Jasmine is now 15 years old and in tenth grade. She is doing well after initially struggling a bit with the transition to high school. She was recently recruited by the school's frosh/soph basketball coach and she now plays for her school!
It has made a world of difference for her. The past few years, four and a half years to be almost exact, were hard on all the kids, not just Ryan. All of the bigs basically had to stop playing sports and being involved in extracurricular activities while Ryan was sick because we could not firmly commit to anything other than his health. Our lives revolved around him. Now that he is better, the bigs are starting to be able to pick up where they left off with their young lives.
Jasmine has always been extremely athletic and to be able to once again have outlet for it is a real source of joy, pride and inspiration for her. I am really proud of her and happy for her. I used to also play varsity sports in high school, and being an inner city kid, it was not only good for me physically, but it also opened my eyes up a bit more to the world, being able to travel to other cities and other schools and participate in activities that I wouldn't have been able to otherwise. Jasmine is not an inner city kid, but our life has been very narrow, rigid and focused the past few years and now she is able to just take off, have some space, independence and explore the world a bit more now that she is part of the team. She is busy with basketball 6 out of 7 days most weeks. She is also maintaining her grades and being even more responsible than she was with her assignments before she started playing basketball, despite the fact that she has a lot more responsibilities and less time now. We are proud of her.
Teresa is 17 and she has had a rough year, but she has grown and learned a lot. She is a great kid. She maintains her grades and brings home good progress reports each week. We are currently exploring creative options for her in terms of extracurricular activities. She has toyed with the idea of returning to soccer, but ultimately decided against it. Instead, we are looking into horseback riding instead. This past summer of course, both girls also learned how to surf, which I shared on our blog. I am hoping that next summer I can join them. Some of Teresa's New Year Resolutions are to get braces, continue to get good grades and graduate. She also wants to jog everyday, start practicing her driving skills again and get a job during summer vacation. We are also very proud of Teresa.
Nick is doing really well and he is still living in Carlsbad. He is getting back on his feet financially after struggling with having two car accidents within a 6 month time span. He's been working for Target Mobile for around 6 or 8 months now, and he has progressed to a mangerial position in a really short time frame. Not bad for a 20 year old kid. He is now focusing on balancing his responsibilities at work with getting back into school because ultimately a college education is his other immediate goal in life. He is a great kid, and he is a really wonderful big brother and cousin to Ryan & the girls. Next time he is up visiting us, I really need to concentrate on taking more pictures of him now that my camera is back in action.
...Manuel, I have not spoken about much on the blog the past year, mainly to protect his privacy and I will continue to do so. Manuel has not lived with us for well over a year and sadly we do not get to see him that often. He is currently trying to work & figure things out for himself on his own because sometimes that is the only way to achieve that goal. We are hoping that he is able to do so in the near future.
I need to wrap up this post. I have almost hit the 3000 word mark and still might hit it by the time I say "bye," so I'll be brief and say thanks for stopping by as always. ♥
The good news came in droves today. First, I checked my email and read a note from our local Congressman's (Representative Elton Gallegly) legislative counsel. I wrote a letter to Mr. Gallegly a couple of weeks ago, asking him to support the "Creating Hope Act," which provides market incentives for pharmaceutical companies to develop new treatments for children with “rare” (I use that term loosely!) pediatric diseases such as cancer. Only ONE new pharmaceutical drug to treat ANY TYPE of pediatric cancer has been developed or approved by the Food & Drug Administration since the 1980's. This is because the pharmaceutical companies are reluctant to develop drugs for supposedly "rare" pediatric diseases such pediatric cancer because it requires investing in products that are unlikely to cover the high costs associated with their research, development, marketing and distribution. The Creating Hope Act will hopefully help facilitate more research and development of new pediatric drugs. You might remember that just before Ryan's transplant, his relapsed leukemia had become chemotherapy resistant, meaning it wasn't responding to any of the known drugs that are being used to treat it. Lucky for us, the combination of radiation treatment, super high dose chemo and the transplant worked and he is alive and healthy today. Many kids, too many kids (in my opinion, even ONE kid is way too many kids), aren't that lucky. They get to a point where the current treatments just don't work anymore. There are a limited amount of drugs available to treat them. That is just heartbreaking. Please put yourselves in their parents' shoes for a moment and I think you will find yourself in a desperate place, wishing that there were more drugs available out there to save kids' lives.
Anyhow, I had a great conversation with Ms. Daly (who is Mr. Gallegly's legislative counsel in DC) early this week, and today she sent me this email:
"Dear Ms. Compton,
Mr. Gallegly has agreed to cosponsor the Creating Hope Act. He wanted me to thank you for contacting him. He asked if you could keep him appraised of Ryan's progress.
Also, as we discussed, it would be helpful if you would forward any information you receive on legislation impacting pediatric cancer to me. My contact information is below.
Thank you."
I was ecstatic. Today, I also read the following Facebook post from an organization called "Kids V Cancer:" "We have 43 members of Congress signed on as Sponsors for the Creating Hope Act!!! Your emails are making a difference!!"
YAY!!! If you are an out of state family member or friend reading this and would like to email your Congressional Representative asking them to sponsor the Creating Hope Act, I would soooo appreciate it!!! I can help you with the wording if you'd like. Just email me. Here is a link to a webpage where you can look up and email your Representative: https://writerep.house.gov/writerep/welcome.shtml.
Please check out this video featuring Dennis Quaid as he clearly explains why the Creating Hope Act is so important:
I actually just wrote down a lot of what he said in the video and used it verbatim in my letter to Representative Gallegly (and even in this post). I will post that letter on this blog in case you are curious enough to want to read it and possibly copy some of it and send it to your Representative as well.
The next batch of good news came in the form of a phone call from a social worker that I've been trying to contact for a few weeks regarding Jasmine and Teresa. I recently learned that the Department of Children and Family Services has a special program called the Independent Living Program. Most of you already know, but for those of you that don't know, Teresa, Jasmine & Manuel are our nieces & nephew. We have had legal custody of them since 1998 and 1999. The ILP program provides a LOT of resources for foster and guardianship youth (ages 16-21), including life skills courses at a local community college focusing on education, skill development, career development/exploration/training, referral to available mentors, daily living skills (including financial management, budgeting, self advocacy, etc), financial resources workshops, and housing information; college/university and financial aid resources; help with high school graduation costs, education funds, clothing funds (work uniforms, interview clothing), and so much more! The reason why I'm posting so much info about this here is because I'd like to share this resource with others in case you know of foster/KinGap kids/families who can benefit from this program. Anyhow, today the social worker signed Teresa up for the program. Jasmine will be able to also sign up once she turns 16 next year. I'm so excited about all these resources that are available for them. I was also in foster homes when I was a teenager and back then, none of these services were available. It was pretty hard starting off on my own without much help or direction, so I am amazed and grateful that these services are now available for foster youth.
One more thing about my conversation with this kind social worker... I shared with him about Ryan's situation and found out that his sister is currently preparing for a life-saving bone marrow transplant--- at CITY OF HOPE also!! I was happy to share a bit about our experiences with Ryan and to offer him encouragement. I told him that his sister and their family were in good hands at City of Hope. One of their siblings was a match and will be donating the marrow. We also talked about how lucky Ryan was to be able to find a perfect match from an unrelated donor, given the fact that he is of mixed race (50% Mexican-American, the rest mixed European and a sprinkle of Native American), and about how we desperately need to educate others and recruit them for the National Marrow Donor Registry. There are so many misconceptions and fears about donating!! This prevents people from registering to potentially save a life, just like Ryan's donor did last year. I would donate marrow in a heartbeat if ever called upon to do so.
I'm know I've mentioned this before, but Jason and I both registered shortly after Ryan was diagnosed with leukemia in 2007. Sadly, before then, we didn't really know anything about the registry. Back then, we were under the impression that frontline treatment would cure Ryan and that he wouldn't need a transplant. We registered because we learned about the registry and the fact that we could potentially save a person's life as donors. We had also seen our son endure the first of many, many spinal taps and bone marrow biopsies, at the tender age of 22 months. We figured that if he could endure that like a champ, we could donate marrow for someone. Nowadays, most donors donate by a process called "peripheral blood stem cell donation" which doesn't involve surgery. Here is a little video from the Be the Match Foundation (National Marrow Donor Registry) regarding the donation process:
Speaking of which, Ryan's one year anniversary is coming up soon and we are really hoping that his donor will want to meet us. We can't wait to thank him in person!
Finally, the third batch of news came when Ryan's wish grantor, Alex, of the Make a Wish Foundation called me this afternoon. He told me that Football4Wishes, an organization which helps grant kids' (who have faced or are facing a life-threatening illness) wishes through the Make a Wish program, had decided to sponsor/grant Ryan's wish to visit Disneyworld next year!!!!!!! Football4Wishes is an organization founded by the wife of a SVPD detective who sadly lost her husband to cancer in 2007. Her husband, Gary Galloway, was a police officer and detective for 30 years and he investigated child abuse cases; he was also a child advocate. I immediately got chills/goosebumps (which persisted throughout the afternoon) as Alex told me all about this and about Gary Galloway, and I struggled to not cry once again because of the profound kindness of strangers, and the fact that Ryan's story has come full circle in such an incredible way. Since day one, our PD family has been there with us, supporting us, and throughout Ryan's ordeal they remained by our side. Now that the worst is behind Ryan, here they are again, at our side, this time rallying around him to help celebrate and make his wish come true. I cried when I told Jason the news and he is the one who said that Ryan's journey has come full circle.
...Football4Wishes hosts an annual event called the Gary Galloway Memorial Flag Football Game, in which the SVPD plays against Ventura County firefighters and they raise funds to grant a child's wish. This event is open to the public and it starts at 11 am, with police and fire vehicles and equipment demonstrations. The game starts at noon, and there will be a half time show. There's a bbq throughout the event, which ends at 2 pm. Here is the flyer for the event:
Additional information can be found on Facebook on the Gary Galloway Memorial Flag Football Game page and also the event page.
Ryan's wish has been at least two years in the planning. Initially we had hoped for him to be able to have his wish come true last year after he completed frontline treatment, but when he relapsed and began treatment again, it was difficult to fit in. I am really glad that we did not do an emergency "rush wish" for him last year when he was really sick. I can only imagine that it would have been stressful and bittersweet. We had hoped initially that his trip would be a celebration and now that he has completed relapse treatment and he is doing much better, that will come to fruition. We can't thank Football4Wishes, Alex, the Make a Wish Foundation (Tri Counties Chapter), the Simi Valley PD & Ventura County Fire Department enough for doing this for Ryan. It is simply difficult to express our gratitude in words, something that has happened to us more than once on this journey with Ryan.
I was about to wrap this post up, but I want to share one more thing. More good news, this time about our dear friend, Candace, whom we helped organize a bone marrow drive for last month: the doctors and medical staff at CHLA have found two umbilical cords from which they can use stem cells!!! These umbilical cords are a match for Candace! There is still now bone marrow donor for Candace on the registry, however, the umbilical cords will be able to provide her the life-saving stem cells that she desperately needs for her transplant. Her family and friends (including us, of course) are feeling extremely grateful and relieved for Candace!!
[Ryan and the girls, with Candace and our cousin, Rudy, last weekend, after dinner]
Okay, if you are still reading this, WOW! Thanks for hanging in there with me and thanks for stopping by. ♥
I know I haven't written in a long time, but I do have a bunch of half written posts that I will probably still publish sometime in the next few days because I want them all to be a part of our blog and family record.
It is late and so this is just a QUICK update.
Ryan and the girls are doing great. Ryan had his monthly follow up at COH yesterday and Dr. Pawlowska said that everything is looking good as his 1 year post-transplant anniversary approaches.!! His labs were all stable & he will be completely weaned off his anti-rejection medication at his next visit. He will also have his big 1 year anniversary exams which include an echocardiogram/EKG (heart funtions), neuropsych evaluation (for cognitive function), endocrine & pituitary tests (to check his growth), pulmonary (lungs), and vision screening (to make sure he doesn't have cataracts; a common side effect from radiation therapy) and possibly other exams as well. These tests are all significant because they will be checking the results against all the tests he had prior to transplant to see if there are any obvious side effects from all his treatments.
He will also start having all his immunizations again. From scratch. Like a newborn. He hasn't had any immunizations since he was one year old because once a child is diagnosed with cancer, all immunizations are halted. The bigs also have to catch up on immunizations because they were not allowed to have live virus chicken pox vaccinations while Ryan was on treatment/immune compromised. Since Ryan had a transplant, his immune system is completely new, so it's as if he's never had any vaccinations. He will literally start the series again like a newborn. This is a huge milestone because it signifies that his immune system is strong enough to handle the immunizations.
This next appointment won't happen for another SIX WEEKS!!! That is the longest that we have gone without a doctor's appointment in over 4.5 years!!!!!!!!!!
So many milestones this year for our family!!!! His transplant was TRULY a second chance at life for him & our family. ♥
Ryan has been enjoying kindergarten and today he got to bring home "Buttons, the Butterscotch Bunny"-- his class mascot. Each of the kids get a chance to take Buttons home for a week during the school year. We have to keep a daily journal of his activities with Buttons and also include pictures. He is really excited to have Buttons visiting us at home.
[Ryan kicking back at home in the family room with Buttons and a GOB of sunblock on his face. These two little dudes were watching tv together afterschool. We apply sunblock on Ryan at least 2x/day because he's super sensitive to the sun now, following the transplant process.]
[Buttons looks happy to be hanging out with Ryan!]
[Finally it's bedtime! Ry is getting ready to go to sleep with Bruce, Buttons and his Kitty Kat. Ryan & Buttons need to rest up for Ryan's big soccer game tomorrow!]
Well, that's it for now. I need to get to bed because Ry has a soccer game in the morning. I'm excited because it will be his second soccer game, ever, and the first time that Daddy gets to see him play in a game because he's been working weekends. I'm relieved and happy that he has a Saturday off to enjoy watching Ryan running around on the field in a soccer uniform with a bunch of other kids. It's a priceless experience. This kid has come such a long way in just a year. I am so ridiculously proud of him & deeply grateful for his health.
Thanks for stopping by...
we are san diego bound to spend some time with nick today. he is officially no longer a teenager!
♥ We love you, sweets!! ♥
So yesterday, Ryan's face collided into the base of our dining room table. Our extremely sturdy, heavy wood dining table. He had been running around the house, horsing around. I was mortified. I feared that he would spit out his teeth, or even worse, fragments of his skull, as we picked him up from the floor. Okay, so yes, I'm exaggerating... But he was bleeding a lot. Let me tell you what happened and explain why I was so paranoid... (By the way, today's post is mostly a recap from all of last night's frantic Facebook posts, for our non-FB friends/family and for our blog/family record.)
See, Ryan has been extremely fragile the past 4.5 years, during his treatment for leukemia. We got used to treating him like a delicate, precious egg (as I explained to a friend this morning). During his treatment he wasn't allowed to be so rambunctious and inherently, he also knew to be careful with himself. Now that he's better, his Hickman is gone and his blood & platelet counts are normal/near normal, we've relaxed A LOT, and we've let him more fully enjoy his boyhood and all the destruction that naturally comes with it. Yesterday was TERRIFYING because it's the first such accident he's had. Something like that just 6 months ago could have easily killed him. He could have bled to death, he could have died from an infection, etc... You get the picture. But today, Ryan is truly enjoying his second (or is it third or fourth or fifth?) chance at living life to it's fullest. Even with 15 stitches in his mouth.
After he fell, I shouted for Jason to come and help us. We grabbed a bunch of small towels, briefly looked at Ryan's mouth to try to assess the situation and jetted to the closest ER. When we arrived, they wanted to know what happened, and they were somewhat laid back, asking us to have a seat, until Jason told them that Ryan is a post-bone-marrow-transplant kid. Then they asked us a few more questions, said, "Hold on a second..." and took us right in.
The doctors and nurses were all wonderful even though I struggled considerably at first to not second guess everything. Four and a half years of leukemia and relapse have left me slightly jaded and extremely paranoid. Two ER doctors came in to look at Ryan's gash because the first one was concerned that it was so deep and large that they wouldn't be able to repair it. Ryan had apparently separated the inside of his upper lip from the top part of his gums and it was extensive. They agreed that Ryan's laceration was gonna require an oral and maxillofacial surgeon to repair it. Luckily by than the bleeding had tapered off almost completely. Thank you platelets. Thank you Ryan's amazing bone marrow donor! ♥
After conferring with Dr. Donohue who was the on-call peds onc at COH last night, it was decided that they'd call in a surgeon to come in and take a look at it and decide if he could fix it. Enter Dr. Bruckner, a really nice guy and a really fantastic oral surgeon...
He came in and was totally casual, sporting a moustache and chewing gum. He reminded me a bit of the Saturday Night Live Jeopardy sketch in which Norm McDonald played Burt Reynolds playing the part of Turd Ferguson, but without the big hat. (No offense meant! I was just trying to find things to laugh about through the tears last night.)
He took out a special contraption for his head with lights and magnifiers on it, looked at Ryan's mouth, and said that he was definitely going to need stitches. Jason had momentarily left to go home and pick up some sweaters and a couple of other things... Dr. B asked me to step outside of the room with him and took me down the hall. He explained that he had to repair Ryan's mouth and he could totally do it in that room, but that he needed me to step outside and not be in there while he was sewing him up. I was mortified!! After ALL that Ryan's been through, especially the last year, he's traumatized and I couldn't fanthom anyone stitching up that gaping tear with in my baby's mouth without putting him under i.v. sedation... I was all alone and I thought I was going to explode from all the fear and stress. I begged Dr. B to find an anesthesiologist and even contemplated leaving and driving Ryan to CHLA because I knew that COH probably wouldn't be able to accommodate his injury last night. Anyhow, I called Jason and asked him to drop everything and come right back, and then I decided to just trust Dr. B with my kid even though my stomach and my heart felt like they were both about to jump out through my mouth.
I went into the room and very calmly and matter of factly explained to Ryan that Dr. B was going to fix his mouth so that it wouldn't bleed anymore. I told him that the nurses wanted to show me something outside on their computer screen and that they wanted me to help them, so I had to go outside while Dr. B fixed his mouth for him. Ryan calmly replied, "Okay," and smiled. I told him I knew I how brave he is and that I was proud of him for being so brave. My little opportunist then asked me if we could go to Toys R Us or Target afterwards. I promised him we would.
I stepped out into the hallway and tried to prevent my body from exploding. Around 4 or 5 other healthcare professionals disappeared into the room with Dr. B and Ryan. Jason arrived. We heard a couple of screams and then nothing... Someone took in a metal tray for the surgical instruments. Dr. B came out and said that the worst part was over (the injections of local anesthesia) and that Ryan was doing a fantastic job. Ryan peered out and smiled at us. He was pointing at his mouth, trying to communicate that it was numb. Dr. B asked us again to wait outside in the waiting room. I told him that I was scared shitless and when he asked why we explained that Ryan has been under i.v. anesthesia at least 40 times for procedures and this would be the first procedure without sedation and I was scared for him. He reassured us that he would be fine and we finally stepped outside into the waiting room.
Much to our surprise, the stitches only took around 10 minutes. One of the nurses came out to call us back in and she raved the whole time about how incredibly brave and calm Ryan was during the procedure.
Inside the room, Ryan was smiling and he kept asking us *when* we were leaving to Target and/or Toys R Us.
Dr. B refused to tell us how many stitches he sewed into Ryan's mouth and I kept bugging the crap out of him. At first he said that he doesn't count stitches and asked me if I REALLY wanted to know, and then he still wouldn't tell. Finally he said that if I insisted on a number that perhaps somewhere "around" 15 would do. He asked us to schedule a follow up for Ryan in his office on Friday (done) and to keep brushing his teeth, and also have Ryan gargle with salt water twice a day to prevent infection. That is the biggest worry until it heals.
We left and drove to the nearest Target that was open til 11 pm. Ryan scored on yet another Lego set. We are close to being able to open up another Legoland location in our house. Ryan's lower face was totally swollen, his shirt had blood all over it and his lips and right nostril were caked in blood. Jason and I laughed because we were astounded that no one called DCFS on us while we were there. Our friend and fellow peds leukemia mom summed it up perfectly: "Trip to Target OR Toys R US- why not both? I don't know what we spend more money on, medical bills or trips to Target & Toys R Us on the way home from the hospital visits!" I think that only fellow peds cancer or serious peds illness parents can fully appreciate & understand the ridiculous truth behind that statement.
We grabbed dinner around midnight and fell asleep sometime after 1 am. Teresa was already asleep when we got home. She had bravely been holding down the fort while we were gone.
...I woke up this morning to the sound of small feet running around the house. I've already asked him a dozen times to stop running and he's already fallen once. He fell and got up and yelled: "I'm OKAY!" As some friends have suggested, it's probably time to buy some bubble wrap for him.
...So while he is okay except for a ridiculously & almost comically distorted & swollen face today (think: Homer Simpson), let me end this post by making make it clear why I was so frantic yesterday by sharing what I wrote to a friend a short time ago: "Yesterday was overwhelming with stress. I had just found out and was just reading online about a friend's little boy that is Ryan's age, who relapsed with neuroblastoma (another high risk peds cancer) for the second time, when Superboy's face collided with the dining room table. I was an emotional wreck to begin with, and normally when emergencies happen, I automatically shift gears without thinking, which enables me to cope effectively. But not yesterday. My emotions were all over the place and I FREAKED out. I thought Superboy was gonna get up and cough his teeth or skull out. Lucky for him, that didn't happen. ...Funny in retrospect that I was so terrified yesterday about a normal boyhood type of injury, yet, I handled transplant and his brushes with death last year flawlessly. I got used to treating him like a delicate egg that might break. Now that he's better, I need to be able to deal with these normal boyhood situations and accept & be grateful for the fact that he's able to handle them and experience them as terrifying as they might be."
Family & friends, thank you, for helping us to keep it together & even manage to smile through the tears last night via FB and texts.
...Please keep our very precious friends who are still battling the peds cancer monster & fighting for their lives in your thoughts and/or prayers (if you are so inclined). To our precious friends: Stay strong! We LOVE you! ♥ ...To cancer: another BIG F U !!!
Thanks for stopping by.
We have seriously been making up for lost time.
After swimming with Noah at his house last Wednesday, we went to the beach with him & his mom on Thursday. Jasmine and Teresa had surf camp and we cheered them on in addition to relaxing & playing on the beach. Ryan & Noah ran around like happy maniacs and also staged Wrestlemania on the sand.
It's been so long since Ryan was last able to wrestle or just be such a careless little boy without having to worry about getting sand in his tubies, ripping the catheter out of his chest by accident or getting some kind of infection. It was lovely to watch them run around playing on the sand and later in the water. It was also amazing to see Teresa and Jasmine out in the water learning how to surf. All these kids have been through so much. It's hard to put into words the feelings I get from watching them all reclaim their childhood.
You can see all of our Surf Camp pics here.
On Friday, we stayed home most of the day and late in the evening, we went to the YMCA for a nice long swim. Ryan must have climbed out of the big pool and jumped back in at least 30-40 times. Even the young lifeguard enjoyed watching him have so much fun. It was priceless. We swam a few "laps" together, mostly me encouraging him to race me to the wall and letting him win 90% of the time. When Jason got out of work, he joined us. I left them together while I swam laps for a while, then Ryan and I left to the dressing room to get ready to leave while Jason swam laps for a bit. We hadn't swam at the Y since before Ry's relapse last year. Jasmine & Teresa stayed home; Teresa didn't want to go swimming and Jasmine has been grounded for a while (despite being allowed to surf; it's slightly complicated).
Yesterday was Saturday and the girls and I went to our first yoga class together at the Y. It was their first yoga class ever. They did really well. It was also my first class in a long time. I want to try to go to one or two yoga classes with them each week. I think it's a good way to re-ground us after the especially tumultuous past year, and a good way for all of us to get/stay in shape. I also think it will help them with their balance if they choose to continue to surf. I started doing yoga when I was 16 and I remember learning how to breathe deeply, relax, do the shoulder stand (something I haven't been able to do in YEARS, lol!) and so much more. I remember how strong it made me feel at 16 and later in my 20's and 30's. It has helped me throughout my life. I hope it will do the same for them. I'm hoping to take Ryan to his first yoga class next week at Yoga House, along with Noah & his mom. I've been reading a book called "Sleepy Little Yoga" to him at night to gently introduce him to it. We go through the poses before he goes to bed. He thinks we're just having fun. At the end, he lies on his back and I tell him to pretend he is sleeping on a cloud like Yoga Baby. I know this book is for really little kids, but he likes it. It's perfect for him right now. Going to an actual lesson at Yoga House is the next step up. I would love to get to the point where we could just do our own yoga sessions at home (Ryan, Teresa, Jasmine & I). I hope to be able to accomplish that.
It's so cool to be able to do this stuff; to be able to just "be normal" and fall into a routine.
I ran errands the rest of the afternoon, until it was time to get ready for "Kids Against Cancer Night" at Irwindale Speedway.
It was our first time at a Nascar race and it was an interesting experience, especially the drag "boat races" at the end of the evening.
There was a celebrity race and an autograph signing session down on the track before the race, followed by racing, racing and more racing. Ryan had a BLAST! It was his first chance to sort of actually experience in real life one of his favorite movies, "Cars." It was fun watching his expressions and hearing what he had to say. He was a little overwhelmed by the crowd on the track before the race, so we went up to the grandstands, where he was much more comfortable and happy. We want thank Candace, Dana and Carlos for spending the evening with us & getting Nascar'd out with us, and we'd like to thank the Michael Hoefflin Foundation for generously inviting us as their guests. You can see all our Nascar pics here.
Today, hopefully our adventures continue with Mater. Stay tuned. We have to keep making up for lost time, especially before school starts at the end of next month.
I want to end by adding one more thing about my post last night... After I vented in the wee hours of the night/early morning, I read an article called "Lesson I have Learned Over Seven Years with Cancer," written by a strong and wise young woman named Jennifer Goodman Linn, who sadly lost her battle with cancer this week. Here is the excerpt that especially resonated with how I was feeling:
"People Have the Best of Intentions and Truly Want to Help and be Supportive.
Yes, there are people who fumble in trying to say the right thing, but on the whole, I have been overwhelmed by how fundamentally caring and supportive people are. Over the years, if I share my situation with them, I am seated in a more comfortable chair at dinner, the chef is brought to my table to review the specifics of my diet regimen and I am bombarded by good will.
People want so badly to help you as they all have friends who have suffered. We are all united in wanting to eradicate this disease. Don’t be so jaded and wrapped up your own situation that you fail to notice the angels that appear in all aspects of your life."
Last night, I was feeling pretty jaded and wrapped up in my own situation. This whole cancer journey is so confusing at times. There are so many emotions involved and sometimes so many twists and turns. Even when it's not you, but instead your kid that has cancer and even when he is doing better.
Here's an excerpt from another article I read earlier this week, called "When Treatment is Done" (it was about breast cancer, but I found it applicable to a variety of settings, including ours, and I took the liberty of changing a couple of words):
"During the long road of cancer treatment most survivors and caregivers count the days and treatments until the journey is over. When that day finally comes, many feel elated. What comes as a surprise for some is that they may also feel concerned, scared, confused, or a host of other unexpected feelings.
With the end of treatment many survivors are told they no longer need to come to the clinic weekly or even monthly. This can be frightening because the visits have become a sort of safety net. Some survivors and caregivers also find they play emotional “catch-up” once treatment is done. While getting through treatment they “shelved” all of the feelings, to just “get through.” When treatment is completed they begin to feel the feelings of everything they’ve been through over the last several months.
Below are some tips for getting through those first days and weeks after treatment ends:
I have been finding myself playing emotional catch-up for some time now. Sometimes I write posts and don't publish them/go live with them because they are so angry. They might start off happy & positive, but then they take a different turn and I get flustered & shelve them. I am and have been trying to re-establish myself in this world, post-transplant. I might sound like I was the one who went through treatment, instead of Ryan, and I don't mean for it to sound that way. I am speaking strictly from a caregiver's standpoint, specifically as the parent of a young child who went through what Ryan went through.
Anyhow, in addition to making up for lost time, I am still under major emotional construction. Please be patient with me, my friends. ♥ I'm also behind on email and phone calls, but I am working on catching up.
As always, thanks for stopping by.
Two hundred, forty-six days after Ryan's transplant, and nearly a year since his last swim, he was finally able to jump into a pool & swim again. He had his Hickman Catheter removed 10 days ago, making this the first time in 4.5 years that he doesn't have any kind of central line implanted in him for long-term i.v. access. He had to wait 10 days post-surgery for his small surgical wound to heal. We are so happy to for him!! He was so excited and enjoyed every minute. Thanks to Monica, John and Noah for the mini party.
Here is a video:
Thanks for stopping by. ♥
Okay, I'm not even going to try to pretend or fool myself into thinking that I can catch up on everything that's been happening since my last post because it's been so long and so much has been happening. I will say though, that the vast majority of it is positive! [I do have another post that I worked on a few weeks ago, but I didn't finish it or publish it. It was quite long and I still might publish it; retroactively, so to speak, just to have it on the blog as a matter of record for our family.]
Ryan is doing GREAT!!!! He continues to get stronger and stronger every day, and his smile, his energy, his sheer beauty amaze me. ♥ We have super exciting news to share: his Hickman catheter will be surgically removed this coming Monday (TOMORROW: July 11th)!!! It will be nearly one year to the exact day that he was diagnosed with relapsed high risk leukemia (relapse dx = 7/13/10). It will also be nearly 4.5 years after his initial diagnosis. Ryan has had some sort of permanent venous access device (AKA "central venous catheter") implanted in him for the past 4.5 years. He had his Port-A-Cath implanted near his right shoulder on 3/5/07, two days after he was initially diagnosed and it stayed in him until sometime last fall. He had it removed and had his Hickman implanted right before his transplant last year. Both devices have catheters that are tunnelled into one of his main arteries in his chest in order to better deliver medicine, transfusions, etc., and also to take blood samples for lab analysis.
Diagram of Port-A-Cath:
Diagram of Hickman:
He needed the Hickman for the transplant because they needed more than one line in order to be able to deliver chemotherapy and/or other meds and/or blood transfusions and/or nutrition intravenously at the same time. The Port-A-Cath just wasn't sufficient with just one line. The Port-A-Cath, however, was much more convenient than the Hickman because it was under his skin and he was able to swim and bathe with it in him. In contrast, the Hickman has been a pain in the ass because the tubes basically come out of his chest and need specialized care to prevent infection. He actually had an infection back in April, when he was hospitalized for 2 weeks and required a blood transfusion. It was a staph infection in his blood and it was mostly likely caused by germs in the Hickman. Anyhow, with the Hickman in place, Ryan basically can't swim, take a bath or be immersed in water in any way. He can shower (after we place his tubes in a baggie and carefully tape them to shield them from water) or take baths with just a very shallow amount of water in the tub. His dressing also has to be changed once per week and that's about how often he's been able to bathe. ...A six year old boy needs to be able to bathe more often in the midst of summer, especially if he is an active little boy like Ryan. So now that the Hickman is coming out, Ryan will be able to take baths with lots of water in the tub, and he will be able to do so everyday if necessary, and he will also be able to go swimming in a pool and to play carelessly in the sand at the beach and in the ocean. We are so ridiculously overjoyed about this!!! Once his Hickman comes out, it will take around a couple of weeks for the small incision to completely heal before he can dunk himself in water again. Personally, I think he's going to turn into a fish once the incision heals.
Here are some pictures that we took the other night, when Ryan took a bath and we changed the caps on his tubes, changed the bandage, cleaned the incision site, changed his biopatch, and flushed his tubes for hopefully (KNOCKING ON WOOD!!!) the last time ever!
[Above left: Ryan & his Hickman line. Hopefully getting the bandage changed for the last time ever. The scar above his right breast is from where his Port-A-Cath used to be implanted. Above right: Ryan and his shark, Bruce, checking out their tubies.]
[Above: Ryan & his shark, Bruce, showing their pearly whites & their Hickman catheter "tubies."]
[Above: Ryan's bandage, caps and biopatch are changed following his bath. Now it's time for Daddy to flush his tubes with Heparin and saline solution. Ryan is watching Phineas and Ferb in order to remain patient and somewhat distracted during the whole process. The trophies in the background are from his sweet friends, Makayla and Dillon, who won them (they are both BMX racing champions) and gave them to Ryan. Dillon told Ryan that they won the trophies just for him! Ryan is very proud of the trophies.]
So yeah, we're moving onward. Upward and onward after last year's descent into hell. We are super grateful and happy for Ryan's health, that we are able to really enjoy life and the company of our dear friends and family once again without all the stringent rules and restrictions that were imposed on us last year and the past few years.
I can hardly wait til those tubes are out of him and his incision heals. We have lots of swimming to do!!!!
Thanks for stopping by...
For the past two years, my right shoulder really ached. I called it my torn rotator cuff. It ached from throwing thousands of footballs to my 14 year old son, Alex John, AJ. Trying to lead him just right on deep post patterns, to keep up with his speed. And, after the last one every time (he’d only let it end after he made a spectacular catch) from catching the big lug as he ran and jumped into my arms, yelling "The Bills win the Super Bowl, the Bills win the Super Bowl!" Just us dreaming. It ached from trying to pitch as fast as I could so he wouldn't hit me, but he always did. It honestly hurt enough so I only slept on my left side and if I rolled over on it, it would wake me in the night. But I didn't care, how could I stop doing those things? I loved it.
My new problem is that over the past month or so, my shoulder has slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer.
I’ve no idea if you’ve even been on a pediatric cancer floor. Ever walked the halls and seen the smiles or tears on the faces of the little kids as they play on their big wheels. The tiny little masks they wear to ward off infections. How the moms and dads race behind with the ever present IV pole. How the teens hang together and still try to be cool; even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their texting; instead of sweet and LOL. How the babies cry; unable to say what hurts. Or, if you've seen a mom, dad or sibling alone in the break room at 3 am; with their head in their hands, feeling alone, helpless, scared and mad.
I've seen it all and more. In December 2007 AJ had to ask me, "Dad, what's hospice?"
I’ve seen enough.
I want a cure for the elephant in the room: Childhood Cancer.
I will never forget the days/months in the hospital. The feelings of powerlessness, out-of-controlness. Not that I didn’t advocate, research, support, fight for, scream. But inside, sometimes it seemed my primary function every day was to not only do the stuff to support AJ; but, at the time, to me, importantly, NOT step on the medium green colored tiles on my trips back and forth to the break room for ice, snacks, whatever. THAT to me was the only thing that I could truly control about all the things going on. And it was my goal to NEVER EVER step on one, and then everything would be OK. Sounds ridiculous doesn’t it? But I bet the nurses knew what I was doing after awhile; had seen someone like me before, weaving back and forth walking down the hall, looking down balancing plates and spilling 2 cups of coffee. When you are fighting this war as a parent, it is hard to do much more that truly affects the reality, the journey, or the outcome.
But you learn.
You learn there is a huge lack of awareness that childhood cancer even exists. That is results in an overall lack of funding for a myriad of issues associated with childhood cancer. You learn that the paradigm for childhood cancer is that it is “rare”.
You learn that our kids have about a 1 in 300 chance of being diagnosed with cancer before age 20. That cancer is the #1 killer disease of our kids before age 20; killing more kids every year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. That the 75% survival rate has not improved significantly in nearly two decades, and that you can count the number of newly approved treatments on one hand. That each day 40,000 children undergo treatment as they struggle to beat this lying, cheating disease. That pediatric cancers are different than adults cancers and require specialized treatments. That more focus is needed on childhood cancer survivors as they transition from pediatric to young adult care and are faced with a 60% chance of developing secondary cancers, major organ damage, developmental problems and/or infertility from the “cure”.
Now, I’ve lost my Mom and Dad to cancer. They both led good long lives. Still, very sad. Yet it cannot compare to the pain of losing AJ. It’s overwhelmed as a spark is by a nuclear explosion. So, when I see the amount of research money for adult cancers, I ask myself: If I was the captain of this sinking ship known as cancer, with men, women and children on board, what would my orders be? Say what you will, but my answer is this: We get the women and children to safety. And further, as any of the 2,500 to 3,000 grieving Mom’s every year would tell you: Take my seat! Save my CHILD!
But what’s the reality? Well, Federal and private funding for pediatric/young adult cancer research and survivorship is woefully inadequate. Breast and prostate cancer (remember the passengers?) receive orders of magnitude more than funding than childhood cancer when calculated per person years life lost. In 2007 the NCI budget was $4.8 billion, with $0.17 billion directed to childhood cancers. And, explain this one to YOUR child, drug companies don’t find research into such a “rare” disease profitable.
In this case, “rare” is defined as 10 to 15,000 kids diagnosed every year. That’s two classrooms of children every school day, with one-half of one classroom ultimately dying from cancer. No warning signs, no unhealthy lifestyles.
It’s “rare” only if it’s not happening to your child.
But it’s tough for parents in the fight to do much advocacy work. Those with children in treatment advocate every day for the health of their child. Those who’ve lost a child may be overwhelmed with grief, and frankly have a hard time just making it through the day. Those with survivors may simply want to escape from the childhood cancer world. All understandable. And those darn kids? Well they just can’t vote, write checks or pick up the phone to call Congress.
Yet apparently our advocacy is needed: “The solution to securing investment includes enlisting friends and ...”. Just asking - did ‘they’ throw the responsibility for your cancer research funding back at you and your friends and family?
So, we try. In August 2008 with my incredible co-founder Lori Keith, a childhood cancer survivor herself, we created People Against Childhood Cancer (PAC2). We researched reports; like those by SU2C’s scientific partner – the American Association for Cancer Research. We spoke to childhood cancer organizations like CureSearch, St. Baldricks, Alex’s Lemonade Stand Foundation, Rally Foundation, and Hope Street Kids, along with doctors, kids and parents.
We knew these organizations and people would be louder and stronger if they spoke as “One Voice United Against Childhood Cancer”. It became our motto. And we created PAC2; a free, grass-roots, on-line social network for the childhood cancer community, to share news, debate, support and knowledge. We focus on raising awareness and uniting with the 80 childhood cancer organizations we proudly count as members.
In January 2009 PAC2 mobilized to ask for increased funding for childhood cancer from President Obama through his Transition Team’s process to rank issues important to the American People. With over 125,000 questions submitted and 1.4 million votes cast, our question finished #5 in Health Care concerns, and was presented to President Obama in the Citizen’s Briefing Book. (no, we haven’t heard back…yet)
So, the volume is increasing and, after one unbelievable year, it’s lead us here. To unite with SU2C to raise awareness of childhood cancer and to fight for a cure.
September is National Childhood Cancer Awareness Month and September 12th is National Childhood Cancer Awareness Day. Throughout this month, SU2C will be hosting stories of amazing children and people all fighting childhood cancer. Let these stories inspire YOU to ACTION. Unfortunately or fortunately, our childhood cancer community is...yeah, rare, and we need all the help we can get.
Help to make sure that every Dad’s arm aches forever; not his heart. That Mom’s worry about her kid’s mischief; not if kidney damage from treatment will postpone the next round of chemo. For the kids, for your kid….help change the paradigm.
· Donate time and money generously to SU2C.
· Participate in fundraising events by CureSearch, Alex’s Lemonade Stands, St. Baldricks, The Rally Foundation and others throughout the year.
· Join the CureSearch Advocacy Network and contact your legislators to support full funding of the Carolyn Price Walker Conquer Childhood Cancer Act.
· Join PAC2 and the fight against childhood cancer.
Thank you SU2C and thank you for listening.
And acting. Because someday, God forbid, you may say…..damn it, it isn’t so “rare”.
AJs Dad
Bob Piniewski is a Project Coordinator, ironically cleaning up Superfund sites and saving bugs and people from risk; i.e. cancer causing agents. As PAC2 co-founder, he helped the childhood cancer community collaborate with SU2C to highlight childhood cancer. He lives a New Normal. He dedicates this to AJ, his “favorite” son and best friend forever….
Please click on this link to learn the REVOLTING TRUTH about how pathetically & severely underfunded pediatric cancer research really is... Our family regularly supports some of these other cancer research organizations (in addition to strictly pediatric charities such as St. Baldrick's, Camp Ronald McDonald & a couple of others), but it really disturbs me to know that while some of these other major charities routinely use pediatric cancer patients in their campaign ads, in reality, they are donating LESS THAN 1% of their total donations to pediatric cancer. How can that be?
I'm not naive. I've known for a long time how underfunded pediatric cancer research is. That's why we are so passionate about being involved with all the St. Baldrick's, Camp Ronald McDonald Walk for Kids, and Michael Hoefflin Foundation fundraisers in spring, regardless of how good or bad Ryan is doing. We are passionate about it even if it means that every spring we feel a bit overwhelmed and completely compelled to schedule our social life (if we are able to have one that year) around these events. They are so incredibly vital and important to us, because WE KNOW how underfunded pediatric cancer research is, and WE KNOW firsthand the ugly realities associated with pediatric cancer because of our own experiences and the experiences of close friends and family.
The National Cancer Institute is not any better at allocating funds towards pediatric cancer research than some of these charities. The NCI only allots ~4% of it's funding towards all pediatric cancers, in stark contrast to the 96% that it allocates towards adult cancers. Here's a concrete example: federal funding for prostate cancer, which has a 99% five year survival rate, is given nearly FIVE TIMES the amount given to ALL TYPES of childhood cancer.
Yeah, I know that pediatric cancer is a relatively "rare" disease, but every year, approximately 13,500 kids are diagnosed with cancer in the U. S. alone; 35,000 kids in the U. S. are currently in treatment at any given time; and 25% of all kids who are diagnosed with cancer will not survive their illness. One in every 330 children develop cancer before the age of 19, and pediatric cancers are the #1 disease killer of children-- more than asthma, cystic fibrosis, diabetes and pediatric AIDS combined. I hope these "statistics" underscore the importance of pediatric cancer research. The stark reality is that so little is allocated towards "those we treasure most."
dkfajflda
