[straightouttacompton]

camp ronald mcdonald for good times: camp walk 2011!!

With St. Baldrick's, the MHF Walk, several birthday parties and other functions behind us, it's time for a quick rest/hiatus this weekend. We finally have no plans ('cept J is working), and get to stay home for a change and clean up a bit. I'm looking forward to that (not the cleaning part, though).

The following weekend, on Sunday, April 10th, is the annual Camp Ronald McDonald Camp Walk for Kids which I mentioned a couple of posts ago. This walk/fundraiser supports Camp Ronald McDonald for Good Times, which is a year round, medically-supported, cost-free camp for kids with cancer and their siblings. Camp helps helps attendees regain their self-esteem and take a break from illness. They average 1,900 campers a year. Camp also provides family camp for children who are under the age of 9, and their families. 

We want to help Camp to remain cost-free for these families who have all been financially inundated by cancer treatment and recovery costs, and so we have once again assembled Team Ryan & Bodie (Team RyBo for short), and we are asking friends and family to help us support Camp. You can do so by clicking on this link.

Thanks to help from family & friends, we have already started raising funds by having a rummage sale several weeks ago. As a result, we have been/are able to donate $200 to Camp, as well as to other favorite pediatric cancer charities, such as St. Baldrick's.

Camp is soooo ridiculously amazing, it's hard to put into words how wonderful it is!! At camp, the kids (and parents during family camp) have the opportunity to escape the day to day reality of still being in treatment, and get to let loose and have fun and be with others who understand what they have gone through. The camp counselors & directors are all phenomenal!! 

When your kid has cancer, an experience/resource like camp is INVALUABLE. The ability to be able to escape the day to day reality of being a cancer patient or sibling or parent in an indescribable blessing! The ability to meet others in your situation who understand you is also priceless. We have formed strong and lasting friendships with several families that we have met at camp, and again, they have become like family to us. When Ryan was in the hospital, having them to cheer us on, pick us up when we were at our lowest points and let us vent the way only one cancer family can vent to another was precious and integral to our recovery process.

I know that St. Baldrick's just passed and we also asked for help then, but if you want to help and especially if you haven't had a chance to help, it would be greatly appreciated!! 

I'd like to share a video about camp, made by one of the counselors. Keep in mind, these are all kids like Ryan and their siblings, just like Teresa & Jasmine. Kids who have been through by far, way tooooo much in their lifetimes, and camp gives them a chance to enjoy their childhood and restores their self esteem and sense of joy and innocence. 

You can actually see Teresa & Jasmine as well as Bodie's sister, Autumn, and our friend, William, in this video. 

If you'd like to join us at the walk, you are also welcome to do that as well. It's a really fun time! Click here to sign up for Team RyBo. We will be at the event at Exposition Park. Please contact me via email if you have any additional questions.

Thanks so much for your support and for stopping by. ♥

 

cats can't talk

The Ryanator is doing well and so are the rest of us peeps. Our days have been filled with school evaluations, homeschool, speech therapy and regular doctor's appointments, and also BIRTHDAY PARTIES and other social functions on the weekends! It's so nice to be able to finally take the little guy out and to do something as simple as eat in a restaurant or to let him have a piece of cake at a party!!!! The past two months have been a season of firsts for us all over again, much the first year of a baby's life. I remember the first time he was able to go out in public without a mask, first time he was able to eat at a restaurant, first time he was able to read a sight word, first time he played outside again with all the neighborhood kids, and so forth. A truly joyful season of firsts!!!

Unfortunately, this season of firsts has also been punctuated by moments of regression (and aggression, lol). For example, the past few weeks Ryan seems to be reliving his terrible twos and threes, despite being shy of turning six in one month. He's been having tantrums and testing quite a bit. I think it's his way of reestablishing himself in the world after so much time in the hospital without a say-so about the treatment he had to endure. This is all normal for a child his age who has gone through what he's been through.

His school assessments are complete and we had his triennial I.E.P. meeting yesterday at our house (because Ryan is still technically immune compromised and he shouldn't be near a school full of kids). The results were pretty commensurate with the eval that was performed at City of Hope just before he had his radiation therapy, final high dose chemo and transplant. He is functioning primarily in the 36 to 48 month range, instead of 60 months, due to developmental delays that are a result of his treatment and social isolation. They are not sure how much of it is a cognitive side effect from chemotherapy, how much is due to his lack of socialization and ability to develop at a normal pace, and how much is from not being able to get a better reading from the tests due to his inability to focus. His inability to focus has become increasingly apparent the past few weeks, and it is a common side effect from chemotherapy. Getting him to focus & stay focused is sometimes very challenging.

The assessment results/recommendations that we agreed on are to place him in a regular full-day (8 am - 1 pm) kindergarten this fall, with a special one-on-one aide that he will share with one other child. The one-on-one aides are generally used for autistic kids, and while Ryan is not autistic, he qualifies for the aide and we think she/he will be instrumental in helping him to stay focused and to keep up with the rest of the kids in his class this fall. We also think its a good transition for him to be able to go from one-on-one teaching with Teacher Maryl at home to being in a regular classroom. Hopefully by first grade he will be able to be in a classroom setting without a one-on-one aide.

The other options we were presented with were to place him in a special day class with other kids that may have more severe disabilities or to place him in a regular kindergarten class and allow him 30 minutes a day with a resource specialist teacher and a couple of other kids. Both of these options are at opposite sides of the spectrum and we felt he would be best off in the middle with the one-on-one aide. I think its important for him to be around kids his age so that he could start modeling after them. He's been isolated so much and I think that being around other kids will help quite a bit. 

Ryan also continues to qualify for speech therapy (120 min/month) and he also qualifies for occupational therapy (120 min/month). The occupational therapist will help him develop his fine motor skills. We'll also be meeting with a resource specialist for 30 minutes per month to make sure that he is making progress and reaching the goals we established for him in a timely manner.

He will have summer school this summer, and I need to make arrangements for it to happen at home. I need a note from his doctor which establishes medical necessity. Another major reason to keep him at home for school this summer is because if he goes to a regular kindergarten class, he won't have a one-on-one aide this summer, and the curriculum will be designed for kids that are finished with kindergarten and headed off to first grade. This won't work for him because we are keeping him in kindergarten a second year so he can be better prepared for what lies ahead and also so he can have the full kindergarten experience.

As far as medical progress is concerned, he is doing well!! He had an appointment at COH last Thursday and Dr. Pawlowska started weaning him off of his anti-rejection medication. That is another first! He has also been scheduled to return every two weeks for follow-up instead of every week (yet another first). These are signs of good progress with his recovery. 

That's it for today's update. The reason why this post is called "cats can't talk" is because this morning I was talking with my cat, Smokey, and when Ryan got gist of the conversation he came into my room and butted in  & said, "Cats can't talk, Mommy." lol! Duh! He cracks me up. BTW, smartypants, dogs can't talk either!

Thanks for stopping by.

hot liquid magma!

Okay, I can't resist sharing this on the blog because it really tickled me to read it... A good friend posted this on my FB wall the other day:

"seduction occurs where two titanic plates collide.
Seduction creates STUFF! ! ! 
MAgmA! - Colliding Plates, Creases in the ocean floor!
Lol - History Channel! I'm a learning.... but, not retaining.. Go Geologist!"

I wrote back:

"BAHAHAHAHAHA! It's called SUBDUCTION!!! Seduction is a different subject (biology), but it also creates stuff, hahahahahaha!! LOVE YOU!!!" 

and agreed that she deserved an A++++ for effort. 

Hope it brings a smile to your face and makes you laugh as much as it made me laugh. 

this really resonates with me...

I found this on the blog of another veteran cancer momma. She also wrote this beautiful piece about her son Ezra, who has been battling leukemia for a few years now. She wrote about his super hero powers. Ryan has them as well. He has super healing powers, not only to heal himself, but also to heal his mom + dad + others in his life.

I love Mary Oliver's sayings. I'm not familiar with all of her writings, but another one of my favorite quotes from her is: 

Tell me, what is it you plan to do

With your one wild and precious life?

The quote at the top of this post, though, it means so many different things to me. It symbolizes how I feel right now, and how our whole family feels, post-transplant, with four years of leukemia crap under our belts. We're ready! Ready to think about noble and dangerous things! When I think of danger, I think of adventure. Things that were too dangerous to do while Ryan was fighting & recovering. We'll take light and frolicsome over how things were last fall ANYDAY! Beautiful, I equate with healthy. Ready to be healthy and not frightenly ill anymore. AFRAID OF NOTHING. I can only wish I could be that way again. I don't think I'll ever not be afraid of the c word again. But like I wrote last post, I'll work diligently to not let that worry seep in and permeate everything and "push out the ability to enjoy" our presence on this earth together. ♥

 

still off & running (a.k.a. "the never-ending post")

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.

 

2011 LAFD/LAPD St. Baldrick's Event (North Hollywood Venue)

Tomorrow!!! Come join us at this amazing event for the head-shaving, blood drive, bone marrow registration, free IHOP breakfast & Starbucks coffee, entertainment for the kids, silent auction & raffle, tunes by JACK FM 93.1, and Slammin' Sliders Gourmet Food Truck--and of course fire and police apparatus on display! ALL IN THE NAME OF CURING CHILDHOOD CANCER!

 

If you can't make it to the event and if you haven't donated yet to help CURE CHILDHOOD CANCER it's not too late. If you'd like to help raise crucial funds for pediatric cancer research, please click on the link to make a tax deductible donation: http://www.stbaldricks.org/teams/teamryan. Special thanks to family and friends who have generously donated and supported this cause!!!

Hope to see many of you there tomorrow. This is an insanely fun and meaningful event, in case you don't know about it. People gather together and shave their heads and volunteer to raise money for pediatric cancer research. The St. Baldrick's Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. St. Baldrick's funds more in childhood cancer research grants than any organization except the U.S. government.

This is our fifth year participating in this event. It's soooo much fun and for a great cause. Please come on out if you can!! 

crickets chirping at lightning speed & ♪♫ Chili's baby back ribs ♪♫ for leukemia research

Life continues to move forward at lightning speed right now. So much going on with all of the cancer fundraising events that we volunteer for during spring. Exciting stuff!! A little exhausting, but for an awesome cause!!!! 

The press conference the other day went well. The whole process was interesting to watch, and it was super nice to be able to meet some of the members of Team LAPD and the other honorary teammates. It was great getting to see the new LAPD Headquarters. I love the fact that the LAPD took time to publicly highlight two important upcoming events: Team LAPD's endeavor to raise $35,000 for blood cancer research via Team in Training and the Leukemia & Lymphoma Society, and the 2011 LAFD/LAPD St. Baldrick's Foundation Event. What I do not like is that despite the fact that there were four extremely brave little kids (3 who have been fighting leukemia and 1 who donated marrow to save her brother's life) standing there before the press for what may have been an hour, after Commander Villegas spoke about Team LAPD and the honored teammates, he asked if the press had any questions and all you could hear was SILENCE. Crickets chirping perhaps. Then, at the end of the conference when Chief Beck asked if the press had any additional questions, the first and only thing that the reporters cared to ask about was RODNEY KING. Okay, yes, it was the 20th anniversary of the infamous incident and I'm not trying to downplay it, but let's not gloss over the fact that Rodney King isn't exactly some kind of upstanding hero or citizen. He has a LOOOOOONG arrest record that started long before the "infamous incident" and that has continued since. As a matter of fact, he was arrested the night before the 20th anniversary for running another red light and driving without a license. When he was stopped, he was with his girlfriend, who happened to be one of the JURORS on his trial. This guy has been stopped & arrested for myriads of bad things, such as: (before "the incident") beating his wife , robbery, battery and assault with a deadly weapon; (after "the incident") hitting his wife with his car, running red lights, DUI's, slamming his car into a house while failing to yield to police officers while he was drunk, engaging in sex with a prostitute in an alley while he was still married, beating his wife some more, injuring one of his kids & her mother and vandalizing their property, indecent exposure and being under the influence of hard drugs. ...And the reporters were ONLY interested in reporting about Rodney King. Really? I checked the news online that evening and could not find O N E thing about Team LAPD, Team LAPD's honorary teammates (the kids), or the LAFD/LAPD St. Baldrick's Event. Really, reporters? That makes me sick. All they want to report about and focus on is negative shit. ALLLLL the time. Just like when I contacted a certain reporter at the Daily News a few years ago to ask him to write a story about everything that the LAPD and our community has done to support us while Ryan has been battling cancer. He asked me to email him the details and I sent several pages worth, and I did not even get the courtesy of a reply.

In any case, I would like to share and invite you all (in So. Cal.) to a special dinner event that is happening next Wednesday, March 9, 2011, from 4 pm until 10 pm: it is Team LAPD for Leukemia & Lymphoma Society Night at ALL Chili's restaurants located in Orange, Los Angeles, San Bernardino and Riverside Counties. It is also valid at the Chili's restaurant in Simi Valley.

You must take a copy of the flyer (pictured below) and Chili's will donate 15% of your total bill. Please support leukemia, lymphoma and myeloma research by taking the night off from cooking and eating at your local Chili's restaurant. 

Ryan had fun at the press conference until he started to crash & burn. Our kid is just NOT a morning person, especially since relapse & transplant. He likes to sleep in until 10 or 10:30 am; sometimes later. Half way through the conference, he started tuning out and getting aggravated. He was ready to go home. The whole thing was a bit too much for him. He's not a social butterfly. Plus, his transplant and all the extended hospitalizations are still quite recent and he's just starting to reintegrate and catch up on his socialization skills again. It was fun, though, and we thank Team LAPD, Sgt. Grasso and Chief Beck for inviting us and for being really kind hosts. Thank you Team LAPD for the generous (ginormous is more like it!) gift baskets that you gave to Ryan and the other honored teammates, and thank you Chief Beck for Ryan's gift bag. Ryan really loved everything and has been running around the house with his toys and begging us to bathe him so he can play with the gigantic toy ship in the tub.

...Okay, so today I noticed that I lost a couple of "Facebook fans" according to the little "Become a Fan" thingie on my sidebar. I wonder if it was because I was in a really funky mood the eve before Ryan's four year anniversary and I let it all hang out in all it's glory? I was a total cranky-pants downer for a change, instead of my usual upbeat, optimistic self. I let it all hang out on a public blog for a couple of reasons: 1) I write this blog for myself and my family, so that we have a record of all that we have gone through, lest we ever forget, and it comes in handy when I forget when certain treatments and other things occurred; 2) I write it to honestly update family & friends; 3) I try to be true in the event that other pediatric cancer families ever stumble upon our blog because I hope that my rants will reassure them that they are not alone when they feel like they are losing their mind or like no one else understands them, and 4) I want non-pediatric cancer families to be able to get a realistic glimpse of what it's like to be a pediatric cancer family because I want people to be angry enough to band together & try to find a cure for it. ASAP. So I can't really say that I'm completely sorry that I had a pity party the other night and may have driven some people away. I wasn't being a drama queen, I was just being honest with my feelings. C'est la vie, right?

Before I sign off for the night, I just want to mention that this weekend is a big GIRL SCOUT COOKIE WEEKEND, and I'd like to put in a plug for the cookies because everyone of those cookies "has a mission: TO HELP GIRLS DO GREAT THINGS." Please click here to find out where your local Girl Scout troop will be and go out and help girls do great things while treating yourself or a loved one to some yummy cookies.

Have a fabulous weekend, everyone! Thanks for stopping by.

sleep is good

Holy crap! I did not realize how hard the prospect of four years would hit me, until I woke up this morning and thought about everything with fresh eyes. It came in the middle of the night when I was finally quiet & still and it snuck out of the dark and hit me like a Mack truck. All I can say is thank goodness for sleep! lol...

A good friend and fellow cancer mom shared with me this morning that they are approaching their fifth anniversary of diagnosis this month and she said that the past five years have been both the best and worst years of their lives. I can SOOO relate! 

Anyhow, I told you that I just needed to vent/rant. Feeling so much better this morning, sitting here with my cup of CAFFEINE! Time to get ready.

Have a great day everyone!

FOUR YEARS (part of the apparent on-going theme of our life in numbers...)

As the clock strikes midnight, the fact that Ryan was diagnosed with leukemia exactly four years ago today does not escape me. FOUR years ago, we heard those horrible words, "he might have leukemia..." "Yes, he has leukemia. I'm sorry..." FOUR years ago, we were reassured that he had the "good kind of leukemia," the "good type of pediatric cancer." What a bunch of fuckin' HORSESHIT. There is NO good type of leukemia or cancer. ...Especially for a 22 month old baby. ...FOUR years ago, we were told that he had an 85% cure rate, and that he was standard risk, but on the high side, due to his slow early response to treatment. We were told that he would be treated on an augmented, or more aggressive protocol to close the gap and keep his cure rate at 85%. Little did we know then that he was MISDIAGNOSED, and that his leukemia was actually a much more aggressive type, placing him in the high risk category. So we embarked on a three year, four month treatment plan of consecutive chemotherapy. We thought it would cure him. We had faith in the doctors and in the treatment. We didn't realize then that those three years and four months were a cake walk compared to what would begin ten days after he completed treatment and was diagnosed with relapsed, HIGH RISK leukemia. A whole new type of hell. RELAPSE. 

He had to endure much more brutal regiments of chemotherapy, which kept him in the hospital for weeks at a time and almost killed him. A week before his bone marrow transplant we were told that the high dose chemotherapy had not completely worked.... They had found a small patch of leukemia that contained 20 - 30% leukemia cells in his marrow. The other side of his back was completely clean. They told us that they weren't sure that his leukemia would ever completely respond to chemotherapy, and that he might not survive further rounds of aggressive chemo. They were stunned that the high dose chemo had not cleaned his marrow and killed all the leukemia. They recommended proceeding with transplant but warned that he would be at high risk for relapse due to the fact that he was not completely in remission. We were also warned that the radiation and chemo would also put him at higher risk for secondary cancers. However, they felt this was his only option for a cure. Perhaps the high dose total body irradiation and final super high dose of chemo would do the trick, along with his donor's marrow and the new immune system he would have. ...We agreed and proceeded with the treatment. He endured a lifetime maximum dose of radiation therapy in just four days. For four days, he was placed under i.v. anesthesia twice a day while the COH Radiology Team worked hard to destroy any remaining leukemia cells in his little body. On the fifth day, he received another staggering dose of chemotherapy. Four days later, he received new life in the form of his donor's marrow.

Thirty days after his transplant, his bone marrow results were completely clean and free of leukemia.

We REJOICED!! Cautiously, but we rejoiced anyways.

EVERYday is a blessing for us, even the shitty days.

Everyday that he is here and smiling and happy and that our family is together, it is a blessing. A true blessing, even for a family of agnostics.

The other week, at his last appointment, I told Dr. Pawlowska that we were ecstatic about his progress and recovery, but still... She finished my sentence because I couldn't find the words--- we "live in a constant state of waiting for a bomb of bad news to explode." I hope it never happens. But that is the reality that cancer moms & dads & kids live with. LIKE IT OR NOT. THAT IS THE REALITY. I am a glass half FULL type of gal. I am usually upbeat, and I always, always try making lemonade when I'm dealt lemons. But truly, that is the reality that pediatric cancer families are faced with. Especially the ones with either high risk or relapsed kids. I try not to dwell on it. I push it away constantly. But it is always there. Lurking in the dark corner, or in the closet I try to lock it away in. I try to live life to its fullest and also to live in the moment. I am pretty successful considering the circumstances. But I am not perfect. I remind myself almost daily that anything can happen to any of us anytime, any day.  That is how I rationalize and make sense of a senseless situation. Perhaps it is better to live that way, appreciative for everything and for the simple things in life... But it never takes away the fact that our kid had cancer and we don't know if it's completely gone or if one stupid fuckin' cancer cell survived and its trying to replicate out of control again. ...I also remind myself of kids who have been given a 5% or 10% prognosis and have not only survived, but THRIVED. I also think of those that didn't make it. It makes me feel so ashamed of my anger sometimes.

...I want to GENUINELY say, "Okay, time to shift gears and stop being sappy and sad; time to shift gears and be happy and celebrate," but I can't. Not tonight. Maybe I will go to sleep and wake up feeling completely different tomorrow, but right now, this is how I feel about our "cancer journey" (that sounds so cliche; "nightmare journey through effing hell" sounds more appropriate). Tonight: Am I angry? YOU BET! Wouldn't you be? Aren't you? Have I lost sight of all that we have to be grateful for? ABSOLUTELY NOT. ...I just need to rant and get rid of some angst before filling my glass back up.

I will shift gears though, and definitely talk about what I had intended on posting about, instead of such a heavy vent about the past four years....

Tomorrow, Ryan will pass his four year anniversary by joining Chief Beck and LAPD's Team in Training team (aptly named "Team LAPD;" Ryan is an honored teammate) at Chief Beck's monthly press conference. Ryan was invited to join Chief Beck as he highlights Team LAPD's involvement with raising funds for blood cancer research through the Leukemia and Lymphoma Society's Team in Training program. They will be running and walking the LA Marathon and hope to raise $35,000 for leukemia, lymphoma and multiple myeloma research. To support their endeavors, please visit Team LAPD's website by clicking here. 

Chief Beck will also be highlighting our annual LAFD/LAPD St. Baldrick's Foundation Event, which is scheduled to take place on March 12. The St. Baldrick's Foundation is "a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives." In short, they fund more in childhood cancer research grants than ANY organization except the U.S. government. WAAAY more. For example, the American Cancer Society only contributes less than half of 1% of their annual donations to pediatric cancer. The National Cancer Institute only allots 3% of their annual budget to pediatric cancer research. Pretty grim & paltry numbers, huh? That's why we are so committed to raising funds via St. Baldrick's. To support our endeavors, please visit Team Ryan's St. Baldrick's Foundation webpage by clicking here.

Ryan also has a regularly scheduled, weekly follow-up appointment with Dr. P. tomorrow at COH, so it promises to be a full day. I should probably go to bed now so that I don't show up to the press conference with bags under my eyes, lol...

By the way, it was GREAT stopping by and seeing our TOP family today!!! Ryan really enjoyed the trip out there.

...And thank you Hester, Amy, Candy, RoRo, Jason and others for helping me and reminding me to start taking better care of myself so I can keep taking care of my family. 

Thanks as always, for stopping by.

P.S. Please DON'T worry about me, I'm just venting. I don't need counseling. I just needed to get crap off my chest and need some sleep. Tomorrow will be an AWESOME day!!!! I know it...