Wednesday, October 3, 2012

CureSearch Walk: THANK YOU!!

SLC CureSearch Walk for Children's Cancer
THESE are the reasons I walk! 

The CureSearch walk last weekend was amazing. The turnout was astronomical! Thousands of people showed up. Take a look at these photos that another cancer mom (Kristin Torres) took, and patched together, to show how many people were there:

(Click to see the full size)

The official amount raised at the walk was a whopping $157,418!
And that's NOT including all the people who registered that morning. When they announced it, I believe it was $158,000+. 

Our team, Mason's Brain Train, was able to raise an awesome $205!!!

You have all been so generous with your time, money, and support, and we are SO grateful for your help in this! Mason is ALIVE today, because of the research this money is funding. And many other children will live as well, because of the research this money is funding. We really appreciate your support. You all rock! 

Here are some pics from the walk. I got it in my head to test my film photography skills, and only brought a film camera...which ended up being a mistake. Lessons learned.

I LOVE this picture! Look at all that chocolate brown hair!

 Mason and his posters!

These guys! :) 

 Jack Sparrow!

 Cuties!

They had a spot on the lawn marked for each team. It was pretty cool! 

 Balloons released in honor of the cancer cuties who earned their angel wings. Way too many!!!



 Cancer cuties.


The most talented face painter ever, was there!


I didn't take many pictures, but others did. The following pictures are from Legacy Photography, Vanessa Sue Photography, and Embre Photography.

The crowd. 

 A moment of silence, and releasing balloons for those who were lost to cancer (one balloon in honor of each person--there were tons of balloons).

 Mase!

 The kids starting off the walk! You can see a bit of Mason in the second row.

Black Widow, Cat Woman, and....I have no idea who the other two are. :D 

Balloon animals & crafts! 

SO many characters came! 

 Batman!



 Predator

 Mascots



 Clowns!

The awesome committee of cancer moms, who put it all together.

Wednesday, September 12, 2012

Tumor GIF

I opened up Mason's scans again today, so I could print a picture of one of them off (for a project I'm working on). I still can't believe that thing used to be in my baby's head. It seems so crazy to me. And since I had a lot of time on my hands, I decided to make a GIF of the tumor, since the videos I previously made really don't cut it. I know those huge watermarks are annoying and are in the way of most of the tumor. 

Here's a MUCH better view:


It's a scan going from the left to right sides of his head (it's backwards). All (yes, ALL) of that lighter grey area you see pop up in varying thicknesses at the base of his brain, is the tumor--the one that got its trash kicked by Mason. You can see where it extended past his right ear (the last few slides), and then where it begins to creep down his spine. *shiver* I'm so glad it's gone!

 Just a reminder of how far Mason has come.


And if you have a sec, don't forget to join Mason's team for the cancer walk! It's super easy, and it'll be a fun day!

Thursday, September 6, 2012

CureSearch Cancer Walk: Join Mason's Team!

It's been a while, hasn't it? Here's an update, before I get into the walk details:
Mason has been marvelous. He has grown a whopping two inches in the past six months, alone. That's more than he's grown in the past two years! His hair has grown back in a lighter color than it was before cancer, is less coarse, and is no longer the wavy mess that could not be tamed, but is now straight, and does whatever I want it to...although I kind of miss those battles against the 'ole kinks and cow-licks. 

He has also grown into quite the little man. He is sweet and thoughtful, caring when others are sick, and likes to randomly bring me drinks of water, Kool-Aid, or whatever is in the fridge that day. He's got attitude and such wit! His stubbornness rivals my own when I was his age. In fact, I think his may be worse...my mom says I deserve it. ;) 

But every day I am so grateful that I am able to watch him perform daredevil tricks that make my heart skip in fear; pour his own cereal; sing his heart out; don the hat my cousin gave him that he always wears (it's his favorite, Tyler), and get into some sort of trouble.

I am so grateful for the research that went into determining a successful coarse of treatment for him. Which leads me to the following....


It's that time of year again! It's time for the cancer walk!

This year we are again participating in the CureSearch childhood cancer walk, and we want YOU to join us in walking for Mason! Last year was the first year Utah had hosted the CureSearch walk, and it was such a huge success. This year, there will be even more fun! But don't stop reading, now! It's not expensive, and it's not a long walk (around 2 miles; very family and cancer child friendly).

This is something that is very important to us. We feel strongly about CureSearch, and all that they do for childhood cancer. I won't bombard you with devastating facts about childhood cancer, but I think there are three very important facts you should know:

Fact #1: Despite using children as the primary faces of their campaigns, the major cancer charities (American Cancer Society, National Cancer Institute, Leukemia & Lymphoma society, and a few others) direct less than 4% of their funds to childhood cancer research. That's only 4 pennies for every dollar donated!

Fact #2: Cancers found in children (there are 12 main types of childhood cancer) are different from those found in adults, having different causes, and requiring different treatments. <---Meaning that research in adult cancers does little to benefit children with cancer.

Fact#3: CureSearch is one of the few cancer charities to donate over 80% of their funds to childhood cancer research. In fact, CureSearch donates a whopping 94% of funds received, exclusively to childhood cancer research! 


That is why we support CureSearch, and it's why this walk is so important. So here are the details. 
Will you walk with us?

Mason's Brain Train
We are team Mason's Brain Train!
Please, please, please consider this. We would love for you to join our team and be there with us as we walk for Mason. To join Mason's team, all you have to do is log into our team page by clicking the link above, and sign up. Registration is only $10 for anyone 16 and older, and anyone under 16 is free.
If you want to wait until the day of the walk, you can sign up at the park that morning...just be sure to let them know you're part of our team.


CureSearch Walk
Saturday, September 29th 2012
Registration: 8 am
Ceremony & Walk: 9 am
Sugar House Park: 1300 East 2100 South  Salt Lake City, UT 84115

Other Details:
$10 for adults 16 and over, and FREE for kids 15 and younger
There will be free food, music, and lots of games & activities (more than last year)!
It is a short 1.5-2.5 mile walk, designed to be family-friendly so that kids, strollers, and wheelchairs are all welcome!
Bring water to drink and comfy shoes, and we'll see you there!

Can't make it? 
Sign up online to be a virtual walker for our team, and you can still support us! :)

Shirts:
I am working on making some shirts for our team. They'll be around $5-$8 each, so let me know if you want one, and what size you need, by the 20th of this month. Email me at: penelopelolohea (@) gmail.com


So, will you join our team?

Monday, May 14, 2012

What Doesn't Kill You Makes You Stronger--Even Cancer

It's hard to explain to someone who has never experienced it, how much cancer has changed our lives--especially when I get to the part about how I'm actually grateful for the experiences of the past two years. Cancer sucks. That's true enough. And if I could do it over again, I would pick whatever path didn't lead to Mason having cancer. ANY other path. But there are no do-overs in life, and what has happened has already happened; come what side effects may. And even though it was Mason who had to deal with the hard stuff, I was also blessed to have a transformation of my own. Our experiences have brought us to a mental and spiritual place that would have taken years for both of us to reach by any other (easier) means.

Cancer didn't kill us--it made us stronger.

Nothing demonstrates that point better than this video:



Thanks to my brother Sila, for sending me this video today. It made my week!

Tuesday, April 3, 2012

Stronger Than Cancer!!



This post has been a long time coming! Mason's follow-up MRI was yesterday...the one that would tell us whether or not the cancer really had come back.

THE SCAN WAS CLEAR!!

I was worried at first, because we went to clinic after the scan to get our results and have a checkup, and they directed us to a room that we've never been to before; one all the way across the hall of hospital! I sat in there almost in tears, absolutely certain that this was the special side of the hospital they took patients to when they had an especially serious comeback of cancer. And Mason wasn't helping, since he was screaming that I just needed to take him home NOW! He wasn't fully awake from the sleeping meds, and has never been so uncooperative and loudly screaming at a clinic appointment before; most of the staff's comments were somewhere along the line of, "we've never seen him like this" or "he's usually so happy!" 

Anyway, Dr. Sato came in and said she had to see anther patient but she just wanted to let me know that the scan was clear, so I didn't sit there the whole time wondering. Phew!

The rest of the appointment was spent answering questions about Mason's behavior, since from now on, they are focused on diagnosing the late-effects of treatment. These are usually the worst effects of cancer treatment because they are pretty bad, and they can all manifest anywhere from months to years after treatment, and can sometimes even appear in adulthood.

Some of the most common late effects include:
  • Learning disabilities (memory, attention, hand-eye coordination, delayed development, behavior problems)
  • Thyroid problems
  • Abnormal bone growth
  • Hearing loss <---already manifested, but comparatively, not very badly! 
  • Vision problems <---already manifested
  • Dental problems <---I'm pretty sure we'll find he has horrible teeth once we finally make it to the dentist.
  • Heart problems
  • Lung, kidney, or liver problems
  • Delayed sexual development/fertility problems
  • Pituitary gland problems: fatigue, listlessness, poor appetite, cold intolerance, and constipation
  • Increased risk of future cancers (the types they can develop depends on the type they had to begin with)


I haven't given much thought to these, since the end of treatment always seemed so far away, but now that I'm thinking about them, I'm pretty worried. The risk factors for developing late-effects are significantly higher with each treatment, and Mason has had all but one of the treatments that are thought to be the most damaging: 
  • Chemo - some drugs pose a higher risk than others.
  • Surgery - higher risk if surgery to the brain, and if younger at the time of surgery. Higher risk with each surgery.
  • Radiation - higher risk with radiation to the brain and spinal areas, and an even higher risk the younger one is when exposed to radiation. Higher risk with higher doses (and thanks to the second surgery, Mason didn't have to have the high dose of radiation!).

So far, he has been what I'll call lucky. Only his eyesight has significantly suffered, and things like his balance and walking have already begun to improve. I have noticed that he hasn't grown more than a few centimeters since he began treatment, though. This is big for Mason, because he's always been above and beyond the highest lines on the growth charts. He still is, but he's no longer growing at the huge pace that he was. Dr. Bruggers explained that they usually find that when this happens, it takes at least a year for the body to begin to grow again. After that, it's common to see big growth spurts, where the body catches up to where the child should have been, and then continues on the same path of growth. If this doesn't begin to happen, then they'll look into growth hormones (which I don't want Mason to have), but it will be at least a year before they even consider that. 

This appointment felt like a huge step. We learned that Mason no longer needs to take his Septra; the last remaining medicine he was taking. We also learned that from now on, most medical concerns can be handled by his pediatrician, and we no longer need to go straight to the ER if he has a fever. It's a little scary, and feels like we're on shaky ground, but at the same time, we are finally done! I know I keep saying that, but this time it really feels like it. We're REALLY done! The only reason we have to visit Primary's from now on, is for followup visits.

Oh, and for one more surgery which will happen within the next month, where Mason will have his PORT TAKEN OUT! He is extremely excited for that one. 

Did I mention that we're DONE? :)

Friday, March 16, 2012

Restaurants, Parks, and The Knowledge of a Cancer Child

I decided to take Mason out for a special breakfast a few weeks ago. I wanted to go somewhere he has never been to before, so I took him to...wait for it: Denny's. Not a big deal, except for the fact that I almost had a breakdown inside the restaurant. When the hostess took us to our seats, Mason threw his jacket on the chair and ran around the corner to another room. I called his name, and he looked utterly confused as to why we were sitting down. This was strange, but I brushed it off. I began reading the children's menu to Mason, but he wanted everything. When I told him he had to pick one thing, he asked, "Oh. So do you pick something, and when you're done, you can pick another thing?"

This is where I realized what the problem was: he doesn't remember how things work in a restaurant!

Since he began treatment in 2010, the only restaurant Mason has been to is Chuck-A-Rama--where I started taking him at the end of last year because I felt guilty about how hard the treatments were hitting him. Chuck-A-Rama became an almost weekly indulgence for about two months, because I figured out that it's the only place where he will stuff his face full of food. So what if I had to pay, when he only eats the macaroni and corn? That same meal, eaten at home, would only have a few bites taken out of it.

So after over a year of being cooped up inside, that is the only memory Mason has of eating out, despite the fact that pre-cancer, we went to other restaurants all. the. time. When I realized that, I realized why he had run into the other room (to find the buffet), and why he wanted everything (because you can have anything at buffets)...and I couldn't handle it. The startling difference of our 'before' lives and our 'after' lives, hit me in that moment, and I had to take a few seconds to calm myself down before I cried.

This huge difference was made even more clear yesterday. My brother has been coming by the house lately and inviting Mason to go places with him, like the store, the park, on a walk--anywhere outside of the house. (I fully admit that I'm still having a hard time taking him anywhere, even though I know it's now okay. I think this has to do with the fact that I don't really believe it's okay until I hear the results from his next scan. Stupid cancer. It messes everything up.) Each time, Mason has said no.

It's strange that he hasn't wanted to go to the store, or for a walk, because he loves both of these things--at least, he used to and he says he still does. But what really worried me, is that he didn't want to go to the park each time he was asked. This is astronomically huge, because Mason LOVES the park. Once there, it is almost impossible to get him to come home willingly. And he even declined MY offer to take him to the park! But he finally said yes to my brother's offer to take him to the park yesterday, and boy, did he love it! I heard his shoes pounding on the floor as he ran to me in excitement when he got home. His eyes were huge, and he was short of breath, but he was practically yelling with surprise as he said, "Mommy, that was SO MUCH FUN!"

I honestly think he had forgotten what it's like to play at a park. Cue another breakdown.

I've been thinking a lot lately, about all the sacrifices we've had to make. Mason has not been able to have a normal childhood while in treatment, and has missed out on a lot. He's a child who didn't remember how much fun you can have at a park. He's a 5-year-old who is starting over in learning how to act in public, or how to order in a restaurant. He doesn't have friends to play with (good thing he has cousins), and he's missed so much school.

But while these things seem so terrible, I can't say that I would trade this past year for the chance to have it filled with 'normal life' memories. Mason may not have spent the year doing things other kids get to do, but he did spend it gaining confidence, patience, knowledge of his body, compassion, and tolerance for things he can't control. He's not afraid of doctors, and when he gets sick now, he knows the feelings that give him enough warning to throw up in a bucket, instead of on the bed. What's more, he knows how to comfort others who are in pain, and he speaks from experience when he says, "Hold my hand, it will be okay."

I'll take him having that knowledge, over anything.

And just for the record, what prompted this post was Mason's tiny voice as I got up this morning, saying, "If Uncle Vili comes to see if I want to play at the park, I will go."

Friday, February 17, 2012

In Which I Get All Emotional About Mason's Doctors

Despite the bad news we received on Monday, today I can't find it in myself to be anything but grateful.

I belong to a Facebook group for Utah parents of children with cancer, and while it is extremely therapeutic for me, it is also a bit scary. Reading what others are going through, and the problems they are facing--some very similar to either mine or Mason's--is both good and bad; I either feel better that I'm not the only parent out there feeling those things, or my heart breaks to hear what things their little children are dealing with. Nothing makes me want to find a way to fight against cancer, more. You may or may not have noticed the increase in cancer-related status updates on my page.

But back to the grateful part (before I get carried away): I was reading posts from the parents and some of the problems they have had with the doctors who treat their children. Some of their experiences are terrible, and though most of them were one-time occurrences, just the thought of ever having such confrontations makes me shudder. We've had our share of big problems with a few nurses, an anesthesiologist, and one ENT doctor. But after voicing our concerns (sometimes through those higher up in the chain of command), the problems were solved on all accounts, and we were able to move forward.

And yet, reading those stories has made me feel intensely grateful for the doctors Mason has had. Dr. Riva-Cambrin, Dr. Thompson, Dr. Bruggers, and Dr. Sato, have all been pivotal to the good experiences we have been blessed to have had so far. These are doctors who have listened to our concerns, explained (multiple times, if needed) everything we were unsure about, double-checked anything we were uncertain about, took extra care with Mason, and have shown us time and again, that they truly care about him and his well-being.

Now, please believe me that I don't say this to brag. It's just what I am feeling at the moment, and I need to put it in writing before I forget the intensity.

Because I would not choose different doctors, even if I could.

I have literally put my son's life in each of their hands, and I know they have recognized the importance of that. My decision to allow Mason to have a second surgery only a week after the first, rested solely on this exact feeling, when I heard Dr. Riva-Cambrin say, "I've been up all night thinking about Mason...." My appreciation for Dr. Thompson came the first time I spoke to him, as I waited for Mason to finish simulation, when he actually listened to me, without any rushing. My adoration of Dr. Sato began with our first visit, when she played with Mason, and stayed a little longer to talk to us after the others had left. And my trust in Dr. Bruggers had been there to begin with, but was solidified at the last chemo appointment in Jan. where she told him--with a shaky voice, from what I assume may have been near-tears--what a character he is, and how strong of a boy he is. There are many other points in our treatment where his doctors have shined, but these points stand out in my mind.

I am so, SO grateful he was (and is) able to have such wonderful doctors. They have made all the difference.