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Thursday, September 29, 2011

Settling into Round 3

Matthew is doing well with his new round of treatment. I spoke with another mom this week whose child has the same diagnosis as Matthew - therefore the same medicines. She said her child gets so sick from the Chemo that she has now started vomiting when they get to the clinic. I've heard those stories before, but I always thought Matthew's Chemo was milder than that. He hasn't ever gotten nauseous from his treatments, and for that I've always been grateful. Even more so, now that I know it's not that way for other kids in the same treatment protocol.

I feel bad for that poor girl, but it makes me grateful that Matthew is handling it so well. He truly amazes me.

Today, he's complaining of pain in his right knee, and yesterday, it was pain in his right foot. It isn't the first time he's had those complaints, so that's definitely something we need to watch. His Chemo has a relatively common side effect that they call a "dropped foot." I don't really know exactly what that means, but they always check his walking to make sure it doesn't look funny.

I noticed today that his hair is really growing back. He never really lost it all, and by the time he was done losing what he did lose, there was peach fuzz underneath the hair that fell out. So, he never did have a smooth and shiny head. Now, the darker hair is coming in. I think there's one more round of treatment later that will really make him lose his hair, though.

He's sleeping a little bit extra, and we realized this week that every time he goes in for Chemo, he has a rough day 2 days later. Yesterday was that second day, and it was hard on him. That must be when the medicine's power is at its peak. He took a long nap, and slept in late this morning, which is something he never does. He's in good spirits, though.

On another note, as Childhood Cancer Awareness Month was coming to an end, I was reflecting back on the things I saw people accomplish in September. I just have to say people are amazing! If you get enough passionate people together, I swear they can accomplish just about anything!

You all know about the fundraiser our family did for us. Also, I blogged about Light the Night for the Leukemia and Lymphoma Society.

I've also been deeply touched to learn about Chilis. Every year, one day a year, they donate all of their proceeds to St. Jude's.

Another really cool thing I saw last month was called 46 Mommas Shave for the Brave. They raise money and awareness by shaving their heads. There are 46 of them every year, in honor of the 46 kids who are diagnosed with cancer every weekday of the year. Their raised money goes to St. Baldrick's. This is a video of their event. It's extremely short, but SO touching!



Alex's Lemonade Stand started out in a cancer patient's (little Alexandria Scott) front yard. She wanted to earn money to help her parents pay for her treatment. She has earned her angel wings (as the Cancer Moms like to say), but her parents continued Alex's Lemonade Stand as a way to contribute to ongoing research for other kids. Today, it's a national effort, and one of the most well known. A friend of mine here in Salt Lake heads up a lot of Alex's Lemonade Stand efforts here. This year, she met her goal of $10,000 by the hair of her chinny chin chin.

Hyundai has a program called Hope on Wheels that donates to raise awareness and help fund research.

People Against Childhood Cancer
, or PAC2 is an advocacy community on a mission to raise awareness.

Hope Kids
helps children with life threatening illnesses, and their families, to have hope for the future by providing them with fun family activities that are free. Because families fighting such illnesses are so commonly facing huge financial burdens, this is a blessing that is hard to quantify. Families would often have to stop doing fun activities if it weren't for organizations like this, and that just adds to the stress of the situation. The Salt Lake chapter of Hope Kids has taken kids recently to the showing of Mary Poppins at Hale Center Theaters, the circus, and Dew Tour. There's also an upcoming event that is a weekend camp out at Bear Lake in the HOA there. You only have to pay if you choose to upgrade your cabin.

Camp Hobe
is a summer camp for kids fighting cancer, and their siblings. It brings kids together who are dealing with the same types of issues, and takes away some of the feelings of loneliness. I know I couldn't get through this without my support group, and I want my kids to have the same.

Cure Search is searching for a cure. They donate 90% of the money they raise to the Children's Oncology Group, which is the largest study group in North America. Matthew's treatment is part of a study through COG.

Cookies for Kids' Cancer is a charity orginization started by the parents of a cancer patient. They started out raising money for their own child through bake sales, but their efforts raised lots of national attention, and now they have a much bigger mission. From their website, I copied the folowing: "Cookies for Kids' Cancer is committed to raising funds to support research for new and improved therapies for pediatric cancer..."

The Make-A-Wish Foundation is one of my favorites. They are very much like what they sound like they are. They grant a wish to kids with life-threatening diseases. The wishes are as unique as the kids. I've heard stories of kids who met their heroes, whether they were athletes, movie stars, or singers. They usually get to spend a day with them, and do something special, like front row tickets to a sports event, or a private concert. I've heard lots of stories of Disney vacations, even cruises. I've heard stories of playgrounds being built in back yards, or bedrooms being redesigned. They are pretty amazing with the things they can pull out of their hats. This is a very worthy cause.

Donna's Good Things was founded by the parents of Donna, who died of an aggressive brain tumor at the age of 4. She was a happy, joyful child, and they wanted to honor her memory by spreading joy in her name. They have funded scholarships for dance classes at her old dance school, they have purchased personal DVD players for the children's hospital where she was treated, and have provided families with iPads to help beat the boredom during treatment. From their website: "Donna's Good Things works to provide joyful opportunities for children facing adversity." They provide these opportunities to all sorts of children - not just cancer patients. Donna's mom blogged about Donna in September. Donna's treatment lasted 31 months, so starting August 31st, her mom told her story one month at a time for 31 days. It was the most touching thing I've ever read, and it changed my outlook on life, which had become pretty grim. She taught me to "Choose Hope," which is her catch phrase. You can read the story of Donna's Cancer treatment here.

Lastly, I have a tender spot for Pennies By The Inch. This is also not necessarily for children with cancer, but for all sorts of children in need. It benefits families at the children's hospital where Matthew is being treated, Primary Children's Medical Center. Pennies By The Inch helps cover for treatment for children whose families cannot pay. I have been a lucky enough mother that my children have always had insurance, save a few months here and there when Justin has changed jobs. Justin changed jobs just three months before Matthew's diagnosis, and we were very lucky they started his insurance right away. It really made me reflect on what would have happened to us if they had made him wait. I'm not sure he was even there for a full three months before diagnosis, but I do know that Matthew got sick before that, and he had 6 doctor visits in the month prior to diagnosis. Thank heavens we had insurance! I feel very deep empathy for the families who don't. It would at least double the stress of the worst thing we've ever been through.

Whew! That's a lot of charities. I felt like I couldn't properly advocate Childhood Cancer Awareness Month if I didn't give people the means to DO something.

Many employers, including my own, have charity drives in the fall. My company matches our donations dollar for dollar during the month of October. We have a list of hundreds upon hundreds of charities to choose from. The ones I've listed above will forever have priority for me - although I'm sure all of the others are worthy, I am now biased, I'll admit.

To end my campaign of 30 Ways in 30 Days (I realize it's actually day 33, and I'm a tad late, but that's okay.) I wanted to give people a call to action. Even if you only have $10 to spare, these charities are a worthy cause!

The reason Childhood Cancer needs more awareness is that it is treated like adult cancer, even though it's not the same. There are 12 major types of Childhood Cancer. They mostly appear in children, yet are treated with hand-me-down medications from adult cancers, often causing debilitating side effects that can last a lifetime. I personally know 2 children who were rendered deaf from their cancer treatment, and also two whose growth has been permanently stunted. I know children who have lost organs and have to have things like colostomy bags, and prosthetic eyes. Thank heavens that those children were saved, but how sad that they will be so different for the rest of their lives. Childhood Cancer receives 3% of government funding for research, and that's for the 12 types combined. Other types of cancer, like Breast Cancer, get up to 24% for a single type of cancer. Also, when you compare those types of cancer - Breast Cancer already has a 99% cure rate, whereas the Children's Cancers combined have more like an 80% cure rate.

It's time to spread the love.

If you've read this whole post, I'm impressed! That's commitment. Hopefully, I've given you an idea of where your charity bound dollars can go. Thanks for your continued love and support!

Tuesday, September 27, 2011

After the Fundraiser

I should have done another blog entry by now. It has been on my mind all day every day since people started showing up to help set up on Saturday morning. The problem is, I know I'm going to leave out some kind of thank you, or forget to mention someone. So, please don't be offended if I should thank you here and I don't. The honest truth is that while she was planning, Andrea took care of everything. This was not supposed to be hard work for me, which was the most wonderful thing she could have done. With that said, I honestly don't even know the names of some of the people who volunteered.

I hope that doesn't make me sound ungrateful. In fact, it's quite the opposite. While my friends and family worked extremely hard, and I will be forever grateful for their sacrifice, I am just as touched by the generosity of strangers. I am amazed that these people, who don't even know us, were willing to show up and spend their entire Saturday helping us. There were friends of friends of friends there. It was amazing.

Items kept coming in for donations all through the event. Beautiful crafts that must have taken so much time to make. Lots of baked goods. Jewelry. Feathers for the hair, and paint for the face. Massages. Monster Truck rides for the kids. Knives for sale. It came together so well.

The food was good, too! We were worried about the cookies, because we had wanted to get them all donated from a business, but the business we were hoping for donations from couldn't help us. So, we asked people to bake cookies, and there were plenty! The kids coming through the line would choose 2 or 3 of them, and there were still plenty of leftover cookies. The hot dogs were the best I have ever tasted!

There were lots of things left over, so I wanted everyone who donated to know what we're doing with them.

The bake sale items went with my sister, Melissa to Lehi. She lives in the cutest little neighborhood, and her back yard neighbor is a big farm with a peacock named Nigel who comes and tells her kids when it's bed time. In front of her house, the road is a dead end, and one of the neighbors across the street has enough property that they keep a small number of sheep. To the other side of her house is a huge park. Never could I choose a better location for a home! At the park there, they have lots and lots of soccer. She says it's pretty much all day every day. Hundreds of soccer moms and dads come and go with their kids. So, she took the bake sale items home with her. She said she thought they would be good at least until today. So yesterday, she had a table in her yard, and her kids walked around the park with a wagon. She says they were really cute, saying, "Bake sale for Leukemia." Sweet little stinkers!

The boutique items went home with my sister, Tonja. She lives just off of Redwood Road in-between the big light at 6200 So. and the freeway entrance. Behind the office buildings right at the freeway entrance, there's a gated community, which is where she lives. Out front, right on Redwood, there's a patch of grass that belongs to the HOA for her house. Next Saturday, she will be putting a few tables out. This is a really busy location, so we expect a lot of traffic. We also will have flyers soon if anyone wants them.

Some of the bigger ticket items were brought home with us or Andrea to either return to the person who donated or sell on Ebay.

The fundraiser was a smashing success! I know it was a little bit out of the way, and I'm so grateful for everyone who spent the time to find it. It was well worth it, and we will be able to pay off a lot of our bills with it, so thank you! I can never thank you all enough for that. Cancer is stressful enough without major financial problems adding to the list of issues.

I also have some ideas now for ongoing efforts to raise money. I will put more on the blog about it later, but they will be items that identify the buyers as supporters of Matthew, and we will sell them on the blog.

On a more personal note, I wish I could effectively convey the level of gratitude I feel for the people who did this for us. For me, this wasn't just about money. After Matthew's kidney stone, I was in a deep depression. It was so hard for me to see my baby boy in that kind of pain, and to know that it might not even have anything to do with his Cancer. It's just so unfair. I knew that being so depressed wasn't doing anyone any favors, and I was fighting to get out of it, but I was stuck. I couldn't find my way out, and I was starting to worry I never would. Then, I started to gather up donations, and I couldn't believe some of the stories that went with items that were donated. People are so amazing!

Then, Saturday came, and I saw all those people who were all there to help us. There was so much love and generosity! If we hadn't even made $100 it would have been worth all the effort because it was so uplifting. I am a new woman now. For that, I can never thank you all enough.

After the fundraiser, Matthew and I had another event to go to, believe it or not. It was called Light the Night. It's a fundraiser done by the Lymphoma and Leukemia Society every year. You set up teams and raise money to donate to them for research. They have a big event at the end of the fundraiser, and everyone there goes on a walk together. For every hundred dollars your team raises, you get a lit balloon, but everyone who walks gets a balloon - they just aren't all lit up. There are white balloons for survivors, gold balloons for anyone walking in honor of someone who died, and red balloons for supporters.

The teachers at Matthew's daycare, and one family in particular, the Johnsons, worked together to earn enough money for Matthew to have a lit balloon. He also got a t-shirt that says "Survivor" on the back. It's the first time anyone has referred to him as a survivor, and it made me cry, for the first time that day. Way to go, LLS! Anyway, we walked around Sugarhouse Park as it grew dark, and it was a very beautiful and uplifting experience.

Here's a video about what Light the Night has been able to accomplish.




Waking up Sunday morning, I should have been so exhausted, but I wasn't. I felt alive again. Full of energy. Happy. It was wonderful.

Thank you to everyone who helped us this weekend. You will never know how many parts of my heart you touched!!

Pictures to follow.

Saturday, September 24, 2011

Fundraiser

Well, today is the big day! I'm really excited for our fundraiser today. I think seeing the generosity of strangers has been as important to me as the actual proceeds will be. I was so down and depressed, and despite my fight against it, I was struggling to rise above it. Then I started running errands to help prepare, and gathering up the items that have been donated for sale. As I heard some of the stories of the people who donated, and saw how many strangers did such thoughtful and generous things, I was uplifted. I believe I have found the way out of my depression.

For anyone who donated something, even the smallest items, who is reading this now. Thank you. I can never express what your generosity has already done for me, regardless of what sells.

Christ said, "If ye have done it unto the least of them, my brethren, ye have done it unto me." Please know that you will be blessed in some way for what my family and I could never find a way to repay, or even properly thank you for. I believe that with all of my heart.

I'm really looking forward to seeing the turnout today! It's like this amazing gathering of friends and family, and friends of friends, and so on.

It sounds stupid, but last night, Allison came home with a feather in her hair, and for some reason that completed it for me. It really is going to be a fun time for the family. There will be a $3 hot dog lunch for the first 500 people, face painting, a boutique sale (and the crafts that were donated are SO CUTE!!!), a silent auction, feathers for your hair (YAY!), and of course the car show.

Hope to see you all there!!

PCA Parking Lot

4654 West 1525 South

Today!

11:00 am – 3:00 pm

Wednesday, September 21, 2011

Round 3 (already!)

Tuesday, Matthew started round 3 of his treatment. I wasn't ready for it - I thought he had another week to go. But it's good news, because it's progress. So yay!

His current phase of treatment is called Interim Maintenance I. There are two rounds of Interim Maintenance over the course of his treatment. This seems like it's going to help things ease up on us a little. He only goes to the doctor every 10 days, and all the chemo is intravenous, except for a single lumbar puncture in 30 days. The medicine he'll be getting in his IV is called Vincristine (which he got during his first phase of treatment). It only takes 3 minutes to administer it through his IV. He has not suffered any obvious side effects from the Vincristine in the past, except that it probably contributed to his hair loss - so he may lose the rest now. He'll also be getting IV Methotrexate. This is what they've previously been putting into his spinal fluid, but the IV dose is a lot bigger. It may make him nauseous, but they give him anti-nausea medicine with it, and Tuesday seemed to go well. I didn't notice any nausea, or other problems. They said that if he gets sick at home afterwards, I can give him Benadryl and it will help. The Methotrexate takes 15 minutes to administer through an infusion in his IV.

He doesn't have to take any daily medicine at home - just his antibiotic twice a day on Mondays and Tuesdays.

Interim Maintenance I will last 57 days, unless there are any delays. The thing that could delay it is his counts. They will only administer the regularly scheduled chemo if his counts are high enough. So the day before each appointment, a nurse will come to our home and draw Matthew's blood. If his ANC is above 500 (if I remember correctly) they will do his chemo the next day. If it's lower, they'll delay it and check again in 4 days. If it's still lower, they will give the Vincristine, but not the Methotrexate.

Methotrexate will lower his counts, and they want to give as high a dose of it as possible, so it's a constant juggle. If his counts are high enough, they'll continue to up his dose until he reaches a maximum. So, it seems that for the next 57 days, Matthew will have pretty low counts. Hope that's not a problem with cold and flu season coming up.

SO, with all the technical stuff out of the way. I have some fun stuff!

My husband's amazing family has been working hard since right after Matthew's diagnosis to put together a fundraiser for us. I know I've mentioned it before, but I'm going to mention it again. It's a classic car show - and I've heard there may be as many as 70 cars there. There will be a silent auction, boutique/craft sale, face painting, and a $3 hot dog lunch. While I can never describe how grateful we are for the financial help we've been receiving (it has kept us afloat!), I'm almost more excited for the fun event with so many friends and family there. I think it's going to be such a good time! And honestly, my sisters-in-law know how to throw a great party!

I can't upload the flyer, but I'll copy and paste what I can here:

Classic Car Show
Fundraiser










PCA Parking Lot

4654 West 1525 South

Saturday September 24, 2011

11:00 am – 3:00 pm


There will be fun for everyone!!!

· Boutique sale

· Bake sale

· Face Painting

· Silent Auction

· Lunch


Please join us for a fundraiser to benefit

Matthew Burr, Battling Leukemia at age 3.

All proceeds will go to help Matthew and his

family through this hard life experience.

Our thoughts and prayers are with them

every step of the way.