June 30, 2009

Running Update

My half marathon training is going very well. I finally bought new shoes and took them out for a four mile run today with the stroller. It was hot, but the shoes feel good. Madeleine is so good in the stroller, I think she actually enjoys it. Of course running with the jogging stroller is very different than running on my own, but I'm very glad that she tolerates it, or I wouldn't be able to train hardly at all. My longest run so far has been 6 miles. A little less than half of what I'll need to be up to in six weeks! This weekend I am participating in a 10k (6.2 miles) run on the fourth of July. The race takes place on my normal weekend running path, Miramar Lake. I'm excited about the race, and I think it will be good practice for the real deal.

If you are interested in donating to CureSearch, and don't want to use the online donation site, you can send a check to me, made out to "CureSearch," and I will send it on to them with the paperwork that they require. Remember that all donations are tax deductible. Please use the "contact me" on the sidebar to email me for my address.

Also, today I received two more names to add to my shirt. Two more stories that I didn't know before today, and two more kids who will benefit from the funds that we are raising. I am very excited about the shirt project, and can't wait to get started with adding the names. A lot of times when I'm tired of running, and my brain is trying to convince my body to walk, I think about Madeleine and all that she has endured: the nausea and vomiting that were caused by chemo, the tough recoveries from surgeries, the work that she has had to do to regain strength in her leg. I think about her hospitilizations and the pain that I know she was experiencing before we realized anything was wrong. These thoughts make me keep running, and now I have three more stories of inspiration, bravery, and resilience to keep me moving.

June 29, 2009

Test Results

I FINALLY got Madeleine's latest test results:
VMA - 36 (down 4 from last month)
HVA - 46.6 (up 7 from last month)

The nurse told me that because of the equipment failure and all of the problems that they had in getting the tests ran that most kids are showing an increase in the HVA, so I'm not concerned that that has risen. We go in for her next test in about a week and a half, and hopefully that will be a bit better. I am excited that the VMA is down, which means that eliminating some of the foods that cause the VMA levels to rise has helped.

Also, I was just told that if you are viewing this using Internet Explorer it's not exactly working. I can't figure out what the problem is, but I'm working on it.

UPDATE:
I solved the problem (apparently bullet points is code for "delete everything" in Internet Explorer). I had to delete two previous posts. I may or may not restore them.

June 18, 2009

Wow!!











Yes, that is a five hundred dollar donation!!!

June 17, 2009

Still waiting for test results and physical therapy

I spoke with clinic today to follow up with Mad's VMA/HVA results. Apparently the lab that the tests are sent to has experienced some huge equipment failure, so now the labs are being sent to a different lab. I probably won't have results until next week. It is so frustrating waiting on test results!

Yesterday Madeleine went for a physical therapy assessment. You may remember that we were going to physical therapy for a few months, but stopped about six months ago when we changed insurance. Also, this was before she was walking, and I really didn't feel that it was helping all that much. Even though she has gained a lot of strength in her right leg, she still struggles with it. Stairs are a little bit of a problem, because she will only lift her left leg to go up. Also, uneven ground is difficult because she lacks the balance that is needed to navigate soft or bumpy surfaces. I want to make sure that we are doing everything we can to even out her strength and balance. The assessment went very well and we are scheduled to go once a week for an hour for the next five weeks. Our therapist is working on getting our insurance to pay for more than the five sessions that they initially allow. The therapist was also glad to hear that we are going to gymnastics classes too. I told Mad's gym teacher about all of this during her class this morning and she said that we may be able to write off her gym classes on our taxes as some sort of physical therapy. I'll definitely be checking that out.

In other news, we've raised $400 for CureSearch in just four days!! I'm also eagerly awaiting a donation that is coming in the mail that will more than double this amount. I'm so excited! I spoke with a representative from CureSearch on the phone today (they called me to see how they can help) and she was very thankful for the fundraising and the donations. So I'm passing that thank you along to everyone that has donated so far, and everyone that plans to within the next couple months. A big thank you also to those of you that have posted links and posts about this cause on your blogs and Facebook pages - I really appreciate it!

Click here to go to the donation page, or click on the "donate" button on the sidebar.

Somersault video:

video

June 13, 2009

Launch

I've mentioned here that I've decided to run a half marathon. This decision was made because it's something I've always wanted to do. I like to run. However, I will rarely run just for exercise, or just for the enjoyment of it (it's not always that enjoyable but makes me feel so good). I will run if I have a training schedule to follow. I'm a rule follower, and I'm very good at following through with things once I've started. My training is nearing the end of the third week and I have met or exceeded all of the daily miles. I have the schedule taped to my fridge and I love to cross off the miles. Five miles, check.

On a run a couple of days ago I started thinking about my friend Danelle, and how she was able to raise over $1700 in a pretty short amount of time. I am so proud of her for accomplishing her fund raising, (and a big thank you to those of you that helped her out) and completing her own half marathon. Nearly everyday I think, someday, when we have the money, we'll donate to the hospital, someday we'll sponsor a child at the Celebration of Champions, someday we will donate money to CureSearch. I get stuck in the constant someday loop and, until now, I have failed to realize that there are things that I can do right now.

I have also been thinking recently of a friend that lost her baby, Ella, at 23 weeks of pregnancy. I can't imagine that pain. In dealing with her grief, and in keeping the memory of her daughter alive, Bree has started so many amazing projects to help other mothers who have also lost babies. She knits hats and sends birthday cards to mothers on the birthday of their baby so that they will not be forgotten. She creates art with the names of lost babies so that their parents know they aren't the only ones that are thinking of them.

They don't know it yet, but my two friends mentioned above really inspired me. People run races all the time for charities, why can't I? People do simple things that don't cost a lot of money in order to honor and remember those that have touched them. Why can't I?

Today I am launching my fundraising page. I am running the half marathon for personal reasons, but also to raise funds for CureSearch, which works with the Children's Oncology Group to find cures for childhood cancer. I set the goal at $2,000, but really I would be happy with any amount. Every little bit helps. I'm a little nervous about this because I simply hate asking people for money, but this will only work with your support. Please, please, pass this on to your contacts. Add it to your blogs, and tell your neighbors. I don't have that many readers, but I know that we can increase awareness and funding by word of mouth through online communities. If you aren't comfortable donating online, I will let you know of offline donation opportunities as well.

This is the part that I really need your help on. (And you thought I just wanted your money, ha!) Anyone that donates any amount that is the parent, grandparent, friend, aunt, uncle or in some other way connected to a child (even if you were once that child) that has, or had, cancer should email me the name of the child and I will embroider it on the shirt that I wear on race day. The children are the fighters and angels in this war, and their names will be carried over the finish line. I have a vision of a shirt filled with names, but again, I'm very nervous that there will only be a couple. I need your help in passing this on and connecting with other cancer families.

Thank you so much for your support over the last year, and thank you for helping me raise funds for cancer research. Now go click on the link and donate!

June 12, 2009

Teaser

Stay tuned for an exciting Mad Madam Madeleine announcement...


June 11, 2009

A couple images

This is from the second formal night on the cruise, and the only professional photograph that we purchased. I like the way it turned out, surprising because of the incredibly awkward posing that went into getting this picture. I wish that we had also purchased one of all of us, but the pictures were $25 each. I'll have to teach my mom how to scan her pictures :)

























I was so excited to find this picture from the Celebration of Champions in my mailbox today.
It's a little small, but you can click to see our sponsors, on the left, and our celebrity, on the right.


Mama, Boffee

Every morning when Madeleine traipses into our room at 6:15 am, she tries to get me up, "mama up!" mama UUUUUUPPPP!" When this fails she toddles over to Ryan's side of the bed and says, "mama, boffee." As in, Dada, we need to make some coffee to get mama out of bed. This usually does the trick.

A few days ago we made some playdough:





























Of course now the colors are all mixed up, but she still likes to play with it.


Today Mad has a clinic visit to test her VMA and HVA levels, think low numbers! We've been avoiding all of the foods on the VMA diet list, so hopefully we will see a decrease from the last set of measurements.

June 3, 2009

Alaska - the short recap

We're back!

I'm so glad that we got to experience Alaska. It is a beautiful place, and the glaciers were amazing to see.

We almost didn't make the trip. The day before we were to leave, Mad woke up sick and was sick all day. By evening it seemed that she was recovering so we continued with our packing preparations. She woke up around 10 vomiting, and continued to do so every half an hour or so. Around midnight I was on the phone with the airline trying to get a later flight. They were closed, and we checked online and realized that all of the later flights were booked. At one am it seemed rather inconceivable that we would be getting up at 3:50am to go to the airport. I had nightmares of Mad barfing on the plane. I think she slept for about two hours before we got her up at four am. And she was fine. She was in good spirits, she didn't seem sick at all. So we chanced it, and I'm really glad that we did.

We flew into Vancouver and Mad slept nicely on both flights. We met up with her grandparents and Aunt and Uncle and had a good time exploring beautiful Vancouver. The next day we boarded the ship. It was a little more difficult than we imagined, having a baby on a cruise. There was a lot to do on the ship, and for the most part she was did pretty well. Dinner was difficult, but I guess you can't expect an eighteen-month old to sit still for two hours every night past her bedtime. Having family on the cruise was great, as we traded off babysitting so that Ryan and I could enjoy some alone time for a couple of hours after dinner. We even got to see a movie - Slumdog Millionaire, the first movie we've seen in maybe a year.

We stopped in Ketchikan, where I went on a ziplining adventure with Kyle and Karen, and Ryan and Mad went on a taxi tour with the grandparents. In Juneau we took a tram to the top of a mountain and hiked around in the snow. In Skagway we walked around and checked out the local shops. Madeleine proved herself to be quite the little shopper, and loudly protested if we walked by a store without going in.







Looking out the window in our "obstructed view" cabin.



















First formal night.





















Bald Eagle in Ketchikan





































Our ship, the Island Princess.
















































One of the best parts of the trip was have a fabulous "balcony" dinner in my parents' suite. Here we are enjoying some of the billion appetizers that they brought. Mad really liked the caviar.















Balcony dinner.
















This was our private waiter, he was the head of hospitality and his name is Sunny. He works for six months on the ship, and then goes home for a month or two.














At a coffee shop in Skagway.
















Glacier Bay National Park. That is a glacier.




























Saying goodbye to Glacier Bay and College Fjord glaciers.