December 31, 2009

Christmas

We had a wonderful Christmas at Grandma and Grandpa's house. We also got to visit with some friends that we don't have a chance to see very often, and that was great too. Madeleine got more toys than any child needs ever, but she's happy about it.












Cookie decorating is really fun.




















Santa showed up on Christmas Eve for a visit! He looks awfully relaxed here for a guy with such a busy night-before-Christmas schedule, doesn't he?





















































Christmas morning. The dollhouse was her big Santa gift.






































































Madeleine's paparazzi











































































Medically, there is news I haven't really wanted to share, because I'm choosing to believe that it isn't true, until we have more conclusive data. Mad's MRI in early December showed that the tumor may be growing. It's been stable for a number of months, but this measurement showed that it was bigger on all measurements. The measurement could be wrong. Her markers remain about the same, so thankfully they also are not showing growth. Instead of retesting in four months, as was the plan had this scan been stable, she will be rescanned in two months, and she will also have an MIBG (radioactive nuclear medicine scan that shows how much of the tumor is still active) in a couple of months as well. Neither of these scans has been scheduled yet, but I'm holding my breath until then...

December 4, 2009

Shabby Chic

I finally got around to taking pictures of Madeleine's room:



















































































I love that the headboard and the frames completely match, that was unplanned. I repainted the dresser to match the headboard. It took a whole lot of sanding and many coats of paint because it was originally stained to match her crib, which was a dark cherrywood color. I'd like to get a small night table too, and I'm occasionally scouring thrift stores for that, but haven't found the right one yet. I didn't show you the blank, white wall that faces the bed. I don't know what to do with it. I'd like to put up some children's artwork, but don't want to spend any money on that project.

November 11, 2009

Birthday pictures

My big girl turned two at the end of October. Her birthday party was on Halloween, so all of her friends came dressed up. Madeleine, who insisted on wearing her turtle costume every day for the entire month of October, only wore her costume for about five minutes the day of Halloween. Of course!

























The party was luau themed, so of course we had sand and seashells.





































Madeleine supervises the party set-up.




















Sophia Dragon














The dragon chooses an India Pale Ale, but is carded by the bartender.



















That's one stuck pineapple



















Amanda Mouse arrived via railway















Afraid of revealing their super powers, the Buzz Lightyears studiously avoid one another.














Humphrey sniffs out the witch (Ashlynn)























Tucker Lightyear wonders just how to get those wings to work






















Cade Lightyear - To Infinity and Beyond!


















Friends playing in the sand


















Enjoying rainbow birthday cake


















The beautiful and talented Auntie Karen (all of these pictures are taken by her, or at least by her camera).
















Dressed up for trick or treating. Humphrey had to suffer wearing his bee costume for another year.



We had a great weekend filled with friends and family. My favorite part of the party was when Madeleine took a break from opening presents to look up and see everyone watching her. She said, "look at all the friends!"

October 21, 2009

No news is good news

I'm sorry that I haven't posted anything in so long. I'm feeling guilty about abandoning Mad Madam Madeleine, but I really don't have much to say. I never intended to be a "blogger," nor do I now consider myself in that category. If I have a picture, video, or story to share, I will continue to share it here, but I am not going to make myself post things on any kind of a schedule. Of course I will continue to share any medical updates.

Mad's latest VMA/HVA levels are a wee bit higher than they were last month, but our doctor assured me that this is still in the standard deviation for the test, and they are still considering these numbers stable. Standard deviation or not, I hate to see any increase in numbers. I'm hoping they will be back down to previous levels next month. HVA is 45.3 (up from 37.2) and VMA is 31.9 (up from 29.2) for those of you playing along at home. To be cancer free HVA should be no higher than 23 and VMA should be no higher than 18 based on Madeleine's age and weight. When she was first diagnosed, her HVA was 88, and VMA was 133. Wowza!





















My friend Andrea showed me how to put pigtails in Mad's hair.
























She sleeps like this at every nap and bedtime. Isn't that weird? Ryan sleeps like that too.


You may notice from the picture above that Mad is now in a big girl bed. These past two weeks I've been working on painting and decorating her room. I'm thrilled with the way it's turning out. I'll take better pictures of the whole room soon.

October 3, 2009

Stating the Obvious

Things have been really good lately. Madeleine is happy, our days are busy, and we are leading a normal life with very few doctor and clinic visits. Mad's physical therapy went so well that she completed her final session this week. Her therapist is positive that now that she is bending her knee, the only thing left is to continue to build strength in her leg. And we can do that at home. She is continuing to love her gymnastics class (especially since her buddy Cade goes now too!), and we have started swim lessons again as well.

Her latest VMA/HVA markers are pretty stable, not going up, but not going down either. The tumor is stable, not growing. She won't be deemed "cancer free" until her markers are back in the normal range for her age. We know that this is just a matter of time until this happens. We are continuing with monthly clinic appointments to test the markers, and MRIs to check the tumor every three months.

So, things are going well, things are moving in a positive direction. After the horribleness and uncertainty of last year, this year has been positively wonderful.

Then why do I feel so bitter sometimes? I can't really explain it. September - which is Childhood Cancer awareness month, made me angry. This happened to me last year too. The only company (that I know of) that does anything in support of Childhood Cancer awareness and funding is Chili's. Meanwhile, there are pink ribbons on my grocery store yogurt lids and mushrooms halfway through September. Mushrooms. I'm not trying to take anything away from breast cancer awareness, I think it's fabulous that so many companies and organizations are supporting and donating to such a worthy cause, but I'm a little jealous. Where is the support for childhood cancer? These are our children, and two classrooms-full of children are diagnosed every school day.

On a more personal level I've noticed that I feel anxious every time a friend's baby is at or near the four-month mark (when Madeleine was diagnosed). I can't figure it out. I'm not worried about their children, I just feel anxious. It makes me want to tell them all about Madeleine being diagnosed and what that time was like. We were at a wedding recently and a college friend was talking about how his four-month old doesn't sleep. I sympathized with him because we had the same problem for many, many months, but in my head I really wanted to say, "...and four months is when Mad was diagnosed, so...[shrug]" I even thought of the gesture that I would use to convey this message. Am I just being selfish because I want everyone to keep remembering? Am I looking for sympathy? I don't know. I don't have a better way of describing this. Also, we would like to have another child eventually, and the other night thinking about that hypothetical child as an infant brought me to tears. Not because having a newborn would be difficult (it would be), but because that baby would eventually be four months old and I would have to deal with that. Is this post traumatic stress disorder?

All of that said, I'm pretty happy. The moments mentioned above are just moments. And they aren't consuming my life, or making me crazy. I debated about posting this because I don't like to share too much about how I feel, and because I don't want you all to think that I'm crazy... maybe just a little damaged :)

I'll leave you with recent pictures to lighten the mood in here:

























Early birthday present from Grandma and Grandpa!






















Madeleine and her friend, Sophia, at the zoo.




















Trying out the Halloween costume

September 13, 2009

Look at the progress she's made!

Going through some of our old videos this afternoon I came across this from March. This is what Madeleine's walk used to look like:

video

And now:


video

What a difference six months and a lot of physical therapy make!

September 5, 2009

September: Childhood Cancer Awareness Month






You may have to click on the picture to read the text.

Once again Chili's is donating 100% of their profits on Monday, September 28th to St. Jude hospital. No child at St. Jude is ever denied treatment because of their family's inability to pay. Also, all through September you can dine at Chili's, color a pepper, and add a donation of your choice onto your bill. We ate at Chili's last night, and definitely plan on going on the 28th!


September 2, 2009

Pairs

This is my week:




















I am watching my friend's daughter every day this week (and three days a week most weeks). This is an arrangement that I'm very happy with because it gives the girls a friend to play with, and it's also good practice for things like sharing and taking turns. Mad is having a hard time with these concepts, but I hope with practice that she'll get it. We're also dog sitting our favorite Basset Hound (don't tell Humphrey!) this week. So that makes two kids and two dogs. I like to have things in matched pairs. Today was my first outing with all four of them, and it was challenging. I have a new respect for moms and dads of multiple children!


And dog parents of more than one dog!

September 1, 2009

MRI results

The results from last week's MRI show that the tumor is stable, and has not grown any since the last MRI - This is great news!!
The hospital is now classifying Madeleine as "off therapy." This doesn't really mean anything different for us, except that we are closer and closer to "cancer survivor," and "cancer-free" status. It's a great place to be.

The Off Therapy Transition Coordinator that I spoke with reminded me that there are a lot of college scholarships for kids that went through cancer treatment. So, we have that to look forward to. This isn't the way that I would go about securing a college scholarship, but if it works out that way I won't complain. This, coupled with the fact that Madeleine can now count to 14 means that she is Harvard bound!

August 27, 2009

Finally

Sorry for the long blogging hiatus. Although you wouldn't know it from the soaring temperatures, summer is drawing to a close and I've started to get busy with classes for my master's degree, my online job, and various other responsibilities and commitments.

Madeleine had an MRI on Wednesday and we are waiting to hear the results. We've also been authorized for six more physical therapy visits, and Mad has been loving her "play toys with Brynn" (physical therapist) time. During her last PT session she did an amazing job of lifting her right leg and bending her knee. It was the most improvement that I've ever seen.

Sunning the bits in our garden.






















Making dirt angels is her new favorite thing



















Local park/playground




































Enjoying the first tomato from the garden. This kid LOVES tomatoes!
























Mad's new friend, Sophia

August 16, 2009

Race Run

I'm done!

The race went pretty well, and I had a good time. Mostly I'm glad to be done.
























Woke up at 4:14am this morning (one minute before my alarm was set to go off, I think that's my super power because that happens all the time), had a cup of coffee and piece of toast. I left in plenty of time to make it to the parking area (San Diego Zoo parking lot), especially for 5 am on a Sunday. However, I didn't take into account that 8,000 other cars would also be trying to merge onto the 5 from the 163. I was a little worried about missing the last shuttle bus to the start line, but looking at the line of cars behind me I knew that there was no way that they would not pick all of us up. After finally making it to the parking, and waiting in a long line, I boarded a bus which took us to the start line at Cabrillo National Monument. I really wished I had a camera because when the bus pulled up to the drop off area the massive sea of people milling about the parking lot was really a sight to see.

My next immediate concern was finding a bathroom. I think I over-hydrated a little bit this morning, and I'm sure the coffee didn't help. The lines for the bathroom were about thirty people deep, and by this time the race start time was about six minutes away. Needless to say, the race started while I was in line, but this is okay because my personal time didn't start until I stepped over the start line (timing RFID tag on my shoe). I had a lot of time to chat with the woman behind me in line. She asked about my shirt and I told her a little about CureSearch, and how I had raised funds to support childhood cancer research. She told me that she was a childhood cancer survivor. Her parents had enrolled her in an experimental chemotherapy trial, and because of this she was the only child from her ward that survived. I felt like this was some sort of sign; this woman's story inspired me and furthered my belief that I was doing the right thing. So many kids lives are saved because of experimental trials that pave the way for future reasearch which then results in more kids' lives being saved. I was hoping to see her again, but I didn't. I think she was there just when I needed her.

Running a race with 8,000 of your closest friends is a lot different than doing a long training run with no one around. On training runs I can zone out and think about things besides running, and how my body is feeling. This helps the time pass. Constantly trying to get around people, slowing down because of slower runners, finding holes to slip into, it's an exhausting mental workout. By the end of the race I was physically tired, but being mentally tired had just as much of an impact. I did pretty well until the last couple of miles, which were uphill. A gradual uphill, but still, it was hard. My friend Doug met me at some point near the end of the hill and ran with me until the hill was over. That really helped motivate me to keep going. I had been running most of the hill, but was taking occasional walk breaks because I was just so tired. At the top of the hill I saw Ryan and Madeleine, and Danelle and her girls, Kassidy and Audrey. It really did make me feel good to see them cheering me on. And then I ran into Balboa Park and finished! I complete the race in two hours and seventeen minutes, which is right around the time that I was hoping for.

So glad to be done!

August 15, 2009

Ready, Go!

Tomorrow is the big race!

I added the last two names to the race shirt, and this is what it looks like:
























And this is what it looks like in action! (sort of):
























I'm excited about tomorrow!