One More Step - Urban Hike 2013

Although our first One More Step hike at Skyline Ridge was super successful, this year we wanted to be able to better accommodate families with small kiddos that needed to be pushed in strollers, ride scooters or even walk on their own.

We also wanted to find a location that would allow us to hang out after the hike and grab a bite to eat. Golden Gate Park was the perfect choice for all those reasons and more (did I mention that Team V loves SF?!)

Pablove was a crucial part in helping to make this Urban Hike a success.  They worked with us to set up a family registration page, as well as family fundraising pages for our participants.

We also want to thank Jill Ruegge for donating her time to design our cool tshirt and The Finer Line for printing our tshirts and getting them to us in time for the big day.

Together we raised $16K towards our OMS Research Fund! 

It just goes to show you that with a little effort you can accomplish great things. Thank you to everyone who came out to support us. What a wonderful day!

 

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At the car wash

The spring weather has been beautiful... what a perfect day for a backyard car wash!

Truly, Keira and Akemi love any excuse to get their swimsuits on...
the buckets with soapy water and permission to use the hose were a bonus.



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Ultrasound and Dex Pulse #11

Thanks for all the happy thoughts... Keira's ultrasound came back clear.

The technician was super impressed with how cooperative Keira was during the ultrasound.  It took almost 30 minutes and Keira never complained once.  Since she was able to lay so still she was able to get some really good pictures of her organs and everything looked normal, which is what we like to hear.

Keira will have to go back again in six months for a follow-up ultrasound but this was much better than an MRI.  She wasn't allowed to eat until after they were done but no poke and no anesthesia so she was happy when we left to get her sprinkled donut.

A cute little K story...
After Keira was done they gave her the sticker bin and she immediately picked out one and handed it to me.  When I told her that I didn't earn a sticker she said, "but mom I am proud of you because you didn't eat anything all morning, just like me."  She's such a thoughtful girl... I wore my sticker all day with pride.   :)

Our visit with Dr. E today was uneventful.  Keira has been complaining more frequently about headaches.  We're not sure if she's just able to better articulate what is bothering her or if this is something new.  We will continue to monitor her and if the headaches get worse we will check in with her neuro-oncologist.

Keira has handled the dex pulse pretty well this week.  She has moments where she's super cranky and irritable, but I suppose that is to be expected on such a high dose of steroids.  I hate that we have to put her through this every 28 days but I am also thankful that there is something we can do to keep her OMS symptoms away.  These 3 days are a great reminder for why we need to do more to help fund research for rare diseases.  If we don't do something, who will?!

We celebrated the end of dex pulse #11 with movie night - Cinderella.  K's treat of choice - brownies with vanilla ice cream.  She certainly earned it!

Keira's 4th Birthday at Little Stompers

I can't believe Keira is FOUR already!




Naveen was the lucky one to help Keira celebrate (and take pictures) at her Little Stompers celebration. Makena was also celebrating her big day so there was lots of sugar to go around... lucky Mrs. Louise.

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the new "white pill"

Keira started taking an extremely high dose of prednisone just days after the surgery to have her cancer removed.  

That was in October 2010. 

Monday, April 1st was Keira's last dose of prednisone.  We've been trying to wean her off this miracle steroid for 2 1/2 years.  Although we are very thankful that the prednisone was able to help suppress the antibodies that were attacking her brain, long term side-effects for these steroids, especially in a little person, are not good.  We worry about her developing cataracts, osteopenia, and loss of vertical growth to name a few.  

It's crazy to think that she's been taking daily medication for more than half of her little life!  I've tried all the pills and liquid medications that we subject her to and they are pretty bad.  

She NEVER complains.  

Every morning when Keira wakes up she comes out in her pj's, grabs her cup of syringes and takes her medication.  Every evening at dinner, same thing.  I was a little nervous about the change from prednisone to hydrcortisone, especially since this one is a white pill we have to crush and mix with yogurt, but no complaints.  

The hydrocortisone is going to be a daily steroid supplement until we can confirm that her remaining adrenal gland is once again producing steroids on its own.  I have no idea how long that will take or how they will be able to confirm that she's making her own steroids, but the doctors have reassured us that this steroid is minimal in comparison to what she has been taking and is most closely a match for what our bodies make on their own.

It's a little scary to think that we are done with the prednisone.  Keira's body responded well to it and it did what it was suppose to....  but now if she has OMS symptoms we will be in uncharted territory as the doctors do not want to go back to that drug.  We will continue to think positive thoughts that Keira's body is ready for this next step and that the dex pulses alone can suppress her OMS.