Tag Archives: Make-A-Wish

She Did It!

Last night Shylah took her last chemo pill.

Last one...
Last one…

And we are celebrating today!

She did it!

After 400+ days of having to take these chemo pills daily, she’s done. We couldn’t be more proud of her and we’re letting her know by celebrating her all day.

It has been 866 days since Shylah’s fateful diagnosis, so to be in this place, to see her dancing and thriving and winning; it is such a blessing.

This year has been one milestone after another.

No More Infusions

Shylah had the sweetest send off by the staff at the cancer clinic. We were blessed to be surrounded by so many nurses and clinic staff that loved Shylah.
Shylah had the sweetest send off by the staff at the cancer clinic. We were blessed to be surrounded by so many nurses and clinic staff that loved Shylah.

Starting on January 31st she had her last infusion at the cancer clinic. That was certainly a big deal for Shylah and mom, who have spent many hours at the clinic for the check ups and infusions over the last two years.

No More Port

The doctors let us take home a replica of the port that Shylah had for the past two years.
The doctors let us take home a replica of the port that Shylah had for the past two years.

Then just a few days later Shylah was able to have her port removed. Wow, what an experience that was.

Shylah was still three years old when she had her port put in.  So it did catch Tarah and I by surprise when during post op Shylah started crying when we told her that it was gone. Of course, at this age, this wasn’t an uncommon reaction, the port was all she knew. However, we didn’t get the memo going in and assumed she would see the milestone of the removal like we all did. Overall, she did great and after some tearful conversations about what it was going to be like being “port free,” Shylah began to relax into the change.

Recovery was quick! After all of this, the perseverance of kids still amazes me. She was wheeled out of the hospital in the morning and by the afternoon she was dancing away to her favorite My Little Pony show.

No More Pills

Shylah’s “maintenance plan” included chemo everyday. She would have infusions at the cancer clinic every month, but we also had to administer a combination of oral chemos at home. One of them (mercaptopurine), we had to give her every night before bed and an hour after she had eaten. For the past 400+ days you could be assured to hear Tarah say at some point after dinner, “okay, Shylah, this is your last chance to eat,” or if she was eating something, “okay, Shylah, this is it, you can’t have anything after this.”  Ninety percent of the time, this was fine with Shylah, but of course it was a drag. Her brothers could enjoy a spoonful of peanut butter or a bowl of cereal or anything they wanted to fill their tummies right before bed. Not Shylah. She had to take her pill.

Those days are over!

To celebrate today’s milestone, Shylah woke up to balloons, decorations and her “fight song”.

Tonight, she eats! Whatever she wants for as long as she wants. We are going to have an ice cream sundae bar and let her add her favorite toppings and relish in the fact that she can eat whatever she wants as long into the evening she wants.

Grandma and Papa are flying down from Washington to help us ring in this “new new normal.” We are so thankful to be in this place, to see her doing so well and to have this chapter of her journey behind us.

Prayer Request

From here, Shylah will have a CT Scan this Wednesday. It has been a year since she’s had a CT, but based on every blood test and checkin, we expect nothing but good news. However, we would be grateful for your prayers for this important scan. Please pray with us, that the scan would be clear that there will be no sign of any cancer remaining in her body.

 

After the scan, Shylah’s journey will continue. As many know, it is the five year anniversary  that is the “all clear” milestone that we are working towards next. While Shylah’s chemo treatment ends (yesterday!), the next two years will be a period of check ups and scans to monitor the treatment’s success. Doctors refrain from using the words “remission” and “cured” and it isn’t until Shylah gets to October 2019 where they will allow us to say that Shylah is “free from this cancer.” At that point the statistics give an almost 100% assurance that Shylah won’t have to face down this type of cancer again. God willing.

So, I hope you’ll join us in celebrating today. All of you have been such a source of strength, prayer and love. The past two and half years have been painful and beautiful. As a family we have experienced such a rollercoaster of emotions and experiences that would have been made more difficult had it not been for all of the different ways our friends, families and even strangers who have joined with us along the way, walked with us, fought with us, prayed with us.

We can’t thank you enough.

 

Part 1: Princess Shylah Meets Olaf

Last week I did my best to share much of Shylah’s Make-A-Wish trip to Disneyland on Facebook. Before we left a friend told me to “unplug and enjoy,” but for everyone who traveled through the dark days over the past two years, Shylah’s Make-A- Wish experience was an incredible high point for her that I wanted to share while it was happening. From the Make A Wish breakfast announcement,  heading down the road in the RV, arriving to Disneyland and meeting Olaf, this was a memory making trip we will never forget.

Now that we’re back and in the comfort of our own wifi, I wanted to share some more about this amazing experience. Starting with the incredible wish reveal on Wednesday November 2nd and then leaving on the 9th to Disneyland in Shylah’s “Princess RV.”

I may need to share the journey in parts. So, I’ll try to be as concise as possible, but with the family schedule (church, chores, etc.), I may need to publish in parts.

Wake Up for Wishes

Shylah was the Northeastern California and Northern Nevada chapter of Make-A-Wish’s 6,000th wish. To recognize this milestone for Make-A-Wish, Shylah’s wish was revealed “live” in front of 600 people who were attending the “Wake Up For Wishes” event at the Hyatt in Sacramento. It was the first time that the chapter had revealed a wish like this live.

To introduce Shylah, her journey and her wish, Make-A-Wish produced this wonderful video:

Our family was then invited on stage where Shylah was asked about her wish and then two princess joined her on stage to escort her to her wish.

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Shylah’s “Princess RV” was right outside the Hyatt and the princesses took her out there while guests watched a live feed of her reaction. News stations were also on hand to capture the moment.

Here is a live broadcast from Good Day Sacramento:

Another Good Day Sacramento Feature:

Shylah’s wish was also featured on CBS 13:

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It was quite the morning and emotional in many ways. To be at this point was certainly a milestone in Shylah’s journey and we felt so blessed to be in this place and enjoying this experience with her.

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to be continued…