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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…

Two Years Later…Shylah Gets Her Wish!

It was October 6, 2014 when Tarah rushed Shylah to the ER because of complications with her breathing.

2 year Anniversary

The next day the doctors shared with us that it was cancer.

We would spend the next 25 days at UC Davis Children’s hospital, as Shylah underwent tests, procedures, scans and treatments to Continue reading

Shylah’s Invitation to the Wishing Center

On Friday Shylah spent her morning at Make-A -Wish Foundation's Wishing Center.
On Friday Shylah spent her morning at Make-A -Wish Foundation’s Wishing Center.

The Make-A-Wish Foundation of Northeastern California and Northern Nevada invited Shylah and the whole family to their Wishing Center in Sacrament on Friday.

She was so excited.

Friday marked 662 days since that fateful day in October when we learned that Shylah had cancer. So, you can imagine how exciting and how meaningful Friday’s visit to Make-A-Wish’s Wishing Center was for all of us.

At this time last year, we were in a very very different place in her journey. In fact, Continue reading

See You In Shelton!

We know that this is a very busy time of year, but from 2-5pm today  (Saturday the 26th) we are planning a casual open house at my parents house in Shelton.

Shylah Open House (1)

We would love to see and thank as many of you as possible for your support and prayers for Shylah over this past year. Please consider coming by, we would love to see you.

Love,
The Cronquists

One Year Later…

What a difference a year makes!
What a difference a year makes! Shylah is winning her battle against cancer.

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Today marks the one year anniversary of that fateful visit to the Emergency Room.

Technically, Tarah and Shylah arrived at the E.R. on October 6th, but it wasn’t until the 7th that we actually knew  Continue reading

Moving to Maintenance Phase!

Shylah and Lance at the little hospital together for Shylah’s appointment with Dr. Pawar.

Shylah’s CT Scan appears to be as good as her doctors would hope for at this point in the process and Shylah is moving ahead with the maintenance phase of her treatment. Unfortunately, I wasn’t able to be at this appointment, but the radiology report appears to suggest that all that might be left of her tumor is the scar tissue that they would expect to see from this past year’s chemo treatments. Of course, they are cautious with how they convey results, but obviously we are happy with what feels like progress and that she is moving into the maintenance phase vs the alternative direction.

The other great news that we were not expecting was the news that Shylah will only have one year of maintenance treatment and that at this time next year she would be done with her chemo treatment. This is a bit amazing to me because we had been under the impression from many conversations that it would be a 2 year phase. So, to have 12mos left feel like an answer to prayer and we are so grateful for this news.

So, thank you for your prayers over this past week. We believe your prayers and petitions for Shylah makes a difference and we felt that difference this past week and God’s presence amidst our anxiousness. Thank you.

Today Shylah begins her maintenance phase treatment. So Tarah and Shylah are heading to the little hospital. Please pray for them today.

Big Hospital, Little Hospital

I realized this morning that I haven’t updated the blog since Shylah went into the hospital the weekend before last. Those of you that follow Pray For Shylah on Facebook saw her being discharged via that short video I posted as it happened. This appears to be a reoccurring pattern of mine, to post something quickly, but then not come back to the blog to provide a more full report on how she is doing and where things stand. I’m sure you all can understand, but I am sorry about that. The encouragement and support that we continue to experience from family, friends and people we don’t know is humbling and wonderful and not something we take for granted.

Okay, that’s off my chest.

Shylah talked me into a late night snack on Sunday night. She’s impossible to say no to, especially when she is dressed as a princess. Her wish is my command.

Since being discharged, Shylah’s continued to keep good pace with her treatment schedule and avoided further hospital stays. Yesterday was another treatment at the cancer clinic, starting with a spinal tap in the morning at the surgery center.  This is what we call, “routine” now and our goal is to keep her out of the “big hospital” and maintain her schedule for the “little hospital.” Shylah calls the Children’s Hospital stays on the 7th floor, the “big hospital” and any visit to the cancer clinic, her time at the “little hospital.” The hospital and the cancer clinic are across the street from each other and Shylah’s description of the two are quite literal, with the UC Davis hospital being 10+ stories and the cancer clinic only two.

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Shylah works on an art project while at the cancer clinic yesterday.

As I’ve said before, this fifth round has been the toughest on Shylah since the first round. We were warned that this would be the case and now we’re experiencing the side effects, the mood swings and consequences of this tougher chemo combination.

Thank you for you’re care and concern, even when I’m not able to get to posting a new blog. I need to post a follow up report on the fund raiser for Shylah in Shelton. I was able to travel home to be there and it was amazing. The support, the hugs and the generosity was overwhelming and deserving of its own blog post.

So, thank you all for your continued love for Shylah and our family. You are all such an encouragement during these days when it can be difficult to see or hear God’s answer from all of your prayers.

I like what author and friend Michele Cushatt says about this in her book Undone, “sometimes God fights for his girl in ways she never imagined.”

I know He is fighting for her.

– Kasey

Update From The Hospital

Last night we chatted with Shylah and Tarah via FaceTime. Shylah and Lance have a special brother/sister relationship and it is fun for all of us to watch them “catch up” virtually.

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Shylah FaceTiming with Lance from her hospital bed at UC Davis Children’s Hospital.

Unfortunately we still do not have any answers on why she is feeling the way she is. Fortunately there is no more fever and the fluids and antibiotics are helping. However, we are waiting on some more conclusive test results before they start talking about going home.

The good news is that if they do not find a bacteria infection, she could be out early Sunday. The bad news is that if they do find something or her blood counts aren’t where they need to be, they won’t let her go home until things are resolved.

Please pray for Shylah’s comfort and healing. Specifically, it would be a wonderful answer to prayer if she could come home late today. Please also pray for Tarah. These hospital stays are tough and never get easier. In many ways they are increasingly uncomfortable and hard.

Thank you for hanging in there with us and for your prayers and encouragement. For some reason the hospital seems to be a magnet for us around holidays, but we’re fortunate to have Grammie, Grandma and Papa all here to help during this stay.

Thank you all.

“May the Lord answer you when you are in trouble! May the God of Jacob protect you! May he send you help from his Temple and give you aid from Mount Zion. May he accept all your offerings and be pleased with all your sacrifices. May he give you what you desire and make all your plans succeed. Then we will shout for joy over your victory and celebrate your triumph by praising our God. May the Lord answer all your requests.” – Psalm 10: 1-5

Going Home For A Fiesta

This weekend is going to be a special one. Not only is it Mother’s Day on Sunday, but tomorrow night (Saturday) is the Helping Hands Fiesta for Shylah in Shelton at the Shelton Yacht Club. An amazing group of people have orchestrated a gathering of friends at the Shelton Yacht Club to help our family through Shylah’s battle with childhood cancer.
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It will be a homecoming that I’ll never forget and I’m looking forward to thanking everyone personally.
Shylah wanted to come too.
As I was packing my bag last night, she asked if she could come and for a moment I imagined how much fun that would be—to have her with me.
“Not this time, honey” I told her.
Unfortunately, the intensity of her chemotherapy treatment during round five is a lot like the first round, including steroids again. The bright side is that this time she is healthier, she can walk and she didn’t just spend 25 days in the hospital being poked and prodded, so her mood swings (from the steroids) are more manageable for her…and us.
The bottomline is that we need to get through the 6th round before we can take her anywhere too far from UC Davis and her doctors.  After round 6, which should take us through the summer, Shylah will enter the “maintenance phase,” which requires monthly chemo treatments over the next 18-24 months.
She may not be able to attend this Fiesta, but she is making great progress and we’re grateful for the “Helping Hands,” that are making Saturday night a reality.
I know it is Mother’s Day is a busy and important weekend for families, but I look forward to seeing everyone who is planning to make it Saturday night…and the “Shylahloopa” ice cream by Olympic Mountain…and the hugs…
If you’d like to get Fiesta tickets or more information, contact Patti Tupper at 360.791.9716 or Michelle Corral at 360.561.7998.
Saturday May 9th at 5pm to 8pm
Shelton Yacht Club
701 E. Pine Street
Shelton, WA 98584
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