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.
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:
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.
We are long overdue for an update here, but grateful to report that Shylah continues to make great progress in her cancer journey. Shylah’s “maintenance phase” of monthly chemotherapy infusions at the cancer clinic continue, but considering the circumstances she sure keeps things positive.
Some of you might have seen the video Tarah posted from the cancer clinic in February. If you didn’t know better, you might think she was hanging out at the spa.
As you can imagine, this journey with Shylah can feel extremely overwhelming at times. October will mark the first anniversary of Shylah’s diagnosis of non-hodgkins lymphoma. A year’s worth of chemo treatments, “pokes,” “little hospital” visits, “big hospital” stays while trying to keep things as normal as possible at home has certainly been a lot to manage. However, we certainly count our blessings. She is with us. She is tough. And she is responding to the treatments.
This week and last week have been a series of milestones that I wanted to quickly share with all of you who continue to walk alongside us in this journey. Your prayers and support have been a tremendous source of strength and encouragement and we really appreciate each and everyone of you who continue to reach out, text, call and message us.
First, last Tuesday, August 25th, was Shylah’s last treatment of her 6th round of the intensive chemo rounds. We are so grateful that these are over! The 5th round was terrible and we just could not wait for her to be done with this last round. This means she goes into the “maintenance” phase. This is basically a once a month chemo infusion schedule for the next two years. That’s right, two more years of this lighter treatment. She starts this on September 11th and she won’t be done until 9/11/17. She will be six years old at that point. From there, it will be another two years before the doctors will consider her “free from cancer.” They won’t say “cured,” but at that five year mark, they are comfortable to say she is “free from” and that’s it. Essentially, at that point, they are 99.9% sure that the cancer she’s had is gone. However, they are quick to warn us that it doesn’t mean other cancers won’t surface later. Nice, right? This is our new normal.
Second, last Wednesday was Shylah’s first day of pre-school. After prayerful consideration and consulting with her doctors, we determined that Shylah going to school would be a good thing and a important step forward for her. Are there risks? Sure. However, we feel that the positives outweigh the negatives. It will help Shylah and all of us, to have her out of her bubble at home, engaging and meeting new friends and living a more normal 4 year old life.
Of course, she loved it. We are blessed to have the support of her teachers and the River City Christian pre-school program. They have gone out of there way to accommodate us and Shylah.
Finally, yesterday was Shylah’s latest CT scan. Of course, even a year later, she’s still afraid of the machine she calls the “doughnut” and has to be sedated in order for doctors and technicians to do the scan. I’m traveling for work this week, so it was very hard for me to be away while this procedure took place. I normally stand in the back with the techs to see what I can see from the scan. I’m no radiologist, but I know what I don’t want to see and that is why I like to be there. Based on all we know, I only assume that things have gotten better, meaning the chemo has destroyed this disease to the point that only an image of scarring and scar tissue would remain to be seen, but we wait for the full report.
So, I’m writing to ask for your prayers. Prayers of continued healing over the next two years of maintenance, prayers of protection while she is at pre-school and specifically prayers for the results of her CT scan. Pray for a miracle, pray for this to go away, pray for Shylah to be healed.
I also want to acknowledge and thank Raylene, Tarah’s mom. She has been with us, living with us, helping us and praying with us and for us these past three months. It has been a huge blessing and help. We can’t thank her enough. She has carried a lot of water for us these past three months, or should I say has done a lot of dishes these last three months, that has allowed us to do things and be parents to all of our kids that would not have been as easily accomplished otherwise. She leaves on Sunday to drive home to Portland, so please pray for her safe travels as well.
So many of you have been supporters and prayer warriors all along the way, we know we’re not alone. God bless you. We are so grateful for all of you.
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.
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.
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.”
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.
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
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.
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.
I continue to be amazed by the generosity of our friends, family and complete strangers.
While I would not wish childhood cancer on any family, I would want every family going through such a trial to experience the care, concern, love and support our family continues to receive along this long road of battling cancer with Shylah.
So many people have done some many things for us since Shylah’s diagnosis in October, that we’ve literally not been able to keep up or keep track. Personally, I struggle with this because ideally I would want to reach out and thank everyone of you. In fact, in the beginning, I was focused on repaying everyone until a good friend came alongside me to say (and I’m paraphrasing), “you can’t, don’t try, just let it be. Your feelings are a “guy thing,” but trust me you’ll get used. You have to.”
A fundraiser is being organized in Shelton, WA, my hometown, for Shylah.
What is more amazing is that most of these caring people who are organizing and attending have yet to even meet Shylah. This makes it even more difficult for a father to express the sense of gratitude that wells up in you when you think about the sacrifice and selflessness involved in planning and organizing an event for a little girl you may only know through Facebook or a blog post. It is amazing, really.
I know not everyone will be able to attend this event, but this event is inspiring me to say thank you again, to everyone.
For the socks, the books, the meals, the gift cards, the donations, the mountain peaks, the game day peanut sales and bake sales; thank you. I can’t repay you all. I can’t even thank you all individually, but we are grateful. Every card, box, call, message and text has been a source of encouragement during such a difficult season in life.
As Shylah enters her 5th round of treatment, we are encouraged by all of you and we live with the hope that God will see us through this and that His grace and mercy will be extended to Shylah and our family and that her life will forever be an inspiration of the hope and peace we find in Jesus Christ.
What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? ~ Romans 8:31:32