Shylah’s Milestone Moments

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.

Shylah in her princess dress. She told us that she looks just like Rapunzel. ;)
Shylah in her princess dress. She told us that she looks just like Rapunzel. ;)

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.

Tarah and Shylah before pre-school starts.
Tarah and Shylah before pre-school starts.

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.

IMG_3602
Shylah in the recovery after her CT scan on Wednesday.

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.

Hear, O Lord, when I cry aloud;
be gracious to me and answer me!
                        ~ Psalm 27:7

 

  • Grammy Goodwin

    It has been a blessing and a gift to spend this time with Shylah and family. God has shown Himself faithful through each day. We continue to pray for healing and God’s Presence in this home. I love you all and thank you for allowing me to come along side you in this journey.

  • dkprinzing

    Thanks for the detailed update, Kasey. Your little girl is fierce! And I know she has the inner power to endure the incredible challenge of overcoming cancer. Sending prayers to you and to your family for a fantastic year ahead! Praying for miracles! Pre-K is a BIG DEAL and I’m so pleased that Shylah can experience it just like every other 4-yr-old!