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.
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
I’ve been remiss in not updating everyone since Tarah and Shylah came home on Thursday night. Honestly, it was a pleasant surprise and totally unexpected. These hospital stay infusions have usually required extra time for Shylah’s body to recover and hit the numbers she needs to be released.
She is doing great and in great spirits. It is almost like she knows that this last stay in the hospital will be her last for these intensive infusions. The team at UC Davis Children’s Hospital was great. The staff gave her a warm birthday greeting when she arrived on Sunday, with fun gifts and then celebrated her release on Thursday. There are no more planned overnights for chemo treatments! The only foreseeable reason she would need to be admitted again will be if she fevers. Of course we’re still going to be looking at a long road of outpatient treatments, but this was a milestone moment on her journey.
We all said goodbye to Grammy on Friday and said good morning to Uncle Guy and Aunt Robin this morning. They arrived late last night and the kids were so excited to see them this morning. The extra help is such a blessing.
So, after almost a week in the hospital, Shylah seemed to be able to “Shake It Off” while she made cornbread for dinner and rocked out to Taylor Swift (I like how she stirs to the beat).
Thank you all for all of the birthday wishes. She had such a wonderful birthday, not one we expect her to forget. And thank you all for your continued prayers. We are blessed by so many of you who continue this journey with us through childhood cancer. Thank you.
In fact, we all stayed up late last night preparing the house and few gifts for her Birthday morning. Kaden was so excited to be celebrating Shylah’s birthday that he insisted on staying up late last night to help us decorate. He was a big help.
The theme…Frozen, of course!
So, we’ve started celebrating this morning, but Shylah has another hospital stay that begins today. Once again, she and Tarah will spend the next three to four nights in the hospital for this scheduled treatment that requires 24hr care and attention to the infusion process. Not the best timing, but that means we’ll just have to make this “birthday week,” culminating with a birthday party on Sunday after she returns home (hopefully by Saturday).
Between Easter Sunday and her birthday today, we are filled with hope and gratitude. We are so grateful for these four years with Shylah. We are so grateful for God’s promise. This battle can be dark, scary and overwhelming, but to watch her sing, raise her hands and worship with us on Easter Sunday provides perspective on what is really going on here and who is in charge.
Today, we celebrate and thank God for Shylah. She is a blessing to us.
Happy Birthday Shylah!
“Give yourself to the Lord; trust in him, and he will help you.” ~ Psalm 37:5
“Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God, who made heaven and earth, the sea, and all that is in them, who keeps faith forever.” ~ Psalm 146:5-6
Shylah was admitted back into the hospital for another planned chemotherapy treatment for this round. This is the third of four planned hospital stays that require this infusion process that requires the overnight stays and monitoring.
Shylah is doing great. In fact, she even said that she was excited to play in the playroom on the 7th floor and go to music time. What a change that is! In October, we couldn’t get her to go out of the room. I’ve learned a lot from the staff at UC Davis, including Child Life staff who were extremely patient with Shylah’s attitude and frustrations in those early days, knowing full well that she was likely to come around when the time was right and she was feeling better.
Shylah continues to gain weight and grow stronger despite the chemo, which is very encouraging to us. She is super excited about her birthday too. Yesterday afternoon she burst into my office with her brother and a couple of their friends to tell me all about it. It was so fun, I had her repeat it so I could capture it on video.
Dropping Tarah and Shylah off is always hard though. I’ve noticed a pattern with Shylah too. While she is excited about the playroom and music time, the closer to the hospital we get the quieter she gets and then when we’re unloading to go in, she no longer seems to happy about going in. Of course, this makes sense. I can only imagine what she must be thinking as we park the car at the hospital again. It doesn’t matter how many times you go, the hospital will never be home. I know I’ll never get used to dropping of my girls for extended stays there.
However, we are extremely grateful for the care and the treatment that Shylah is getting and the hope we have in her continued recovery and we appreciate all of your continued prayers for Shylah, Tarah and our family over these next four days and throughout this journey. It means a lot.
I also want to ask for prayers for three other people that are also walking through their own battles with cancer. It is not a club you want to be a part of, but you certainly find yourself akin to those families facing similar afflictions. The Kalin’s, Cushatt’s and the Throop’s could all use your prayers right now.
Magnus Kalins is battling leukemia at Los Angeles Children’s Hospital. His mother Anna works with me at the Cut Flower Commission and I still can’t wrap my mind around the odds that both of our children would be diagnosed with cancer in the same year. Magnus is a tough kid and has been in the hospital for over 3 months. Recently he suffered a bit of a set back, but he is back on the road to winning this battle. Please pray for Magnus and his family.
I met Michele Cushatt at a work conference I attended. It turned out that we have mutual friends and a love for the Lord. An author and a speaker, Michele’s battle against cancer has been a very transparent journey that has provided me with hope and determination during our journey with Shylah. She is a strong and faith filled person that could use your prayers as well. Please pray for Michele and her family.
Adam Throop is a friend from college (Westmont) who also married another friend from college, Mindy (McKinley). That tended to happen at Westmont. They have two beautiful children and recently moved their family to SoCal so Adam can continue to get the best care possible during his battle with cancer. My heart aches for their family each day. I’m confident in God’s healing mercy and that Adam will get through this, but I know this period of time is extremely hard on all of them. I’ve also been inspired by their faith and encouraged by their strength. Please pray for Adam and his family.
We hope to have Shylah and Tarah home on Saturday. We’ve got a birthday to plan!
Thank you for all of your prayers and those for Magnus, Michele and Adam.
It has been 151 days since our lives were changed forever by this battle against Shylah’s cancer. The good news is that she is at her strongest point that she’s been at since this began back in October. Shylah is gaining weight, she’s increasingly mobile and she’s in great spirits. Of course there are weekly “pokes” by Shylah’s home nurse and regular visits to the Cancer Center at UC Davis, but this is her new normal. In fact, it has been amazing to see how Shylah just adapts to the schedule of chemo treatment, pokes and hospital stays. She calls the UC Davis’ Cancer Center, “the little hospital,” and the 7th floor at the Children’s Hospital, “the big hospital.”
We are in the middle of the 4th round. This round includes planned hospital stays where they will administer chemo that then has to be Continue reading →