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May 9th: Helping Hands Fiesta for Shylah

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.

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Shylah waiting on the bench for our photographer for family photos this week.

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.”

I’m still getting used to it.

So, I was overwhelmed again when I saw an event pop up on my Facebook feed called, “Helping Hands Fiesta for Shylah.”

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

Sincerely,
Kasey

Check out the “Helping Hands Fiesta for Shylah” Facebook page:

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Shylah Shakes Off Her Hospital Stays

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.

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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.

Happy Birthday Shylah!

Shylah turns 4 today!

Shylah's birthday morning surprise.
Shylah’s birthday morning surprise.

She is so excited.

And so are we!

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.

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circa 2011

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's' first birthday.
Shylah’s’ first birthday.
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Shylah at 1.

Back To The Hospital

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.

Click to watch Shylah during drum time at UC Davis Children's Hospital.
Click to watch Shylah during drum time at UC Davis Children’s Hospital.

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.

Click to watch.
Click to watch Shylah get excited about her birthday. 
Saying goodbye at the hospital is never easy.
Saying goodbye at the hospital is never easy.

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.

151Days Later

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.”

A cool personalized cartoon for Shylah by friend and floral cartoonist Brian Wheat.
A cool personalized cartoon for Shylah by friend and floral cartoonist Brian Wheat.

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

No News, Is Good News

FullSizeRender 12We were in the hospital a week ago for Shylah’s CT Scan. Her last scan was in November of last year, so we were a bit anxious to learn the results of this latest scan. We weren’t told exactly when we might hear from the doctors on her results, but from previous experience, we knew it would take a couple of days.

We tried not to think about it.

When Friday came and went, I told Tarah that Continue reading

Update: CT Scan Today

 

Tarah reads to Shylah as we await today's CT scan and results.
Tarah reads to Shylah as we await today’s CT scan.

It has been since November since Shylah’s last CT scan.  It is hard to describe the feelings of anticipation involved with today. Of course, we believe that the results will be nothing but positive, the affirmation we need to show that all of this treatment is working and that the mass has finally been eliminated.

We still pray for a miracle, though. That moment when the doctors turn to us with that look of disbelief and Continue reading

Shylah’s Strength

Apologies for the lack of updates lately. In someways its a reflection of how well Shylah is doing right now and our efforts to keep up with her and enjoy her. Shylah is getting stronger and gaining weight and I was sharing with Tarah how over the last week we’ve seen little glimmers of the Shylah before all of this. She’s a little over a week into her third round of chemo treatment and we’re praying that we continue down this path of returning health and complete healing.  As her numbers drop, due to the latest chemo treatment, we have to be more and more careful with where Shylah goes and who she is with. In fact, the nurse at the cancer center told Tarah this week, “you know, I wouldn’t take her anywhere.”

 

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Shylah was excited to see her Papa arrive for a visit this weekend. The two of them will enjoy watching the Seahawks game together on Sunday.

That’s tough, especially as Shylah grows stronger. Over these last two weeks she has Continue reading

sad and scary day, prayers needed

Santa's gifts were tucked under the little tree in Shylah's room on Christmas morning.
Santa’s gifts were tucked under the little tree in Shylah’s room on Christmas morning.

Hey everyone, Aunt Courtney here…Shylah has been admitted to the hospital again after only two days at home. She has been running a low-grade fever since yesterday. When Tarah talked with the nurse on the phone, the nurse was insistent – and scary – about the fact that they needed to get Shylah to the hospital right away, and thy’d send an ambulance if necessary. Properly convinced, Tarah packed up and rushed Shylah to the E.R. immediately. Shylah was admitted because of the fever,  and her neutrophil levels being low again. Several tests were run on Shylah today, including for pneumonia. We don’t have a lot of details at this time, but they are looking at a minimum of 48 hours before she’s released. We’d love to see her home in time to celebrate her little brother’s (and best buddy’s) birthday on January 3.  Continue reading

Santa Visits Hospitals Too

Now we know.

The boys woke up Christmas morning to find a note from Santa in Kaden’s stocking that said their presents had been delivered to the hospital; Shylah’s room to be precise.

All together Christmas Day on the 7th Floor of UC Davis Children's Hospital.
All together Christmas Day on the 7th Floor of UC Davis Children’s Hospital.

We learned about this “Santa policy” when Shylah’s lab results came back on Wednesday telling us that she wouldn’t be home for Christmas. If a brother or sister is in the hospital over Christmas, Santa delivers all of the family’s gifts to the hospital room. So, we quickly Continue reading