Tag Archives: Lymphoma

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

“This is the life.”

Shylah is doing great!

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.

She has no idea…but this is also what makes this journey with her so Continue reading

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.

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.

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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

 

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