Last night Shylah took her last chemo pill.
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
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
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.
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.