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May 12-18

This Week

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Hi Friends and Family,

 

Here is an update on Braden:

 

Braden is now 15 months post treatment and just had a check-up last Monday.  I am so grateful to report that his blood work looked great.  All his levels were in the normal range.  I can’t even explain the feeling when the doctor comes in the room and hands over the lab results and says that everything looks great.  We were also told that we can now come back in 4 months.  So, his next check-up will be in June.  It feels so good to be spacing out these appointments more.  Our doctor also explained that in November (when he hits the 2 yr post treatment mark), we will transition to the survivorship clinic.  So, we will no longer be having oncology check-ups.  We will be on the “survivor” side of the clinic which is so cool to think that is on the horizon for us.  At those check-ups, they will still check his blood work but they will also begin partnering with other specialists that will come in and check him more for side effects of the chemo and not active oncology monitoring.  It feels really great to hear them talking about all the “survivor” stuff and even plans for how they will monitor him through age 18.  We are in such great hands at PCH.  We are so thankful.

 

Also, in November Braden had an echocardiogram on his heart.  It is essentially an ultrasound of his heart.  He will get these done every 2 years as a part of his clinical trial.  The chemotherapy used to fight AML can be really hard on the heart and can cause cardiac damage.  The clinical trial that he was a part of used the same type of chemo that is standard protocol, but it was delivered in a different way that had shown success with beating AML but also minimizing cardiac toxicity.  Thankfully the results of the echo showed that everything looks great with his heart, so we are hoping that his heart continues to look healthy as time goes on.  The doctors did warn us that often times the heart damage can be delayed and appear later in life.  However, we’re choosing to praise that his heart is currently looking healthy and not showing any sign of damage.

 

This week at Braden’s appointment something really struck me, and I have to mention it here because it stood out to me so much.  As we were in the waiting room, we watched many families coming and going.  So many kids were visibly sick and currently in treatment.  Most were in wheelchairs because they’re so weak, they were so pale and gaunt, and very frail.  They also wore beanies to cover their bald heads.  It was so sad watching these kids of all ages who have been affected by cancer.  It brought all the memories back of Braden’s treatment.  It was interesting though because although each of these kids have reasons to scowl and be angry- they were all smiling.  Nick noticed as well and commented to me about it.  How amazing is that?  Even in the midst of a battle, they are choosing to smile.  It was incredibly inspiring!

 

Another exciting thing for Braden is that he is going to a summer camp at the end of May that is hosted by Phoenix Children’s Hospital for kids that have been patients at the CCBD clinic (Center for Cancer & Blood Disorders).  All these kids head up to Williams for a week of fun together at camp.  All the camp counselors have also been patients of the CCBD clinic themselves, so they can relate to these kids and what they’ve gone through.  Braden is super excited, especially for fishing and archery.  Braden’s doctors will also be volunteering their time to come and spend the week with these kids, so it’ll be nice for them to see the kids outside of the clinical setting and just see them being kids and having fun.  We are all super excited for this opportunity and so grateful that PCH offers a camp like this.  He will have so much fun!

 

We are so grateful for your continued prayers and support.  It means the world to us.  Although we never wanted cancer to be a part of our story, we are still confident that all things happen for a reason.  God has done so many great things through this, and we know that he will continue to use us and this experience for his glory.  Please let us know any way that we can support you and encourage you.  You all have been there for us, and we want to be there for you.  Don’t hesitate to reach out.  We love and appreciate you all so much!

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