Good morning readers & happy Monday. Today on the blog I am featuring a sweet little boy & his beautiful mom since September is childhood cancer awareness month, although every month should be really!
I actually met Sylvia, Rhett's sweet mama in middle school. She is one of the strongest mamas I know & is beautiful on the inside & out. Rhett was diagnosed with High Risk B Cell/ALL (Leukemia) on September 5, 2014. Sylvia was kind enough to take the time to tell me a little bit about Rhett so I can share with you all for awareness, because childhood cancer just doesn't get enough of that!!!
What would you like people to know most about childhood cancer?
Childhood cancer is NOT rare. 46 Children a DAY are diagnosed in the US, only 4% of nationally allotted funds to the National Cancer Institute (NCI) go to childhood cancers as a whole, and the most horrifying statistic-- on average 7 children lose their battle to cancer every day. It is the number one killer of children and the least funded. There is a lot to it-- but bottom line is awareness is low and pharmaceutical companies do not have funding for developing new drugs, therefore childhood cancer drugs are not profitable for them to develop.
Pediatric Cancer is treated completely different from adult cancers. To start saving our kids, and truly develop a cure (as of this post there is NO cure for pediatric cancers, only treatments) it will take years of research and huge backing financially by the government. 3 new drugs have been approved since the 1980's specifically for pediatric cancer. It truly is NOT enough! We can do so much better!
Lastly- September is Childhood Cancer Awareness Month. I challenge you to go GOLD to spread awareness because truly, our children are more precious than gold.
What does Rhett's daily care look like?
Morning Oral medications:
-anti-nausea meds (to try and keep the vomiting limited)
-appetite stimulator (try and increase caloric intake so his weight is stable)
-anti-acid meds (to try and save his intestinal lining from all the drugs)
-potassium supplement (his anti-fungal depletes his potassium, irregular potassium levels can cause heart arrhythmia)
-Blood pressure medication (he was in kidney failure in October 2014 and we are still dealing with ramifications from those events-- blood pressure is a big one, regulated by the kidneys)
-a medication that helps hold on to the potassium that is depleted by the anti-fungal
-blood thinner (twice daily shots in his leg for a blood clot that formed during an infection-- 6 month treatment for these)
-oral chemo once a week
-steroids 2x a day for 5 days every month
-another chemo we wake him up in the middle of the night to give as it must be given on an empty stomach.
I have to flush his PICC line (similar to a port) and lock it with heparin, a blood thinner.
We pack up drive an hour to clinic for anti-fungal treatment infusion that lasts from 4-6 hours.
Come home and prep dinner while he plays with his siblings.. Start anti-fungal infusion through IV PICC line with an external pump and runs for 1.5 hours. We eat dinner, then bathe. He uses a antiseptic cleaner after his bath to try and keep skin free from bacteria. Once a week we have to change his PICC line dressing and caps. Bed at 8:30 and wake him up 2 hours later for chemo and shot! And then we start all over!
What are your plans for Rhett's 5th birthday in just a few days?
Rhett turns 5 on September 13th! We honestly did not know if he would make it to see this day a year ago. He was on life support, went into cardiac arrest 3 times.. Just a very severe and seemingly hopeless situation. So we are overjoyed to have an opportunity to celebrate his birthday. We are having healthy family and friends over to visit and make memories. We will have a cake and plenty of Lightning McQueen and nerf guns for sure!
Is Rhett attending school this year?
Rhett and the rest of the crew are being homeschooled this year. With him at clinic 5 days a week, traditional school is not an option for us, and homeschooling is a better fit for our family after last years events. He loves it!
How can friends, family, & #rhettbull supporters help the most?
The best thing supporters and friends can do is stick with us! The journey is not over and support is so high in the beginning but tends to fade. We need prayers and phone calls STILL. We have probably not been the best of friends since he was diagnosed because we have just been trying to survive.. But the little things (meals, movies, gestures etc) help so very much on this long journey. We are so thankful for everyone that has shared his story, bought a shirt and loved on us. Thank you thank you! Best thing you could do? Spread the word and create awareness! We won't have a cure until the world knows-- and I promise these fighters deserve it!
How different is life since Rhett's diagnosis?
Rhett's life is 100% different since he was diagnosed. His beautiful brown eyes are so wise. His innocence, in a way is gone. He knows what a lung CT looks at and can pick out a brain MRI. He can flush his PICC line and give himself his shots. He swallows pills the size of his pinky with no sweat. He didn't walk for three months so physically he is weak and unstable when he walks. He had severe neurotoxicity from one of the chemos & it affected his speech and coordination immensely. He doesn't process as fast as he did before all the medicine and chemo, so that is a challenge but he is getting better and stronger every day! One of the hardest thing for him has been not being able to play and run like he used to with his siblings and friends, because he is limited. He can't get dirty, can't swim, struggles to walk and overheats easily. Treatment has also been at times, terrifying for him. He hates being put to sleep, spinal taps are painful, chemo makes him sick, and always -- needle pokes are excruciating to a four year old.
Even with all the struggles, we celebrate the victories. All of them! One step, one bite, one day at home. Our perspective is forever changed because we have experience surviving hour by hour praying we just got one more hour with him. Childhood cancer is devastating.. But we have so much pride in our son because he is a hero! He has beat ALL the odds! He is our warrior, our fighter--our Rhettbull.
Thank you so much Sylvia for sharing your story & your sweet Rhett with us. I have loved being apart of your journey & rejoice in all the victories!
But may this September be a reminder to all about the importance of childhood cancer awareness. There are always ways to reach out, get involved, & spread the word.
Thank you all for taking the time to read #rhettbull 's story & I encourage you all to follow their journey on Facebook with the link below.
You can also use the hashtag #rhettbull & @therhettbull on Instagram to find more pictures & progress of sweet little Rhett.
You can even join in Sylvia's awesome fitness challenge this month (we have!) workout everyday of the month & wear something gold while doing it! 30 workouts in September! (Or if you are behind do 2-a-days)
And if you ever see a rainbow, please think of sweet little Rhett & even better, shoot over a picture of it to the Rhettbull Facebook page.
Love,
Morgan
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