Serendipity and Emiliafest
Serendipity, coincidence, godcidence, luck, whatever you call it. If Charlotte's first clinic check up post transplant today had gone as planned, I would have never been sitting where I was when both the founder and the CEO of Cannonball Kids Cancer (CKc) foundation walked in to Duke. And I had hoped to meet both of these women one of these days.
First of all, last night and this morning were unfortunately a bit dramatic. Our discharge nurse spent time with me here at the apartment yesterday evening to walk through all our supplies as well as help me set up Charlotte's IV nutrition for my first time to run overnight. I had everything ready. Right before tuck in, I hooked her up and started her pump. I turned my back to grab her book and in a matter of seconds there was a bowling ball size space on the bed of blood. She sleepily smiles feeling nothing thank god as I quickly spring to action clamping her line and assessing the IV. The On call nurse walked me through what to do over the phone. It was determined there was most likely a flaw in the Y shaped attachement that connects her TPN and lipids to her line. I had an extra part and got everything working. Phew. Then this morning, the nurse showed up to be there for my first lab draws and cap changes alone out of the hospital. Sort of like QC to be sure all was done properly. Charlotte's hand accidental grazed her open line while I was changing her cap and this must be done very sterile. 2 strikes for mom. Then, I had a saline flush malfunction and the nurse had to assist me in this as well! Third strike! I kid you not, after Charlotte quietly observing my reaction to the nurse she stopped us in our tracks and said these exact words:
"It's okay mommy! Relax! You doin' your best!" I about crumbled into a heap of tears. Yes baby girl, I'm doing my best. You deserve nothing but. Mommy will get better....I hope?!
So off to clinic we go with vials of blood and a bounce in her almost 3 year old step. Not thrilled to have to go back to the hospital at 9:30 am after we were just discharged yesterday afternoon, but she pulled a Charlotte and drank the lemonade she tends to make from any lemons. Once we arrived, the team decided based on all the follies from last night and my cap change this am, they would do blood cultures on both her lines and we would need to spend several hours getting an antibiotic IV drip just to cover our bases in case her line was contiminated. Our plans to meet one of her BFFs, Brady, and his mom (one of my BFFs) at our apartment playground would have to be postponed until next week. I felt horrible. But while I felt horrible, Charlotte happily colored, played ponies with me, munched on a snack (yay!), played a ukulele and bongos with a music therapist, then did a water color painting at the art table. In her little mind, what's there to complain about?! She took a nap during the antibiotic infusion and woke at 3:30 ready to roll!
However, if she didn't need this additional step in clinic today, if everything had gone as planned and she didn't need the 2 hr antibiotic administered, then I never would have been sitting where I was when 2 amazing ladies walked in, taking a tour of Duke with one of our PBMT doctors.
Caution long one but had to write about this: it was a God moment, a God wink. There is a foundation called Cannonball kids Cancer and the mother who started it, Melissa Wiggins, has a son (Cannon) with Neuroblastoma. They live in Florida but the CEO of their foundation, Ashely V., lives here in Apex and is a member of our church and her girls go to our church preschool with mine. I had messaged Melissa in the past and the CEO Ashley knows OF our Charlotte and our family through our church family. However, we have never met. Well today they both walk in on a tour with one of our doctors. (They raise money for clinical trial research for pediatric cancer and they have raised money for Duke among many other places in the past.) I could not believe my eyes. We lock eyes and I instantly know who they are. After they stop and chat with the doctor, they smile and the CEO asks if she knows me. I smile and say probably not but I know you and I was about to introduce myself. She stops me and says "I have been hoping to meet you and Charlotte." She knew who we were. And the mom, Melissa Wiggins, remembered our back and forth message we had only a few months after Charlotte was diagnosed. I wrote it on the floor of the hospital around midnight while I couldn't sleep one night. I had read her recent post on their page about her son successfully finishing the cancer treatment only to find out none of his permanent teeth would be healthy enough to grow in. This was the straw that broke the camel's back in her eyes. I laid there crying right along with her. And now she's standing before me. She ate Charlotte up and kindly spoke some inspiring words to me.
So, they are also in town for a special event tomorrow in our hometown of Apex, Emiliafest. Reading Emilia's story is incredibly difficult. And for me, I had to stop and start several times. She beat her primary cancer but due to the harsh treatments, she developed a secondary cancer. She beat that cancer as well only to have it relapse. She died from the harsh treatment she received. Her body that beat cancer twice in 2 years could not do it a third time. This is what CKc kids (cannonball kids cancer) does. They fund clinical trials doing ground breaking research in pediatric cancer. So that kids have a real chance at not only beating their cancer, but being able to live through the treatment and grow up without the health conditions that drastically affect their quality of life or can actually end their life even after they survived cancer. So I wanted to spread news about Emiliafest for anyone in town that may like to attend this great fundraising event or anyone at all who wants to donate to a cause that could one day fund life saving treatments for someone that THEY love. We have all been in the position of having kids with good health. We have all had kids without cancer. Emilia was healthy and 10 and then her legs hurt. Charlotte was never sick with more then a common cold a day in her life until an ear infection at her second birthday was the first time she ever needed any medication. Then months later, out of the blue, she was so tired and constipated. Suddenly, our world came crashing down. Charlotte has cancer. There was once a time we too had a child who didn't have cancer. Cancer can effect anyone at anytime. No rhyme or reason. When Brian and I donated money to St.Baldricks in the past, we could never dream that the money would ever benefit one of our children. Our world has changed. And it doesn't have to be for the worst. We can answer this calling even if we can't understand why. And this grassroots organization, CKc, is making the world we now live in, this pediatric cancer world, be a world that provides more possibilities for our Charlotte to not only survive (goal 1), but thrive (goal 2)
http://www.emiliafest.com
P.S. Also thanks for prayers that Charlotte does not end up with a line infection fromthe series of Whoopses. And pray that this mommy turned over night nurse can get it right going forward and also show Brian how to get it right!
First of all, last night and this morning were unfortunately a bit dramatic. Our discharge nurse spent time with me here at the apartment yesterday evening to walk through all our supplies as well as help me set up Charlotte's IV nutrition for my first time to run overnight. I had everything ready. Right before tuck in, I hooked her up and started her pump. I turned my back to grab her book and in a matter of seconds there was a bowling ball size space on the bed of blood. She sleepily smiles feeling nothing thank god as I quickly spring to action clamping her line and assessing the IV. The On call nurse walked me through what to do over the phone. It was determined there was most likely a flaw in the Y shaped attachement that connects her TPN and lipids to her line. I had an extra part and got everything working. Phew. Then this morning, the nurse showed up to be there for my first lab draws and cap changes alone out of the hospital. Sort of like QC to be sure all was done properly. Charlotte's hand accidental grazed her open line while I was changing her cap and this must be done very sterile. 2 strikes for mom. Then, I had a saline flush malfunction and the nurse had to assist me in this as well! Third strike! I kid you not, after Charlotte quietly observing my reaction to the nurse she stopped us in our tracks and said these exact words:
"It's okay mommy! Relax! You doin' your best!" I about crumbled into a heap of tears. Yes baby girl, I'm doing my best. You deserve nothing but. Mommy will get better....I hope?!
So off to clinic we go with vials of blood and a bounce in her almost 3 year old step. Not thrilled to have to go back to the hospital at 9:30 am after we were just discharged yesterday afternoon, but she pulled a Charlotte and drank the lemonade she tends to make from any lemons. Once we arrived, the team decided based on all the follies from last night and my cap change this am, they would do blood cultures on both her lines and we would need to spend several hours getting an antibiotic IV drip just to cover our bases in case her line was contiminated. Our plans to meet one of her BFFs, Brady, and his mom (one of my BFFs) at our apartment playground would have to be postponed until next week. I felt horrible. But while I felt horrible, Charlotte happily colored, played ponies with me, munched on a snack (yay!), played a ukulele and bongos with a music therapist, then did a water color painting at the art table. In her little mind, what's there to complain about?! She took a nap during the antibiotic infusion and woke at 3:30 ready to roll!
However, if she didn't need this additional step in clinic today, if everything had gone as planned and she didn't need the 2 hr antibiotic administered, then I never would have been sitting where I was when 2 amazing ladies walked in, taking a tour of Duke with one of our PBMT doctors.
Caution long one but had to write about this: it was a God moment, a God wink. There is a foundation called Cannonball kids Cancer and the mother who started it, Melissa Wiggins, has a son (Cannon) with Neuroblastoma. They live in Florida but the CEO of their foundation, Ashely V., lives here in Apex and is a member of our church and her girls go to our church preschool with mine. I had messaged Melissa in the past and the CEO Ashley knows OF our Charlotte and our family through our church family. However, we have never met. Well today they both walk in on a tour with one of our doctors. (They raise money for clinical trial research for pediatric cancer and they have raised money for Duke among many other places in the past.) I could not believe my eyes. We lock eyes and I instantly know who they are. After they stop and chat with the doctor, they smile and the CEO asks if she knows me. I smile and say probably not but I know you and I was about to introduce myself. She stops me and says "I have been hoping to meet you and Charlotte." She knew who we were. And the mom, Melissa Wiggins, remembered our back and forth message we had only a few months after Charlotte was diagnosed. I wrote it on the floor of the hospital around midnight while I couldn't sleep one night. I had read her recent post on their page about her son successfully finishing the cancer treatment only to find out none of his permanent teeth would be healthy enough to grow in. This was the straw that broke the camel's back in her eyes. I laid there crying right along with her. And now she's standing before me. She ate Charlotte up and kindly spoke some inspiring words to me.
So, they are also in town for a special event tomorrow in our hometown of Apex, Emiliafest. Reading Emilia's story is incredibly difficult. And for me, I had to stop and start several times. She beat her primary cancer but due to the harsh treatments, she developed a secondary cancer. She beat that cancer as well only to have it relapse. She died from the harsh treatment she received. Her body that beat cancer twice in 2 years could not do it a third time. This is what CKc kids (cannonball kids cancer) does. They fund clinical trials doing ground breaking research in pediatric cancer. So that kids have a real chance at not only beating their cancer, but being able to live through the treatment and grow up without the health conditions that drastically affect their quality of life or can actually end their life even after they survived cancer. So I wanted to spread news about Emiliafest for anyone in town that may like to attend this great fundraising event or anyone at all who wants to donate to a cause that could one day fund life saving treatments for someone that THEY love. We have all been in the position of having kids with good health. We have all had kids without cancer. Emilia was healthy and 10 and then her legs hurt. Charlotte was never sick with more then a common cold a day in her life until an ear infection at her second birthday was the first time she ever needed any medication. Then months later, out of the blue, she was so tired and constipated. Suddenly, our world came crashing down. Charlotte has cancer. There was once a time we too had a child who didn't have cancer. Cancer can effect anyone at anytime. No rhyme or reason. When Brian and I donated money to St.Baldricks in the past, we could never dream that the money would ever benefit one of our children. Our world has changed. And it doesn't have to be for the worst. We can answer this calling even if we can't understand why. And this grassroots organization, CKc, is making the world we now live in, this pediatric cancer world, be a world that provides more possibilities for our Charlotte to not only survive (goal 1), but thrive (goal 2)
http://www.emiliafest.com
P.S. Also thanks for prayers that Charlotte does not end up with a line infection fromthe series of Whoopses. And pray that this mommy turned over night nurse can get it right going forward and also show Brian how to get it right!
CKc snapped a couple pics today
Charlotte with Founder Melissa Wiggins
Us with Ashley Vandermark, the CEO of CKc
Jammin to Bob Marley 3 little birds
Art time
Story time before nap. That face
Peaceful
Another rainbow from a friend in Baltimore! Thanks Bohlens !
Friends of Schuey and Neals raising money for research and honored our Charlotte with this sign
You did Great Jennifer !!!!
ReplyDeleteAnd her comment shows what an aware compassionate caring smart little lady you and Brian are raising
Thanks for last night. Family together and hopefully a good nights sleep
Love you
Pops
FROG