ONE YEAR!!

Charlotte is one year cancer free.  As I type these words, I find myself overcome with emotion. A great deal of relief, but so much more than relief.  So much more than words are capable of expressing. There are so many days now that we live without even thinking about that evil little word—cancer.  However, without fail, every three months, that word has been a frequent reminder of all the things Charlotte has been through.  That word that stopped us completely in our tracks a year and a half ago.  That word that brought me scanxiety every three months.  Now with her being one year cancer free, our lives are changed once again, but this time, it’s for the better.  We now only have to receive scans every six months.

            A few updates on the information that we did receive from her scans:  there is still no evidence of disease anywhere in her body.  Her Echo shows that she still has an open PFO (patent foramen ovale), which from our previous understanding, means that it will stay open.  Some children born with PFOs do see it eventually close, however that will probably not be the case with Charlotte.  The doctors are not concerned with her open PFO. Around 25% of the population is estimated to have an open PFO.  Charlotte also still has her Bicuspid Aortic Valve as well.  The doctors will continue to follow and monitor this.  They have no concerns about this defect at this time because this is typically a condition that will need to be addressed in her 3^rd to 4^th decade of life.    Her clinic appointments are now every-other month.  We are moving to a life of more normalcy for her…for us.  She is truly a warrior, and we are so inspired by her.  We would like to thank all of you for your prayers and support.  We couldn’t have done it without y’all!

    

9 Month Scans

Charlotte is 9 months cancer free!! Those words are a huge triumph. I still can’t believe it!  It sometimes feels like another lifetime ago when she was diagnosed, yet sometimes it still feels as fresh as yesterday. 

Due to being cancer free, Charlotte was able to have only a CT scan this round, so no MIBG this time. Charlotte had her CT scan on August 3rd, and she did it all without any sedation. She was not a fan of the CT machine. I forgot to bring her pacifier with me, and she was not happy about it. They had her strapped down nice and tight. However, our little fighter with no surprise, wiggled her arm free to wave and try and hold on to me. She is ridiculous. I love her. 

Her next round of scans will be in November. This will be a year since her end of treatment scans. She will have a huge battery of tests during this round — another MIBG, CT, echo, hearing battery and lots of blood work. If all these tests come back negative, and the doctors like how Charlotte is doing, we will go to only CT scans and those scans will be every 6 months instead of every 3 months. This will be huge!

Just a reminder that September is Childhood Cancer awareness month.  Be prepared to see lots of post in support of more funding and awareness of Childhood Cancer :)

Port Removal

     After almost 11 months Charlotte is officially port free.  Charlotte had surgery today and it was a huge success and her port was removed with no complications.  The port was the little bump underneath her skin on her right shoulder that was used for all of her medicine and chemo administration. With the port being removed, she no longer has to go straight to the ER if she starts to get a fever and she no longer has to have pokes while at her clinic appointments. 

   Charlotte will continue to go to her clinic appointments every month and have scans every three months.  In February she had her first round of three month scans and she was still cancer free.  Her next round of scans will be in May.  We cannot thank you enough for all of your prayers!  God is so good!

"Cancer is an ugly word with a scary meaning, but you kicked ass and are brave and awesome and fought it with your super powers".


#CharlotteStrong
#CharlotteCancer Conquerer

This is the port that was under her skin 

End of Chemo Scans

Charlotte scan results are in and she is officially cancer free!! So many happy tears have been shed today!!   Her MIBG scan and CT scan were clear. There was no regrowth of the tumor in the original area.  The eye orbit has still not completely healed however there is no more tumor tissue in the orbit.  The bone marrow showed no tumor cell clusters.  The scans of her heart look good too!! The only news that we got that is less than exciting was that Charlotte does have some minimal hearing loss in her right ear.  The hearing loss is at pretty high frequency and shouldn’t affect her much in the long run.  It will continue to be monitored at Cooks to see if affects her ability to develop language later in life. 

            Charlotte will now go to monthly check ups with her oncology doctor.  She will have scans again at the end of January.  They will continue to do a CT scan and an MIBG scan for a while but eventually I think she will go to just a CT scan.  They want to watch her very carefully even though the scans are clear.  Due to Charlotte not truly being in a clear Neuroblastoma classification (non-amplified N-Myc gene coupled with a secondary site and other elevated pathologies put her at a higher intermediate risk, but not high risk) she will continued to be monitored closely to hopefully make sure the cancer does not come back.  When we asked her doctor about relapse rates, just trying to emotionally prepare ourselves for the future, she said she is cautiously optimistic.  Charlotte will likely get her port removed after her first round of scans, so around the end of January/beginning of February.  This will be an outpatient procedure. 

God is so good.  We cannot thank you enough for all of your answered prayers!

“Dear Cancer, Thank you for making me stop and listen and remember what’s important.  You can go now.”

#CharlotteStrong

#CharlotteCancerConquerer

 

Charlotte and one of her favorites, Sommer      Charlotte and Lulu twinning on Halloween 

All of the H/O nurses dressed as Wonder Woman :) 

 

Charlotte and Ralph                                      Future Dr. Charlotte :)

 

Round 8

WE HAVE MADE IT!!  Charlotte is truly my hero.  Charlotte made her counts last Thursday and we have made it through all 8 rounds of chemo. Last Thursday morning, we were admitted into the hospital and after a couple of hours of hydration, Charlotte began her last two administrations of her chemo drugs.  Charlotte handled the hospital stay like a champ.  She will probably miss running around those hospital halls and playing with all the nurses.  She truly enjoyed making friends in those halls, since we don’t get out much (or ever) due to chemo.

            Our next step will be scans.  In a couple of weeks, we will go in for Charlotte’s scans.  This will include an MIBG, CT, Bone Marrow extraction, audiogram, echo, and EKG.  This information will tell us what the tumors look like and if the chemo did any damage to her little body.  Chemo runs risks of causing hearing problems and heart problems, and that is the reason for the audiogram and echocardiogram.  The CT scan, the MIBG, and the Bone Marrow extraction will tell us what the tumors look like and if they are no longer present. 

 We are still under social isolation due to her counts being low and we probably will be for the rest of October.  After Charlotte’s counts bounce back, we will no longer be on social isolation (yay!!).  However, that does not mean we are out of the woods.  Charlotte’s immune system took a huge hit during this whole process, and is basically similar to a newborn.  This means that Charlotte is more susceptible to catching everything around her.  This will be extra tricky going into cold and flu season.  Thankfully Charlotte was able to get her flu shot.  However this will probably limit how much we still go out and how many are allowed to hold her.  Hopefully sometime soon we will have a “Charlotte’s in remission” party!

 What a blessing it has been to have her amazing doctors, and all the incredible people praying for us through this unbelievably difficult and trying time.  This journey has been hard at times and definitely scary, but we got through it, thanks to the power of prayer and God!

"Let your faith be bigger than your fear." 

"It's not about bravery, it's about doing what I need to do to win" - 

#CharlotteStrong

#CharlotteCancerConquerer

#CancerSucks  

#Blessed