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 

 

 

 

Round 7

            Charlotte made counts and we were able to start round 7 last week.  While in the hospital Charlotte did amazing.  We had fun walking around the hospital unit and playing with all her favorite nurses.  Charlotte actually slept well throughout the night both nights we were there!! I called our nurse, Laura, the Charlotte sleep whisper! Hahaha.  While in the hospital Charlotte loved running around the unit and going on wagon rides while she was receiving her chemo.  One of the times while running around the hospital however, Charlotte had a really bad tumble and hit her head.  Due to this fall Charlotte earned a new bracelet labeling her a fall risk.  She really wants to move around a lot fast than she is capable yet. 

            Since being home Charlotte has started eating more solid foods during lunch time and dinner.  She is still struggling with some nausea but her medicine has really helped when necessary.  Charlotte is growing and gaining weight that we were actually able to up her dosage (those who know Charlotte’s weight gain struggles know how huge this is!!)

            Yesterday we went to our weekly clinic visit and Charlotte’s counts are great! They actually said some of her counts were even higher than when she was last admitted.  This is one tough girl!  Her weight was down a little bit from before we got admitted for our last round.  Charlotte weights 8.3 kilos (18 lbs 4.77 ozs), which is down from 8.4 kilo on the 14^th of September.  However, Charlotte is getting taller.  She is now 73.5 cm (28.94 inches) which is up from 71.9 cm on the 14^th of September. 

            We will be going in for round 8 on October 5^th, which will be our last round of chemo!! Following that we will only have scans left and then the healing and next steps will happen.  Hopefully everyone who has a Charlotte Strong shirt can wear it on that day and show our excitement for her last chemo dosage!        

            Charlotte loves her nurses and Doctors at Cooks.  She really does have some of the most amazing and kind people looking after her!!

Don't forget that there are so many kids who are going through what we are going through.  Cooks have been an amazing home and wouldn't have all the resources they do without the donations they get.  There are always needing more to help families that come to them and do not have the resources to save a child's life.  Below is the link to help and donate to Cooks during the Childhood Cancer Awareness month.  Don't forget to go Gold all month long!! 

https://www.cookchildrens.org/erasekidcancer/Pages/default.aspx

"I love when people that have been through hell walk out of the flames carrying buckets of water for those still consumed by the fire" - Stephanie Sparkles 

#CharlotteStrong

#CharlotteCancerConquerer

#CookChildrens

#CancerSucks

#ChildhoodCancerAwareness 

Charlotte with some of her favorite nurses and her amazing Dr!!