Round Three

        Here we go, round three begins today.  Charlotte should start chemo at around 8 o'clock tonight.  This will be another three night stay because one of the chemo drugs she is receiving is given over three days. She has received all the chemo drugs at least once that she will receive throughout her 8 rounds so none of the chemo drugs that she is receiving tonight or on this stay is new.
  During these three weeks before round 3 started we have had to give Charlotte some more anti - nausea medicine due to a few times she hasn't wanted to finish bottles.  She has also had a few episodes that I do believe we her throwing up.  These are all normal and expected reactions to the chemo in her body.  While I would love for chemo to be as easy as it has been I know that it's only going to get harder on her sweet little body.  Charlotte is fighting and fighting hard but the chemo medicine is very strong and will possibly knock her down sometimes.  I know that no matter what this medicine does to her and how strong it is, we are stronger and tougher.  When Charlotte has hard days I will be there to hold her and do all I can to make the duress seem smaller.  If I could take on this whole treatment myself I would but I know that is not possible.
     Charlotte is still steadily gaining weight.  Charlotte weighed about 14.77 lbs shortly after starting chemo (on the 15th of May) and today she weighed 16.42 lbs.  It hasn't always been easy but she is taking 5 bottles a day all supplemented with a little bit of formula to help her gain weight.   Around the time she started chemo, on May 9th,] she was 67 cm and today at her clinic appiontment she is 69.5 cm.  All around she is still growing which is a good thing! She is definitely on the tiny side of things still.
    Charlotte wore her maroon today to cheer on her boys, I have not told her that while she napped the best boys lost today.  Our poor Aggies played hard this year and did well and Charlotte is very proud of them.

One Fierce Little Girl

It is Neuroblastoma awareness week! June 12th - 18th

 

                Charlotte is amazing.  Last Thursday, we went to Charlotte's clinic appointment.  Her ANC counts (Absolute Neutrophil Counts) were low.  Neutrophils are a type of white blood cells that fight against infections.  They did not do any infusion because any white blood cell transfusions aren't really helpful because the white blood cells die off so quickly.  Chemo attacks quick growing cells such as hair, nails and white blood cells, which is why those going through chemo are at higher risk for sickness.  We were told to spend the weekend at home and limit Charlotte's exposure.  We spent the weekend at home enjoying some time playing with Charlotte in her pool and introducing her to the live action “Beauty and the Beast.”

       On Tuesday we returned to clinic for Charlotte's next appointment.  Charlotte is now too old to have her blood taken from a heel stick, so on Tuesday they took blood from a vein in her arm for the first time.  She was not a fan but it did go by a lot quicker, and required a lot less squeezing and pain.  We received good news and some bad news while at the clinic appointment.  The good news was that Charlotte's counts were back up.  Her ANC counts went from about 310 on Thursday to 1120 on Tuesday.  During this appointment, I was able to talk with her doctor who is a neuroblastoma guru.  She is very happy with how Charlotte has been doing and happy with her counts.  When we talked she mentioned that Charlotte falls in sort of a small middle group.  Even though her NMYC gene is not amplified, because her cancer has spread some her prognosis isn't as good as a standard intermediate risk cancer patient. However, her prognosis still is not as low as a high risk cancer patient.  This is a small pool of kiddos that Charlotte falls in.  In years past these kiddos have been treated in multiple of different ways, high risk, low risk, etc., because this is a small group of kids and they have tried many different ways, and essentially there isn't a lot of consistent data of prognosis.  This is all information that in the grand scheme of things we already really knew.  We knew that her cancer had spread; we knew that this wasn't good and we knew that that is why we need to continue to be proactive about fighting the cancer. Due to all of this information, Charlotte's doctor wants to do a bone marrow biopsy after round four along with all her scans.  Charlotte will go in on July 11th for her round four of chemo, which will be a three night hospital stay.  We will go home after the chemo.  The next week Charlotte will have her MIBG scan and then a couple days later she will have her bone marrow biopsy along with an MRI and CT scan. 

       We need your prayers again starting next week when we go back in for round three.  This will be another three night stay in the hospital.  Charlotte loves her nurses and doctors, and will love to see them again. 

"You have been assigned this mountain to show it can be moved."

#CharlotteStrong

#CharlotteCancerConquerer

Home Again

        We are home! Last night Charlotte finished her last chemo transfusion around 6:45 pm.  Following her last chemo transfusion she had three hours of fluid.  The before bed last night we were able to disconnect from all fluids and everything. Charlotte was eating really well, so she did not need to have fluids throughout the night.  Charlotte had a really good night; she just did not like the every 2 hour wake up for diaper changes.  Charlotte just wanted to sleep! We are so grateful to our amazing nurses who were able to do the every two hour diaper changes so that Christopher and I could get some sleep.  While receiving chemo, Charlotte will always have her diaper changed every two hours because she is peeing out chemo chemicals and that can cause rashes among other problems.  The doctors came by fairly early this morning and they were really excited to see how well Charlotte was doing.  Shortly after that Charlotte's amazing nurse came in and asked us if we were ready to go home! Charlotte has had several good bottles today and has even enjoyed some bacon, hash browns and some pizza when we got home.  Now we are just home back in social isolation and enjoying our time with our puppy and family here. 

        I am so grateful for the incredible help that we are receiving at the hospital.  Cook Children's is the most amazing place with the most amazing doctors.  I knew God moved us back here for a reason last year, just over a year ago to the date, and I think this is why.  God knew the journey we would have with Charlotte and he knew where the best help in the world would be - here in Texas.  He knew we would need our family close to help us with Jax while we are in the hospital.  I am so grateful for our families who have taken time out of their lives and work to be here with us each time we have gone into the hospital so that Jax can stay at home and we could have the extra support.  We also have been so grateful to those here who have helped us out, especially those who took Jax in the first stent in the hospital before my family could come up.  We are so incredibly blessed. 

"She is clothed in strength and dignity and she laughs without fear of the future." Proverbs 31:25

#CharlotteStrong

#CharlotteCancerConquerer

Chemo Round 2

 


       We have just completed round two of our chemo journey.  During round two she received three different chemo drugs.  Only one of them is one that she has received before.  She received one for an hour, another for the next hour and then the last transfusion for 15 minutes.  This round of chemo is only a one night stay in the hospital.  Jax will be very happy to have us back at home so quickly this time.   They started with her pre-meds, which is just medicine to help prevent nausea.   Charlotte has been napping but not restfully.  She has been amazing with this round of chemo so far, and has been pretty happy and is eating well.  She has enjoyed many trips around the Oncology/Hematology wing here at Cooks,  and the nurses all love Charlotte.  Right now she is receiving her fluids and as long as she is still eating and drinking after about another hour, she will be able to be disconnected already!!  That is such happy news because Charlotte likes to think her IV is a play thing/chew toy.

        I think Charlotte is starting to remember what is happening, and she is not happy about it.  These are the moments as a mom I wish I could make all go away.   I wish it was me in that bed and not her having to go through this.  I just pray that one day when we explain everything that she has been through,  that she understands what an incredible warrior she is.   Today she is wearing her team Ruby shirt.  Ruby is the young daughter of one of my friends, who has gone through cancer and was a complete warrior!! Today Charlotte is wearing her Ruby shirt in the hopes that it gives her a little bit of Ruby's strength to get through this round two. 

      Please pray for Charlotte's doctors and nurses that they have swift and healing hands during this process.  Please pray that the chemo works quickly with very little side effects.  Please pray that Charlotte has a restful night despite the chemo infusions.  Please pray that her parents continue to stay strong and healthy during this process so that we can provide Charlotte as much normalcy as possible.

God is good.

"Tough times don't last, tough people do."

#CharlotteStrong

#CharlotteCancerConquerer

Latest Update

       We met with the oncology nurses on Monday and Charlotte is doing amazingly.  She is rocking this first round of chemo like we knew she would!!  At all of her clinic appointments, her blood counts have looked really good.  Charlotte also recently went to see her surgeon for a follow up appointment and she is healing very well.  Her surgeon said that hopefully the next time he sees her would be to remove the mediport.  Charlotte is still eating well and taking more of her bottles each day.  We are still giving her more bottles than normal to provide her milk and some formula to give her extra calories to help promote her weight gain. 

       At one of Charlotte's recent clinic appointments we received back the results of her bone marrow biopsy.  Charlotte has a small metastatic neuroblastoma tumor present in the marrow.  This does not change the course of treatment for Charlotte.  She will remain in the intermediate protocol for her treatment.  The one way that this does change things is that she will have another bone marrow biopsy.  The doctors and nurses have said that she will have this bone marrow biopsy after they believe that she is done with chemo, after round 8, to make sure that the marrow is clear of any metastatic cells.  

      This week we only had to go to clinic on Monday because Charlotte's counts are so awesome!  So now we are enjoying the time at home and relaxing.  Charlotte will begin round two on Tuesday the 30th.  This will be a one night stay over in the hospital.  Charlotte will receive three different chemo medicines on the 30th and will be able to go home on the 31st.  We are so blessed that you continue to keep Charlotte in your prayers.  They have been truly working.  We will continue to need your prayers as her chemo treatments proceed, so that they continue to work on killing those lesions in her eye orbit.  God is good.

"God is within her, she will not fall" - Psalm 46:5


#CharlotteStrong
#CharlotteCancerConquerer

Good News

        Charlotte has been very happy to be back home in her own bed and back with her big brother.  My first Mother's Day with my sweet baby girl in my arms was amazing.  I am so blessed that God choose me to be this little girls mommy.  She is truly a gift from him.  

      These last couple of days have been really good and we have been getting use to our new normal.  Most things have not changed except for our trips to see her oncology doctors and limiting or trips outside our home.  Charlotte has been a trooper at all the doctor visits we have gone to.  She gets weighed, measured, temperature taken, blood pressure taken, and then she gets a heel prick (her least favorite of them all!!).  The heel prick is so that they can check her blood counts.  On her most recent visit her counts were really good.  Her white blood cells counts, red blood cells and platelets are the blood counts they are looking at.  If hers were ever to dip low they would be able to access her medport and give her a transfusion of what she needs.  Thankfully Charlotte's counts have been really good and has not had to have a transfusion yet.  Charlotte continues to impress everyone on how well she is doing.  

        Today we got a lot of incredible news.  The first piece of news we received is that Charlotte has gained weight.  She is now 16lbs 3oz which is over a pound gain.  We are so proud that even though she isn't eating quite as much as before she is still gaining weight.  The other piece of great news we received today is that Charlotte's N-Myc gene is NOT amplified! This news brought tears to my eyes in the doctor's office (Christopher proudly pointed out that it had been about a week since I've cried).  This news means that we will remain in the intermediate protocol and only receive chemo!! God is so incredibly good!! What we know now is that Charlotte will receive 8 rounds of chemo.  Charlotte has already received one round of chemo, so she will only get seven more rounds.  Some will still be three days long like her first round and some rounds will only be one day (which means one night in the hospital).  

     God is so good and we are so blessed to have our prayers answered.  We now have a plan and can look to the future and what it holds for us.  I know that not every week isn't going to go smoothly like it has been but I know I can trust in the power of prayer and in God that he has Charlotte in His hands and that we will conquer this mountain together as a family.  

"You don't have a right to the cards you believe you should have been dealt.  You have an obligation to play the hell out of the ones you're holding" - Cheryl Strayed

#CharlotteStrong

#CharlotteCancerConquerer 

 
      Our first Mother's Day together

 

 

We are Home!

      What a wonderful gift from God, we have been able to make it home.  After just over a week in the hospital we are home.   Charlotte completed three days of chemo and was a superhero throughout it all.  The first of chemo was the only challenging night.  Charlotte has slept relatively well considering all of the things going on.  She has become more active and playful as each day has continued.  She is also improving her food intake.  We were sent home with extensive directions on social isolation, limiting visitors, and especially screening people on if they are sick before they come over for a visit.  We would love to see everyone and celebrate Charlotte completing round one but we have to be increasingly careful as the chemo works and her immune system weakens.
     Charlotte will continue to see doctors twice a week for now in what is called clinic. There they will check her blood counts to make sure that she doesn't need a blood transfusion.  This is also where we will find out if Charlotte's N-Myc gene is amplified, but probably not until next week or the week after.  Once we will find out if the gene is amplified or not that will determine if we are maintain the intermediate protocol (if the gene is not amplified) or if we go to the high risk protocol (which will be a lot more treatments and a lot more challenging on little Charlotte).
       We are happy to be home and starting what will be our new normal.  We will be going back to the hospital for another stay around the 30th of May.  This will be another three day stay where Charlotte will receive three days of chemo again.  The doctors will continue to monitor Charlotte's weight since that is still a concern from a low weight gain baby going through a treatment that can affect her eating behaviors.  Charlotte is not eating whole bottles like she was before however she continue to improve her intake each day.  We are so blessed that Charlotte was able to come home after only one week and a day of a hospital stay and treatment.  We continue to stay positive and trust in God's healing hands that he has this, and we just need to lay our worries at his feet and lean on him when we need extra grace.


#CharlotteStrong
#CharlotteCancerConquerer