We Are Home Again

        Our little wonder woman is home again!! Round three went relatively smoothly.  This round we were in the bone marrow transplant unit because the Hematology/Oncology unit was full.  Please say some prayers for the families in the H/O unit for quick healing.  Charlotte did very well and handled her chemo like a super hero during this stay.  Charlotte ate well during her stay, well enough that when we weren't receiving our chemo transfusion Charlotte didn't have to be hooked up to any fluids to keep her hydrated.  After her first chemo transfusion she did receive a fluid flush.
      Our days were spent playing with her blocks, working on her colors - Charlotte is trying really hard to say red, blue and yellow.  We are also working on saying uh - oh (she loves knocking over he blocks so we are playing and saying uh-oh).  We also spent al lot of time having dance parties in our room.  Charlotte enjoyed her favorite "Can't Stop the Feeling," by Justin Timberlake and "24K Magic," by Bruno Mars.  Charlotte also enjoyed a visit from her favorite support dog, Ralph.  She enjoyed petting him and watching him do some tricks.  Charlotte even gave Ralph a little fist bump!
     Now comes the hard part.  Following the neulasta shot tomorrow, Charlotte will have a little boost in her counts to help her but those counts will continue to drop.  We pray that she continues to stay healthy even with low blood counts, especially since her first birthday is coming up!! We wish that we could invite everyone that has been with her and praying for her during this long journey however, with her health concerns we just can't have a big party.  Hopefully when she is done with chemo and officially in remission, we will hopefully have a big blow out party.  Please continue to pray because as we go through this, the harder the medicine is on her little body.  Due to her age the doctors think she will tolerate a lot more than older kids do, but that doesn't mean she doesn't feel the stress and harshness that the medicine is putting on her body.  Thank you again for all your prayers! We cannot say enough about how much it means to us to have so many people praying for our little girl.  Round four will start in July 11th and after that we will need every prayer you have for good results from her scans!!  I pray she can continue to impress all her doctors on how amazing she is.

"Cancer is only going to be a chapter in your life, not the whole story." - Joe Wasser

#CharlotteStrong
#CharlotteCancerConquerer

 

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