Test Results

          We have received our test results.  Everything is looking good and showing improvement!! God is so good! Her CT scan showed interval improvement when comparing to previous exams which would show a positive treatment response.  On her primary site of the neuroblastoma, her adrenal gland, it is no has any measurable soft tissue mass.  This is wonderful news since this is where she had her surgery to remove the tumor and it is indicating that there has been no new or additional growth.  The metastasis spot on her left eye orbit (bone) is less noticeable than the previous CT scan.  The are no new osseous findings or tissue findings in the CT scan.  Also noted in her CT scan was that she has a calcified gall stone.  She also has an unusual configuration of her organs which is to be expected with her omphalocele.   Charlotte’s MIBG scan results also showed an improvement on her metastatic orbital lesion (eye), shrinking, which is consistent with a positive treatment response. 

            Charlotte’s biopsy results are back too.  Charlotte has no metastatic neuroblastoma cells in her bone marrow.  This is huge!! She no longer has any metastatic lesions in her bone marrow! We are so excited!! Charlotte also had an echo completed.  Chemo can be a little hard on the heart so it has been something her doctors want to continue to monitor.  Charlotte’s heart continues to look the same, which is great!  Charlotte still has a PFO (Patent Foramen Ovale) which is a small hole in her heart.  She also has a left sided SVC.  Most people have a right-side SVC, Charlotte has one on both sides.  Lastly, Charlotte has a bicuspid aortic valve. 

            Now on to the bad news we received today, Charlotte’s counts did not make the cut to start round five today.  Charlotte’s neutrophil counts were in the 520 range and in order to start chemo they want her neutrophil counts to be in the 700 range. The neutrophils are part of her white blood cells We will now go back on Thursday to check her counts again and hopefully start round five then. 

“She stood in the storm and when the wind did not blow her way, she adjusted her sails.”

#CharlotteStrong

#CharlotteCancerConquerer

Tests, Tests and More Tests

   
       Charlotte has her clinic appointment tomorrow.  She is still fighting a diaper rash that won't fully go away.  The rash however, doesn't seem to be slowing her down any.  She is growing and gaining weight! She is now 7.9 kilos (17 lbs 6.6 oz) which is in the 13th percentile, and she is 72 cm (28.35 inches) which is in the 15th percentile.  She is also starting to walk up a storm! She loves taking off and walking across the room, especially to bring us stuff.
       Today was an eventful day.  Our strong little girl had her bone marrow biopsy, echo and iodine injection. We showed up early in the morning to Cook's and got everything ready to go.  Around 10:00 AM, Charlotte was taken back for her biopsy.  Charlotte did very well being taken from us; she didn't cry or scream.  The biopsy, echo and iodine injection all went very smoothly.  Charlotte had a bilateral bone marrow aspiration and biopsy. The echo was to continue to watch her heart issues that were present before the chemo began.  Charlotte woke up a little unhappy from the anesthesia.  She seemed to be in a little bit of pain.
       When we left, Charlotte slept the whole way home and was able to nap for another hour or so when we got home.  Once she woke up from that nap, she seemed to be feeling much better.  Since being home and awake, she has been happy and silly, walking all around, playing with her toys, and eating like normal.
       Tomorrow we will have more tests.  Charlotte will have a CT scan and her MIBG scan.  Those scans will look at her entire body but focus on the stomach and the eye orbit to see the progress of the chemo on her metastatic lesions.  They have said that it will be okay if there is no change on the tumors.  They just don't want to see more "spots" of concern.  We will find out the results on Monday at our clinic appointment before we get admitted for round five.
       Please pray for sweet little Charlotte that she continues to heal quickly from the bone marrow biopsy and that we get good results from all of her tests.  Thank you so much for your continued prayers and support, we are so blessed beyond words.

"She made broken look beautiful, and strong look invincible. She walked with the universe on her shoulders and made it look like wings."

#CharlotteStrong
#CharlotteCancerConquerer

 

Smiling just after getting out                       Back home doing her favorite thing, reading

My Hero - A Guest Post by Katie Grothaus

For those of y’all who don’t know me, my name is Katie, and I am Brittany’s little sister (Charlotte’s aunt and Godmother).  I asked my sister if I could do a guest post on her blog, but I did not tell her what I was going to say.  I’m sure she was a little scared giving me permission to do this, but I’m really glad she did.  Here goes nothing...

I don't often scroll through my newsfeed on Facebook because I really don't have time, but the other day I opened the app, and one of the first posts I saw was a friend of mine complaining about one of the many struggles of motherhood. I kept scrolling and I saw person after person complaining about one thing or another.

This made me think of my sister. Not because she complains a lot...but because in the last year, life has dealt her and her family blows that would give her every right to complain, but she doesn't. 

In May, when she found out her 9 month old baby had cancer and would have to have surgery to remove the tumor, only to undergo 8 rounds of vigorous chemotherapy, lasting until October, she didn't complain.

When her daughter turned 10 months old in the hospital, she didn't complain.

When she couldn't invite any children to Charlotte's 1st birthday party because Charlotte can't get sick or get her vaccinations, she didn't complain.

Even though my sister can't run simple errands during the day, while her husband's at work, because she can't take Charlotte in public, for fear of exposing her to anything, she doesn't complain.

Even though my sister has to take Charlotte to the hospital at least once a week and watch them draw blood from her tearful baby, she still doesn't complain.

Even though she can't explain to her baby what's going on or why this is happening, she still does not complain. 

In everything she does, she praises God and starts every day with a thankful, loving heart. She puts on a brave face and does everything and anything to make her baby girl smile. She is one of the most beautiful, grateful, selfless people I know. She and her husband both have only grown stronger through this, and I am in awe of them both. 

I'm not saying this hasn't been difficult for her. I'm not saying she doesn't hurt every single time her baby girl feels any kind of pain. What I am saying is, the next time you or I feel the need to complain...we need to think about all that we have to be thankful for. We need to ask ourselves what we are doing to ease someone else's burden because that is what gives life meaning. I see it every day in the way my sister does everything in her power to make my niece the happiest girl in the world. 

My niece is a warrior for sure, but she most certainly gets it from her momma. My sister is my hero. 💛🎗

We Are Home

      We have made it home from another round of chemo.  We are officially half way through our chemo rounds! This stay in the hospital was a little more difficult than our others in the past.  Charlotte got a really bad diaper rash the first night that made diaper changes very painful.  Since she is receiving chemo treatments, the hospital has her getting diaper changes every two hours because she is tinkling out some of the chemo drug, and they do not wanting her sitting in it, even overnight.  Her night time diaper changes were painful, and made it difficult for her to go back to sleep.  Around 4:00, we gave her some nausea medicine, because it seemed she was having some nausea too, and that seemed to help calm her down and finally get some sleep. 

     The next day Charlotte was back to her normal playful self.  She was running the halls, playing with her toys and enjoying a visit from her favorite furry buddy Ralph, the service dog.  Charlotte has really started taking steps and enjoyed being out of her room, walking the hallways when she is not receiving chemo.   I think one of her favorite parts is getting to see all her favorite nurses and practice her steps and waving around them. Charlotte also took some steps, some really big girl independent steps.  She took as many as four one time!  Charlotte also met some new friends in the halls.  Due to being new to the area, in and out of hospitals, and now with her chemo diagnosis, she has not been around many kids her size.  She was very excited to meet some new friends and kept trying to go up and play, and pointing at them. 

     The second night was a little bit better.  Charlotte did wake up and had a hard time going back to sleep, but after about a half an hour she did finally sleep without the need of any medicine.  She then slept well the rest of the night.  Today Charlotte enjoyed walking the halls again.  She also was able to spend some time in the playroom.  This gave Charlotte the opportunity to try out some new toys.  She really enjoyed an old classic that played music and had animal sounds when you spin the middle.  She also really enjoyed the tricycle.  Charlotte was able to take the tricycle out for a spin around the halls of the hospital and get some practice.  She is now ready to join her PopPop in the MS 150 next year!

    We are now home and Charlotte has taken a really good nap.  She is happy and playful right now and we are just enjoying these moments.  In about a week and a half we will have scans that will let us know how the metastatic lesions are responding to the chemo.  We have been warned that hardly any shrinkage is possible, so to not be too worried about that.  What they are looking for is to make sure that nothing new has developed or that the lesions are not growing.  Please pray that we receive good results from the scans.  This will also be when Charlotte gets another bone marrow biopsy which is going to be painful for her.  I pray that she heals quickly from that. 

     Thank you again for all your constant prayers and uplifting us all in your thoughts.  We are blessed beyond words by everyone.  Please continue to pray for Charlotte as we continue this journey.  We are only half way through but hopefully soon we can see the light at the end of the tunnel. 

Some people never get to meet their hero, but I gave birth to mine.

#CharlotteStrong

#CharlotteCancerConquerer

#CharlotteIsONEderful

Round Four

      Here we go, round 4! We are almost halfway through all of our treatments - YAY!!! We will be in the hospital for three days again for these treatments.  As I am typing this, Charlotte is hooked up to her fluids and we are about to start day one of her chemo meds.  Charlotte continues to gain weight and had a small growth spurt.  She is now 16 pounds 13 ounces and 28 and a half inches long.  

                Charlotte was very excited to wear her Charlotte Strong T-Shirt today! She wanted me to tell everyone else who is wearing their shirts thank you! She can feel all of y'alls love.  Charlotte has been doing really well with everything.  During the in between of her last round and today, however she is starting to have a few more symptoms related to chemo such as, a few more poopie diapers than normal which could be signs of her stomach being upset.  She has also had a couple of mouth sores, which so far, have not bothered her enough to stop her from eating or drinking. This would be the main concern with having mouth sores.  Through all of this, Charlotte has still remained her happy and playful self.  She is throwing blocks over her crib here at the hospital, going on walks through the hospital halls and talking up a storm.  She is so loud these days that we can hear her making her presence known down the hall way.  Thank you again for all of your thoughts and prayers.  It is very obvious that God is answering them!

"Cancer may have started the fight, But WE will finish it!"

#CharlotteStrong

#CharlotteCancerConquerer

One Year Old

       Today is Charlotte's first birthday.  What an incredible year this has been.  We have been through so much in this past year it's hard to reflect on all of it.  It's incredible when I do take a moment to reflect and think about all she has been through.  Every day Charlotte teaches me something new about what it means to be strong and have grace.  She has taken each battle, both her omphalocele and now her cancer fight without even batting an eye.  Charlotte has taught me that strength doesn't just mean physical abilities but also strength of mind and heart.  Someone who is receiving cancer treatments and can get up and dance through the whole hour with a smile on her face is someone who is stronger than I can even imagine.  My little girl has taught me so much in this first year.  She has taught me about God's grace.  She has shown me that while God doesn't always take away our earthly afflictions, he finds way to help us or give us the strength to guide us through it.  What continues to guide Christopher and me through this journey is the knowledge that she does not understand what is going on and she will not remember this.  I will however make sure she remembers what a tough little girl she is and how strong she has been.  I think this will always be a good reminder for her when she has had days as a teenager, a reminder of the struggles of what she has already gone through.  

      Charlotte loves to dance, loves music and snuggles with just about anyone.  She has no stranger danger and loves to smile at everyone she meets.  Her laugh is one of the most incredible sounds I have ever heard.  She is still a little bit on the smaller size at still only 16 pounds but she is definitely mighty.  She is getting so close to walking, and just like that there will be no stopping this little girl.  

    On her birthday, I believe the greatest gifts we received were all of the many blessings and prayers from everyone who has been following Charlotte's story.  Christopher and I are overwhelmed with the out pouring of love and support from everyone.  Thank you again from our whole hearts.  On Tuesday, Charlotte will begin round four of chemo.  I am so blessed to be this little girl's mommy and I am so honored that God has chosen me to be her mommy.