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

Chemo Day 1

 

#CharlotteStrong

Yesterday we spent a lot of the day sitting and waiting for chemo to start. Charlotte had a lot of tests she had to pass in order to start chemo.  Charlotte however, was in wonderful spirits.  She was able to play a little and crawl around on an activity mat.  She enjoyed a wagon ride around the floor.  Charlotte brought some cookies to all the nurses to say thank you for Nurse's Week and she was really sad when the nurses took the cookies and didn't give her one.  We started our first round of chemo last night.  

It was a very rough night.  Charlotte slept well until about 2 am when she got a diaper change. Afterwards, Charlotte became agitated and acted distressed.  The only way we found to comfort her was holding her, so Christopher and I took turns throughout the night holding her.   Once she was being held, she received the comfort she needed and was able to sleep.  She also gave us a little bit of a scare when she began running a fever at around 3 am.  They were able to give her some Tylenol and an antibiotic. By about 9 am, her fever had broken and she was acting a little bit better.  Today she has had good and bad moments.  She has still at times seemed really uncomfortable and upset and has napped more than normal.  She is still finding more of her calm and seemingly comfortable moments when she is being help.  She has been able to nurse, which has been wonderful because it means the anti-nausea medicine is working. Charlotte has some smiles for Ralph the therapy dog when he came to visit her.   She has played a little on her activity mat and seemed to enjoy that time. She has also enjoyed some dancing with her mommy.   Charlotte has also gone on a short wagon ride again and enjoyed the time out of her room. We will begin our second day of chemo sometime soon and hope for a much better night since she will only be receiving one of the chemo medicines.

 She continues to amaze me how tough she is and resilient her spirit is.  I never thought this would be the path we would be going down but this is what we have to deal with now.  I find comfort in know that God’s grace has been given to Charlotte.  She is also one of the fiercely strong little ladies I know.  She has been independent and strong willed to doing thing her way since day one and we know that is how she will attack chemo.  No matter what we are going to through this stronger than we ever were before because of Charlotte.  She is truly teaching me what it means to be strong.  To use a Yoda quote, “Do or do not, there is no try”, and Charlotte is doing with all she has. 

Thank to all the amazing friends who continue to reach out to us and come by for visits.  You have given us more than we ever deserve in support, prayers and love!

#CharlotteStrong

Day 2 Post Surgery

Day 2

         Today has been fairly uneventful.  Charlotte slept through the night pretty well.  She gave us a tiny scare right before bed when she threw up a little bit.  Thankfully, the surgeon was there when it happened and he was able to look at it and say that he wasn't too concerned.  Charlotte has been in much better spirits today, giving us more smiles and playing patty cake.  She has started to eat some more bottles which is really exciting!! She has been able to nap better today with out sounding like she was uncomfortable.  Christopher and I were able to step out for a little bit to attend the NICU reunion to visit with some of our favorite nurses.  It was sad to tell them we were back in the hospital but they look forward to maybe a visit from us when we come back for chemo treatments.  Charlotte had some extremely sweet visitors the last couple of days that have brought her parents and her some goodies and meals.  We are so blessed to have such wonderful people looking out for us and for our little girl.  We talked with the pain management doctor today and he thinks her epidural will come out tomorrow, which means that her catheter should come out shortly after.  Her urine output has been great today so that is no longer a concern, however she needs to continue to have the catheter in until the epidural comes out because the epidural makes it difficult for her to feel the need to go to the bathroom.  She has also finally had a full feed (90 mls) and a bowel movement which is wonderful because that signals her intestines are waking up after having surgery.  Her oncologist doctor came by today as well and we were able to talk a little bit about chemo.  He said that we will sit down tomorrow and have an in-depth conversation about what everything is going to look like and what our preliminary schedule with look like.  Charlotte will likely start chemo tomorrow evening or Tuesday some time.  

     Having some more down time today has allowed the realization that my sweet baby girl has cancer to hit me.  When we found out that she had an omphalocele we felt like we were hit by a ton of bricks but we immediately went into planning mode because there was a lot of unknown and planning is all we could do.  Now with the cancer diagnosis it feels like a punch in the gut.  We are back again in the planning mindset, figuring out when chemo will begin, figuring out how many treatments Charlotte will get.  We are so blessed that this was caught early long before this could cause any damage to her eye.  If it wasn't for us looking to confirm that she had reflux, we would have never found the tumor. The doctors seem pretty positive about her prognosis.  As I walk the halls of the oncology/hematology wing here at the hospital and I feel sad and hopeful.  I feel sad that so many rooms are full and hopeful that we are in such a wonderful place that can provide her the best treatment. Charlotte will be followed by an oncologist for the rest of her life which is just one more doctor and complication that she will have.  However, they are very positive that this isn't putting her at risk for any future cancers.  We have struggled so much in the last couple of days but we are choosing to focus on the positives as best we can.  We know that if it wasn't for Charlotte's omphalocele or at least for the concerns about her low weight gain and spitting up, we probably wouldn't have found this cancer until it started to effect her vision, if it ever did.  I hate seeing my sweet girl going through this and I hate what is to come but I know my girl is a fighter, sadly we have already witnessed this, and she will come out on the other side of this stronger than ever.  A wonderful friend who came to visit today reminded me that it helps a little remembering that she won't remember any of this.  One quote that I saw here at the hospital that I love is "Sometimes real superheros live in the hearts of small children fighting big battles." 

Yesterday we danced to help make the pain seem like a little bit less painful 

Charlotte loves and misses her puppy

My favorite girl on some happier days :) 

Day 1 Post Surgery

   
    Charlotte's had an up and down day.  She did not sleep great last night.  Around 8:00 last night we noticed that she had a bit of a fever and her amazing nurses were able to give her some Tylenol and some antibiotics to get the fever down quickly.  Charlotte's urine output was not great overnight and they were trying to decide if they should give her some medicine or some fluids.  The nurses were able to give her some medicine that helps with urine output and this was able to help.  Charlotte has an epidural catheter in her back that can effect urine output which is what the medicine was given to help with.  Currently she is now on fluids.  She has also been given Tylenol for the pain that they think is coming from where they placed her MedPort. Charlotte's epidural helps with pain on her lower half of her body however the MedPort is located up on her right side just under her clavicle.  As mentioned in the previous posts the MedPort is where she will be receiving all of her medicine including her chemo.  Her oncologist, came to visit us early this morning.  He did not have any updates for us this morning, however he did want Charlotte to be seen by an ophthalmologist to have her look at her eye for any concerns that he thinks could push up chemo starting.   The nurses came and dilated Charlotte's eyes and then the ophthalmologist ran some tests to check for the neuroblastoma cells in her eye.  They wanted to see is there was any significant growth that could already be causing problems such as pressing on the eye, the orbital socket or the optic nerve.  The mass on the eye is what is leading us to be more aggressive with her treatment.  Often with neuroblastoma when it is found, especially with little ones, there is a possibility that the tumor can shrink and eventually turn into a ganglioneuroma, where the neuroblastoma essentially matures into benign scar tissue.  However, because she has neuroblastoma cells on her orbit they are concerned that any growth could put pressure on the eye or optic nerve.  Today the ophthalmologist did not see anything in her eyes that looked to be concern.  Her optic nerve was an appropriate color of a yellow/orange, the ophthalmologist was looking to make sure it wasn't a pale color. The ophthalmologist also didn't see anything floating in her eye or that her eyes didn't move on up or down or shake.  This was good news, we did not need to start chemo any earlier and we could let her heal from the surgery.  Charlotte has not had the best day, she has nursed a little and had some breast milk from a bottle, the most she has taken in one sitting was 58mls.  Charlotte has also not been happy unless she is being held.  Most of the day she has spent in someone arms and that is where she will sleep and is happiest.  She has enjoyed her mommy jumping around and dancing like a fool for her, that has been the one thing that has given us some smiles today.

Charlotte is 10 months old today and it is hard to believe how quickly the time has gone by.  We have already started to plan her first birthday and are so excited about it.  Charlotte loves her puppy, Jax.  She also loves playing paddy cake.  Charlotte crawls all around the house pulls herself up and is taking steps along the couch to the coffee table.  She loves bananas, apples, cheerios, steak and peanut butter.