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. 

 

 

Surgery Complete

Surgery is Complete

        This morning began Charlotte's treatment.  She started IV fluids last night and had those given to her through this morning.  I was able to nurse Charlotte until 6 am which was nice to help get some extra snuggles in while I could.  At about 2:00 today Charlotte went in for her surgery.  The doctors were able completely remove the tumor along with the adrenal gland.  The medport was successfully inserted on right side of her body.  This is where they will be administering the chemo medicine.  The pathologist was there and they were able to confirm that the mass is a neuroblastoma, which does mean cancer.  The following chemo treatments will be for precaution due to the cells found in her eye.  Currently the doctor thinks that this chemo treatment will be the enough to treat the cells found in the eye and that she will not require any additional surgery in her eye socket.   The oncology doctor was able to successfully extract a bone marrow sample that will allow us to rule out any additional growth of the neuroblastoma into her bones.  Our next steps now are to wait.  We are waiting on information on the N-Myc protein that will tell us how aggressive the neuroblastoma is and will give us more information on further treatment (looking for N-Myc amplification).  Currently Charlotte's oncologist believes that from the looks of things, her neuroblastoma is an intermediate risk and will be using the intermediate protocol for her chemo treatment.  However, if her N-Myc comes back with amplification they would do something different.   We will not know about this protein until probably a week or so from now.  Charlotte however, will start chemo sometime next week, probably mid week.  Charlotte is currently back with us and resting.  She has been able to have some breast milk which is awesome!! This means that they didn't have to do much manipulating of the intestines and allows for our very hungry little girl to get some milk into her body.  Now it's a matter of letting her heal and getting test results back.  

Prayer Warriors Needed

Prayer Warriors Needed 

         Our little Charlotte is in the process of being admitted into the hospital.  Back in January Charlotte had an ultrasound to get more information looking for reflux. During this ultrasound her GI doctor found two masses that were interesting but not of concern at that time. The doctor recommended a follow up ultrasound in three months to watch these masses.  Fast forward to March and we had our follow up ultrasound and the doctor detected that the masses had "evolved" and we were being referred to oncology.  Those dreaded words no parent ever wants to hear with their baby - oncology.  This is our worse nightmare.  However, there was nothing confirmed and nothing stating cancer yet so we knew we just needed to wait and continue with the tests.  The next test that followed was an MRI to obtain some better imagining of the mass in question.  The MRI gave us good information but the oncology doctor wanted another scan so we wait again. The doctors were looking specifically at a mass on her adrenal gland.   On May 3rd we went in for what is called an MIBG scan where they would look at what iodine did in her body.  This morning we received a call from her oncology doctor saying that they found a new spot in her orbit socket and they wanted us to come down to the emergency room immediately to get another MRI of her head this time and a CT scan of her chest and neck.  The doctor also said that we should pack a bag and expect to be admitted to the hospital and prepare for Charlotte to have surgery on the adrenal mass along with a biopsy.  We have been at the hospital since 11:30 this morning at this time.  They have done the MRI and CT scan and Charlotte is back in our arms right now.  They have decided to admit her to the hospital because the mass in her eye is concerning and they want to do surgery to remove the mass on her adrenal gland so that they can biopsy the mass and see what kind of tumor we are dealing with. They have said that this is most likely a neuroblastoma which is a common type of cancer among babies.   There are two ways this situation can go - first one is that this mass could be very mild and just requiring monitoring and hopefully it will get smaller and eventually become more like scar tissue.  The second possibility is that it more moderate to sever which means that it could require surgery of her eye and possibly chemo.  Right now we are just waiting - waiting to find out when her surgery will be and what comes next.  Right now all we can do is pray.  Pray for good results for the biopsy.  Pray for the doctors who will be completing her surgery that they have steady hands and quickly complete the procedure getting all the tissue they need,  Prayers for Charlotte's healing from surgery, that it is quick and without complications.