August 15, 2014… Be Still

Here goes the start of another long blog…so sit down and get comfy! As you all know Bailey started the new chemo, Crizotinib, last month and we were hoping this would be easy peasy and would buy us some time until the T-Cell trial in Texas opens up. Well as life goes, easy peasy isn’t always in the cards. The first week Bailey was on chemo was the week of my last post. That night we went to eat at one of our favorite restaurants, Tokyo, to celebrate the twins birthday. Everyone had such a great time and Bailey ate so well…things were good…or so we thought. The next day Bailey had some nausea and really didn’t want to eat very much. Well needless to say the nausea turned into vomitting and then she really didn’t want to eat anything. Of course being the persistent mother hen that I am, I used my tatics to convince her that she needs to eat to keep up her strength, to help the chemo work, blah blah blah blah (insert all the things you are supposed to tell your children when they don’t want to eat healthy or eat at all in this case). Well later that night I convinced Bailey to try to eat some noodles with butter and she did but after two bites it all came up…so what do you do when food doesn’t stay down, you convince them to drink…so on with that coercion. So in the days that followed I could get her to drink and take her pills but not eat. She kept saying her throat hurt and it hurt to swallow. Well considering some of the side effects of the chemo she was taking was sore throat, difficulty swallowing and decreased eating …I, as well as Dr. Bob,  just chalked it up to chemo side effects. Well after a week of this I was convinced there was something more to it as side effects normally get better after a week once the body adjust to the drug and that wasn’t happening. We had an appointment on Thursday, July 17th with Dr. Bob so I asked him if we could just do a scan to make sure the tumor in her neck hadn’t grown and wasn’t causing some of these issues (because the tumor in her neck is visible and can be felt by rubbing your hand across her neck…yes it is that big)…he agreed and said he was thinking the same so he scheduled a CT. Well thank GOD we did that scan! The scan showed the tumor was stable and hadn’t grown BUT there was something lodged in her throat. Can you guess what it was???? STEAK from when we went eat out the week before!!!! So apprarently when she threw up the next day, the steak (which wasn’t digested yet) came up and got stuck…and had been stuck ever since!!! How in the world my child was able to stay like that for a week, never complain and still manage to get her pills down everyday is simply beyond me. The GI doctor took one look at the scan and said an adult wouldn’t have lasted an afternoon with that in their throat…Bailey was going on a week! So our trip to get platelets and blood turned into a procedure to remove food impaction.

So on to the “simple procedure” of removing the steak that should only take about 30-45 minutes. We go across the street to the main hospital to do the procedure around 4pm and they take Bailey to start the procedure around 5pm. As I was sitting in the waiting room with Megan, our good friend that is also a patient of Ochsner’s (that has quickly become like part of our family), I notice that 45 minutes has come and gone but no one has come out to tell me how things went…then it has been an hour… then in walks the nurse. As she approaches us she says, “Well Bailey is doing fine but the steak is really impacted and we are not sure how long it will take to get it out…they may be in there awhile and possibly through the night.” UMMM ok so we wait a little longer??? Well after 3 HOURS a different nurse comes in to let us know they were finally finished and all of the steak was removed and the doctor would be in to talk to us soon. So again we wait…well here comes Dr. Serrano (which by the way is an AWESOME GI DOCTOR…so compassionate and so very caring). Dr. Serrano proceeds to explain that the steak was really impacted and becasue it had been stuck in her throat for a week, it began decaying. She explained that they stopped counting after 80 passes (in and out of Bailey’s throught with tubes and instruments) because it was coming out shred by shred. Bailey’s esophagus was exremely raw and would take some time to heal. She then went on to say they would come get us shortly to bring us to the ICU where Bailey would need to stay intubated and sedated for awhile due to the simple procedure not being so simple. Yes I said ICU!!! My poor girl has been fighting cancer for 4-1/2 years and a freaking piece of steak lands her in ICU on a vent…I mean can she catch a break already!

Well up to ICU we go…thank GOD Meghan was there with me (I mostly travel to New Orleans with Bailey by myself now, because it is just easier for Mimi to keep Ellie at home on clinic days because the older she gets the more she wants to crawl and not sleep so it makes for very LONG days when we all go)…I didn’t know it then but I would need someone there so I would have to keep my brave face on so I didn’t lose my sanity in front of everyone trying to take care of my girl…never did I think for one second that morning I would end my day in ICU with Bailey!!! As we enter ICU, there was my sweet girl…laying in that hospital bed while a machine was helping her breathe…another sight I could have went my entire life without seeing again. The last time I had to see her like that was when she was diagnosed… I hate it. No parent should ever ever ever have to see their child in that state…she is an 11 year old little girl that should be painting her nails, playing with friends, watching tv, playing with her sister and brothers…not laying in ICU on a vent all because she has to fight stupid cancer!!!! As much as I trust God and believe HE will get her through this…I still have days where I want to scream IT ISN’T FAIR!!! I am human, I am her momma…I get mad and angry at this situation…she is my daughter…she is only 11…CANCER SUCKS THE BIG ONE!!!

Thankfully, in usual Bailey fashion, she pulled through like a rockstar!!! The very next day they decided to try to wean her off the vent and she immediately started breathing on her own with no troubles! Daddy, Mimi, Seth, Aidan and Ellie all drove up to meet us and stay for the weekend (which made me so very happy). The time came to take her off of sedation completely so she could start waking up more and they could take the tube out of her throat…not a pleasant experience for anyone!!! As they were taking the tube out of her throat, Cody walked into the room and she looked at him and with the most hoarse voice ever and says, “Hi Daddy” and smiles…my heart melted. With everything she had been through those past two days I would not have blamed her one bit if she would have screamed, yelled or even tried to hit one of the nurses that were pulling that tube out…instead she remained calmed and was still. Always reminding me “Be Still…”

We decided to give Bailey a break from chemo to let her body heal and then retry but unfortunately when we tried again things did not go so well. She began having a hard time swallowing again, didn’t want to eat, ran fevers…overall just not a good fit for her. So we are back to figuring out what to do next. There are not many options left for her and unfortunately trials are few and far between due to funding and all the hoops and hurdles the FDA puts on trials and the eligibility to be on them. We are still waiting for the T-Cell trial in Texas to open but as of now we do not have a guaranteed start date. We have been talking to the doctors at MUSC in South Carolina to see about arranging treatment there but everything is still being discussed between them and our home hospital. Praying we have a plan soon as my sweet girl cannot wait much longer to start something. In the meantime we just pray and pray some more. It is so hard to have patience when you know this stupid disease could spread so quickly and without warning. I am so thankful we believe in God and in the power of prayer…quite frankly I don’t know how people can endure this journey without believing. Things get scary and the unknowns can get the best of you at times…well most times…but when you have faith and hope, you can always fall back on the promises of God to remind you that HE has your back. HE is totally aware of your situation at ALL times and is working behind the scenes, even when you can’t physically see it. For that I am thankful…we are blessed!

Please continue to pray for guidance…guidance for these doctors and guidance for me when I am making decisions that affect my little girl’s life. Never in a million years did I ever anticipate I would have to make such big decisions…you just don’t think of that when you have a child. Don’t get me wrong, raising a child is a huge responsibility in itself, as what you teach them and how you raise them is molding them into the adults they will become…but making decisions on how to keep them alive…well it sucks. It is a heavy burden that will constantly keep you questioning yourself. Again,  so thankful I can rest in God’s peace knowing HE IS THE ULTIMATE HEALER and no matter what HE is working things out for her…in every situation for the present and the future. We will never stop believing in her miracle…we will never stop believing NOTHING IS IMPOSSIBLE!!!

Mark 11:24 “Therefore I say to you, whatever things you ask when you pray, believe that you receive them and you will have them.”

August 2014