July 16, 2012…… The Plan and how to save a life!

Well we have been to Philadelphia and back ! Thankfully our trip to Philadelphia was for the most part uneventful and we met with an amazing team of doctors that think, sleep and breathe neuroblastoma. I will say that I was a little skeptical at first about switching hospitals, doctors, etc but after going there and meeting the team I know we were sent there because that is exactly where we were meant to be. Dr. Mosse is Bailey’s new oncologist there and she is amazing. (She reminded me a lot of Dr. Kanter at Tulane which was comforting in itself.) Upon getting to the hospital, we met with Dr. Mosse’s team and then with Dr. Mosse herself. She was very informative and patient, explaining CHOP’s approach to this horrible disease and what plans they came up with for my little girl…and yes, I said PLANS…as in more than one!!!! When she was going over all the different options we have and all the back up plans, to say I was overwhelmed would be an understatement. There was an instant peace that fell upon me and I knew at that moment it was God!

We talked about the treatment that Bailey will be starting in a few weeks. She will be enrolled on the MIBG/Vorinostat study and they have seen amazing results. It is a fairly new study (ongoing for about a year) but in that short time they have made tremendous breakthroughs.  I will try my best to explain what this treatment does and what she will go through but I am not a doctor so bare with me. Basically Bailey will be on a pill (Vorinostat) for 14 days and this pill is designed to block the active cancer cells in her body from being able to work and allows the MIBG to work more effectively. She will take two days worth of Vorinostat before the MIBG treatment will begin. The MIBG is basically a liquid radiation that Bailey will receive through her port for three days. This MIBG is designed to go right to any and all neuroblastoma cells and kill them. (One of Bailey’s routine scans is an MIBG scan in which they use a very little dose of MIBG to help “light up” the neuroblastoma cells so we know whether or not she is clear and if she isn’t where and how big the “spots” are.) With that being said, they formulated MIBG treatment which gives the patient much larger doses of MIBG which in turn goes directly to the active “spots” and destroys them. For the three days Bailey is getting the MIBG she will be inpatient. On day one they will put her under general anesthesia so they can place a foley cathedar to help drain the radiation out of her bladder. The cathedar will remain until we are discharged. During the three days inpatient, Bailey will be confined to a hospital bed. She will not be allowed to bring any sentimental toys or clothing with us because if those items are exposed to the radiation they will have to be discarded. Needless to say that will be the hardest part of this treatment…keeping her entertained! I will be able to stay in the room with her but will have to stay behind the lead shields that surround her bed. I cannot lay with her at night, sit by her during the day or hold her when she may need comforting. I will have to keep my distance as I will also be exposed to the radiation which of course could be harmful to me. Let’s just say I am praying those three days are the fastest three days of our lives! Mimi will be coming along as always so that I can leave the room to shower, take potty breaks and eat as I will not be able to do any of those things in her room. I will also have to stay fully protected by wearing a special gown, gloves, etc that will protect me from coming into contact with any of her bodily fluids (tears, sneeze, vomit, etc.)  which would expose high amounts of the radiation. There will be a radiation specialist that will come into her room every day to monitor the radiation levels we are exposed to. Once Bailey’s levels start to come down to the magic number needed to get us discharged, we will be able to fly back home. They said this would be no longer than 5 days  but in most cases on day 4 J Once we are home Bailey will continue on the Vorinostat until her 14 days have passed. During that time even though we are at home we must still be extra careful in how much radiation we are exposed to as she will still be ridding her body of the radiation. We will have to wash her clothes separately from the rest of the family, stay at arms’ length away when sitting or playing with her and minimize our skin to skin contact time with her. Once the initial 14 days are up we are good to go! Keep in mind during this time, aside from the 3 days in the hospital, it is 100% safe to be around her. We just have to follow the guidelines set forth by the hospital and add some extra steps in our day to day routines, but other than that we are free to enjoy our time at home in any manner we choose. So with all that being said as you can see we will be a little busy during the next couple of months, but we couldn’t be happier to take this next step. We along with her doctors are very optimistic that this treatment will get her clear again and allow us to get on better plans that help her remain that way for a very long time. We will are going to Tulane this week to do a full work up of scans and bone marrow aspirations and will repeat everything 6 weeks post treatment.

On another note we have set a date for the blood drive…Saturday, JULY 28, 2012!  ( I will post the flyer in a separate post with all the information) Please come out to support my precious little girl and help save lives! If you cannot donate you can still attend as there will be BBQ hamburgers, Bailey’s prayer necklaces, t-shirts, bake sale, bracelets, etc. Thank you as always for your continued support and prayers! NOTHING IS IMPOSSIBLE 🙂

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