Hey all…I know it’s been awhile since the last time I wrote. We have been waiting to find out what our next part of our journey is; whether it is with CHOP or Sloan. Okay, before I get into that, I will fill you all in what has been going on over the last 2 weeks.
So we finished out our time in Florida. Trey had a great time! It was nice to see him on the beach, playing in the sand and water, smile at the Disney characters, enjoy the rides and just relax. Eating was a problem and a major stressful time. We found out that he lost 2.5lbs while we were away (which is a lot for Trey.) We got back last Sunday afternoon and had a great visit from family friends and had a wonderful time at a friend’s house for Memorial Day.
Last Tuesday Trey had his port surgery at CHOP and at that time we believed that we were starting chemo at Sloan today, June 6, 2011. The original plan was to stay at CHOP and start chemo there. Well, basically it was a cluster you know what. We hadn’t yet been approved by our insurance company to go to Sloan, so after the operation, we went home. Trey was in pain that night. We also had decided to put the NG (feeding tube) back in because of the amount of effort it takes to get Trey to eat/gain weight. We started the feedings on Wednesday and yup, you guessed right…up came the tube and Mike and I had to drop it again…which in my opinion is the worst thing ever. Trey screams the whole time and fights us all the way. We really need 3 people now to hold him down, but we manage.
Last week was just plain crappy. We really did nothing but lie around and watch T.V. We made the living room into the “living room” complete with an areobed and all. It should have felt great considering we really haven’t sat in our house since March 20th. I didn’t touch my phone or computer for a whole almost week…wow:) Honestly, I sat around shaking. I haven’t really had a spare minute alone with my thoughts since March 20th, even in Florida, and it really wasn’t a good idea. Mostly I sat there looking at my baby wondering if this was really happening. I just can’t believe that this is happening. On March 19th we went to bed with a semi normal 4 year old that could walk, talk and at 5 am on March 20th, we were awakened with a little boy who had just had a stroke. That day I watched my little boy, surrounded by 20 docs and nurses, almost die in the very same room as me. His blood pressure dropped to 38/14 and the nurse asked me if I was ok with being in the same room. Calmly I told her I was fine and surprisingly my eyes were dry. I looked at the chopper pilot like he was crazy when he asked me if I was nervous about being airlifted to CHOP. Nervous about a helicopter ride?? Really, the entire ride I prayed into the sunrise that God would take us both now. At least if we went down, Trey wouldn’t know what was happening and honestly the thought of dying at that moment was a relief. I really don’t think that I would have been afraid. There is nothing more that scares me than the thought of losing my son. Then when we were at CHOP, we were sat down in a tiny room and told that our son had no chance of surviving this. No parent should ever have to hear those words. That day was enough to send me to the loony bin and the only reason I am not there is because of Trey. The last week was hard because every time I put Trey to bed, I kept thinking what if?
Anyways, so the entire plan is crazy and different from what we had originally thought. Our insurance company has denied us treatment at Sloan. We start the next round of chemo at CHOP this Wednesday the 8th to Sunday the 12th. We have to wait 2 to 3 weeks before the 8H9 treatment anyways, so hopefully the docs will be able to convince the insurance company that Sloan is necessary. We just found all of this out today. My nerves are shot. Last week it was back and forth between the insurance company and Sloan. Ugggg.
Saturday we finally got “up” and went to a fair, to dinner and to see Kung Foo Panda 2. It was a fun day and Trey had a great time practicing his Tae Kwon Do skills throughout the movie:) Today he decided he wanted to roller-skate and ride his bike, so that is what we did. The kid never ceases to amaze me. Tomorrow we are going to the Phillies’ game…woohoooo:) Thanks to our very special Phillies’ lady. We love you and are so grateful for what you have always done for us:) We are EXTREMELY excited, not just because it’s a Phillies’ game (we always are excited for our Phils) but because we are getting the Halladay (as in Roy) Box with other dear onco families and friends. Wooohooo!! Sounds like a great night to me! Thanks again special friend!!
So that’s it for now. Please pray for the insurance to allow us to go to Sloan. I mean, I don’t really care what they have to say….if we have to pay for it all out of pocket, then they can bill us. I feel very strongly about Trey getting this treatment. Also please pray for our neighbor. His name is Thomas; he is 12 and was hit by a car while we were in Fla. He had brain surgery and his entire left side was shattered. He will be in CHOP for 3 to 6 months.
Make sure you remember to kiss your loved ones before bed. You never know what tomorrow will bring.Learn to forgive and forget. That doesn’t mean you have to like everyone, but you will feel better once you do. People are people. James 1:19-2119 Understand this, my dear brothers and sisters: You must all be quick to listen, slow to speak, and slow to get angry. 20 Human anger[a] does not produce the righteousness[b] God desires. 21 So get rid of all the filth and evil in your lives, and humbly accept the word God has planted in your hearts, for it has the power to save your souls.
Be quick to listen and slow to anger…..wow, if you know me, you know that is a hard thing for me to do. But it is something my mentor, a very wise and kind man, has been teaching me for the last 3 years. It has helped me a lot with living a better life in general. I will always be me and I will always say what is on my mind, but I have learned to listen, forgive and accept that some people just cannot change. Sorry that this update is all over the place….my mind is running fast. Faith, Hope and Love-Missy