Thursday, May 6, 2010
Back in the Big Apple!
We are at it again! Gavin's 2nd cycle of 3F8 has been quit rough!!! He is so tough and handles things like he's bullet proof! We got out here at 6:00am Monday morning! Had to be to the hospital by 9:30am so I didn't get much sleep at all and we waited 6 hours to get a room to start his injection. He handled the first day very well! Still had alot of pain but he has learned to breath through it and knows just the "right words" to say to make it feel better! (which are words most parents would be embarressed to hear come from their child!!!) Tuesday was pretty smooth, no pain till the injection was done and the flush started! In saying that, he still had to use all his "rescues" (5 doses of dilauded) Wednesday was HORRIBLE! His IV blew out so they had to place a new one which was extremely painful, the pain from 3F8 started half way through injection and lasted about 15 minutes then to top that off he broke out in hives that affected his "nether regions" and the roof of his mouth! He keep screaming he was on fire :( it was pure HELL! Today has been alot better. He amazes me, watching him go through this and how he learned to breath through the pain and rather then saying, make it stop, he just askes, through gritted teeth "how many more minutes, mom" I'm telling you all.... I have given birth to an Angel! He keeps me going, makes me smile and the Love I have for this boy is a love i know I will never feel for anyone else (besides his brother, of course!!!) I'll try to update more often but life has been crazy in SL and then coming to NY is just as insane!!!! Please keep my little man in your prayers, Lord knows he deserves them!!!! Love, Jamie
Friday, April 9, 2010
3F8
WOW!!! What and extremely rough week this has been! I was so excited to get Gavin out here to get this treatment, I just had the best feeling about it and all the research I did confirmed that we needed to be here! In saying that.... I got so discouraged, Thinking that maybe, just maybe I made the wrong choice for my son! He is so little and so young and depends on ME to make the right choices for him! This treatment was more painful then I could have ever imagined (not as bad as I prepared myself for, which is good!) I started meeting so many families out here, so many little kids that have gone through or are getting this 3F8 treatment and at that point i wondered, Is this worth it?.?.? These last two days were really rough on him. He asked me how I could let "them" do this to him and told me he couldn't do it anymore. Today, the last round of 3F8 in the 1st cylce, was REALLY hard. He only had about 5 minutes of pain but it seems like it was the worst out of each of the days. He even went as far to ask me if he was dying.... It was so hard, knowing that the choice -I- made put him in that bed to endure such pain!!!! I was really re-thinking things until, I got on a website called Band of Parents (www.bandofparents.org) to do somemore research and reasure myself that we are doing the right thing and let me tell you.... That helped me KNOW, FOR SURE that this is where we MUST be to get him through this! Although the pain is rough and it's so hard to see your baby go through this... It's gonna make THE differance! It helped boost me back up, refreshed my memory and reasured me, I am doing right by him! I ask each one of you to go check out that website... It's such an eye opener and, for my Gavin, I will be doing donations to them and I would love to do a fundraiser for them someday to help raise money to find a cure for this Evil Monster they call Neuroblastoma!!!
Friday, April 2, 2010
This boy makes it ALL worth it!!!!
I woke up this morning feeling a bit down, a little depressed and so lonely. Gavin slept in late which gave me way too much time to think! When this amazing little man woke up the first thing he asked me was... "Mom, what's the black sonic's name?" Bet you can't guess what he was dreaming!!! Anyway, Just with that and his sweet little voice it pulled me, semi, out of the funk I woke up in!!! I decided to get him up. We went down to the kitchen for some lunch and then we went to the Central Park Zoo! This is what keeps me going! This little man and his amazing spirit, smile & strength!!! He is truely MY little HERO!!!!
Monday, March 29, 2010
Gavin get's his picture taken with a performer in times square!!! We went to Bubba Gump for dinner! It was so good and Gavin says they have the BEST Ribs ever! Even better then Papa's!!! (shhh, don't tell Brad that!)
His FAVORITE ribs ever!!!
His FAVORITE ribs ever!!!
Inside the Toys R Us in Times Square!! Gavin and I on the ferris wheel in times square!!! He was so so excited!
Gavin with some of his new friends! Dimitri (white shirt) and the boy in red is from Greece and can't speak english so we've never learned his name!!! (both are fighting Neuroblastoma!)
Gavin with some of his new friends! Dimitri (white shirt) and the boy in red is from Greece and can't speak english so we've never learned his name!!! (both are fighting Neuroblastoma!)
Gavin and some more of his friends. Antwanet (pink shirt) Dasia (purple hat) and Ryan! All 3 are also fighting Neuroblastoma!
Gavin just had to take this picture of me after I took one of him by this statue! He did a really good job! This is in Central Park!!!
This is Gavin's Skeleton! He had to get this test done to make sure there was no new growth! If there was it would light up brighter then his bones! During the MIBG scan! this machine is HUGE!!! Way bigger then the one at Primary Childrens! This test last's 90 minutes and he had to lay very still, like a statue or they would have had to sedate him!!! He did GREAT!!! He layed there, so still, the whole time!
New York City!!!
As many of you know, We have come to New York City to the Memorial Sloan-Ketting hospital for Gavin's treatments! We are having so much fun here! This is a photo of him in the Salt Lake Airport waiting for our plane to New York! It's been a once in a life time oppertunity that, unfortunatly we'll be doing 7 more times (or more!) The Hospital here is amazing and the people here are very friendly! I plan on keeping this up to date (since i haven't been doing a good job thus far!) with all the news and fun things we are doing while here! We left Salt Lake on Sunday, March 21st at 11:50pm and arrived in New York at 6:25am the following morning! Our first appointment was at 2 o'clock that afternoon! The news i've learned is very promising with some being a bit discouraging! I still feel really good about this treatment and have all the faith that it will help Gavin to the fullest! Please enjoy the pictures of some of the fun things we've been able to do thus far!!!
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