Thursday, May 5, 2011

Just where do we belong ..

Do you ever sit and wonder just where you belong? I do ever day. We have wonderful Cancer Family friends and, we hold each one dear to our heart. The only thing is that even though Gabs had Cancer we just don't feel we belong. I get lost in all of the Chemo and Cancer Drugs talk. We were lucky Gabs had one set of Meds and along with surgery they worked. Also Gabs has been in remission for so long and for this we are grateful. However when talking to other Cancer Mommies it makes it difficult. In ways it makes me feel even more guilty then what I do already.

I know Gabs is very lucky. We caught his Cancer early and he is surviving. And I am forever grateful for this. But the question has always been ... Where do we fit in? With Gabs Cancer he is 1 in 5 million! We have only found 9 other families (This after Gabs was in remission) with children who have this type of Cancer. We do not fit into any Leukemia groups or the Neroblastomas or the Brain Cancers. (to name a few) We are a small group all on our own. When Gabs was first diagnosed it was hard to even find out info about his Cancer it was so rare.

I know I can say my child is unique. After all how many babies can you say are born with Cancer and start Chemo at 5 weeks old. My son is amazing and one of a kind. I am truly blessed to have him in my life. It is just this one thing that stumps us. While other Onco Mommies are talking about Chemo or Cancer Drugs or new experiments I sit quietly. The truth is I know nothing about these. Like I said Gabs had one group of Chemo drugs and surgeries. In a way I feel out of place. I have so much compassion for these families yet I feel like differences spread us all millions of miles apart.

It is even harder when a family in our group loses a child. The guilt pours so heavy. What do you say to a friend .. a fellow Mom who has just lost a part of their life. Nothing that is right Nothing because we can say all the condolences we want and even though we mean well it will not make her feel any better. Especially when your child is living. I know this may sound harsh but it is true. I know this because before both of my sons I lost a baby. And even though it is a little different I know how that pain is. And now being in this situation here I can understand how these Moms must feel. And although I always keep them in my thoughts and prayers I know that will not ease their pain. And then the guilt comes ... Ah yes the guilt. I often think of why Gabs is still here and his friends are not. With this comes the pain in my heart. The feeling of helplessness. How can another innocent child so full of life and love be gone. Another family crushed and torn.

I realize I have been sitting here rambling but, I must admit it felt good to let some things out.

Thursday, June 18, 2009

Saturday, June 13, 2009

So I lied ...

OK so I lied! I was just going back to the beginning and OMG that would be a heck of a lot of CCPing LOL. So instead of that you can visit his MySpace page for the past updates if you have not seen them. 

As for now it is time to move onto the future! So all future updates and posts will be on here! I will have links on the side when I am done for Gabs MySpace along with other wonderful sites!!! 

Gavin Jon's Story

Gavin's Story
Gavin came into this world 3 weeks early. He was born blue but all he required was a little oxygen and lots of love! 

When he was about 2 weeks old we started to notice he was really fussy .. after taking him for a visit to his doctor she confirmed he had a touch of colic. So we took the actions to try to make him feel better (change his formula rock him all night etc)Instead of getting better he just seemed to get worse! He would stay up all night screaming and crying in pain. On another visit back to the doctor she couldn't find anything wrong with him other then colic .. he was growing good just clingy and gassy! It was on that doctor visit that we were also informed that Gavin's newborn screen came back abnormal ... and we went back to the hospital for another one. While there instead of drawing labs from his foot the nurse drew them from his arm ... We had no idea that one moment was going to change our lives forever! 

About a week after the lab draw we were due back at the doctor's for Gavin's one month well baby visit. As my mom was giving him a bath she noticed something horrible! On his right arm where the nurse had drawn blood from just a week prior was a pretty good size ball shaped mass! Our first thought was my 6 year old had picked up from the bassinet and hurt his arm but he didn't seem to be crying over it so that scared me. We got him ready and rushed him to the doctor and her first thought was it appeared to be broken !!! So we were sent over to the hospital for X rays , but with him being so little even our doctors Orthopedic surgeon could not figure them out. So it was advised that we go to Riley where their X Ray techs were better at dealing with such tiny patients. 

After spending a night in the ER one of the Orthopedic Doctors thought it to be a collection of blood from the lab draw that had collected under the skin. This was on a Friday morning. He asked us to come back the following Wed. so he could check up on it with a follow up Monday morning to our regular family doc so she could measure it for him. He reassured me that he didn't think it was much to worry about and that it would more then likely go down over the weekend. 

Well the weekend came and went and it in fact didn't go down but looked to be a little bigger! So on Monday morning we went to our doctor and she measured it ... it was 2x3 on Friday and by Monday it was 4x3!!! She updated the Ortho Doc and we were told to be there Wednesday. I just knew it was bad news! 

On Wednesday we went to the Ortho doc and he looked it over again and indeed it had gotten bigger.Gavin was scheduled for a MRI the next day and a Biopsy for that Friday! He let us know ahead of time he thought he was dealing with a cancerous tumor but wouldn't know more till after these 2 test. Gavin went in for his MRI and did outstanding .... and then the next day was the big B day as I like to call it. Another day that will forever change our lives because on this day we were told our precious 1 month old son had Cancer! 

We were told he had what is called Infantile Fibrosarcoma a very RARE cancer of the soft tissue that some infants are born with. It all made sense now all those nights my poor baby had spent crying and screaming it wasn't just colic that was hurting him but the cancer in his arm. 

within 2 weeks and a couple more test Gavin had a central line surgery and within a day he started chemo. We were told early on that he may lose his arm at the elbow if the chemo didn't work. The tumor had already grown just a little bigger then a golf ball but on his little arm it looked HUGE! 

Gavin had 4 rounds of chemo consisting of a big one with all 3 meds and then for 2 weeks just one med a week. This really was hard on him like any child but with a little newborn you could just imagine he was so weak and frail and while other babies his age were already over 10 lbs Gavin was barely making it to 8 lbs. 

But after 4 rounds of chemo the tumor had shrunk remarkably!!! And we were now ready for surgery ! Gavin had his surgery to remove the tumor and we were optimistic that things went great! He even got to go home the next day!!! Sadly a week after his surgery on an appointment to the Ortho doc to remove his bandages we were dealt the devastating news that the cancer was not gone and it looked to be worse then what they imagined. Where as the tumor had shrunk and they were only expecting to find 10 percent if not less cancerous cells left there was over 70 percent! The cancer was still on the tissue surrounding his tiny lil bones. We were told then this time he may lose his arm. I prepared myself and kept saying I would rather it be his arm then the life of my beautiful baby boy. 

A week later he was sent back into the OR for another surgery on his precious arm ... This time they were taking the tissue off the bone (he had already lost a large amount of muscle and tissue and nerves during the first surgery) a pathologist was on hand for this surgery and would determine the fate of my baby boy. After 2 hours of surgery we were told the surgery was a success and Gavin would be able to keep his arm!!!! 

He has extensive damage to his right arm and is now going through OT once a week for 60 mins and PT 2xs a month for 60mins. He is behind in a lot of things but he is determined to do it all and not let his arm or anything stop him. And we are happy to announce that on JUNE 29th, 2006 Gavin was pronounced in Remission and CANCER FREE ... He is my hero and I am proud to call him my son! 

We will still have to be at Riley quite a bit .. Gavin still has to see his cancer docs to make sure it NEVER comes back ! We were told for at least 5 years! But thanks to the Doctors and Nurses at Riley Gavin is a happy and joyful 6 month old. 

We are greatful for all the love and support he has received at Riley. Words cannot express all of the feelings we have and never will but all I can say is thanks to Riley I have my little boy and there is nothing more precious then that!

Gab's NEW Blog Home!

After thinking about it I decided to move Gavin Jon's blogs over here to blogger! I really don't MySpace anymore and I know a lot of our friends have been asking how he is doing. Also I will be bringing over his old posts from JM and MySpace in the order they were written then go from there, So with that said Welcome to Gavin Jon's new space!