|
|
|
Living with Cancer
The day my mother was diagnosed with breast cancer was a tragic day in my life, but when she died on Decemeber 27, 1998, I thought my life had stopped. The thing is, I was so close to her, I felt lost in a big world, but I got on with my life and out of nowhere I am hit with the word CANCER again. I was stunned by the news as anyone would be, but why this little boy because he is an amazing child. He leaves a mark on anyone that crosses his path with his beautiful smile or adorable words. Cancer is a nasty disease, and even more so when it happens to childern, but my Gavin will see the Florida beaches again real soon with his big brother holding his hand.
|
October 28, 2005
Today, at eleven thirty this morning, Gavin received his stem cells back. The procedure took eight days of preparing and only twenty minutes of infusing into Gavin's body. He was given a new immune system today. The stem cells were in two little bags and each bag took ten minutes, the procedure went well. The rest of the day Gavin was feeling horrible. He had to take a steriod in preparation for the transplant and this made him very restless. He also has a rash on most of his body that has him wiggling all over the place because he can not get the itch to stop. He is on so many medications to treat all his side effects that have happened to him that it is hard to know how to fix each problem. Today was the hardest day for me. To have my baby in so much pain and discomfort and not being able to make it go away is very heartbreaking. Today his new stem cells are finding their way through his body so they can start making his new immune system. This should take about three to four weeks, But he will not have a normal immune system for about six to eight months |
|
May 1,2006 / Life without the Goosey
Life is so different without my beautiful baby boy. I have to find myself all over again and it is so hard. Hospitals,doctors and nurses were my life and now I have to come back to the normal world. I know that my little goosey wonder is happy in heaven and free from pain, but I still can not understand why this had to happen to him. I hope that one day I can. Kyle says that gavin is up in heaven rolling down stairs and climbing up walls because in heaven you can do that. Kyle is so amazing. Gavin could not have had a better brother. Kyle tells me that he thinks about Gavin, but will not talk to me about it. I hope that in time he will because I don't want him to ever forget his baby brother. May 4, 2006 I feel so lost without my baby. I keep thinking that there is something I need to be doing, but then I realize that I have done everything that needs to be done. Its just that when Gavin was here I was always doing something, like flushung his lines, hooking up medicne or changing a diaper. Now I feel helpless. Gavin made me learn so many new things and now I don't need to know them. I am so angry. I miss him so much. He made my life wonderful in his two years. He smiled more in his two years then some people do in a life time. I am going back to work and I am hoping it will help fill my time. I hope one day everything starts to make sense, but for right now I still don't see why Gavin had to be taken. May 12, 2006 I thought that as the days went on life would get a little easier, but instead I am finding that they are getting harder. I hate sitting in my house when Kyle is not here so when he goes to school I go out. I don't really have anywhere to go, but being away from the house makes the day go by faster. I start work this Wednesday, I am hoping that it will help me. I just look at Gavin's pictures and see a happy beautiful baby and can not grasp why all of this has happened. I gave Kyle a framed picture of Gavin to keep in his room the other day and every night before he goes to sleep he looks at Gavin. He misses him so very much. I just wish I knew what he was thinking. Gavin is my little hero and will forever be my amazing two year old son. May 16, 2006 Well Mother's Day wasn't as hard as I thought it would be. I guess because I was busy all day. We went to Pimlico and bet on the horses. Kyle had a wonderful time. I start work tommorrow, so my life will begin a new chapter. Gavins oncologists gave Brian, Kyle, and I the autophsy results yesterday. So the bottom line is Gavins lungs had received so much damage from the PCP that they would not have been able to recover. His immune system had no idea how to fix the damage properly. They said in the end that Gavin was only using 5% of his lung capacity. His was a strong fighter right to his very last breath. I still can not process the fact that he beat the cancer just to pass on from some other illness. One day I hope I will be able to, but for right now, I am just going to take life one day at a time. Thanks for all the prayers.. Goodnight my angel .. May 27, 2006 Today I have thought about my goosey so much. Every time I sit down I think that there is something I should be doing for him. It is the strangest feeling I have ever had. Maybe it is his way of telling me that he is ok , I don't know. I don't know if things will ever be ok again. I started back at work last week and everyone asks me how I am and I say fine, but it is a big fat lie. Only the mothers that have lost a precious child know how I feel. Gavin was the greatest gift I have ever gotten and he will be treasured forever. I love you my angel goose!! July, 17 2006 Today my sister, nephew, and brother left to go back to Florida. My house is quite again. I can't stop thinking about my Gavin...I don't know how my life will ever be completely happy. Gavins headstone is up and it looks good. Kyle says it is perfect..He is such a wonderful boy. We got a dog a couple of months ago and he has been wonderful for Kyle. He is a yorkipoo and his name is Charmander. I wonder what Gavin would have thought about him. I still have not gone through Gavins clothes..it makes me to sad...everything bothers me and it is hard to be happy all the time...I really enjoyed having my nephew Adian here, he is six months and as cute as can be. He will be back soon though when baby Addison is born. October, 5,2006 Today, I am looking at Gavins pictures and I can feel what it was like to rub my face on his beautiful bald head and i miss him so much. I am so angry still...I don't know when this anger will go away. I wish I could go back and have one more day with him..I then might be able to let go, but I know that is not possible. Everyone says time will make it better, I am finding time is making it worse...Kyle is going to be a dragon slayer for Halloween and I am going to make the costume..that is scary! Sweet Dreams my Gavin , I love You! October 18,2006 Last night, Kyle and I were watching a old episode of Greys Antamoy and someone said they didn't believe in God and Kyle said thats not true because if there is no God then who is taking care of Gavin. It is amazing to me how he believes without a doubt that Gavin is up in heaven living a new life. He has such love for Gavin, that he told me that he hears noises in his room and he said that it is Gavin. Kyle said it is because Gavin wants to be with him. Kyle has amazing courage..Why does cancer have to invade our lives..As Nuna has said Poppy has cancer, but Kyle does not know yet..I thought as a mother I could say anything to my child, but how do you tell an eight year old that is grandfather has the horrible diease that killed his brother only six months ago....I am lost.. October 21, 2006 Today is my moms birthday, I miss her so much..I bet that she and Gavin are having a party up in Heaven. Kyle and I went to see Gavin today and Kyle put a pumpkin on his grave and the pumpkin had a doggie face drawn on it..it was very sweet..
|
|
|
January 7, 2005
Gavin and Kyle had a wonderful Christmas thanks to the kindnest of strangers. It was such a blessing to have my family together for the holiday. Nuna and Poppy were also with us. They are two of the best people I know. They put a year of their life on hold to help me take care of my childern without a second thought. Nuna went back to work this week after being off for three months and all she kept saying is that she is scared that she is letting me down. All I know is without them I would have not made it through this year and I am forever greatful to have them in my life. My dad wishes he could be here with me and my family, but he has to work and take care of my little brother. I only wish my mother could be here to see her strong, brave grandson. She would be so proud. I am trying to have only the best thoughts about 2006, but it is hard. Everytime I think things are headed in the right direction it changes to the wrong one. Gavin really needs to eat and start making some platlets. Kyle told me last night that when he goes to bed at night he thinks about Gavin. He thinks when is this all going to be over and is my brother going to die. I told him hopefully soon and no Gavin is going to be the best man at your wedding. He is not going anywhere. It was so heart breaking. We both were in tears. Kyle is wonderful and loves his brother so very much. He will do anything for him .
January 12, 2006
Gavin had an eye doctor appointment yesterday and he is going to need to have his bottom eyelashes on his right eye plucked out because they are growing into his eye. It will be yet another procedure he will have to be asleep for. He is just the sweetest little guy. I am so lucky that I get to be his mother.
January 18,2006
Today Gavin had the NG tube placed in his nose to feed him. This is a tube that inserts through the nose and goes down into the stomach and formula like food is fed to him by a pump. For the first few days it will have to be a continuous feed for twelve hours during the day and then hopefully he can get down to being fed at meal times. The doctors want to do slow continuous feeds first because he has not used his stomach in so long. He also had his feeding class evaluation and will continue to have them every Wednesday starting in February. They just try to come up with one plan and method that excites Gavin to eat and I have to perform they same plan at home. I really hope it works. He is still needing his blood and platlet transfusions and is very clingy to me. His hair is really growing well.
I just know he wants to eat and with time and patience he will eat again.
February 7, 2006
Today Gavin turned two and had to celebrate his birthday in the hospital. He had to be admitted again on Monday because he had another fever. He only has a fever though ..no other symptoms...but the doctors have to be very cautious when it comes to transplant patients. It was just awful sleeping on the chair bed again. I am so lucky to have Nuna though. She is staying with Gavin tonight. He has been in a happy mood and that makes being there better. He just had a bone scan and everything is normal...Yeah! Thanks for all the emails, prayers and support.
February 10, 2006 Today Gavin had clinic and received blood and platlets. The results of his MIBG scan (looks for neuroblastoma in the body) are excellent...Yeah.. He has more hair growing every day I can not wait for it all to come in.
February 17, 2006 Today I took Gavin to clinic for his normal Friday visit. His white blood cell count was good so I think his bone marrow is starting to work..Yeah!
His energy has gotten way better also. He plays more with his toys and walks around the house and can even climb the stairs. I think this might be the turn we all have been looking for and then the next turn will be to get him to eat.
March 17,2006
Gavin has had a busy week. On Monday he had a hearing test under anesthesia and the results came back saying that he has high and low frequency loss in both ears. This is a result of the chemotherphy. He will need to be fitted for hearing aids down the road. On Wednesday he had an MRI to look at his right hip under anesthesia. Those results came back showing inflamation in the hip area and should go away with rest and time. Today he had a scope down his GI track to look at his stomach and digestive system. His poor little stomach is a wreck and he is starting to show the first signs of liver diease. This is a result of not eating, being on TPN and chemotherphy. So he had a tube placed back in his nose, but this time it was placed past his stomach so hopefully he will be able to handle the tube feeds.
This will help to restore the liver because he will start using the bile that the liver produces. Then hopefully in time he will want to start to eat, but right now the doctors say it would be painful. He was such a wonderful trooper through all these tests. He continues to amaze me everyday. These were hard things to have to accept after everything that we have been through, but we will get through this as well. Gavin is full of strengh and I have not run out of mine yet. April 6, 2006 My beautiful baby boy lays helpless in the ICU since last Wednesday. He is on a ventalator still, but the doctors are pretty sure they have tackled most of the PCP. We are slowly making progress on weaning him off of the ventalator. I just am waiting as patiently as I can to hear him say mommy hold you. I am missing those three words so much. He is so very strong though so he will get better soon. Thanks for all the prayers and support. April 11, 2006 Today, Gavin was taken off the ventilator. Yeah! Now we have to get him used to breathing again. He is so strong. Hopefully, he will be home soon and we can start to have some what of a normal life again. It is so weird how hospitals, Doctors and nurses become normal every day life, but that is what has happened to my family and now it is hard to imagine going back to normal life again. My dad and my brother are coming to Maryland on the 26th. They have not seen Gavin since he has been diagnosed so I am excited they are coming. |
|
|
|
