November 7, 2006
Poppy is going for his last round of Chemo on Wednesday. They did an MRI but we do not know the results...I guess we could call and ask..its funny how we have not done that..I guess no news is good news..it really dosent matter..it is what it is..He now has focal seizures..caused by the tumor..they are focused in his legs and he gets two or three a week..they scare us because they are ugly to watch but it all stinks..
October 15, 2006
I went to Gavin's grave site today to put a small pumpkin and scarecrow on it...He would have been a mouse this year..it was a costume I made for his father and his brother wore it when he was two years old. Christina may have had other plans. She is sewing a custome for Kyle this year. As I sat alone by Gavin's grave and cried I felt no peace. I keep waiting for peace but I have no feeling of calmness. Im not angry I just hurt. Poppy is in the hospital just finishing his second round of chemo..He dosent look good..his leg is badly swollen..his eyes have dark red circles around them. He says he is very tired and he is not eating like he should. He had a fever of 100.4. My sister, who I love with all my heart, has decided she can not decorate for chemo like we did for Gavin but we could have food themed chemo's..the first was Under the Sea chemo and we had crabcakes for G& M's...this chemo was Mexican Chemo.. Last year at this time Gavin was getting his transplant and would enter the most dangerous part of his treatment...how would I ever believe... a year later I would be here..
September 29, 2006
I find it so hard not to cry when the Doctors and Nurses come into poppy's room and explain the chemo and how it is used..they have no idea the pain we feel in our hearts when they talk about the chemicals that we watched pumped into Gavin's body that are now going into Poppy's body. We are so affraid any time poppy get a procedure that it will be painful and we will then know how much it hurt our precious Gavin. Isnt it enough that we had to watch the tiny child suffer why must we now have to know how painful it was.
September 24, 2006
I want time to stop...everything is going to fast...I miss my grandson every day but am worried about poppy. I believe, we, as a family, have given the ultimate sacrifice and do not understand why we must continue to give. Poppy will begin chemotherapy of Wed..September 27, 2006 for melignant primary cns lymphoma. His Doctor's say the jouney will be long and hard...they say he is strong and young and may be able to handle the toxic chemo. We have not told Kyle anything and will not until he asks or it is something we can no longer hide...Kyle was asked to do a project in school about his family and wrote that he was an only child and had no brothers or sisters. I was so sad when Christina told me this. She says he will not talk about Gavin and if she tries he says he dosent want to talk about him. Two of Christina's sisters have had babies in the last three months. One boy Devin and one girl Addison. Its funny, I believe its been four months since Gavin learned to fly because thats when we learned about poppy's cancer. I guess time did stop...Kyle is going to be a dragon slaugher for Holloween...Christina is going to make her first hand made costume...I am so proud of the woman that she has become. I know her mother is looking down from above, holding Gavin's hand and smiling.
Septerber 3, 2006
I do not remember how many days since I last touched Gavin and kissed his tiny face. I have no time to cry for him. Poppy is sick. He had a brain tumor that turned out to be cancer. It is called meingioma. Its another word that we did not want to learn but now is a part or our lives. How much more. We have not told Kyle anything. We are waiting to go to the neuro-radiologist to find out what type of treatment he will need. We know it is an aggressive tumor..like Gavin's...but it dosent respond to chemo..just radiation..
July 11, 2006
Last night I had my first dream about Gavin. I dreamed I was attending a training for work and poppy had to watch Gavin. When I came home from the training poppy was exhusted, as he usually would be after a day of "baby wrestling" and he said take him. Gavin looked at me and was happy I was home. He had the biggest smile on his face and reached his hands out for me. I took him in my arms and carried him on my hip. I remember thinking to myself how heavy he was. I woke up happy but then I cried when I realized that it was a dream.
July 4, 2006
Two years ago I sat on a blanket at my best friend's brother's house and watched the fireworks light up the sky with my two grandsons. Poppy sat on the blanket beside me..Gavin was five months old...Christina called every hour or so to check up on the boys..she wanted them to go but would worry so much about them. Gavin fell asleep but Kyle watched in wonder as only a five year old could. I still can not complete a day without crying. I try to stear away from those who do not understand my pain and talk to my beloved sissy who just listens and agrees with me no matter what I say. Christina went back to work at the bank and it was robbed..she really needs more truama..we took Kyle camping two weeks ago..it was great..we are going again in two weeks to a place that we had taken Gavin when he was just 6 months old. That will be hard but we can not keep Kyle from doing what he loves. Gavin's headstone was set last week and we will all be going to mass on Sunday and then to see the stone. I have only been back three times and each time it is hard...real hard...painfully hard....
June 15, 2006
My dear sweet baby Gavin...it has been two months and the pain still hurts every part of me...I have not been able to go a day without crying. I feel alone in my pain. I dont know how to make it go away. I want to scream but it just so hard to breath. I am so sorry. I should have been able to fix this in some way. Im your nuna and I should have been able to make you better. I have band aids with elmo on them and first aid cream. I dont know how to find comfort. Today was your mommy and dada's birthday. They were born on the same day. You should be here...I dont know why you are not here. Are you watching me...do you know how much I hurt...did you put your hand on my check last week while I was sleeping? I miss you.
May 23, 2006
Today I though about the first round of chemo that Gavin had. He was so sick and had so many tubes, wires and leads attached to him but I decided that I wanted to hold him. That he would sleep in my arms .I moved the sleep chair to the side of his bed and picked him up and put him on the chair. I then layed down beside him. I remember his nurse Dan looking at the monitor and then looking in his crib for him. He never said a word. He knew I needed to be close to my precious grandchild.
May 18, 2006
Today is one month since I touch Gavin's soft skin. I remember a few hours before Gavin was released from the ventalator he had a tear that rolled down his check. I was crying and my tear fell on his check and the two tears mixed together. I will have that memory forever. Now I cry my tears and they will never again be mixed with my loving grandson's tears. The pain continues. Some, who think they know me, make mean cruel stupid comments about how I need to get on with my life, remember the good things about Gavin, he is in a better place and endless other ludicrous comments..No one knows better than Brian, Christina, Claude and I that Gavin is in a better place. The four of us cared for Gavin when he was covered in sores, throwing up, crying to be held because he wanted comfort. In pain, that only large amounts of morphine could take away, but he could still say "hold you" and point those tiny arm towards you. For over a year this is only a small part of what we did. We never left Gavin alone. He was always with someone who loved him. Unless you have lost a grandchild do not tell me how I should handle my grief. You can not walk in my shoes and have no understanding of what I am going through. Just hold me when I cry...do not run from me....do not tell me of the "better place"...or maybe I need to talk to someone...but instead tell me a wonderful memory you have of Gavin or ask to see his picture or ask me how he celebrated his first birthday or did he like snow..or what was his first word. Tell me you are praying for me...
May 14, 2006
Today is Mother's Day. I am worried about Christina. She has been the foundation of this family for over a year and now she is lost. She is a true care giver and is having a difficult time filling in the time when Kyle is at school. Her heart is so sad. You can look into her eyes and feel only a small fraction of the pain she feels. I wish I could help her but my pain is so strong at times it cripples me. We will all spend the day together. For five years we have spent Mother's Day at Pimlico Race Track. Gavin went the first year he was alive, the second year he was alive he spent at Johns Hopkins and this year he is dead...My record still stand...I was hardly out of bed before I began to cry..I just want GAVIN....;...
May 11, 2006
Today is three weeks since I kissed my precious Gavin's face. How do I understand...Please dont tell me to get on with my life or maybe I need therapy..my life will never be the same...this Precious child can no longer look at me with his big blue eyes and tell me to hold him. Until you walk in my shoes dont tell me or assume you know what is best for me. Dont Run in fear when you see me. Let me cry on your shoulder and just listen...Dont tell me how luckey I was to have him for two years, two months and 16 days. Just listen to me. My heart is broken. I think sometimes when I go to Brian and Christina's I will see his face sitting on the couch watching his beloved "abarney". Dates are a big thing with me now...everything revolves around the number "20" and Thursdays are bad and 7:40pm is bad...Sleeping is hard...I have found myself working 10 hour days but only because I dont want to go home..I wish I was being paid for my time..Everything is hard now...doing the yard work or cleaning the house. I just cant get into it... Well maybe tomorrow I will not cry...
May 4, 2006
Today is two weeks since Gavin was in my arms...I hurt so bad and I just want to know why. Gavin never did a thing in his short life but try to be happy. We have all returned to work...this is normal but I do not fell normal..Christina is going to go back to the bank. She just has trouble filling her days. She was always so busy with Gavin and now she has such a void. Brian is back at the airport. He gets sad and will go off to himself at times. Poppy and I cry alot...We spent last week end working in the yard that was neglected for over a year..we had some weeds..Everything seems harder now..things I use to love to do are now chores...I am very lucky to have so many friends who surround and protect me. Today I hurt maybe tomorrow will be better....maybe I will not cry...
April 27, 2006
Today will be one week since Gavin took his last breath on this earth. It seems like a lifetime ago. Every minute of every day seems like an eternity. They say the funeral was beautiful and the "goosey wonder" just looked like he was sleeping. I remember little of it and the parts I do remember I do not want to remember. Brian spoke at church and made me very proud. Christina continues to be our rock...I am really suppose to be the one who has all the strength but thats not going to happen. Kyle made two Potatoe Heads for Gavin to take with him...Auntie Barbar gave him a dum dum lollipop...Poppy made a cd with all the songs I sang to him..I gave him two plastic spiders we used when we sang itsey bitsey spider together..it was the last song I sang to him..Brain and Christina gave him a broom...and Jeka cut a long strand of her hair for him. Our Lady of the Fields Church did all the hard things and all the little things to make the day special for us. We are truely blessed to know they cared about Gavin. I search for the lessons Gavin was suppose to teach me and pray I learned them.
APRIL 20, 2006 AT 7:40PM
As our Family, Friends, Doctors and Nurses gathered in Gavin's Intensive Care Room he was released from the machines that continued to maintain his life and was slowly layed in his mothers arms. Gavin took his last breath while his mother held him close and comforted him as only she could. She rubbed his head and told him how much she loved him and that everything would be fine. Brian and Kyle sat beside her and watched as this beautiful gift from God left us. Our family is in deep despire trying to understand. Please pray for our strength to see us through the days to come.
April 17, 2006
I made Gavin a new Easter hospital gown...Christina felt it was much to Girly...but its EASTER...pinks..yellows...greens. Gavin remains in a paralized state working hard to keep his lungs working...the machine is doing all the work..when his medication begins to wear off he will open his eyes..its hard to know if he sees us but I am choosing to believe he sees me and knows me and is asking me to sing...Since he is in Intensive Care the nurses do not like you to fool with him much...they like him nice and calm..Poppy helps the nurse with diaper changes...he is so gentle with his hip...making sure it stays level and supported.. Kyle and Gavin got baskets from Aunt Pammers, GG, Poppy. Uncle Justin and Aunte Chastity and the Bunny...It was like Christmas. Please keep praying for Gavin. The Doctors have no answers. They say it is up to him. Gavin is tired he has fought for over a year. Christina remains sure that he will fight this battle and he will continue to fight all his battles in the future. She is the rock that we all lean on for strength. Brian has not been able to work in a month because he has been so upset. He goes to the hospital every day and sits by Gavin's bed talking to him. It breaks my heart that my child is hurting and I can not fix it...Maybe tomorrow will be better..
April 13, 2006
Yesterday Doctors told us that Gavin had a dislocated hip. The hip that was dislocated is the one that had the yeast infection and Doctors believe it was dislocated because of the serious infection. Gavin will be in a cast from his waist to his ankles. But today Gavin began having trouble breathing again and has been placed back on the ventalator. This is very bad news and we are very sad. I am very scared of the outcome of this latest battle. Gavin is very tired...he was only breathing on his own for two days...Please pray for him and for our family as we try to understand why...Gavin
April 11, 2006
This morning at 6:40 am, Gavin took his first breath. It was the most beautiful breath of air that anyone has ever taken in the whole world. This small tiny child has fought back. He is still very weak and tired from the battle but he breaths. God is good. Gavin will teach me more. Thank you, to all who prayed, cried and held our family in your thoughts. It is with all of you that we survive.
April 9, 2006
How many holiday's must cancer take from me...Yesterday Gavin spent my birthday struggling to breath. He will spend his second Easter at Hopkins. The only holiday he was out of the hospital for last year was for Christmas. I wanted to do an Easter Egg Hunt this year but instead I am making a new Easter hospital gown for Gavin. Well, enough of that...Gavin has lots of issues but Doctors just keep addressing them one by one. One of his central lines broke last week. They had to put two lines into his arm after an unsuccessful attempt on his foot left him with a silver dollar size hematoma. They did manage to fix the central line but two days later the other line clogged. The lines are not meant to have so much medication forced but because Gavin is so sick and alot of the medication he is getting can not be mixed with others every available line must be used. Friday he began a fever of unknown origin. The fever is 104. He is being iced down until the infection can be located and the correct medication be given. Its a marathon race according to Gavin's Doctors. They say it is a slow process of ups and downs. Brian has been unable to go to work. He wants to work but is very worried about Gavin. He will stand at his crib for hours just looking at him. Poppy and I are still experts at crying.
April 4, 2006
Gavin continues to fight to breath. Every day he is on the ventalator it is harder to come off. Gavin's Doctors are very concerned and say it is up to Gavin to start breathing. This seems like a lot of responsibility to place on a two year old. Please just keep praying for us..I am affraid...I do not know how...
April 2, 2006
Gavin has Pneumocystis carinii Pneumonia. This is a Pneumonia that is very dangerous for individuals with immune system difficulties. Gavins Pneumonia is in both lungs. A machine now breaths for him so he can rest and fight his illness. Doctors will only say he is a very sick little boy but his onclogist...those that know him best...say he is a strong boy and a fighter. Chrsitina sits by his bed and talks to him in a way only a mother can. Brain has been taking the night shifts. Poppy and I do what we do best....cry....we seem to be functioning in that same fog we funtioned in over a year ago. I believe that Gavin was put on this earth and came to me..to teach me something... I believe.. that if I have learned what it is that he was teaching me then his time on earth will be over and he will go home...if I have not learned then he will remain with me....I pray that I am a slow study and I need lots of remedial work..
March 30, 2006
Gavin had his surgery yesterday...the Orthopedic Surgeon said everything went fine...they got all the infection out from around his hip but he was having problems breathing. He went to the recovery room and continued to have problems breathing...they felt he needed to go to intensive care. Gavin continued to deteriorate through out the day and night..he was placed on a ventilator at 5pm today. The machine is now breathing for him..The Doctors still are not sure why he is in such serious condition. They are doing all types of test to find an answer. Please Please just keep praying...Pray that the Doctors find the answers and that Gavin can continue to fight his battle...
March 28, 2006
The Goosey Wonder is back in the hospital..On Sunday he was sleeping all the time and would not sit up. He had thrown up nine times on Saturday and he was just not acting right. He would not play or sing. Christina took him to the Johns Hopkins Emegency Room and they began to do test. They gave him fluid and platelets. They tried six times to remove the fluid from his hip but could not get less then a cc . The fluid was very thick. The Doctors were not even sure if was enough to get a culture. The results to the culture came back and Gavin has a yeast infection in his hip...As always with Gavin...his Doctors stand around scratching heads asking how.. Gavin will have surgery tomorrow to scrap the infection off the bone. The feeding tube in his nose is causing problems and sometime in the next two weeks he will have another surgery to put a feeding tube in his stomach. Brain contiunes to go to work every day..Christina cares for the "Wonder" and worries about Kyle not getting enough of her time and I cry all the time
March 18, 2006
My beautiful Christina, how much do you have to endure in your life. How do you find the strength? Gavin is looking bad...he is swollen from all the procedures last week and he is yellow again. He is throwing up and has a fever. This may be due to the infection in his hip...or all the procedures last week. His skin on his face is raw from all the tape used to hold the tube in his throat while he was under. The hated feeding tube hangs from the side of his face and is taped on his check. He looks like a sick child. He can not walk and must hold onto chairs and tables. The Doctors want him to rest his hip but he is two years old and wants to play...I wish I could see him run..I have never seen him run or jump or skip..he has never climbed the stairs..Maybe next week will be better... Oh...Gavin had a hearing test and the result was moderate hearing loss...he will need hearing aides...he will have problems with high frequency's....... like female voices...Uncle Martin and Poppy do not seem to feel this is such a bad thing....
February 27, 2006
I know people will do the right thing when the time is right and the members of Our Lady of the Fields in Millersville, Maryland did just that. They had a dance for Gavin and raised money to help us with bills. The night was majic...when Gavin and his mother came into the room every one started to clap and cheer...I will never forget the feeling of love and prayer for my grandson..I told Christina that Gavin no longer belonged to her and that he was now a part of something much bigger...
February 10, 2006
Well, in nine days we will hit the one year mark. Its hard to believe we made it this far. Gavin has spent every major holiday at Johns Hopkins Childrens Center this last year(except for Christmas) including his birthday last Tuesday. It was sad to see him in that hospital gown on his birthday. It was hard to spend the night in that hard chair bed. I was glad we had a little party for him last Sunday. He continues to have difficulty eating and throws up everyday. He will now have his feeding bag attached 24 hours a day because he is losing his muscle tone. His legs and arms are so thin and he has difficutly walking. Someone, who has never delt with cancer, asked me when he will be cured. Seems l
