Sunday, November 23, 2008

Parents - Some Stories

I vividly remember last Thanksgiving day. Early in the afternoon the doctors gave Tyler the "okay" to leave J-5. His first trip off the cancer floor since his diagnosis! We were allowed 3 hours outside the hospital! It seemed like an eternity. And then, as the 3 hours were over, I still remember the horrible feeling in the pit of my stomach. The time had run out, and we carried him back to the hospital.

And now we have another Thanksgiving -- this one all together with a healthy family. What a wonderful blessing! But there are lessons I learned during those exhausting months, lessons I do not want to forget. I never want to forget the value of time together, of a meal together. I have seen brave young kids fight so hard to celebrate another day. Some are saved, while others are not. I do not know why that is. All I know is that I can never take a single day for granted. Hug your children. Kiss your spouse. Love more. Spend more time together. And laugh more. Live a life worth living. And fight for a cause worth fighting (You can go it PAC2 to learn about fighting the cause).

And, if you ever question the value of spending just a few hours with your child, contact any of these parents. They will tell you the value. They will tell you what they would give for just one more day together.

For the last two years my right shoulder has really ached. I called it my torn rotor cuff. It came from throwing untold thousands of footballs to my 14 year old son, Alex John, or as we called him, AJ. Trying to lead him just right on deep post patterns, trying hard to keep up with his speed. And, after the last one every time, you see, he would only let it end after he made a great catch, from catching the big lug and hugging him as he came running and jumped into my arms, yelling "the Bills win the Super Bowl, the Bills win the Super Bowl!". Just us dreaming. It came from me trying to pitch to him as fast as I could so he wouldn't hit me, but he always did. It honestly hurt enough so that I only slept on my left side and if I rolled over on it, it would wake me up in the night. But I didn't care, how could I stop doing those things? I loved it. My new problem is that over the past month or so, my shoulder has slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer. --AJ's dad.

14 year old A.J. lost his battle with Burkitt's Lymphoma in January of this year.


I went to the cemetery a couple days ago. I put out some things. I am sure you were there. I laid beside you, closed my eyes and thought of you. I laid there feeling the sun and wind on my face. All my senses were heightened. I could almost feel my arms around you. Your face so clear. Thank you. Hopefully soon I will get you a beautiful headstone. Damn.... I should be buying you a game or a car, not a headstone. --Brett's mom.

17 year old Brett lost his battle with Burkitt's Lymphoma in March of this year.


We are so tired - emotionally , physically and mentally. Clint and I have cried together and Chase just smiles. He is so at peace with all of this. He says he is just ready. He has told us plans, what he wants...I finally just had to say, "Please can't we talk about this later?" Chase expressed his desire to be baptized today. He said "I don't want to take any chances of where I am going." So our preacher turned around and came back. We were able to go to a different room that had a bathtub and he was baptized. We got all snuggled back into the bed and he said "Wow. You really do feel different, and it feels good!"

Chase passed away this morning at 3:50. He woke up at 8:40 PM and talked and told everyone he loved them. He was pain free but did get a little winded about the last hour. But I sang to him and he finally just drifted off. Towards the end, Clint even started singing with me. We both held him and just sang to him. --Chase's mom and dad.

10 year old Chase lost his battle with Burkitt's Lymphoma in March of this year

This morning I woke up to snow all over the place, and I cried. Brendan loved the snow. He would get up and say OH YEAH NO SCHOOL TODAY!!! And then be on the cell phone calling all of his friends to come and have a snow ball fight. Then he would say, "I can't wait till it snows more so I could go snowboarding!"
I will never ever hear those words from him again. I tried my hardest not to cry today, but then I got to thinking about things he and I use to do. He would say, "Hey mom, do you want to watch a movie together?", and I would get out the popcorn and we would just sit and watch the movie. I use to hang out with his friends and laugh and joke with them. But now that is all gone. How the hell am I suppose to do this ???????????? --Brendan's mom.

17 year old Brendan lost his battle with Burkitt's Lymphoma last month.


As soon as I say her pain meds are working they seem to stop....guess I need to stop saying that. Yesterday (Thanksgiving) was pretty good but it had been a bad night before. So Kels slept most of the day, waking in the evening to try to talk to us a bit. She ate a few bites of berry pie, asking if it was turkey day. She was trying so hard to wake up but the pain meds make her so sleepy. The nurse explained that is how she will need to be to not be in pain. It is very difficult because of course we don't want to see her in pain, but we so want every minute possible with her too. It doesn't sound very likely she will be able to come home again at this point. They cannot find a hospice that wants to work with her level of pain. --Kelsie's Aunt Kathi

Last year, one day after Thanksgiving, Kelsie lost her battle with Burkitt's Lymphoma.


Christian heroically endured 20 months of aggressive treatment, tons of extremely strong chemo, 2 Bone Marrow Transplants, 3 relapses, 16+ months of hospital inpatient time, hemorrhaging for 4 months, 1-1/2 years of separation from our family, extreme pain and suffering, etc. He is forever our hero and his legacy is one of a pure heart, good clean humor, humility, unconditional faithfulness in God, bravery, courage, and determination. He always showed respect to his doctors and nurses too.
It is so difficult to see someone you love more than life battle for his life! I am again in awe of his courage and faithfulness. We are so proud of the many wonderful character traits he lived out each day. No one will ever inspire me more than my heroic child has. It is a great honor for me to be Christian's mom. He is an inspiration to us and many others as well.

Our hearts yearn for him and we know they will until we are united with him in Heaven. For now, we will look for him in our lives and honor him as we fight to eradicate childhood cancer. We pray for God to comfort our hearts and continue to USE us to fight for these heroic cancer kids! They deserve a cure and a chance at life!! --Christian's mom.

14 year old Christian passed away last December.


As the balloons gently rose up to heaven one gently hovered over the crowd. It was as if it wanted us to know, 'I'm here,but I must go'. After a few moments the balloon rose to join the rest that seemed to have gathered together and pause to wait for the one to catch up. As it rose and joined the other balloons all eyes were looking up to heaven, and there was a sense of wonder in their eyes, as they knew that Ty's spirit was rising up to his heavenly father. May the Peace of our Lord bring you strength and comfort in knowing one day we will all be reunited. --Witnessed at Tyler's funeral.

7 year old Tyler lost his battle with cancer last month
Today should have been the day, I thought at 7am he was dying and it was an exhausting, emotional, day that was so tough that I can't revisit it right now. He is still barely hanging on to life, I don't know how, he's only taking about 10 breaths a minute, God I'm going to miss my son. --Michael's mom.

Michael lost his battle with cancer last month.

It is time for you to rest your weary brain. No more research, no more phone calls to doctors all over the country and around the world, no more Internet at 3am, no more searches for experimental trials, no more looking at third world countries that "swear they have the secret to curing leukemia", no more studying of pharmacology and biology and researching doctors backgrounds and where they studied..... it's time to rest your weary brain and let your heart take over. LET YOUR HEART TAKE OVER!! Lil b is tired, and you are tired. I am here with you and we will cross the finish line TOGETHER with the rest of the decisions made FROM YOUR HEART. I love you more than you will ever know. --Barry's Aunt Kim, in a letter to Barry's father.

18 year old Barry lost his 2 year battle with Leukemia last month.

Brendon has had a bad night. He started having seizures about 8pm last night and for 2 hours last we still did not know what to do. The Hospice nurse came and helped us give him meds for it. He has calmed down but the seizures are constant. He does not stop shaking. He is unable to communicate with us at all except for squeezing our fingers and blinking sometimes. Oh Lord have mercy on this boy and manifest his healing. --Brendan's mom.

Brendan lost his battle with cancer last month.

I am mad. I am frustrated. What can be done? We have to fight! I just want to get on a plane and start flying around to meet these parents, these kids, Congressmen and women, researchers, and such. NO family should have to watch their child die. NO family should have to watch this cancer take parts of these children away little by little such as their ability to walk and talk. --Gunner's mom.

Gunner lost his battle with cancer last month.
Death doesn't come immediately. There is the period following the resignation to the inevitable, the time when all efforts at hope disappear, and the confrontation with death becomes unavoidable. Until then, hope - even minuscule strands - continue, struggling to gain strength, even in the face of the obvious. --Mile's mom.

18 year old Miles lost his two year battle with cancer.

Once again here I am. A place to vent, a place to breath, a place to make it through the day. I would like everyone to know that I can hardly type this but everyone must know that it has been all of you to help us get through this day by day...They say he will not make it through the next few hours. --Cole's dad.

3 year old Cole lost his battle with cancer in September of this year.

Our Lord showed us his mercy when he brought our sweet Pooh Bear home tonight at 9:45 pm. She is now singing and dancing with the angels as she so loved to do with us. She will forever be in our heart and on our mind. "A Butterfly lights beside us like a sunbeam. And for brief moment its glory and beauty belong to our world. But then it flies again and though we wish it could of stayed, we felt so lucky to have seen it." Tonight I am thankful that my little princess is no longer in pain and is able to laugh, play, dance and sing like she was meant to.

Ella passed away this week-end.

It is killing me to see him scared ... Finally after 2 weeks, he is showing signs of struggle ... his breathing is different , his heart rate too, he is only taking 8 to 12 breaths a minute (try to count your breaths and only take even 12 breaths!!) . On Saturday morning , he had another episode of "fish out of water" breathing, but this time he cant beat it... With my hand on his bare chest, I tell him its ok, he can stop fighting now... His heart is slowing down, I feel his last heartbeats under my fingers...He is gone. --Julian's mom.

Julian lost his battle with cancer in January of this year.

July 30, 2008 is the worst day of my life. It's the day Bentley has diagnosed with cancer, after feeling headaches, dizziness and numbness on his left fingers. He had a MRI... and found out it's abnormal.... My brain just went blank, and my husband was sitting there frozen... I kept asking questions to the doctors on what, when, how,... & why!? My brain just keep turning & keep thinking about something to ask... Non-operable?.. no cure?... chemo just prolongs the life? Cannot do biopsy? He's not gonna walk? Not gonna swallow?.... What kind of disease is that? The question 'why' stayed in my head for a very long time... & tears got stuck in my eyes, I didn't cry. I think my whole body just doesn't know how to response! After about a day, I finally realised this shocking news is REAL...

This past week-end, only 4 months after diagnosis, Bentley lost his battle with cancer.
The final conversation at Children's was that Isaac will get antibiotics and platelets from hospice. I asked my Doctor 3 times, "Are you sure he will get this?" She said, "Yes". But Hospice said that was not agreed upon. I understand antibiotics and platelets are not going to save Isaac's life, but they are COMFORT NEEDS. But Hospice disagreed, and didn't seem to be bothered by the fact that he could die from bleeding. COMPLETELY INHUMANE! They disagreed, and felt it was completely humane. What the h*** is humane about that! A little respect for the bravest child you have ever seen would be nice. For the Lord's sake, after all Isaac's been through, to deny him these levels of comfort is just wrong.

Isaac lost his battle to cancer about a week after getting home.


polly@angel_wings prayer warriors said...

childhood cancer must be stopped
we must get the word out
fight to win, my friends

my prayers each day include a time devoted to irradication of cancer from the lives of our children and youth.

tammy@angel_wings prayer warriors said...

I am in this fight along with you. Childhood cancer awareness must be raised and a cure must be found!

Keeping you close in my heart and prayers.

Anonymous said...

Kyle....just happened to stop in and see what you're writing...and who do I see....Kelsie! Thank you for honoring her with a place on your site, it made me cry...we miss her so. I am so happy for you that Tyler continues to do well. Hope you all have a wonderful Holiday.
Kathi Clarke