The past few weeks I have been struggling to figure out how to express something that's been eating at me.
Children shouldn't get cancer.
We shouldn't have to watch our children suffer from this awful disease. Watching Matt fight, always with a smile and a positive attitude, is the most heart wrenching, devastating experience that I could have ever imagined. Listening to his childlike faith is heartbreaking. He told me the other day that he was glad we had found his tumors. Now that the doctors were taking care of him, as long as he followed their instructions, his tumors would go away and he would be healthy again. How do you explain to a sweet nine year old boy that the tumors will likely not go away, no matter how careful he is, and no matter how good the doctors are? How do your discuss your child's own human mortality and frailty on such a personal level? I am prepared to discuss with my children the fact that everyone will die someday, but how do you talk about this fact with a child who has a life-threatening illness? I believe in miracles, and we pray for one daily. People can live for a long time with stable, low grade brain tumors. But chemotherapy and radiation are not going to completely get rid of Matts cancer. He will be monitored yearly (at least) for the rest of his life.
However, Matt is one of the lucky ones. He has a chance......
When I joined this strange pediatric brain tumor world, I learned of the grand-daddy of all pediatric brain tumors, the diffuse intrinsic pontine glioma or DIPG. Children diagnosed with this, the most deadly pediatric brain cancer, usually don't live longer than 18 months - and it's 18 months of watching your child suffer horribly and deteriorate before your eyes. This video was made by a mother, Christine, about her daughter, Alicia. Christina has started a foundation, you can check our her blog here, and her foundation, onemoreday, here. This video is very difficult to watch, but I believe it is important because awareness is the first step towards a cure.
There is a darling little girl that some of you here in Utah may have heard about on KSL. Her name is Sadie and she has a DIPG. The story on the news piqued my interest, as my ears perk up at the words 'brain tumor'. I went to her website and just crumbled when I heard what her diagnoses is. My heart aches for this family and for the year ahead of them. Of course everyone knows that brain tumors are awful. However, I had no idea exactly how awful they could be. Finding a cure for DIPG could likely translate into cures for many other types of brain cancers. Please help in any way you can. Prayers are wonderful. Donations are also wonderful - much research has yet to be done on pediatric brain tumors! If you are looking for a worthy cause, it's hard to imagine one more profound than this.
-Allison
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11 comments:
What a touching video. We can't donate much, but I'm sure we can come up with something.
(((HUGS))) I am so sorry Allison. Cancer/brain tumors are just horrible. No child should have to go through this. I think children fight harder because they really don't understand fully of what this is all about. Sometimes that is a very good thing. If you need anything... let me know! Even if it is to vent or cry.
Hang in there! I keep you in my thoughts and prayers.
Beautiful post with so many difficult and heart-breaking questions. Thank you for sharing (and for the links), Allison.
Oh, Allison--how heartbreaking! I guess I needed a good cry today. I'm glad Will is doing so well. Thinking about you. Dina
Watching that video brings feelings of deep despair to my soul. Cancer is an awful word, and an even worse disease. Even though I lost my Mother to cancer, I will agree that kids should not get cancer. It was hard watching my Mother suffer... I can only imagine the pain that a Mother feels watching her child suffer. Thank you for Sharing Allison
toodles, Sheila
Katie,
I wasn't asking for donations in my post. Please don't feel pressure to give money. I was mostly just expressing my feelings of personal frusteration, and trying to raise awareness of this awful disease.....
-Alli
thank-you allison. thank-you for sharing your feelings and thank-you for the links.
please know that we pray for you too. i know there are angels with our children.
love, courtney
Oh Alli, I am sobbing. We have kept Matt in our prayers and will continue to do so. No one, especially children, should have to fight such an awful thing. Thank you for sharing. Hopefully it can inspire all to find a way to help. Hang in there. I love you dearly.
Dee
Alli,
you are all in our prayers, you guys are great parents and with the help of the Lord you will know the things to say to Matt.
Love you guys
Denise
Thank you for sharing your experiences and those of others. A friend recently told me that if each person tries to make a difference then that adds up and that is when things get done.
That video was the most heartbreaking thing that I have ever seen. It makes me want to hug my kids and never let them go! Thank you for helping others understand how difficult it is to deal with such a difficult fight!
Rachael
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