Sunday, March 16, 2014
I am so bad at updating. Korbyn has been fighting some upper respiratory issues for a over a month now, he has been fighting RSV, and pneumonia. He has the lingering cough, and ear infection and sinus infection from the initial RSV. Because of this we were unable to do his spinal chemo last month, and he is a month behind on that. We are hopeful we will be able to to the spinal treatments this Tuesday, but with the continual and persistant cough, it may still be too dangerous to sedate him for the procedure. His blood counts are not fluctuating, but continue to be low, we may be put on a chemo hold if his counts haven't gone up any by Tuesday. They want to try to keep counts between 1000 and 1500 his are slowly going down each time.
We were able to visit our neighbor who lives accross the street, fireman Dave at his fire station, take a tour, and ride the fire engine. The children absolutely loved it, they even recieved a "call to respond" over the speaker system.
We have been keeping a low profile because of RSV, and cold and flu season, in an effort to keep korbyn as healthy as possible.
He is doing awesome in his mommy and me preschool. I teach him at home, and actually have a great time doing it.
Sunday, January 5, 2014
Today is a day of great celebration. And I again am brought to tears, the love of family and friends who gathered with us to celebrate this day is awe inspired, and for me and korbyn much needed.
And now I start crying, when korbyn started having trouble walking in march, if we had taken the drs advice when nothing showed up in x rays, and waited a week to see if it got better, if we had waited instead of getting numerous opinions, finally landing us with an orthopedic specialist, we may not have gotten this day.
When he was diagnosed with leukemia we were within days of his life. Thank God I refused to chalk it up to growing pains, and we get this glorious day to celebrate.
They say a mothers instinct is strong, I can testify to that. I knew something was wrong with my baby boy, and I was gonna push until someone figured it out.
I was told anything from growing pains, to maybe he is refusing to walk for attention. Yes that orthopedic specialist broke my heart in one phone call, but I thank god for him. He saved my baby boy. And this day, little man's 4th birthday means so much more to me than words can explain.
But alas after birthday cake is eaten, reality sets in with the medicine case. Cancer doesn't take a break for a birthday, and daily chemo still needs to be given, and after that much sugar, probably tummy medicine as well.
Here's to many more birthdays little man, I love you to the moon and back.
Thursday, January 2, 2014
Though my heart is full of the sincerest gratitude this day, for family, friends, strangers who opened up their hearts to make sure my children had Christmas this year, I can't help but crying.
When others are around, I won't show my fears, I rarely cry in front of anyone, with the exception of gratitude tears.
But these past 9 months, my pillow has seen more tears then ever in my life. My heart has felt more fear, and my mind more turning.
I have attempted stay the strong one, because I have no other choice. I can not cry in front of my kids, I can not show fear, as I do not want them to be afraid. When you ask if I am okay, I will always tell you yes, I am fine, as I know you may not be able to make me okay.
As we draw closer to Korbyns 4th birthday, the emotions of all he has been through in his 3rd year are closer to the surface than I tend to let show. Knowing day one march 26th my little one was oh so close to deaths door, and we started to fight along side him for life. I can't help the tears. I scroll through pictures, and the tears flow freely from my eyes. This year it is my resolution to bring more awareness to childhood cancer. It's not just the cute little bald heads, its the pinning your child down to give them medicine they need to live, I pin my child's arms back and force poison down his throat because I want to see him graduate high school. I want to see him learn to ride a bike, I want to see him blow out birthday candles. I want him in my life, I need him in my life.
My faith in God has been shaky at best, but seeing the power of prayer each day in my child's eyes has restored a part of the faith I thought I would never get back. I don't hold bitter feelings towards the healthy kids in peoples lives, I praise god for them. I thank god for the blessings that I see now more apparent than ever before. I pray for the day that cancer is just a zodiac sign.
Thursday, December 5, 2013
I used to think I had life figured out, I knew what I wanted, and I was working towards that. It's funny 8 and a half months into this leukemia fight, being the right hand man for my wonderful son, has changed me. I get really frustrated seeing others and their reaction to my mask wearing, bald headed super hero, and I get concerned seeing their reactions as well. I want to sit with all of them, and clue them in, on the realities of life, I have come to know.
Don't "feel bad" for my son, instead look at his courage, and his strength, as he stares cancer in the face, and says, "not this time". For his strength is what keeps me going.
I used to strive to give my children all of the perks of life, nice clothes, new toys. Those perks have been a distant memory as it becomes a fight to sometimes put food on the table. I am a very proud woman, and it takes a lot out of me to willingly accept the helping hands of others. I get upset when others don't allow me to help them, yet sometimes myself won't admit I need the kindness, and generosity of friends, family, and strangers.
As we embark on this holiday season, knowing there is no room in our very tight budget, I thank those of you, for adopting my children in your hearts, and thinking of them. As a mother this is one of the most painful things putting pride to the side, and admitting, if it wasn't for the kindness in the hearts of others, we wouldn't even have a tree this year.
I am in no way asking for a handout, I am simply saying thank you. And as you go about your holiday plans, with the hustle and bustle, be safe, and know in your hearts, there is someone out there, who may not say it personally, but is indeed very grateful that you were there, when it seemed no one was, and that is truly what this time of year is about.
May God bless and keep you.
Friday, November 8, 2013
So tonight we went to the grizzlies game, with the leukemia and lymphoma society. Awesome story, when we got there, and were finding our seats, a really nice lady, who works for the administration office, offered us upgraded front row, right behind the glass to the left of goal seats. So so sweet of her. The kids got bear claws, and hockey pucks. And really (maybe too much) enjoyed the face smashing glass action.
Wednesday, November 6, 2013
Wow I am really bad at updating, korbyn is 3 weeks away from final maintenance, which will be only every 4 weeks iv chemo, and prescription chemo at home. This little guy shows me daily what bravery is. I have seen him look cancer in the eye, and stand his ground.
Right now the only real concern is the " manorexia" he is getting so skinny. I don't think the Dr appreciates my sense of humor, when she said he has chemo induced anorexia, I joked that with the barfing, I think its more a bulimia thing. She didn't find it funny.
I never knew that a small child could show me so much about life. But korbyn shows me all the time what's important in life.
I don't know why this trial was chosen for us, but I do know we will not back down. We will fight to the finish line. Finish line is 3 years 3 weeks away. Korbyn should be done with treatment just shy of his 7 th birthday. I'm thinking January of 2017 to celebrate, maybe a nice cruise or something.