Fight For Kaldyn
On May 18 of this year we found out our son had a mass of fluid as well as a brain tumor. We were immediately flown to a neuro surgeon in Fargo where he was given a shunt right away to relieve pressure.( We didn't know bringing him in for the shunt that we wouldn't hear our son speak again for two weeks. That he would have a breathing tube in for days. That our son would be in ICU round the clock nurses. ) We were told he needed a 4-6 hour surgery to remove the tumor. It took that plus a bit more. After surgery our doctor told us the different textures to his tumor. We soon found out was due to it being a rare type of brain cancer. They rate brain cancers 1-4, four being the worst. We were told our son was a 3. We then were introduced to chemotherapy and radiation doctors. They told us our five year old boy would need to have 6-7 weeks of treatment. That the risks were possible deafness, blindness, IQ impairment, loss of motor skills, hair loss, infertile, even death. We watched our son daily being sick, not able to speak, sad, mad, unable to walk or even hold a cup without help. We were released from the hospital just 10 days after learning of his tumor. We were told to go home and let him try and heal. Look into our other options, facilities, and doctors. Our son had fevers daily, still threw up daily, couldn't speak, couldn't get around without help, could hardly even feed himself. In many ways was like having a large infant.
With time he has progressed. He can talk again! Doesn't sound the same and even sounds a bit monotone at times. He can walk on his own, but gets tired easily and is still very unbalanced. Even now he still throws up, has fevers, won't eat, will cry because his head is swollen and hurts. He can still get over stimulated, have spurts of frustration and anger. Doctors say it could take a year or more before he is back to "normal". After much debate we drove to Memphis Tennessee to St. Judes children's hospital for Kaldyns 1 month follow up MRI. To see if anything was showing up yet and see if doctors there believed he needed treatment now or if he could wait. We wanted to wait until Kaldyn could be older and able to handle the treatment better. We were blessed. MRI still said he looked good and our doctor said we could wait on treatment and monitor it closely. Every few months we need to go back for a MRI to make sure it isn't coming back.
As of right now we need to drive to Fargo again this week, swelling in the incision area is pretty severe and causing him a lot off pain and discomfort. We aren't sure at this time if his doctor is going to just put a shunt in or if he is going to need more surgery.
We want to thank everybody for all your well wishes, gifts, prayers and support.
As of now MRI results look good, but he will have this for life. We will be traveling for Kaldyns care and follow ups for many years. With this rare brain cancer past results have it coming back in 1-3 years. In many cases adulthood isn't always achieved. We don't know what we have ahead of us. We just know to try and take it day by day and be thankful for what we have.
We are on the road trying to get home
Please pray for Kaldyn and our family.
My son died at 22 months old . I wish I could change what you are going through , but I cant just remember GOD is with you all the time, and even that wont take the pain away. My prayers are with you to make it through this. I am at a loss for words. God Bless All Of You.
My prayers to your family as you navigate through this journey. I am a childhood cancer Mom. I am on the advisory council for an organization called Spare Key. https://www.sparekey.org/ They could help you with a mortgage or rent payment during this difficult time. Sending strength and prayers!
Kaldyn, Earth Angel