Are you, a family member, a loved one, or someone you care about coping with cancer. Discuss it here.
Thanks in advance for sharing your thoughts so that everyone reading this blog can benefit from mutual support.
Are you, a family member, a loved one, or someone you care about coping with cancer. Discuss it here.
Thanks in advance for sharing your thoughts so that everyone reading this blog can benefit from mutual support.
April 15, 2008 at 2:18 am |
My son is undergoing something I would not even wish on my worst enemy- he has been diagnosed with a type of cancer called Neuroblastoma. It is “rare” compared to other types of cancer, such as leukemia or lung cancer, but is still diagnosed in at least 600 kids every year. Most are under 2 years old and are generally males.
Here is his story-
June of 2007 my son had started daycare and it was the last day of his first week. I picked him up and noticed he was burning up to the touch. I took him home as quickly as possible and gave him some tylenol and put him in a lukewarm bath, trying to break the fever. I took his temperature (on a thermometer I didn’t know was defective to that point) and it was still only 99 degrees. My husband put his hand on our son’s forehead and said “There’s NO way he’s under 100 degrees”. Next thing I knew my son fell asleep and I opened a window and put a fan on him on the low setting, hoping to break it. I understand now that my first mistake was not calling 911 right away.
My husband took a nap and my son woke up from his. He was cooler than when he laid down, but still pretty warm. He sat on the couch and was really listless. I called a friend and within five minutes my son started having a seizure. I hung up the phone, called 911 and woke up my husband.
By the time the paramedics showed up his seizure had passed and he finally started feeling cooler. The paramedics took his temp and he was at 100 degrees. My heart almost stopped, not being able to quite comprehend what his temperature had been at earlier…it could have been as high as 101, 102. Just before I jumped into the ambulance I made sure to throw away the thermometer that betrayed us.
Eight hours later, still in the ER, the x-ray technician was looking at an x-ray of my son’s chest and I had left momentarily for my third cup of coffee. I came back only to see a cloudy figure on the x-ray that should never have been there. Next thing I know I’m being told that they were on the phone with DeVos Children’s Hospital to see if we needed an appointment or if we were going down that night.
3am rolled around and I was again in an ambulance with my son, dazed and confused while riding down to Devos Children’s Hospital. We arrived and the week was filled with x-rays, blood, sweat, and tears. I can honestly say it was the longest week of my life. Middle of that week they decided to remove this tumor that had been growing in my son for possibly as long as he was in the womb, which still scares me to this day. The doctors have all told me this particular type of cancer is not genetic, but for a first time mom really already debating on whether or not to have more kids….the answer keeps coming more and more clear…for the time being.
The doctors and surgeons told me that the surgery should be enough and this particular type of cancer has a characteristic of “maturing”, meaning cells can go from being “cancer cells” to “normal cells”, but the mass could still just sit there, for the rest of your life and not effect you.
Then started the road trips every two months with clear results…the cancer was not coming back. Then….we let the breath we had been holding for seven months out….
April 15, 2008 at 2:34 am |
January 2008-
We found out it was back and was in fact growing right where they had removed it before. I has not spread, but what was the size of a jelly bean in January is now the size of a walnut in March.
The doctor has come up with a plan of two cycles of chemotherapy, surgery to remove what they can, and then two more cycles of chemotherapy. My son now has what they call a “port” in his chest, which is really scary for me to touch. It isn’t hurting him and is actually kind of a neat thing for him to have at this time. The doctors can pull blood, infuse the chemo and fluids into his body and there’s no extra pokes at trying to find his “peek-a-boo” veins.
He had his first cycle of chemo a week ago and has gotten sick only twice. The dream is for it not to happen at all, but with chemo that’s really a pipe dream. Each kid reacts differently and so far, so good. However, he now has to kind of watch how much cheese and milk he has because too much makes him sick, which never used to before.
The three ideas that scare me are: 1) He has this thing in his chest that really kind of frightens me, but I understand why it’s there and why he needs it (If they administer chemo through an IV it can burn his muscles and burn his skin…badly- the port enables the chemo to go right through his blood stream) 2) I have to make sure he has the right medications when he needs it (there are five scripts right now) and just in case he needs it. 3) I’m a “fix-it” person and a “I’ll kiss it and make it better” person….I can’t do that here- I can’t see what’s hurting my son and I can’t put a bandaid over the owie.
However, I have completely dedicated myself to making this as bearable as possible for myself, my husband, and most importantly, to my son. Lots of hugs and kisses, rewards for taking medicine like a good boy, still disciplining when he needs it. A thought that I keep trying to tell myself- “He’s two and he will not remember this”. I will remember it for the rest of my life and will have all the papers, bills, pictures, etc. to help remind me and to confirm it later when I do get the chance to sit down and explain it to my son.
I keep taking life one step at a time, not forgetting to take time for myself to clear my head for even just fifteen minutes between blood draws, medicines, check ups, chemo treatments, work, being a wife and mother, and praying that after this is finished we have clear sailing. I’ve always been told God will never give you something you are not strong enough to handle, and as I look up at the moon and the stars tonight, I really, really hope it’s true. I want nothing more than to be the rock my son can always lean on, the shoulder he can always cry on, and the comfort he can always rely on.
April 15, 2008 at 12:01 pm |
Thank you for sharing your experience, ConcernedMom.
Hopefully our readers will share their experience, advice or offer a helpful website (or several) to offer more encouragement through this difficult time.
I’ll add to this link list as I find more resources:
http://www.makingcontact.org