My daughter was 2½ when she was diagnosed with ALL and has about 1½ years of treatment. The most important thing that I would tell parents starting out is: Accept help from others, realize that you cannot do it alone.
Our son was diagnosed with ALL at age 2½. He is 4 now and we have about 8 months left in treatment (Amen!!). There are so many things I would tell others just starting out:
I'll begin with faith and trust in God, because without that, you have nothing. You will find great inner strength once you place your trust in God.
Stay positive and don't sweat the small stuff. Try to find the upside of this whole situation (and there really is an upside, you'll see) and dwell on that. You will find your spirit (and mood) lifted by viewing the glass half full instead of half empty. Negative thoughts and negative people serve no purpose, they simply have a snowball effect on you, and before you know it, your whole world is falling apart. This is the biggest hurdle, I found.
Also, accept the new "normal" in your life. It is hard to let go of what used to be, but you must. Treat your life and your children as "normally" as possible. This too is difficult, but you will find your stride eventually.
Right now for me, taking everything day-to-day is just too much. I'm still going on minute-by-minute or maybe second-by-second. All I really know is that I must continue to breathe no matter how short of breath I am. Sometimes I have to remind myself to breathe. For today though, I will take several deep breaths as often as needed and be grateful that Tyler is with us and cherish everything about him.
Keeping a positive attitude is helpful even on cloudy days. Never question your faith, we all have crosses to bear and God will not give us more than we can bear (even if we think we have enough).
- I kept a journal immediately after dx and a video journal; when Lorenzo looks at it now, (6 years later) he understands what he went thru (he was only 14 months at dx, so he didn't understand then).
- Keep yourself healthy (as Gary suggests): getting enough sleep and nourishment and time to yourself is necessary, I used to rely on the great volunteers while I went for a walk and soon I learned not to feel guilty for it.
- Bring favourite cd's or books, start a scrapbook of your own.
- Don't be afraid to use all those well wishing friends and relatives when they offer help (do laundry, cook a meal for your other children/spouse, take your other kids out etc.)
- You are not alone, ask questions, converse with other parents in the hospital, visit the chapel at any hour....or just lay down with your little one and watch them sleep.
- Draw strength from them and give them strength...BELIEVE IN MIRACLES!!
That my heart goes out to youdon't be ashamed to cry! Nine years later and my son is still cancer free, yet I still cry almost everyday. I try not to dwell, but I wasted a lot of time and years wondering if "it" will come back. Hug your child often and say "I love you" even more. Smile for the time you have been given.
My daughter was dx at 2½ with NHL in Feb. of '97. I know
what you must be going thru right now: the turmoil, the worry, the
uncertianty of it all...
Hopefully, I can offer some advice that will help you through this.
- Keep yourself healthy.
You will do your child no good if you get sick or run down. I know it's easier said than done, but
try to eat right, take a vitamin if you have to, and try to get enough rest. This kind of stress makes you go on auto-pilot and doesn't really hit you until there is a lull in the action. You're operating on
adrenalin, and your body can only take so much.
TAKE CARE OF YOURSELF
TELL YOUR MATE TO DO THE SAME
- When you have time, try to visit the all pages at
SquirrelTales. There is so much excellent information thereI wish I
had found it earlier in my daughter's treatment. It is the best site, as a
parent too, that I have ever found dealing with this.
- Keep it positive. Negative stuff is a waste of your
time and energy right now. You found the cancer and that is a plus. At
least you know what you are dealing with.
- "Normal" as you knew it before is non-existant. Life
will never be quite the same again. I had a tuff time figuring this one
out, but as I look back now, it has made sense.
About 1-4 mos after my daughter was diagnosed, I was at a loss; I felt so empty, I was grieving
for a loss yet, I didn't know what that loss was. She didn't die; she was still her same loveable self. I couldn't put my finger on it
until about a year into treatment: I had been grieving for the loss of her "normal" childhood. My expectations of what was normal were blown to hell. I'm a little slow sometimes, but I finally recognized that I grieved for my expectations of what her childhood should be. To her, she just accepted the issue at hand and what had to be done. I think that
somehow, she knew, that this is what she had to do to try to survive.
She had (and still does have !) that inate, childhood desire to keep things
simple. I have always admired that. Let go of your old normal ... it's gone. It may take time, but you will find your "new normal."
- You are not alone.
My Heart and Desire are with you.
Please enjoy Gary's other works: