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One of the first things you are told when your child is diagnosed with leukemia is that the cure rate is high and that treatment is very successful today. It is meant to reassure terrified parents and I wish I could say that it was a comfort to me at the beginning but as we left the children's cancer ward the day Alecia was released from the Primary Children's Hospital, just five days after her diagnosis, I felt as lost and afraid as if someone had dropped me naked into the middle of a jungle and told me survive with nothing but a stick.
In the hospital there are the daily visits from doctors, nurses, child health specialists, and social workers. Their sole intent? To teach you what leukemia is and to help you get past the initial fear that has inevitably taken a firm hold of you. There are two types of Leukemia. Alecia has ALL and as that goes, Acute Lymphoblastic Leukemia (ALL) has the highest cure rate...so if you're going to get leukemia, that's the one to get...hardly comforting in the overall scheme of things.
Parents get a crash course in blood counts (which you soon realize is the most important thing you should be learning and understanding), how important good hygiene is, how bad it is if your child has a fever (absolutley NO Tylenol or anything that might mask an infection...got a fever? Straight to the E.R.), and how closely you have to screen visitors because a cold virus could be deadly. And that's just the start. No playing in the dirt, might breathe in molds or spores that could make your child deathly ill. No band-aids on her skin for more than 24 hours, might cause an infection. No trampoline, could dislodge the port-a-cath implanted in her chest. Always have her mask handy and avoid anywhere there are groups of people (grocery shopping becomes difficult and daycare isn't an option.) Then there's eventual hair loss, nausea and loss of appetite from the chemo, incredible weight gain from the steroids...all to come in time. Is it any wonder that the day we left the hospital I felt such terror? How do you remember all of that?
Not that I was not thankful for all of the precious information but already being in a fog from the initial diagnosis, it was impossible to retain it all at that point. (Unfortunately, we would have time to realize the importance of these things and the impact they would have from personal experience over the next few months.)
Everything in Alecia's life was all of a sudden based on the blood counts (White blood, red blood, blast cells and others) within her body...on blood that at first, couldn't even sustain her. She survived only through blood transfusions at first...which is where I always stop to say a heartfelt thank you to those that donate blood...without it, my little girl wouldn't be here today.
As all of this information starts to sink in, you start to look for resources to help you get a handle on everything. Hospital social workers, friends, and family can all be great places to find information. Here are a couple that have been some of the best help to me:
Childhood Leukemia, A Guide for Families, Friends & Caregivers (3rd ed) by Nancy Keene.
This has been my go-to book because it covers everything... handling the initial daignosis, clinical trials, emotional issues for the entire family, side effects of chemo, and much more.
http://www.caringbridge.org/
This has been the greatest resource for me. Caringbridge offers free personalized websites intended to connect friends and family while you or a loved one go through a life threatening illness. I post pictures of Alecia as she progresses with treatment and update her journal almost daily. There is a guestbook for friends and family to say hi when they stop by. It is an amazing way to share your story and for me it has been a great emotional release.
They say that knowledge is power and while it certainly doesn't alleviate the helplessness of not being able to take away the hurt of cancer for your child, it at least makes you feel like you have the ability to make informed decisions and to understand what is happening. This is an important first step after the initial diagnosis and it's good to reach this point early because as you soon find out, the emotional trials that have just begun will drain you and break your heart a hundred times over. Very early I adopted the mindset of-step by step, a day at a time-and for those days when it's particularly hard, it's perhaps a breath at a time but you have to try to keep the focus on moving forward.
