TRANSITIONS

This blog has transitioned to the following location:

http://parentsdealingwithcancer.com/

WE HOPE TO SEE YOU THERE!

Living Again

One of the hardest things for parents dealing with cancer is learning how to live again. When a family member or our children are in treatment, our lives revolve around said treatment. Routines are disrupted and we lose focus on how things were.

Once treatment is complete, it is important to step back into the world and have confidence and faith. I know a ballerina that had cancer. She is a top notch student and to look at her you would never know she had nearly died.

The moment treatment was over this young woman stepped right back into life as she had known it previous to treatment. She doesn't mention the cancer if you talk to her in casual conversation. To those around her though, that know her battle, she is a true inspiration.

What will you be to other patients undergoing treatment? Will you be true inspiration? or will you be a doom sayer?

Making yourself available

Making yourself available to a friend during cancer treatment is a priceless gift. This is a time of great turmoil for the family. Often the family is so stressed that they cannot cope with life's day to day tasks.

Just being available to take them to and from appointments, bring over a meal or even just visit is a treasured gift. Functioning on a day to day level is a great challenge some days. The stress and worry about the patient can really wear on the family and having a friend there to lean on is a important during this time.

Giving of oneself to a friend or family in need is the greatest gift of all.

Ways to Help a Family during Illness

Often a child's hospital stay is unexpected. Many families take the child to the doctor, and wind up in the hospital not knowing what to expect. This is a very stressful time for any family. Whether you are a new mother or have a houseful of children waiting at home, this is going to be a challenging time for everyone involved.

My middle daughter was in the hospital unexpectedly for 54 days straight. That was 54 days that I as her mom was unable to leave the hospital (I was nursing her at the time and that was her sole source of nutrition). Not that I wanted to leave, because I certainly didn't want to leave my daughter there alone, but I also had 2 other young children at home that needed me.

Finding appropriate care for my other children was a top priority and during the days where only the rich had cell phones it was also a challenge to find someone at home that could help me with my older children.

Offering to assist a family that has other children at home during a child's hospital stay is a lifesaver to a mom that needs to be in two places at once. The person that cares for the mom's other children should be understanding to the children as they are also going through a difficult time with mom and their sibling gone. The children remaining at home might be prone to acting out and require extra attention during this time. Keeping them busy and out of mischief may require a lot of effort on the care giver's part.

If at all possible, it is best to keep the children remaining at home in the home of origin rather than take them to someone else's home. This requires less transition for the children and remaining in their own surroundings will help give them a sense of stability.

Since the mom and dad rushed the child in to the hospital there are often housekeeping issues that need attention and other minor things that an in home care giver to the remaining children could do to assist the family in need. Whether it be something as simple as finishing up the dishes or doing a few loads of laundry or as complex as arranging for these things to be done by others, it is a much appreciated gift to the parents that are busy struggling with a child's illness.

Its difficult to eat properly when your child is in the hospital. It is very very easy to get caught up in eating a quick bag of chips or a candy bar just to keep your body going a little bit longer. A friend of mine would come in and sit with my daughter while she was asleep so I could sneak out and get a healthy meal. I also took this time to take a walk outside just to refresh my own spirits. Sometimes the hospital will have volunteers that can come in and sit with a child while mom or dad is out of the room also.

If you are involved in a church it is a great opportunity for someone to step in and help provide meals or respite care for the parents in the hospital. Once the child is back home this would also be greatly appreciated for a few days.

Since my daughter's 54 day stay at the hospital was unexpected, I was very unprepared. I had not packed myself a bag of clothing or brought any personal items along with me to the hospital. We were only going in for what was to have been routine tests so we had no idea what we were in for.

Thankfully I was able to get a hold of a friend and gain her access to my home in order to procure some clothing and other personal items. What a blessing that friend was. In subsequent visits I learned to keep a bag at the ready for such emergencies.

Laundry can be quite the challenge when a child is in the hospital for any length of time. Some hospitals, especially children's hospitals, have a laundry facility on the floor for personal use. Its usually on a first come first served basis but let me tell you, if you are out of clean clothing it is a Godsend even if you do have to wait!

Errands seem to spring up where least expected. I was blessed with a few friends that were always calling me to see if I needed anything. It didn't matter how large or small, my friends were awesome about making sure I had what I needed. They were even kind enough to bring me the checkbook, stamps and my mail so that if I had any bills due I could pay them.

A listening ear is always a blessing to the harried mom in this situation. Rather than call and risk waking her and the child up, Send her a quick note or postcard and let her know you want to help but did not wish to wake her. Ask her to call you at her earliest convenience so that you may help. Or better yet, send her some flowers and let her know you want to help and ask how you may be of assistance to her. Remember to leave your phone number in case she doesn't have it with her.

Compassion and understanding are much appreciated by the family undergoing any medical issues. Dealing with a child that is ill is a challenge in and of itself. Adding other children and life's general responsibilities to the mix can make it seem almost insurmountable during this time.

Finding the humor

Dealing with cancer is a long hard road with way too many bumps and thumps to count. One thing we learned early on is to cherish each and every milestone whether it be an easy blood draw or chemotherapy treatment or just simply getting off of the elevator on the right floor and having the elevator not get stuck enroute.

Finding things to laugh about is not always easy. Keeping a childs spirits up during this time is important and it is easy to mourn the disease and be angry. We found many ways to find things to laugh about during our treatments of cancer.

Here are a few sites that have been inspirational for us and other families dealing with cancer. Please feel free to message me if you have other sites that could or should be listed as ways of finding humor and encouragement while dealing with cancer.

http://www.laughterremedy.com/humor2.dir/humor1_99.html

Find appropriate cards and gifts for the cancer patient here:

http://www.staypositivegreetings.com/

Don't go it alone. Share your story with others. If you have a story to share with us about you or your child or family during cancer treatments, please send me a message. We'd love to hear your story and share it with our readers.

Apologies

I'm sorry I've been very remiss in posting here. We have been so busy with life!

To give you hope, there is life after cancer. Do not despair. Though we have ongoing medical issues (some related to the original cancer and surgeries and others that are just normal childhood things) we are continuing to trust in God that our daughter will grow up to be a normal happy young woman.

Do not despair. There is hope where there is prayer. If you are feeling down today I encourage you to take a walk, call a friend and just talk. I know from experience how difficult it can be to watch your child going through this difficult time. You wish it were you instead of your child. Know that things will get better in the long run and cherish this time to give of yourself to your child.

Please feel free to drop us a line and share your story as you go through your own personal struggle. Share your strategies for coping as well as your prayer requests!

Patience vs Patients

Our family has come to the conclusion that if you are a patient you must have patience. As the saying goes, "the best laid plans of mice and men often go awry". As a parent of a child with cancer this was so often true.

When our clinic moved from one hospital facility to another we would often get to a department such as radiology only to be told we had to return to the previous department, naturally 4 floors and miles away, for some form we required or a specific piece of information. When we returned to the original point of departure we were told, "on no, they don't need that anymore". It was so frustrating at times I would just sit and cry. Of course, they "couldn't call the other department" (I think that would have been too easy!) sometimes I thought that was literally just done to frustrate us. Thus we became advocates for ourselves. Prior to the departure for another department I would have the front desk call the other front desk (no matter how hard she glared at me I waited for this call before I would leave). I reiterated before we left that they had previously required such and such paper and I would not be wasting my time going up and down the stairwells or elevators if it was required, they could fax it.

At first I was met with a hard cold stare. After a few times of this over the course of several weeks and tests, they simply did the proper work prior to our moving on to a new testing area and things were in order.

I was so frustrated that at one point a passing clergy stopped to ask if I was okay and if they could help. After he prayed he went to bat for us and things went a lot smoother.

My advice to any one is to ask questions til you do understand what is going on. Don't be afraid if you upset the receptionist...they should be doing their job and making your job of being supportive to your child much easier. Get the child life/social workers involved, get the clergy involved, what ever and whom ever it takes to accomplish what is needed. If you don't get anywhere with someone, call the front desk and get the supervisors name and go to them. Keep going til you get answers and results.

You are your childs best advocate!