Coping with Childhood Cancer

Nausea and Nutrition Tips

2007-09-09T14:41:00.000-07:00

Poem by Jillian Pasley

4 time cancer survivor
2 time bone marrow recipient
All around COOL KID!!!

i'm pretty, sensitive and wise
i wish to go to Rhode island
i dream to find a cure for cancer
i want to sky dive and be famous
i wonder about heaven
i'm scared of death
i like food and to sleep
i believe i can talk to my sister even if she is dead
i love my mommy
i want to be a chef
this is me because god is with me

Tips for Coping with Nausea
Unfortunately, the best way to fight nausea is to find the right medication combination of anti-nausea meds that work for your child. Work with the nurses and doctors to find what works best and the same meds don't work for every child. Kytril didn't work for Sarah AT ALL, but worked fine for our friend's daughter. Also realize over time, what worked in the beginning may not work by the end of the course of treatment and you might have to change.
Listen to what your child tells you about certain foods and drinks and don't push it around chemo time if there is something they don't want. Sarah ate very little before chemo, and that helped her not to feel quite so sick some of the time.
Sometimes the med also cause a funny taste in their mouth and that adds to the nausea, Sarah loved Sweet Tarts and that helped kill the funny taste from the meds. Usually a sour or mint flavor did the best.

It seemed as though Gabe developed a tolerance to certain medications, close to the end of therapy we had to switch nausea meds as he started to become more nauseous and sick.
-Lu
As for the nausea let your child pick when and what to eat. They know their bodies better than anyone else and know when they can take in something and it has a good chance of staying down.
-Kim
When you know they will have chemo, try to limit foods/drinks that are your stand-bys. Lina loved apple juice and milk and during one 4 day hospital-stay-chemo, she drank literally gallons of each. She developed a strong aversion after that, and wouldn't take anything but water afterward
-Natalie

There are now suckers available to assist with feelings of nausea, I cannot say that they worked for Gabe as they were not available then, but I hear good things about them.
You can order them at
www.threelollies.com
-Lu

Adding Calories to Food.
Carnation Instant Breakfast works very well and can be used to make chocolate milk and milkshakes. It tastes much better than Ensure! It also doesn't feel as bad as many foods when they have mouth sores. Cook with whole milk, butter and oil. Make the calories count; if they want steak, feed them steak. Call their favorite restaurant and see if they will make an exception and give you a reservation and a table out of the crowds. We were very lucky and some of her favorite places would work with us when her counts were low or we had to work around an IV med schedule. The fun of eating out sometimes boosts their appetite

When making anything that requires milk, I would use half and half instead. It is also makes everything taste so much better with the added fat!
-Kim
Seems like it's easier to "drink" meals than eat them. We did lots of smoothies & shakes (always trying to sneak in a spoonful of peanut butter here and there). Never gave a drink of anything without pouring something in (e.g. milk = Carnation Instant Breakfast - lots of flavors, try it until they like one; juice = soy supplement that added protein and calories, even added this to soda when that was the hot ticket).
Most of all, try not to stress too much. If all they want to eat is Pringles or Cheetos (always good back-ups it seems...) give it to them and remember this too shall pass!
-Natalie

Contributions from:Kim, Natalie and Lu
Blogger - Dianne

2007-08-30T20:04:00.000-07:00

Here is an article I wrote which will be posted on www.coolpeoplecare.com to help raise public awareness of childhood cancer month...

This fall my five-year-old son began Kindergarten.
A big step for any parent, but for my husband and me, this small step is particularly poignant. Our five-year-old son is one of a growing number of childhood cancer survivors. On Christmas day 2002, exactly one week before his first birthday, he was diagnosed with a malignant tumor in his sinus cavity. At the time it was hard to imagine him reaching his second birthday, let alone boarding a school bus heading to school.

I am trying to savor this very bitter sweet moment, but I find that the feelings of guilt that it evokes can become overwhelming. Gabriel was not able to contribute to the decisions that were made about his treatment, so I can only pray that he will grow to understand the choices we made.

Gabe suffers, as all childhood cancer survivors do, from long term effects of the very treatment that saved his life. Some of his problems are subtle, such as the speech defects from surgeries and cognitive side effects of radiation. Other issues grow more glaring as he ages. Radiation treatment has caused the right side of Gabe’s jaw to stop growing, as his head continues to grow his face becomes more distorted. Rob and I have worked hard to instill in him the virtues of being a sweet and polite vs. cute, but that rhetoric doesn’t hold too much water when you are being teased by your peers. Gabe has a very healthy self worth and I am confident in his ability to “hold his own” but, thinking of him being teased breaks my heart all the same. Together we will face all the surgeries and teasing and I’m sure it will bring us closer as a family, but there will always be a part of me that resents the fact that this ordeal never seems to be over.
The biggest part of my heart, however, understands all too well that every single hurdle we have to overcome is a blessing. We have the luxury of complaint because we still have our child. Without the great advances in the treatment of childhood cancer, we would be silently weeping by a grave, instead of swallowing a lump of pride as he boards the school bus.

Survival rates for childhood cancer have risen sharply over the past 20 years. In the United States, more than 75 percent of children with cancer are now alive five years after diagnosis, compared with about 60 percent in the mid-1970s.
However, the unfortunate truth is that as the rates of survival increase, so do the number of children diagnosed.
Over the past 20 years, there has been an increase in the incidence of children diagnosed with all forms of invasive cancer; from 11.4 cases per 100,000 children in 1975 to 15.2 per 100,000 children in 1998.*
Because of the growing demographic of childhood cancer survivors, there have been great strides made in recognizing and treating the after effects of chemotherapy and radiation. There is an understanding now that treating children with cancer does not end with the conclusion chemotherapy. As a result, a growing number of Survivorship clinics are cropping up around the country.

There is also an increasing understanding of the social and psychological consequences of cancer treatment; young adults especially can experience feelings of isolation and depression.
Gilda’s Club of Nashville is working closely with Vanderbilt Hospital to assist young adults, who are juggling the difficulties of college life and finding employment while dealing with the myriad of health issues left over from cancer treatment.

My family is truly blessed, Gabe survived his brush with cancer and his side effects are minimal compared to the challenges that many other children face. He had the privilege of becoming one of the very first patients at the Survivorship clinic at Monroe Carell Jr Children’s Hospital at Vanderbilt. The staff there is actively tracking the long term effects of his treatment. They have also educated me to the fact that some of Gabe’s “quirks” are not “just Gabe”, they are well documented cognitive “late term effects” of radiation to the skull. Although the number childhood cancer survivors is swelling, there is still a great need for better medicines. Every child facing cancer treatment should be assured not only of survival, but also of minimal side effects from treatment.

As Gabe begins this new chapter of his life, we are mindful of the fact that his survival rests squarely on the shoulders of those children who did not survive, children whose stories are forever interwoven with ours, like the intricate pattern of a rug.
In honor of Gabe’s battle my family started a non profit dedicated to educate and assist families facing childhood cancer. During September, childhood cancer month, we ask that you take a minute to visit our website to read about ways you can reach out to help families in crisis.
http://www.gabesmyheart.com/
To join the growing advocacy movement supporting childhood cancer please visit the curesearch website
http://www.curesearch.org/support_curesearch/raise_awareness/

*Information compiled from both Cancer.gov, the Web site of the National Cancer Institute, and cancer.org, the Web site of the American Cancer Society

Blogger Lu

Asking For Help

2007-06-14T11:32:00.000-07:00

Asking For Help

So many parents and caregivers feel guilty asking for, or accepting help. We pride ourselves on being self sufficient and independent. When a devastating event, such as a diagnosis of cancer, happens to a family, everyone’s physical and emotional needs change. Suddenly we find ourselves needing help in one way or another, there is definitely no shame in that. Some families are lucky enough to be able to rely on family who live close:

“We had family practically live with us for the first month after Lauren's diagnosis”- Scott and Jennifer

“My Mother-in-law sort of organized it for us and made sure that she was at our house when the food was dropped off and put it away, so all we'd have to do was heat it up. So nice”- Tiffany

When Family does not live geographically close, it can make things a little more complicated. If friends and neighbors are aware of your circumstances, they are usually waiting to be asked so they can step up and help in any way they can.

It can feel awkward to ask for help, but remember that it makes everyone feel better to know that they are able to help you in any small way. You can also maintain closer friendships with the friends who feel like part of your support group. Our families re-iterated time and time again that if possible, you should find a way to get around feeling guilty and rely on friends for help….

“I have a problem asking people for help, I feel guilty when people do things for me or my family that I feel I should be doing. The one thing I learned was that your friends, family and people you have never met before will be coming through the walls to do things for you, so get over how it makes you feel and just ask”. -Kim

“When people ask, what can we do to help; here is where you really need to take advantage of that offer”. - Jennifer

Some friends find remarkable ways to find help for your family:

"A friend put a full page ad in the community newspaper, and we had some help based on that". – Jennifer and Scott

Most families however find that it is co-workers, neighbors, church or temple communities that step up to provide assistance. Try to write down some ideas so that when you are asked you can provide friends with ideas of how to best help your family. That help may come in the form of something physical or be more spiritual in nature.

“Everyone can't provide dinner next Tuesday, but they can pray, which is something we always asked for”. -Scott and Jennifer

Contributors: Scott, Jennifer, Tiffany and Kim

Blogger: Lu

Ideas For Communication

2007-06-06T17:35:00.000-07:00

Phone
Many families find that during hospital stays, rest is hard to come by.
It may be in your best interest to find a trusted friend who can start a phone tree for you. This person will be the one person you give updates to, along with a telephone or email list. Keeping family and friends updated can be as simple as making one phone call.

"Honestly, with this one, I would appoint one person to be the official spokesperson. I found that when I talked about it so much, it would either make me think to much about it and get depressed or mad or I would minimize what was going on so much that I would make someone angry with me because they thought I was purposefully leaving them out of the loop of what was going on. If you can’t set it up to be just one person then assign certain people to talk to certain friends and family”.- Kim

During hospital stays, decide when and if you want to receive phone calls. Be clear about your wishes. Give your family and friends set hours to call, so as not to interfere with doctors rounds or nap times. Sleep can be hard to come by; the last thing you want during a nap is to be disturbed by a ringing phone. Turn off your cell phone and take the hospital phone off the hook if necessary.

Website
It seems like all our parents agree that the very best method to update friends and family about treatment is to have a web page. There are several free web hosts with web sites designed specially to keep friends and family up to date on your child’s progress.

”It beats sending out emails and potentially forgetting someone.”
-Scott and Jennifer

“I created a web site. It's a wonderful way to update loved ones on appointments, test results, chemo etc. without having to repeat it over and over to everyone when you may just want to sleep”.
-Cheryl

Free websites
www.caringbridge.org
www.carepages.org
www.blogspot.com

“As far as communicating to family & friends, the best source of help is of course setting up a Caringbridge website. There is just no possible way to contact all of your family & friends to give them updates so this is a great service to use!”- Tiffany

Contributors: Tiffany, Scott and Jennifer and Cheryl

Blogger: Lu Sipos

Welcome

2007-06-05T06:28:00.000-07:00

Your Child Has Cancer…..Now What?

We all have very strong emotions at the time of our child’s diagnosis (to say the very least). Each one of us deals with the news in our own unique way, but there are similarities in the emotions shared by every parent or caregiver who has received that same terrible news. From time to time you may think you are going crazy, but if you can find someone who has shared your emotions it can validate your feelings and give you a sense of peace.
You are not alone.

“At the time of Gabe’s diagnosis I felt like I had somehow fallen short as a parent, I had been given a beautiful gift and had not taken good care of it. How could I have let him down so badly, what kind of a parent was I? My impulse was to run away and hide with him, although I knew it would solve nothing, I just wanted to hide him away”.- Lu

Not every parent shares those feelings, but some do!
We all need to process the information differently and comfort ourselves in our own ways. Here are some ideas that worked for these parents:
“It might sound crazy, but I started a journal for Alex from the night she was diagnosed. I wrote a letter to her and I think that was what kept me going. I’ve got pictures in it from when she was in hospital. Me and Alex still go through the journal and talk about it. It still makes me cry and breaks my heart to see what she went through”.
- Rachel

“It’s 10 pm you and/or your child just have to have a scoop of REALLY good ice cream or Mochachillo. I know it helped me deal with the stresses of things up there.”
- Kim

There is no magic formula to help you get through your child’s illness, we all muddle through the best way we know how. It is an ongoing process of trying to find a way to understand and organize your thoughts, block out the negative without exposing yourself to more pain. In some ways most of us became emotional zombies rather than allow ourselves to really feel the gravity of the situation, as Rachel and Kim explained:
“I got to the point where I could not stand to talk to certain people about what was happening because they would get so sorrowful about what was happening and I am one that chooses not to dwell on the bad things. I like to focus on the good and there was always some good to be found, when going through cancer stuff it is just not always easy to find.”
- Kim

“It used to break Paul’s heart to go home. We were a family and yet it felt like cancer was keeping us apart. As a mother you are a protector and I felt like I walked around with a brave face on.”
- Rachel

We hope that you can use some of the information in this blog to help you understand that you are not alone in your feelings and to help you avoid some of the pitfalls we have experienced as a group. If we can help some of you to feel a little more prepared to face the task in hand we will have achieved our goal.

We are looking for new bloggers:
We welcome you comments and questions about the information included in our blog and encourage you to submit your own topic ideas and experiences.

Contributors: Rachel , Kim.
Blogger: Lu