A Pathway for Parents, from Parents: Part III

This month we are continuing to discuss the different chapters from out digital Parent-to-Parent Guide. Following the Education Plan featured in last month’s e-newsletter is the Support Plan.

The first key to creating an effective support plan is to identify your unique needs. Each family has to make different adjustments so it’s important to recognize these needs. The first months are a huge adjustment period and you should not be shy about asking for help. From making emergency arrangements for siblings, to caring for pets or even watering your plants, don’t hesitate to ask and rely on others. The help you need may be in the form of something physical or be more spiritual in nature.

“We relied a lot on friends and family preparing meals for us. We especially needed them whenever we would come home from a hospitalization. Usually it would be right around supper time when we’d get home and the last thing I wanted to do was fix something to eat,” said Tiffany.

We encourage you to create a list of ways in which people can help you. Keep in mind that you will be spending much more time at the hospital and taking care of your child’s changing needs.

After you have identified your unique needs the next step is to identify your support group. Some families are lucky enough to be able to rely on family who live nearby. When family doesn’t live geographically close, the devastating event such as a diagnosis of cancer can be a little more complicated. If friends and neighbors are aware of your circumstances they are usually waiting to help you in any way they can. By allowing your friends to help, you are not only developing a closer friendship, but also creating a support group. Our families always re-iterate that if possible, you should find a way to get around feeling guilty and rely on friends for help.

“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,” said Kim.

Leah’s Lifesaver

Leah Trujillo has made up for lost time.

For six months the nine-year-old received her chemotherapy treatments for PH+ ALL mostly isolated in her hospital room.

Because of frequent bouts with neutropenia, Leah was at increased risk of developing serious infections. There were too few white blood cells needed to fight off harmful viruses and illnesses. For her own protection, it was best she stayed separated from the rest of the patient population.

Things can get a bit lonesome day after day behind closed doors. Leah Trujillo

Thankfully, a child life specialist at the Children’s Memorial Hospital in Colorado Springs introduced her to Chemo Duck.

There was an immediate connection, said Leah’s mom Charis Trujillo. According to Charis, the two are rarely apart.

“It was truly a lifesaver,” said Charis. “The day Chemo Duck was given to her, she wasn’t feeling well at all. It had been a really, really rough day.

“It was the only thing that brought a smile to her face,” recalled her mom. “And it wasn’t just a little one, it was a huge smile.”

That night Charis spent hours making videos of her daughter playing with her duck.

Chemo Duck has served as a great tool for Leah to educate her family about the therapies and routine medical procedures she experiences, said Charis.

“It’s amazing because it really keeps her mind off things,” she said. “She has other things to play with, but this is hands-on, which is what keeps her so occupied.”

“I think Chemo Duck is so special because kids who are going through these treatments – this is relatable to them. Leah is so attached to Chemo Duck because it is just like her, port and all. She connects to him in a way she can’t with her other toys.”

“It’s not a toy to her,” admits Trujillo. “I see that he brings her comfort too.”

Trujillo is thankful that people from all over the country are in tune to the positive impact Chemo Duck has on pediatric cancer patients. She knows that the generosity of donors allowed her youngest daughter to be empowered by a yellow, pajama clad, 12-inch stuffed animal.

Sometimes the biggest gifts come in the smallest packages.