Family Spotlight

COTA Rings in the New Year With Its 1,400th Patient

Born on November 11, 2008, Parker was diagnosed with End Stage Renal Failure. Parker spent the first 128 days of his life in the Neonatal Intensive Care Unit at Children’s Hospital of Wisconsin in Milwaukee. He must undergo a 12-hour home dialysis treatment, called peritoneal dialysis, every day. Baby Parker now needs a kidney transplant to save his life.

“Parker is a true miracle because the night he was born we were told he wasn’t going to make it,” said Lindsay Scaife, Parker’s mom. “All hope was lost at that point. When he was four-hours-old the doctors told us if we wanted to have him baptized, it would need to be done quickly. We chose an outfit and went to his hospital room to spend our last moments with him. Instead, Parker just kept beating the odds day-by-day. Hope is what kept us going.”

Adding to this family’s hope? Mom Lindsay is a perfect match for Parker and will be his kidney donor. To receive his mother’s kidney, Parker must weigh in at the 10 kilo mark. While he has met that milestone, the small size of his bladder has currently put the transplant on hold. Parker’s bladder has never been filled, meaning that it is less than one quarter the size of a normal baby his age. The family is waiting for an upcoming surgery that will place a tube in his bladder allowing for it to be filled with saline up to five times
per day. If all goes well, Parker’s living donor kidney transplant will be in late spring or
early summer.

But hope comes with a price tag. The Scaife family represents a majority of Americans -- they have health insurance through their employers; however, their ability to financially support Parker’s medical needs will soon be exceeded. They are concerned about insurance life-time maximums and paying deductibles, co-pays and other expenses, like the expensive medications Parker will require for his lifetime.

Earlier this fall, Dustin and Lindsay Scaife reached out to COTA for help with Parker’s transplant-related expenses; their team of volunteers has been working tirelessly
ever since.

Lori Kletzien, Vice President of Milwaukee-based Building Service Inc., serves as Public Relations Coordinator for Parker’s COTA team of 20 community members. According to Lori, “We have raised more than $15,500 to date and we haven’t had a fundraising event yet. Having the ability to use COTA’s website and viral marketing tools has been amazing. Parker’s COTA website (www.COTAforParkerS.com) is trustworthy and people feel very comfortable making online donations. When we started working with COTA, they sent out a press release about Parker’s journey and within 30 minutes of the email being sent by COTA, we were contacted by a local television station that taped an interview and aired it that day,” Kletzien added.

“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Rick Lofgren, President of COTA. “Parker’s story is like many that I hear nationwide … a child who needs a second chance at life, and a community that works toward ensuring never-ending hope becomes a miracle.”

According to Dustin Scaife, “COTA has helped us offer Parker a true second chance at life. With us near our lifetime max on health insurance, it is so comforting to know we are able to focus on Parker and not on how we are going to pay for the bills. Saying ‘Thank you, COTA’ doesn’t seem to be enough.”

Please visit www.COTAforParkerS.com and leave the Scaife family your
own message of encouragement, or make a donation to help with ongoing
transplant-related expenses.

-Top-

Family Resources

Preventing Infection

The following are things you can do (or avoid doing) that will help prevent an infection for your child or young adult after a transplant is received. Your family’s transplant doctor or nurse will tell you when some of these restrictions may be lifted.

• Stay away from people who are obviously sick with the flu, a cold or chicken pox.
• Make sure you wash your child’s hands with soap and water before eating and after going to the bathroom.
• Make sure your child, or young adult, showers or bathes regularly. Wash the incision as you would any other part of the body. Do not use lotions or powders on the incision.
• Clean cuts and scrapes with soap and water, and apply an antiseptic and
  a bandage.
• Do not, under any circumstances, allow your child or young adult to change the litter in the cat box or birdcage without gloves. This could cause a serious infection.
• Do not allow your child or young adult to garden, dig in dirt, or mow the lawn
  for six to eight weeks after the transplant without gloves. This could cause a serious infection.
• If your child or young adult is in a building or outdoors where there is extensive construction and dust and dirt in the air, make sure he/she wears a surgical mask to prevent inhaling certain infectious agents that may be in the air. It is better to avoid these areas as much as possible.
• Post-transplant patients must brush and floss teeth daily.
• Make sure to keep fingernails and toenails clean and trimmed. For hard to manage or ingrown toenails, see a foot specialist.
• Talk to your transplant doctor about getting the flu vaccine and the pneumonia vaccine for your child. These do not contain a live virus and are safe for post-transplant patients.
• Do not allow your child to get any vaccine that contains a live virus like the smallpox or polio vaccine.
• Talk to your doctor if someone in your house is going to receive a live virus such as the oral polio vaccine or diphtheria vaccine if your child or young adult has not already been vaccinated.
• Make sure your post-transplant child or young adult eats only thoroughly cooked oysters, clams or mussels, and avoid swimming in estuarine waters (where fresh and salt water mix) to minimize risk of serious infection from Vibrio vulnificus. You can read more about the dangers of this bacterium at SafeOysters.org.
• Do not expose your child or young adult to cigarette smoke, either firsthand
  or secondhand.

Source: Beth Israel Deaconess Medical Center

For more information about Transplant Family Resources, please or visit www.cota.org and click on “Family Resources”.

Ask the Right Questions When It Comes to Your Child’s Medications

Here are some questions to ask your child’s transplant doctor(s). Use these questions to help you discuss your child’s medications, and write down anything you want to be certain you remember.

• What is the name and purpose of each medication?
• Are generic versions available for any of these medications?
• In your opinion, which medications would you choose for my child to take
  as generics?
• What medications would you prefer that my child take only as the brand
  name versions?
• Are there any situations when it would be okay for my pharmacist to change
  a medication?
• What should I do if my insurance company will not cover a brand name medication that my child is prescribed?
• Who should I contact if I pick up a prescription on a weekend and discover it is
  not what was prescribed?

Here are some questions to ask your pharmacist:

• What is the difference in my co-pay for a branded medication versus a
  generic medication?
• Am I receiving the medication that my doctor prescribed for my child?
• Do you have the brand name version of this medication in stock? If not,
  can you recommend another pharmacy that might carry it?
• Is a co-pay card available to help with the cost of my child’s medication?

If you need further assistance with medication questions, please contact Astellas Reimbursement Services at 800.477.6472 or visit www.astellasreimbursement.com. Further assistance may also be found at the Value Card support line at 866.790.7659.

-Top-

COTA Family News

COTA Funds and Transplant Medications

The staff at the Children’s Organ Transplant Association (COTA) knows that paying for transplant medications is often a significant financial burden for families every month. COTA funds may be used for transplant medications. However, please remember to submit the original prescription tag when submitting reimbursement requests for transplant-related prescriptions.

COTA will be sending a statement mailing to families later this month. The statement will list fund usage for the past six months, as well as the amount available for transplant-related expenses. Please take a look at your statement and call COTA with any questions.

We want to stay in contact with you, so please remember to let COTA know when you move or change telephone numbers or email addresses.

As always, families should call Jackie Tate or Rebecca McCall at 800.366.2682 or email COTA at with any questions or concerns. We like hearing from you!

-Top-

COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Extensive Volunteer Training Program
Few families know how to organize a community fundraising campaign, but the Children’s Organ Transplant Association does. With more than 20 years of experience, COTA has the expertise to help volunteers be successful. COTA provides ongoing support to community campaign volunteers and patient families.

-Top-