Is a place like St Jude's really better?

Kath23 · Jul 10, 2006

As a parent with a child who had cancer I feel I can answer your question. From my understanding St. Jude's can be better for kids who have a rare cancer, or cancer not responding to regular treatments. For 'garden-variety' cancers, like childhood leukemia (which is what my daughter had), any facility with a dedicated PED-ONC center will use a treatment plan very similar to St. Jude's. You're right - St. Jude's does share information with other facilities/groups. Most hospitals in the US use COG (Children's Oncology Group) treatment protocols/Phase III trials, which are developed from looking at research from all hospitals, in the US and abroad.

I belong to a list-serve of parents who have kids with ALL (acute lymphoblastic leukemia), and the only ones on the list who are being treated at St. Jude's are the ones who either live in the area, or who have relapsed and other facilities have run out of options.

HTH,

Kathi

PS - My daughter is two years off-treatment and doing very well! :)

catlady, BSN, RN · Jul 11, 2006

I thought that what makes St. Jude's special is this: All patients accepted for treatment at St. Jude are treated without regard to the family's ability to pay.

(Unlike a certain major children's hospital that's always whining for donations through the Children's Miracle Network, and sent me to a collector after my child was diagnosed with cerebral palsy. The billing person literally laughed at me when I asked her to accept my insurance as payment in full. This was in the days when I was paying the mortgage with the credit card, the babysitter with rolled-up pennies, and saving up for doctor visits because I didn't have the ten dollar copay. After that, the poor store cashiers never understood why the steam came pouring out of my ears when they asked if I'd like to donate during their store's charity drive.)

ak127 · Jul 11, 2006

Its hard on sick kids and thier families to travel and be away from home the whole time during treatment. I volunteered in a couple of Ronald McDonald Houses and all they wanted was to get home. If you can get the *same* treatment protocol at home its probably much less stressful. And what child with cancer or thier family needs more stress?

That being said, if I had a child with a rare or difficult cancer and my doctor looked me in the eye and said I can't help you, only Dr. XYZ at the Hospital Over the Rainbow can help you, you can bet I'd be packing my bags.

rg1956 · Jul 11, 2006

The care you receive at St. Jude's is over and above the call of duty. This place was a god-send for our family. We had no idea about the "accepting no payment" policy at St. Jude when our doctor recommended to take our child with ALL to their facility. I do know that not having the financial problem that can come with astronomical medical bills was allieviated for us, but that was not a top priority at the time. The care we received at St. Jude was wonderful. My son's doctor helped to write the protocol that he was on at that time. He did go all over the world teaching his work. I believe they conferred with other countries and took the best of each portion of the protocol to combine what they were using. They were very knowledgeable and on the cutting edge of technology. We go for check-ups once a year and through what I experienced there, I now have 2 semesters left of nursing school myself. St. Jude also has a satellite office near us that helped to bring us home sooner than expected. They definitely tried to treat the whole family and treat as much as possible on an out-patient basis. No one ever wants to be in the situation to be in need of their services, but we found out what a wonderful place it really is.

manna, BSN, RN · Jul 11, 2006

I do not have any personal experiences with childhood cancer, however... I believe St. Jude is a very special place. I don't think that it's necessarily the type of treatments delivered there as much as it is the manner in which they are delivered.

I had the good fortune to be able to visit St. Jude on occasion during nursing school, and I will from now on be a lifelong supporter of it. Very special, very moving place. I don't think words could express what visiting that place meant to me, and I've never even dealt with a cancer in my family (much less that of a child).

luckylucyrn · Jul 11, 2006

I live in Memphis, and got to tour St. Jude while I was in Nursing school. From what I learned there, the majority of the focus of St. Jude is on research. They develop protocols for many types of childhood cancers and work with other facilities and countries to fine tune protocols and they absolutely share them with others. A lot of the children are on protocols that are being tweaked and fine tuned and many of them are the latest treatments available. I was surprised that out of the many many buildings on the St. Jude campus, almost ALL of them are research buildings! The hospital itself only has about 60 inpatient beds.

One thing that I think is special about St. Jude is the way they try and ALLEVIATE the stress for the patients and their families. There are places in Memphis like the Target house where the Children and their families stay in apartments that are designed for immunocompromised patients and have activities throughout the day, the parents get grocery store gift cards, the children's siblings can even enroll in a local school! There is a state of the art workout facility, a music room, a crafts room, a beautiful playground, and so much more. It is the most warm and inviting place I have ever been. The Target house is for children/families who are being treated on an outpatient basis, but live too far away to drive every day. And, of course, it is free. It is not home, but it is Something that they have created in hopes of decreasing the stress some.

I mean, I could go on and on. I am sure that the other places that provide treatment for childhood cancers have just as many wonderful things about them as well, and I am very glad that the researchers at all those facilities work together!

TazziRN, RN · Jul 11, 2006

If one of my three children was stricken with cancer and the doc told us that only XYZ Hospital can help, you bet your bippy we'd be packed by the end of the day. What I meant was, if I took my child to UCSF or Stanford, both of which have excellent Onc. centers, and my child had a negative outcome, would I later feel that the outcome might have been different if we had gone to S.J.'s?

Kathi, I am so glad your child is doing well, please give her an extra hug tonight for me!!!!!