Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Looking for Your Stories

striving4more
0 Recommendations

My name is Diane. I won't repeat everything in my profile but my 9 year old daughter died of cancer last June and as a result of her journey, I have founded a non profit organization called Striving for More. I am looking to fund emotional and spiritual support for kids with cancer. It is really important to me (and to my board) that we meet the needs of the parents as we put our programs together. We plan on providing funding to hospital based oncology units (did you know that almost all emotional support services in our countries oncology units are donor funded?). And many hospitals do not provide theses services at all (like where my daughter was... DUKE... it saddens me and I want to fix this problem).

However, if we are going to provide hospitals money, we want to have them give parents and children what they need. Not what they think you need. I have my own opinions based on my experience with Colleen (my daughter) but I would like to hear other stories as well.

I want to hear good stories, bad stories, sad stories and happy stories. Stories of where you or your child were treated well or stories of where you think you should have received better emotional or spiritual support. You do not need to be specific regarding where your child was treated.

Areas of focus include:
- Pediatric Psychology
- Social Workers
- Parent and Patient Support Groups
- Child Life Specialists or Recreational Therapists
- Hospital Based Pastors

Please post your stories here or email them to stories @ striving4more.org (remove the spaces, I put them in there so the spambots don't pick up the email)

Thanks so much.
Diane Moore
Raleigh, NC

Explore topics in this discussion:

Cancer Surgery Osteosarcoma Childhood cancer Embryonal sarcoma Fever Bone marrow transplant Neuroblastoma Liver transplant Sarcoma

16 replies

Kashmansmom

My son was diagnosed with AML in November of 2008. It took five rounds of chemo to get him into a solid remission and at that point it was decided that a bone marrow transplant would be needed. We let our home in Tulsa and spent three months in Fort Worth. We have been at both the Children's Hospital at Saint Francis in Tulsa, Oklahoma and at Cook Children's in Fort Worth, Texas. My son is 15 and I think that both of these hospitals have overlooked the needs from teenagers. Cook had a therapist for the kids to speak with, but it was very clear that she was used to dealing with younger children. They did have a parent support group that met once a week, but it felt like it was still in the early stages. In Tulsa, there is not a therapist or psychiatrist for inpatient kids. Even the doctors think that having one on staff would be beneficial. As for pastoral care, I know that both hospitals have pastors, yet no one has ever offered us one or came to see us. When in the middle of such overwhelming responsibility as a parent, I would rather not have to hunt down one more person to see if they are available. I just needed someone to come and check on me.

striving4more

Kashmansmom,
Thank you so much for this input. This is really valuable to me. As the mother of a 9 year old who had cancer, I would not have considered the needs of teens in my requirements if you had not shared your story. Thanks so much for taking the time.

What you mentioned about not only the existence but their delivery/approach (being proactive, checking on you rather than you having to hunt them down) is and excellent point as well.

Be good to yourself too!
Diane

Kerry_1

Hello to you both,

I am the Mum of 3 beautiful girls, ages 21, 19 and my youngest daughter Jess would have been 16 this
August. She was diagnosed with AML in June of 07 and died in March 08. CANCER SUCKS!! We live in Canada and so I think our health care is much different. We had a pediatric home liasion nurse and a social worker who visited us daily. (The psychologist was new to the hospital and unfortunately didn't do much to support us at all). I think that was mainly her and not necessarily the position. I am sorry for both of your troubles. To Kashmansmom, I am curious as to how your son was diagnosed and how he is doing. Jess never had a bone marrow transplant as neither of her sisters nor us were matches :(. Best of luck to you both! I will keep you in my prayers!
Kerry

sunshine123

my daughter was 8 and the team at the hospital we went was wonderful,the only down fall was travel time.VERY STRESSFUL.They have the knot program which is nice too kids not on thearpy.my daughter is 15 now and we have a trip next week.

Kashmansmom

Kash was diagnosed after being sick for a couple of days. He was never sick and when he was running fever and vomiting for two days I took him to our primary care doc. We were so fortunate that this is a thorough doc who ran blood work to see if Kash had a virus or a bacterial infection. When he got the blood work results, he had the lab look at the blood under a microscope and they saw the blast cells. We then admitted to Children's Hospital and they did a bone marrow biopsy to make sure it was AML rather than ALL. He has since had so many bone marrow biopsies and aspirates that I have lost count. He was inpatient for a week at a time for each round of chemo, then would get readmitted a week or two later for fever. The only time we have been able to be home has been when he is doing really great and once we got to do IV antibiotics at home. Kash did not have a related donor. His donor was international through the bone marrow registry. We will not even have the option of meeting him for two years. Right now, he is still inpatient because he needs blood and platelets daily, but we are working to come home and just visit hospital for a few hours each day. Kerry_1, I am so sorry for your loss. I admire you for continuing to support others through their journeys.

striving4more

Sunshine,
Can you elaborate regarding what the KNOT program is? I understand that you say it is an acronym for Kids Not on Therapy but what does it do? What is involved?

Thanks,
Diane

MaryAnneR

I wonder why you haven't considered starting a Candlelighters affiliate in your area. As the ED of the local affiliate in the Inland Northwest, I would encourage you to consider joining the other approximately 40 affiliates across the country who have the same desire that you have. We do not want families to be left alone to navigate the system and our mission coincides with providing direct support to families from the parents' perspective.

We require our board of directors to have a majority of either childhood cancer survivors or family members.

We are currently working to build a strong national organization and provide a Candlelighters affiliate at every pediatric cancer center so that stories like yours do not happen. You can join us.

I notice that you state that you are Christian. Is that why you have not considered teaming up as a Candlelighters affiliate? As you may know, Candlelighters is neither anti-Christian nor pro-Christian. We do not adhere to any religion mainly because not all children and families who are dx with cancer are Christians - and we do not want to discriminate.

Families need to be supported where they are and not expected to adhere to a specific belief. But we can refer families to pastors or social workers, etc. if that is something they desire.

And I get the post about someone checking in on families. That is something that we do. We also provide a crucial support system outside of the hospital. Something you may have not considered. More and more families are being treated on an out-patient basis.

I would be happy to talk with you about your goals and the possibility of working together to support all families of children with cancer.

Please check out our website at www.candlelightersinlandnw.org and feel free to contact me. I would love to discuss this with you.

Mary Anne

striving4more

Maryanne,

I would love to talk to you. I have actually been thinking quite a bit about Candlelighters and trying to find out if my organization can also be the local chapter. I was out on their main website the other day and I noticed that an organization that is a lot like mine (KidStrong) is also a Candlelighters group for California. I was planning on calling their main office tomorow to discuss it with them. Is that what you would recommend?

I have no issue with the faith. I believe everyone should be supported regardless of their beliefs.

Thanks for your note.

MaryAnneR

Are you in California? We do have regions for affiliates.

You can give Anne Spurgeon a call. She is with Capital Candlelighters in Wisconsin and is the affiliate liaison for national. She should be able to identify your region and if there are other Candlelighters affiliates that might overlap.
Capital Candlelighters website: www.capcan.org has Anne's contact information.

You can also contact the national office.

The national website is www.candlelighters.org

Here is the link from the national website with information about starting an affiliate:

http://www.candlelighters.org/Affiliates/StartanAffiliate/tabid/539/Default .aspx

So glad to hear you are considering Candlelighters.

You can also give me a call 509-474-2759.

Mary Anne

Laila99

Hi, I have a son who is 4 yrs old just diagnosed with ALL about 2 months ago. I started a blog and have over 35 followers from my community...including ppl all over the world. Could I put the organization on my blog for others to know about to give oppurtunities for others to help give support? A lot of people have asked me how they can help. I am realizing the more I am in the hospital I come across others who, I see, the need is great. I would like to help in anyway.

Haveyroo

HI. I think this is GREAT! We began my daughter's journey when she was 2 1/2 - she is now 5 1/2 and still has 3 years on her roadmap.

Currently we are being treated at Johns Hopkins and although our doctors are excellent with her actual treatment they don't care about the "family" aspect. I've been at Hopkins for 1 1/2 years and I can honestly say I still don't know what the social worker is for. She has never really helped us and can't give us any information of organizations to contact for help.

Child life is great if they show up. One time a CL person told my daughter they couldn't play with her because there were other kids in more need of her attention!

My child has never even been offered a physcologist, there is no parent support group. We honestly have felt completely alone through this entire treatment and my daughter doesn't even know how to interact with other kids.

Social worker was supposed to help with home schooling.....haven't heard from her in 2 months. We were thrown in to isolation for her Hi CY treatment and no one calls....we might as well not even exist!

rhenry3

My son was dx 2-6-09 with an 11cm mass in the middle of his liver, Undifferentiated Embryonal Sarcoma. Liver transplant 5-29-09. He was originally treated at OU Medical Center in Oklahoma and is currently being treated at Children's Hospital of Pittsburgh. I have to say that OU Medical was much better at handling the emotional aspect of the children; however, the medical doctors were poor, whereas, the doctors and nurses at Children's of Pittsburgh are much more knowledgeable and I completely trust them with my son's medical care; however, they don't seem to care about his emotional status at all. The social workers have been extremely inadequate and their is no emotional support for the kids at all or at least not that we have been made aware of and he has been in Pittsburgh since May.

ashtonsmom

My daughter was diagnosed with neuroblastoma stage 4 in 1991. She had her surgery, chemo, and Bone Marrow Transplant at Arkansas Children's Hospital. She was 13 months old. We had 2 different social workers back then and I will have to say that they were on top of things from day 1. They were exceptional. Our doctor (Dr. B) was excellent..... and the nurses were outstanding. All of the knowlege and compassion that one could expect was wrapped up in our healthcare team.
In 2004, my daughter was diagnosed with chondroblastic pelvic osteosarcoma (high grade). We were referred back to Arkansas Children's Hospital because she already had an oncologist there. Again, the doctor (Dr. B) and nurses were extremely knowledgeable as well as compassionate. As far as the social worker goes.... we knew her name but that was only from a meeting in the hallway. I don't ever remember her making the time to come into our room. If we happened to see her in the hallway she would speak but that was about the extent of our relationship with her. We also had an orthopedic oncologist (surgeon) (Dr. N) there who I will always be greatful to for not only his compassion, but he also referred us to M D Anderson in Houston TX for surgery. He could have done the surgery to remove the tumor but reconstruction involved more than his capabilities. He realized that someone else could do a better job. This doctor searched all over the country to find another doctor who was willing to reconstruct (most doctor's that he consulted with only wanted to remove the tumor and not reconstruct) But he didn't stop until he found the doc who says "send her on.... pelvic reconstruction is my specialty". I will always hold the orthopedic oncologist (Dr. N) at Arkansas Children's in high regards because he didn't let his own ego stand in the way of my daughter receiving the best care possible. I know this post is getting long but there is one small thing that Dr. N did that was very heartwarming. My daughter was in the hospital and very early one morning there was a tap at the door of our room. It was Dr. N (the orthopedic oncologist). He had a little knit cap that his wife had handmade for my daughter. Now mind you, my daughter was 14 and probably not exactly thrilled about wearing that cap but it was definitely one of those occasions where " it was the thought that counted" and for me it counted alot!
Our doctors at M D Anderson have been exceptional also. They have always encouraged my daughter to continue her life and do what she enjoys within reason.
I think our healthcare system is rather lacking in the areas of social work and those who are supposed to be there for the emotional and spiritual aspects of care. From 2004 on, we have been fortunate to have doctors and nurses who filled the roles of others who should have been doing there job.

PoeDunk

Hi, I'm Mae.

My 4 month old son was recently diagnosed with Neuroblastoma. It started in his adrenal gland and so far has only spread to his liver. He hasn't been put on any treatments, yet. They are closely monitoring his cancer.

He has a twin brother he was just xrays today for some odd lumps, or swollen areas on his head.

Keegan has been treated at the University of Missouri Children's Hospital in Columbia, MO.

They have been an absolutely WONDERFUL hospital to us! They are very understanding, helpful, and caring. They worked tirelessly for over a month to find out what was wrong with my son.

I am so thankful that we were transferred to that hospital. And I hope that they can rule out anything being wrong with Keegan's twin brother and that he's a perfectly healthy little guy!

I think the organization you are working on is a truly WONDERFUL idea!

I wish you great luck, and lots of support!

Mae

sunshine123

knot program gives them the follow up care they need.issues with side effects from the chemo they had also education.she gets blood work.we only go once a year now,starts out three months ,6 months.IT also helped me out because once my daughter got her port out i was scared to death when she ran her first fever,her going there assured me that everything was alright.when you go from all kinds of meds to nothing at all.medicine was my security blanket you know,cancer is a monster and i went on a rollarcoaster ride that scared the hell out of me but anyways i think for them to understand more about it the knot program gives them an idea because of what protacol she was on and how she is doing now

maggirose

Hi Diane, I'm really sorry for your loss and really do understand & know what your going through, lots of people say they are sorry but to truly understand you've had to have been through it too. I live in England and lost two children with neuroblastoma, Darren aged 16 yrs in 1991 and Rebecca aged 9 yrs in 1992 only 10 months apart. I have a beutiful daughter called Nicky who's now married to Graeme and they have given me three wonderful grandchildren, Darien, Samuel & Alexandra, the only downside is they now live in Australia but come xmas and i'll see them all for a whole month. When I was told of this illness I was devistated but I had lots of support from Candlelighters in West Yorkshre, England. They are a fantastic organisation, they helped with everything possible from travel costs to extra heating bills when the children were at home and the heating had to be on constant for them. They also treated everybody to holidays in England and at xmas parties and presents. We also had social workers who were as equally good, try candlelighters where you live and If they are as good as England then they'll help.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You