Some Educational Information

So the social workers and the nurses and the therapists are always asking us how we are doing and if we feel that we have the support that we need, etc. We always say we are doing great, because we are, but Blair and I have realized that one of the oddest things that has happened to me as a result of this stressful situation is that I have absolutely no desire to go to the store anymore. It used to not bother me. I honestly would rather clean the bathrooms and scrub the floors on my hands and knees then go to the store, not just the grocery store, but any kind of shopping. Is that weird? I still have money from my birthday I haven't spent. Luckily for me, Blair is sweet enough to go just about anytime I need him to. The other thing I have lost all motivation to do is run. I have ran on the treadmill once since Brynlee was hospitalized and diagnosed, and it sucked! Part of it is that it's just a lot harder to find the time, but I also have no motivation, and it also sounds really exhausting. I used to feel really good after I would run and enjoyed my little runner's high, but now the thought is about torturous. Ahh, maybe someday I will get going on it again.

Now for the educational information. I have been able to network with other parents of cancer kids and organizations and it has been brought to my attention that there are a lot of people who want to help but don't know how or the best way. I just thought I would throw some of this out here because it is really important that your money and time go the furthest and help the most. First of all, there are a couple of organizations that are popular for raising cancer funds, etc.; however, they also have presidents and officers and employees that make more money in salaries than most of us (100's of thousands of dollars a year, yep look it up). A few that I can name, Susan G Komen breast cancer, American Cancer Society, and Lymphoma and Leukemia Society. These are all great organizations, and I am grateful they have helped the fight against cancer, but very little of the money that is actually donated goes to research. Now I'm not saying not to support these organizations and their races (I have done Race for the Cure and will probably continue to if I ever run again ;-) ), but the most bang for your buck would be with someone else if you want to help research. As for childhood cancer, the Children's Oncology Group and CureSearch are both dedicated to curing childhood cancer and are nonprofit. Brynlee's doctors are part of the COG and this network of doctors are the best and are located at research/teaching hospitals collaborating with eachother trying to cure childhood cancers. Childhood cancer research is one of the most underfunded groups of cancer there is. They say it's rare, but it's really not. It's one of the leading causes of death in children. Next, the Children's Miracle Network Hospitals, i.e., Primary Children's Hospital. This hospital is truly an asset to this state and the region. Maybe you don't have money to donate, but what about your time? PCMC, for example, has volunteers who work in the Youth room providing activities for patients and siblings, a Parent Resource Center that gives information and helps parents with housing, education, and financial assistance, and the Kids Crew that come and play with patients, take them on walks, hold babies, provide toys, whatever needed. They also take donations for everything, blankets to use in the hospital, blankets for kids to take home, notebooks for parents to use, toys, books, or just whatever. And don't forget about the expenses that these families take on. ***Note, I am not soliciting, just making people aware.*** Anyone who has had any sort of lengthy stay in the hospital knows what I'm talking about. Ex-pen-sive!!! I don't know how some of the leukemia families make it as those kids sometimes have thousands of dollars a month in out-of-pocket expenses, and the treatment for leukemia is ongoing and long. Maybe you have resources that could help an out-of-state family find inexpensive housing, maybe you know how to help organize a fundraiser to support a family or want to donate funds directly to the family, maybe you have the time to help watch other children or go with them to appointments (sometimes those clinic visits are long). Again, knowledge is power, and I feel that I now see so much that can be done to help. I hope to be able to pay it forward someday and help more, but right now maybe I can help by just making people more aware. If you don't know what you can do to help someone or just help in general, don't be afraid to sincerely ask (and from experience, they might not know what they need), speak to a social worker, call the hospital and ask what they need the most (donations, service), call a local organization and see if you can volunteer (we know a great one called HopeKids). Hopefully I have given some ideas and have helped to spread some information that I hadn't really taken the time to think about before.