There is more to treatment than eradicating the disease. It is also about treating people - people who have families, friends, jobs and dreams for their future.
Are leukemia/lymphoma/MDS contagious? Are they hereditary? Blood cancers are not contagious, nor are they hereditary. Often times people become concerned for their family and loved ones thinking they might pass the disease on to someone close to them. This will not happen. It cannot be passed on through contact nor through genes. There has been no evidence showing any hereditary connections.
Since I was diagnosed, people are treating me differently - I don't want them to! Why are they doing this? Often times people don't know how to respond to a person who has just been diagnosed with cancer. Particularly leukemia, lymphoma, or MDS because there is not a tumor that can be "cut" out or an easy "sure-fire" treatment plan. The course of treatment is long and arduous. Unfortunately, people do not know what to say or do. Therefore sometimes it is easier to back away from the situation rather than staying in touch with the patient. Since it's about them and their responses, not you, unfortunately, there isn't much you can do.
I came through treatment really well, but it's over and I'm still tired all the time. Is this normal? Treatment for blood cancers requires intense chemotherapy. The job of these drugs is to eliminate the production of the cancerous blood cells that are produced in the bone marrow. With the decrease of red and white blood cells, your body is working hard to produce healthy cells to replace the "blasts" or cancerous cells. Your cell count may actually return to normal long before the cells are working at full capacity. Think of it like the immune system of a newborn baby that has built up no antibodies to the outside world. Additionally, the toll that the chemotherapy has taken on your body and the rest of your organs can also extend the recuperation time. So be patient with yourself! Over time, your energy will gradually return.
Will my child be out of school during the entire course of chemotherapy? It is very likely that a child will miss some school, but typically not for the entire course of treatment. You can make accommodations, for example, when platelets are low your child can go to school, but perhaps gym class will have to be sidelined. There may be brief periods around certain treatments that require him or her to stay at home due to a suppressed immune system or a reaction to a therapy. But with the help of tutors (which should be provided through the school system) your child should be promoted with his or her classmates.
My good friend/cousin/work colleague was just diagnosed with leukemia - what can I do to help? This is a tough question because it depends on how much you want to do to help! One of the most important things you can do to help is to stay in touch. Also, you can make yourself useful with the little things, or perhaps even take on the responsibility of spearheading a larger project. Mowing the lawn on a weekly basis may seem like a small thing to you; however, it is a huge thing that the patient now doesn't have to worry about. Driving a carpool also may not seem like "really helping out;" however, to the family it is one less issue that needs to be resolved.
Other ideas:
Make dinner
Offer to come over and do laundry weekly or clean the house
Do weekly grocery shopping
Offer to do Christmas or other holiday shopping
Make dinner again!
Making yourself available for whatever the patient or family needs is one of the greatest gifts you can offer. The support that a non-family member can offer simply by being there is a genuine gift. Remember it can be a long road ~ often times people rally in the beginning, but the support tends to fizzle out down the bumpy road. If you can stay connected for the entire course of treatment and recovery you will be a lifelong friend.
I am a teacher, and a student in my class was just diagnosed with leukemia - what can I do to help?
The first and most important thing is to educate your class and the parents about the disease, emphasizing that it is not contagious or hereditary. Invite the school nurse or even the student's chemotherapy nurse to come talk to the rest of the class.
You must also prepare your class for the temporary differences in appearance of the returning student associated with the treatment – loss of hair, increase of weight.
Some special rules may be necessary for the returning student, for example, allowing him or her to wear a hat in class and giving him or her the option of participating in gym class or not.
Antibacterial wipes should be used to clean desk surfaces, door knobs, etc. as well as all toys, books, games, or other items passed around. The importance of this precaution should be explained to the class in order to decrease the germ passing as much as possible. Personal hygiene may be stressed, again to minimize the germ spreading.
When the student is first diagnosed, having the class make cards is a welcome treat for the child. The child wants nothing more than to be "normal;" he or she doesn't want to be forgotten about just for being absent from school. Incorporate card making into a part of daily activities so the child will get them on a continuous basis for a few weeks. That is a great way to let him or her know (s)he was often thought about by friends.
Do I qualify for your financial assistance program? There are three criteria to qualify for our program:
Residence in Illinois or within a 100 mile radius of Chicago.
Diagnosis of leukemia, lymphoma, or a myelodysplastic syndrome.
Income level at within our guidelines.
What are your income guidelines for financial assistance? We do not publish our income guidelines, but we strongly encourage you to apply because they are above many financial aid programs. We recognize that these diagnoses and the associated expenses can cause financial distress for anyone, even two income families with good insurance.
What kinds of expenses do you reimburse? Treatment-related travel, parking, and hotel for the patient (and one adult if the patient is a child), COBRA premiums, bone marrow donor search expenses, co-pays or deductibles for prescriptions, lab tests, hospital and physician bills, etc. Basically, any expense related to your treatment that you would otherwise pay out-of-pocket is likely to be reimbursed. If you are accepted into the program, we will send you a brochure that goes into detail on this topic.
If I am approved, from how far back can I submit expenses? If you are approved, the program will cover expenses dating back 90 days prior to the receipt date of your application.
