Where Should You Start if you are Diagnosed with Leukemia?

These are our thoughts of things to think about when diagnosed with leukemia, although many of these would apply to any serious illness:

1. Visit the Newly Diagnosed section of the Leukemia and Lymphoma Society website: http://www.leukemia-lymphoma.org/all_page?item_id=4221 They have checklists and information aimed at helping people in your shoes.

2. Find an oncologist who really listens to you and explains things to you in English. Then make sure you like his nurse, because you spend a lot of time with the oncology nurses!

3. Likely treatment that you would go on for leukemia are Hydrea (Hydroxurea) and Gleevec (for CML) or Induction Therapy (Cytarabine or Ara-C) (for AML or ALL). Tyler's been through both, so we can answer any questions you have about our experiences on those medications.

4. Take your medications carefully. Our doctors say that about 50% of people don't take the medication as prescribed, but it can make a big difference in the state of your disease.

5. Avoid any sports with a risk for contact until the doctor tells you your spleen is normal

6. Stay healthy otherwise - diet, exercise, adequate sleep.

7. Have someone other than each other that you can talk to. Sometimes it is easier to share your fears and frustrations with someone other than your partner.

8. Let family and friends support you. It takes a bunch of weight of your shoulders AND theirs! In fact, it sometimes is good to have a mental list of the things that others can do because many will ask and want to help in any way they can.

9. Remember that some people out there might be uncomfortable hearing about your illness. It's nothing personal; it's just that they have their own issues.

10. We recommend a blog as a central way to communicate to those who want to know what is going on. Ours has been an incredible blessing to us and our loved ones both. If you don't want a blog, you might look itno CaringBridge sites.

11. Go together to all of the doctor appointments. Two pairs of ears hear better than one pair.

12. Apply for FMLA at both jobs, so that you can go to doctor's appointments without risking your job in any way.

13. Resolve any non-mortgage debt you have as quickly as you can, so that you don't have any extra financial worries as you fight your illness.

14. Take the drugs if getting a bone marrow aspiration or biopsy. Tyler had 2 bone marrow aspirations before he started getting conscious sedation and he still remembers how much they can hurt.

15. Have hope that your treatment will work. Oftentimes our minds can will our bodies to work or not, based on our mood.

16. Cry over the disappointments for a day and then get up and fight again.

17. Live every moment and celebrate every day together!


We know that many others have faced similar challenges and welcome you to add your own comments about your first steps for dealing with a diagnosis like this.