To raise awareness about childhood leukemia, we are sharing some surprising facts and things about this disease.
My son was diagnosed in July of 2021 with Acute Lymphoblastic Leukemia. You can read more about his cancer story and how it changed out lives.
What surprised us about Leukemia & treatment
1. You can be allergic to some of the chemotherapy drugs.
It never dawned on me that this could be a possibility, but it was.
We found out after a very scary anaphylactic reaction to Pegasparaginase. It's actually one of the most common ones to have allergic reactions too, so they watch kids very closely.
2.There are lots of different types of leukemia.
The most common is Acute Lymphoblastic Leukemia or ALL for short.
3. Your gender can affect your prognosis and how long your treatment will last.
If you are a boy, you will have a longer treatment because leukemia cells like to hide in the testicles.
4. You won't always need a bone marrow transplant.
This will depend on the type of leukemia you have, but you don't always need one.
5. Treatment can cause terrible leg pain.
Vinchristine is a tough chemo, and my son had very bad neuropathy in his legs.
What helped was physical therapy, and soaking his legs in warm water when it was bad. We also had to use a strong pain medicine in the beginning when he was getting Vinchrstine more often.
6. You have to take fevers seriously.
100.3 or higher and we would usually end up in the ER.
7. You can't go to dentist appointments.
This is because you are prone to infections and your mouth is especially prone.
8. You have to stop taking vaccines.
Some vaccines will react badly with chemo medicine, so your child will have to stop getting them.
The only exception for my son was the Flu shot.
This also means you have to be extremely careful to not be around anyone who is not vaccinated.
9. Your child can't take Tylenol.
While tylenol is great for aches and pains for other kids, your oncologist will tell you not to use this at all.
10. Your child's tastebuds will change.
Some foods he once loved, might become disgusting. As you go through treatment, this will change and adapt.
11. Steroids will make your child eat a lot and get very angry at times.
Give him/her grace during this time, it will go away as soon as he's done taking them.
12. Your child will have a lot of spinal taps.
My son would get a lot of spinal taps because they would test to make sure there was no leukemia in his CSF (spinal fluid).
They would also preventatively give him methotrexate (chemo) in his spinal fluid.
13. Your child's age at diagnosis will also affect their prognosis.
Luckily my son was 3 at the time of his diagnosis so he was standard risk and had a good prognosis.
14. Leukemia has a high relapse rate.
This is why chemotherapy treatment lasts a long time.
15. Your child will need blood and platelet transfusions.
For my son, he only needed them when he was first diagnosed, and during induction.
16. Certain chemotherapy medicines can make your child more prone to sunburns.
You will need to take extra precaution about wearing hats and sunscreen to avoid getting sunburn.
17. There can be a lot of long-term side effects.
Depending on the treatment your child receives, there can be a lot of long term side effects including the possibility of ADHD, heart problems, and fertility problems.
How you can help
One of the best ways you can help is donating to the Leukemia & Lymphoma society.
They help families and patients battling leukemia and lymphoma.
Another way you can help is to donate blood and/or platelets. Blood cancer patients need many transfusions over the course of treatment. The Red Cross is always needing more!
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