Johnny and Kiera are brother and sister. Johnny is 6 and Kiera is 8. They also have a new baby brother. They love playing and spending time together, and as many brothers and sisters do, they love annoying each other. When Johnny was in the hospital for several weeks because he needed a bone marrow transplant Kiera said, “I missed playing with Johnny, I missed annoying him. That’s part of the big sister’s job. When he was away I didn’t have my buddy around.” You can tell from this statement that when someone is ill and needs to stay in the hospital to get better it doesn’t just affect the ill child. His or her whole family must adjust to the changes. This month we spoke to Kiera about her experience being away from her brother so long and to Johnny about his stay in the hospital.
Johnny had Leukemia and the doctors thought it would be best for him to receive a bone marrow transplant. Bone marrow is found inside the bone and it makes blood cells. The transplant is done to replace damaged bone marrow cells with new ones. The new cells can come from a couple of places, including using the patient’s own, a family member’s or anonymous donor. Before the transplant is done the patient usually receives chemotherapy or radiation to rid the damaged bone marrow cells. Then the patient receives new cells through tubes in their veins. The procedure doesn’t hurt much. However, after it is done the patient must stay in the hospital for many weeks to be sure the new bone marrow cells are working. The patient may also be put in isolation so that he/she doesn’t catch germs from others, but a mom or dad can stay with them so they are not alone. Sometimes patients have side effects from the large doses of chemotherapy. Once the patient’s blood counts rise, the side effects will decrease. Once the doctors determine the patient is healthy enough to leave the hospital he/she can return home, though they need to still be careful to not catch any germs. This may sound like a lot but it is important to remember that a bone marrow transplant is done to help a patient feel better.
And, now, introducing Kiera and Johnny (interviewed by Sibling Specialist Jane Bishow-Semevolos)!
What happens when you have to get a bone marrow transplant?
Johnny: You get the new bone marrow and have to stay in the hospital for a long time. You get lots of shots and you have to get your blood pressure done every day. They even get you up at night to do it.
How come you have to stay in the hospital so long?
Johnny: The doctors want to be sure you stay healthy. You have new bone marrow and it can’t be around sick people or you get sick too.
What did you do in the hospital?
Johnny: I played games with my mommy. She was there all the time. It was also Christmas time so there were a lot of presents. I didn’t like the food though, I only ate the cereal.
(Johnny also told me about his side effects. These are things that sometimes happen to a patient after they take medicine. There are many types of side effects but some people have them and some people do not. Johnny had mouth sores; this causes the throat and mouth to feel sore and make it difficult to eat, drink and swallow.)
What happened when you had mouth sores?
Johnny: I couldn’t eat anything cause it hurt my mouth. They put a tube in my nose and I would get food through it. It wasn’t too bad. Now I’m all better and getting used to eating real food again.
(Kiera is Johnny’s big sister. They also have a new baby brother. Although he is super cute he, isn’t able to play too much. So when Johnny was gone in the hospital, Kiera was home with her baby brother and her Dad. I asked Kiera about what it was like for her when her brother was in the hospital.)
What was different when your brother was in the hospital?
Kiera: It was upsetting and weird. He’s my buddy and we would play all the time. I missed him. And Mom was in the hospital with him, so I didn’t see her much either. But my Dad was home taking care of me and he is a fun guy. And it was Christmas time. But we got to have 4 Christmases(!), because we celebrated at different places, with different people. It wasn’t the same as other Christmases but we made it work! We also face-timed a lot. It wasn’t the same but it was better to see him.
(Johnny was in the hospital for several weeks after his bone marrow transplant. He was ok’d to go home after his blood counts were high enough which show that the new bone marrow is doing its job.)
What do you have to do after you return home from a bone marrow transplant?
Kiera: Since I don’t want Johnny to get sick and go back to the hospital, I have to do certain things. I wash my hands SOOOOO much! I also can’t have friends over. We don’t want to spread germs. He has to stay out of public places. When we order pizza they can’t cut it at the pizza place. They deliver it and we cut it ourselves because we want to be sure no germs are on the pizza cutter.
Johnny: Oh and no slurpees. Not for 100 days. That’s when I can go out more and have slurpees.
(Many doctors have different opinions on how long patients should stay away from people other than their family. Some kids go back to school, some stay home for several more months. Johnny’s doctors told him he had to wait 100 days after his transplant before doing more things in public places.)
What advice to you have for other kids who are going to have a bone marrow transplant and their siblings?
Kiera: Keep calm and hug your Mom! And your Dad! Keep calm and hug your parents!
Johnny: When you go to the hospital bring games, an ipad, and don’t forget the charger. Stuffed animals, at least 10. And the people at the hospital may give you stuff, like toys and activities to do.
Kiera: Don’t blame your parents, or anyone or yourself. It’s not life’s fault. It just happens. Being in the hospital is hard for everyone. But they are trying to help your brother and make him better.
How did you make it through this tough time?
Johnny: Now that I am out of the hospital, I am really happy to be home. It is a long time when you are there but when you are out it is so good.
Kiera: Sibling! Try to keep busy. Do your job, appreciate school, and see your friends. Talk to your family about your feelings. And spend time with uncles and aunts.
We want to thank Kiera and Johnny for sharing their experiences. Sometimes in life we have to do scary things, like get a bone marrow transplant or see your brother stay in the hospital for a long time. It is a hard time for many people. Many things change. But when you make the best out of a situation and try to find some happy moments the scary times pass by and good times return again. Check back next month to meet our next Friends of Karen Sibling(s) of the Month.