Medical supplies:

1. We purchased a new tackle box that shaped more like a case with a clear plastic lid. All the little compartments were perfect for syringes used for line flushes, broviac tips, tape, Badadine pads, Children’s Tylenol, gauze, band aids, etc… We kept it in our car and it came in very handy.

2. We designated a drawer in our kitchen for medical supplies and bought drawer dividers and stocked it with the same supplies listed above. It made it easier to see what needed to be reordered and to find what was needed in a hurry.

Office visits:

1. Make the visit as fun as possible for your child and you. If eating was allowed, we’d stop at Bread Co. first and get Andrew’s favorite bagel slices and juice. I’d also bring a bagel for the medical staff too.

2. I’d bring a little, wrapped gift for Andrew to use as an incentive if needed.

3. Bring a new movie your child has never seen. The county library is a great resource.

4. Bring something to amuse yourself—i.e. new magazine, knitting, rosary, book or bible to read, etc…You may not get the chance to do it, but if the chemo makes your child sleepy, then you can do something for yourself while he naps. Try to make it something that will be uplifting to you.

5. If you know that you’re going to be there for several hours or all day getting chemo, ask a fun friend or relative to meet you there for part of the time. It will help pass the time. Your child will be thrilled to see a familiar face too.

6. Make friends with other parents. After all, they know better than anyone else how you feel and what you are going through. Don’t pay too much attention to anything negative a parent may say as your child will do great. Just keep that thought. Some of my dearest friends today are the parents who shared the BMT unit with my family.

7. Don’t be afraid to have your child wear a mask to the visit. He can take it off once he gets to his doctor’s office. I’d make my son wear a mask as we walked through the hospital to get his oncologist’s office, especially during winter flu months. Decorate it with stickers on the outside if that will coax your child to wear it. I would wear a mask too so Andrew didn’t feel like he was the different one. I’d also have him wear rubber gloves if he wanted to push the elevator buttons.

Hospital Visits, planned and unexpected:

1. I kept a notebook and each day wrote down his vitals, especially his temperature. This helped my husband and I track our son’s condition. If a doctor wanted our opinion on how Andrew’s day was going, we had a clear picture to communicate. For anyone who has endured a prolonged stay in a hospital, you know how time seems to run together and our notebook gave us a clear direction on how things were going. Most importantly, you have a record of how long your child has been fever free which every leukemia patient knows can get your child home as soon as possible.

2. If a nurse or nurse’s aide took his temperature and it seemed higher than what he felt like, I’d ask her to retake it. Or I’d place a new temp-a-dot under his arm while she was standing there to ensure what the true temp was. Sometimes it was much lower and that could mean going home sooner. Sometimes people get busy taking other vitals, changing beddings, etc…and leave the tem-a-dot under the arm too long.

3. I always made sure that everyone washed their hands as soon as they came in the room regardless of who they were. Most hospital workers wash their hands like it’s second nature to them, but sometimes one would forget (hey, were all human). I’d nicely remind them or say “his counts are low, please wash your hands.” Remember, it’s your child and you have the privilege and right to direct how’s he cared for.

4. Don’t be afraid to speak up! Parents are the child’s best advocates. Most oncologists want to answer the parents’ questions and welcome the questions. It helps them to know that you understand the treatment plan. It is an important partnership to protect the welfare of your child.