When Garrett got sick, I used up all of my vacation. At that time, our head of Human Resources called me in and informed me that I now had to take unpaid leave if I wanted to stay out of the office any longer. He then added that in order to continue my benefits, I had to pay “my share” of all benefits costs during this leave. This included insurance, retirement, and other contributions. The weekly outlay was not insignificant. I was dismayed to say the least.

Fortunately, our senior management and common sense prevailed. We came to an informal arrangement where I “made up” lost time by working weekends and extended days when Garrett was home and doing okay. When he was inpatient (most of the first year and the first 3 months of the second), I would stay with him in the hospital on the weekends (Friday night through Sunday evening) and on Tuesday night and all day Wednesday. This would give my wife a break from the hospital and let me spend time with my son.

It worked very well. Pam later calculated that I worked more hours in make-up than I missed for Garrett. The company came out ahead. Every situation is different and every solution will be different in these circumstances. There is only one constant: You will never ever regret the precious time you spent with your child.

My husband and I shared decision-making by keeping a joint medical journal. The days that my husband stayed at the hospital, he would write down all medicines given, side effects, fever, vital signs, food consumed, sleep patterns, and any questions that needed to be asked at the next rounds. This way, I knew exactly what had been happening. Decisions were made as we traded shifts at our son’s bedside.

I made most of the medical decisions. My husband did not know what a protocol was, nor did he ever learn the names of the medicines. He came with me to medical conferences, however, and his presence gave me strength.

Curt and I discuss every detail of the medical issues. It is so helpful to hash things over together to get a clearer idea of what our main concerns are.

We took turns going in with our son for painful procedures. The doctors loved to see my husband come in because he’s a friendly, easygoing person who never asked them any medical questions. We shared hospital duty, also. I would be there during any crisis because I was the person better able to be a strong advocate, but he went when our son was feeling better and needed entertaining company. It worked out well.

My husband fell apart emotionally when our daughter was diagnosed, and he never really recovered. He stayed with her once in the hospital and cried almost the whole time. She never wanted him there again, so I did all of the hospital duty.

Whenever Brian was in the hospital, we both wanted to be there. We were able to be there most of the time because our children have a wonderful aunt and uncle who stayed with them when needed. During Brian’s second extended stay in the hospital, we both let go a little, and we each took turns sleeping at the Ronald McDonald House. That way we each got a decent night’s sleep (or some sleep) every other night.

My wife took care of most of the medical information gathering because she had a scientific background. But my work schedule was more flexible, so I took my son for almost all of his treatments and hospitalizations. I cherish my memories of those long hours in the car and waiting room.

My husband does about 75 percent of the hospital/clinic/radiation visits. In fact, he does all of them when he is in town. I take care of the rest of the children and float in when I get a chance. I keep in touch with the doctors via email.

We had a traditional relationship in which I took care of the kids and he worked. I didn’t expect him to cook or clean when I was staying at the hospital—it was all he could do to ferry our daughter to her various activities and go to work.

We both worked full time, so we staggered our shifts. He worked 7 to 3 during the day; I worked 3 to 11 at night. He did every single dressing change for the Hickman® catheter—584 changes, we counted them up. Wherever I left off during the day, he took over. He was great, and it really worked out well for us. We shared it all.

My husband really didn’t help at all. I couldn’t even go out because he wouldn’t give the pills. He kept saying that he was afraid he would make a mistake.

We both coped differently, but we learned to work around it. I didn’t want to deal with “what if” questions, but he was a pessimist and constantly asked the fellow questions about things that might happen. I felt that it was a waste of energy to worry about things that might never happen. I didn’t want to hear it and felt that it just added to my burden. It was all I could do to survive every day. We worked it out by going to conferences together, but I would ask my questions and then leave. He stayed behind to ask all of his questions.

My husband didn’t have the desire to read as much as I did. However, whenever I read something that I felt he should read, he always took the time to do so and then we discussed it.

My husband and I have always been a team. We complement the strengths and weaknesses of each other and I think that was the reason we managed to hold everything together. When I was down, he would bring me up. When he was down, I would do the same for him. With the exception of the initial trauma when our son was diagnosed, we handled things in that manner throughout treatment.

I went for counseling because I couldn’t sleep. At night, I got stuck thinking the same things over and over and worrying. I ended up spending 2 years on antidepressants, which I think really saved my life. They helped me sleep and kept me on an even keel. I’m off them now, my son is off treatment, and everything is looking up.

My husband and I went to counseling to try to work out a way to split up the child rearing and household duties because I was overwhelmed and resenting it. I guess it helped a little bit, but the best thing that came out of it was that I kept seeing the counselor by myself. My son wanted to go to a “feelings doctor,” too. I received a lot of very helpful, practical advice on the many behavior problems my son developed. And my son had an objective, safe person to talk things over with.

My husband had a lot of problems that really brought my daughter and me down. The cancer really opened my eyes to what was important in life. We stayed together through treatment, but we divorced after the transplant. I just realized that life is too short to spend it in a bad relationship.

My husband went to work rather than go with us to Children’s when our son was diagnosed. It went downhill from there. He started using drugs and mistreating us, so we divorced.

My son has been treated off and on for 10 years for a brainstem tumor. He is now paralyzed and on a respirator in a care facility. In the beginning, my ex-husband was overseas, so my husband and I made all the appointments, took turns in the hospital, and tucked Brendon in at night. Over the years, my ex-husband has become more and more a part of our family care network. He goes to the care facility every day after work and on weekends. I stay with Brendon the days my husband has off, and my husband stays two evenings a week. My ex-husband will babysit my three other children so my husband and I can go to see Brendon or go on vacation. His mother also helps out enormously with visiting at the care facility and babysitting the three younger children. It’s become a community effort. It works out well because we all love our son and we’ve chosen to work it out rather than bicker.