My daughter, Layla, is 1 year old. From 7 or 8 months old, she was experiencing rashes on her tongue. They said it looked like thrush, but it kept getting worse, so we knew it was something more severe than that.
She developed an ulcer on the right side of her tongue that started changing colors; it was black and purple, it would puss and bleed, so they sent her to a specialist in Rochester. The doctor determined it was something called hemangioma, or a tumor in the tongue, which would have to be surgically removed. They reconstructed the tongue and shaved it down to try to fit in her mouth. Basically, it was a birth defect, so they didn’t know if it would take months or years to grow back.
While she was recovering, we had to stay a few days at the Ronald McDonald House Within the Hospital. Since the tongue swelled so much, they had to keep her on a ventilator so she could breathe because her tongue was blocking her airway.
We live over an hour away in Bath, so it was really convenient that we could be somewhere right above her. The people who worked there were very nice and helpful—they gave us a lot of information. They were great at catering to our needs. We didn’t have to eat a lot of the hospital food.
I didn’t really know what RMHC was until we stayed there. Since our experience, I have described Ronald McDonald House to quite a few people. It means a lot to our family. We were going through a hard situation and I didn’t know we would have to stay at the hospital that long. We had brought a couple of things, but then when I found out we were able to wash our clothes, get ourselves together—I felt it was just very comfortable and very convenient.
We may be back to RMHC again. We find out in January when her next procedure is, so she’ll be back at the hospital again. We are very grateful for being able to get into the Ronald McDonald House.