More Back Story

This is a continuation from my post on 8/31/09 about how this all started.

We were grateful to hear that Jael's tumor was in a good spot and the doctor felt really certain that she could get it out without doing any damage to the brain. Since then I have researched alot and have read a lot of stories about children who have not been so forunate. We spent the next day with lots of hope that this was going to be an "easy" fix that would only require surgery. Our oncologist, Dr. Guisti, came to visit on that day (August 5) and told us that the tumor appeared to be benign and he was hopeful that only surgery would be required. Again...lots of hope. We were lucky.

The day of surgery was, of course, hard. It was hard sending my little girl down a hallway without us. Fortunately, they had her pretty sedated and handled us leaving very well. The surgeon even gave us a picture of her right before they put her out of her smiling really big while looking at a video screen of herself. She was so tickled to see herself on tv. The doctor told me later that Jael's was, by far, the best reaction to it that she has ever seen. :-) The four hours we waited was torture. But even worse was the first 5 minutes and then the first hour after we got to see her. She woke up mad and writhing. We were so scared she was going to hurt herself. It was so hard to see our baby in so much pain and so confused about what was going on. All she wanted was water. She just kept yelling, "I want water!" over and over again. They decided to give her what she wanted just to calm her down, but feared she would throw up. The girl drank like 3 cups in 10 minutes and kept it all down. All the nurses were shocked.

She came out of surgery with an IV in both hands and both feet, a catheter, and a tube in her head that measure the internal pressure. Fortunately, after that initial freaking out she really didn't want to get out of bed at all. By the next morning they were able to take out the catheter and I think both of the hand IVs.

We found out that day that the tumor did not look good. It was not encapsulated and it was bloody (sorry). That is more characteristic of a malignant tumor. I was devastated. We didn't have the final word yet, but I knew it was bad. The next day they confirmed that she had medulloblastoma.

Her recovery went great. Each day she got better and better. I remember on Saturday (two days after surgery) being so excited to see her lifting her head up off the bed to play with a toy. The toy was her beloved Candy Land game that her Nanny and Grandpa got her. It was not the board game, it has big pieces that you pull a lever to get them out of this house thing. Anyways, she loved it and played it alot for that first week.

On Tuesday they did a CT scan to see if it was possible to take the tube out of her head that measured the pressure. Good news! They took it out that day. That was so freeing. Each time she went to the bathroom was so scary. It took two people - one to pick her up and hold her on and one to hold the tube so that it didn't pull on her head. We had actually had that happen over the weekend. Her pressures kept going up and finally they did a CT scan to see what was going on. The tube had been pulled out a little bit. The had to push it back in a little bit and then put more stitches in her head to keep it in more securely. They gave her a cocktail that was amazing! She was so loopy. At one point she looked at me and said, "Whats your name?" And then started laughing. The doctors said that we should probably leave because she was going to be really upset...we didn't leave and she didn't notice the stitches going in. I wish I had that whole thing on video. It was the best.

Now that the tube was out of her head the only thing she needed to do to go home was walk. She kept telling me that she didn't walk anymore. A physical therapist came in to try to help, but she would not put her foot that had the IV in it on the ground. I called our nurse to ask them to please take that IV out. They insisted that she had to have an IV in and I had to make the hard decision to have them put a new IV in her hand. I just knew that we needed to go home and in order to do that she had to walk and in order for her to walk the IV had to be out of her foot.

After it was out I tried so hard to coax her out of bed, but she kept insisting that she didn't walk anymore. Erik was really patient and kept telling me to calm down and I was so mad at him. All I wanted to do was take my baby home and he wanted to be patient! Well turns out he had the right idea. Late in the afternoon that day he convinced our nurse to let us take Jael downstairs in a wheelchair to the really cool boat that they had in an outside play area at the hospital. She wanted to get out of her wheelchair and sit on a bench on the boat. We started talking to her about walking and she insisted that she didn't walk anymore. Then we started talking about swimming, running, playing with Millie...all the things that she would need to walk to be able to do. Then suddenly she got up on her own and stood up. I was thrilled. She walked all over that boat and on our floor that day and the next. She was really unsteady and needed lots of help, but she was walking!

We went home the next day (Wednesday)! After a day or two her walking was really improved and today you wouldn't really be able to tell she had brain surgery.

I think thats enough for now. If anyone has read this far I'm amazed.