ChloeWatts.com

Sunday June 15th, 2008

Chloe was looking a lot better up until about midnight. She was unable to keep any of the food down that was tubed into her. This just took the wind out of her sails… what little there was to begin with.

Today she is very discouraged. They had to put a second tube in her which upset her immensely. However, this one will deliver the food directly to her small intestines with hopes that it will be absorbed there.

The goal for today now is to get into a chair at least. We wanted to walk her but that might not happen.

Dr. Dorsen came by to see her and was very pleased with how well she is doing medically. The surgery is healing nicely. It’s always great news when there is some good news. He said test results on the tumor will be Tuesday at the very earliest. He is still optimistic, as we are.

An interesting thing happened yesterday that I forgot to tell you. Her anesthesiologist for her MRI yesterday turned out to the be father of one of her classmates and good friends. I’ll get his name on here eventually. Update: His Name is Peter Scott.

Today was way too busy for Chloe. She was asked to sit up, move around in bed and many other things she wasn’t too happy to do. She is very weak and when she speaks to you it is merely a whisper. Although the surgery went well the recovery has been very hard on her.

A second line was placed into her small intestines to try and get some nutrition into her little body. She is being fed through the NG tube in her nose.

When asked to move around so the nurses can get to her lines she is very helpful although very slow.

She went through a big battle of pain around 8 P.M. and they have since put her on a slow drip of pain meds. She was to have a abdominal x-ray at 10 P.M. and a CT scan of her head in the morning.

Dana, Aunt Sandy and Ron will be spending the night tonight as Chloe had such a rough time of it after midnight last night.

Pray for Benign on this tumor. That will help things a lot even though the part of the tumor that remains is in the worst spot it could be. It is the area of the brain that controls appetite, nausea, and some motor functions. We need that to go away! We will not know our course of action for awhile yet.

Chloe is a long way from being well. Please don’t confuse “good days” with cured. This road is long and it’s still plenty dark at the end. We are all out there with search lights trying to light the way to the day we can say we made it.

Saturday June 14th, 2008

Another MRI was done to make sure things were healing well and that all passages that needed to be open were in fact open. The area they were concerned about looks very good. The surgery did its job well. They were able to see that the channels that let the spinal fluid circulate through are wide open so neurologically speaking she is in good shape.

Chloe is starting to move around a bit more and her color is really coming back. She is being tube fed to get some nutrition into her little body. Tomorrow we hope to get her on her feet for the first time since the surgery. That will be a milestone.

She did have a very bad night last night however. She is so frail that everything hurts, a lot. She hasn’t had any nutrition so they have had to put an NG tube in her to get something into her stomach. She wasn’t able to keep water down last night.

The condition is less serious for the recovery from the surgery as it is for the nutrition right now so that is a big focus. She is still in the PICU and will be through the weekend for sure. Maybe she will be back on the regular floor Monday but we don’t know.

She has received many well wishes, cards, flowers, stuffed animals and, best of all, Prayers. Keep those coming. The animals and flowers… might want to back off a little for a while. The rooms are pretty small.

Friday June 13th, 2008 (A Good Day)

Friday morning we wheeled Chloe down to the operating room and said goodbye. She was brave but scared at the same time. She was full of the normal Chloe energy we all love. It was a hard goodbye.

Friday about 11 A.M. we received the wonderful news that the tumor had no siblings, it was a solo act. No others were seen on the spine! YEA!

Friday about 12 P.M. Chloe went to recovery and soon after was transported to PICU. She looked very pale and completely worn out. She knew we were there but that’s about all.

Dr. Dorsen met with us all and assured us that the surgery went very well. He felt he got about 80%!!!! Of the tumor. That was as much as he could Safely get. Of course, that means 20% is still attached to the brain stem, the most critical part. He also ruled out the possibility that the tumor was a fast growing, very aggressive kind. In fact, he went so far as to say it might just be a very rare kind of tumor that is “mostly benign.”

If that is the case we may be able to get the rest of it with radiation alone. This would be so much easier on Chloe.

Dana has been with her every night and day. Ron has been with her most of the time. Dave has been there whenever he can get time away from work. And Ramona has been there at critical times as well. We have worked well as a team, which has made things much better for Chloe.

Thursday June 12th, 2008 (A Bad Day)

The MRI went well, although the anesthesia really hurt Chloe through the IV in her arm. She was in to the MRI about 11 A.M. At 2:25 P.M. a team of nurses, counselors and doctors showed up in her room to consult with us about the MRI. We knew it was bad. Luckily the conference phone to the head doctor would not work in the room. We were herded down to a conference room. Again the speakerphone would not work and Dana just grabbed the phone or she was going to jump out of her skin.

What she heard made her fall apart. The doctor told her that Chloe had a marble sized tumor on her brain stem. This conversation went on for a couple minutes and then the room doctors took over. The tumor was attached to the brain stem and was said to be inoperable.

The neurosurgeon, Dr. Dorsen, and head oncologist, Dr. Norwood, conferred and the decision was that it needed a biopsy with the hopes of getting as much of the tumor as safely possible. “If we can get enough of it we have a chance of curing her.” This was the best sentence of the entire day!

At about 5 P.M. we got the word that Dr. Dorsen had the operating room set up for 7 A.M. the next morning. A decision had to be made with no time remaining.

Dr. Norwood wanted an immediate MRI to make sure no other tumors were down her spine. That was set up and done at 9 P.M.

Wednesday June 11th, 2008

The eating disorder doctor wanted one more test to rule out anything that was very unlikely. Less than .001% that the MRI scheduled would show any problems. The test was scheduled for the next morning.

Tuesday, June 10th, 2008

Neither test or the blood tests showed anything way out of range. She had problems with acid reflux but that was the extent of it. More and more it was looking like an eating disorder.

Monday, June 9th, 2008

Chloe was admitted to Emanuel Hospital with what was described as a failure to thrive. Simply put, she is nine years old with the body of a six year old. Chloe often had times of vomiting that escalated to get us to this point. Her doctor (Dr. Fridge) decided to do an upper GI series and a Barium X-ray to see if there was an internal problem.

Wednesday June 4th, 2008

Chloe had several tests today including a Barium X-Ray but enjoyed telling two male X-Ray technicians that she would drink more Barium if they would ride the pretty little pony around the lab. They both rode the pony!

Monday June 2nd, 2008

Chloe saw a Gastroenterologist today named Dr. Fridge. She is moving mountains to diagnose Chloe’s condition and help her, scheduling x-rays for Wednesday.