Saturday, April 25, 2009

Another week has flown by already, and we were so busy.
Both Colby and Hannah are playing lacrosse this season, on two different teams now. Although Hannah was a bit resistant at first, once she gets out there, she does well and has a good time. It's a 3rd and 4th grade team, and she fits right in. It's amazing, although we can tell by the way she runs and her delayed reaction time, I bet no one else can tell that she had a brain tumor. It's great to see her out there.

Monday we went to the endocrinologist for Hannah's 6 month checkup. Among other things, they monitor 2 things for Hannah, her growth rate and her thyroid production. Both were compromised by the radiation she received to her head and spine. She is growing at about 1/2 the rate of a normal kid her age. Most of the growth is coming from her legs, and not her spine. That's not a surprise though, even proton radiation won't help with that and we knew that. They are still evaluating her growth through measurements and a bone age scan before they determine if any growth hormones are necessary. The problem with growth hormones for a brain tumor patient is that they can cause the tumor to come back. We want to avoid the hormones if possible. We know Hannah will be short, but we just want to be sure she isn't abnormally short so that other issues don't arise. She is also still complaining of foot pain. It's not as significant as previously, but we suspect her bone density may still be low. The doctor ordered another dexa scan to check her bone density (although it most likely won't show a big difference after only 6 months.) Her blood results will also show us her vitamin D levels.

I was supposed to have her blood drawn before the appointment, but I had forgotten since the last appointment 6 months ago. A blood draw is the only way they can monitor her thyroid production for sure, along with a clinical analysis of any symptoms (fatigue, early puberty, headaches, etc, etc.) I am finding that endocrinology is as complicated as oncology, if not more so. There are so many factors that go into it, and not everything is clear and straight forward. We really like our doctor, so we're trusting that he is monitoring her carefully.

Tuesday we headed in for her routine checkup to brain tumor clinic. She has gained weight since her last visit, and all looked good. We will begin to decrease her medicines in the next month, little by little since she has been doing well regarding the stomach pain and nausea. She has now graduated to 4 month MRI's instead of every 3 months, so her next one will be in June. She has requested that it not be on her birthday so I think I can arrange that. The doctor noticed her retainer, and asked when she will be getting braces. He wants to wait at least another 2 years, because the braces will interfere with the reading of the MRI's due to the original tumor location. They need to be able to view the scans for even the most minute changes or issues.

After her appointment, we headed over to have her blood drawn. She was a bit skeptical because we went to a new blood draw lab that we have never been to before. Out walks an older man, pretty unusual for a pediatric blood drawing lab. Hannah took one look at him and said "he doesn't know how to draw my blood." She started to get upset, so the nurse (Cool Ed he called himself) began to talk to her. As he tied the band around her arm, he took her finger and showed her how to feel the vein, to find a good one to draw from. She thought this was amazing, and calmed down right then and there. She still wasn't happy about the needle stick, but I have never had a nurse like this man calm her down so quickly. Can't judge a book by it's cover-isn't that the truth.

To round out our week, Colby had 5 teeth extracted by an oral surgeon on Thursday afternoon. We were told they would pull them, but some were impacted. He had to cut her gums in some places, and she has stitches in her mouth. I just wasn't prepared for it to be that involved, and neither was she. Four of the teeth were permanent teeth, and one baby tooth. She continued to bleed all night long. She was miserable. By Friday I was worried that she was dehydrated since she wouldn't eat or drink, or go to the bathroom. She was so weak that she couldn't walk by herself. She was close to a trip to the hospital for hydration, but we managed to get some fluids into her. She was still bleeding last night, but this morning seems to have turned the corner. She is eating small soft foods and drinking again and feels so much better. At one point, Colby was in the bathroom crying trying to get her medicine down, and Hannah was right behind us crying too. Hannah was a good nurse until she got frustrated because Colby was a bit grouchy, and she just threw the paper towels at her, then she was done with that job.

We're enjoying the nice weekend weather here, hope you are too!


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