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Thursday, June 28, 2007 - 9:15pm

Where to begin.... Hailey had her blood drawn and staples removed. She is such a trooper! She was more upset with getting weighed than anything. Her dilantin level was really low and since she hasn't had any seizures, Dr. Iskandar said that we could stop giving her the dilantin. Yahoo!

We had a good discussion today with Dr. Margo Hoover-Reagan, Hailey's oncologist. Luckily we brought Auntie Amy along so that we could actually have an uninterrupted conversation. We also brought Grandma Peg along for her medical knowledge, support, and exceptional note-taking skills!

The standard for treating Hailey's type of tumor consists of seven 10-week cycles of chemotherapy or 70 weeks. The first 10-week cycle involves having chemotherapy once a week for 7 weeks and then 3 weeks off. The subsequent six 10-week cycles involve chemotherapy for 5 weeks and then 5 weeks off. They routinely use two chemotherapy drugs called Vincristine and Carboplatin. Margo told us that these drugs are fairly mild chemotherapy drugs and hopefully Hailey will do fairly well on them. Common side effects include hair loss and nausea and vomiting. Her blood counts will be closely monitored for a decrease in her immune system and anemia. If Hailey's tumor responds to treatment, it is possible that she could actually start gaining weight after 3 months.

In addition, Hailey is eligible to participate in a clinical trial conducted by the University of Madison and Gunderson Lutheran Medical Center. In the clinical trial, Hailey would still undergo the standard chemotherapy regimen, however, they would add in a third drug called Temozolomide. Temozolomide is a fairly new drug that has shown promise in treating low-grade gliomas. However, this 3-drug combination has not yet been studied. This clinical trial started almost 4 years ago and there are currently 19 kids enrolled. Due to the slow-growing nature of this type of tumor, it will still take quite awhile to determine if there is any advantage to using the 3-drugs. Brian and I need to review the details of this clinical trial, but we are strongly considering it.

Either way, Hailey will begin her chemotherapy on Monday. GAME ON!

While all of this was going on, Faith spent a very fun day with Grandma Susie and Grandpa Pepper. She went to the Children's Museum, McDonalds for lunch, shopping for a new outfit, and then to the park. I think Grandma and Grandpa are going to sleep good tonight!

Wednesday, June 27, 2007 - 9:35pm

Another good day today. Hailey continues to improve. Tomorrow (Thursday) is the big day down at UW where she gets more blood work, gets her stitches and staples out, and we meet with the Oncologist to learn more about the treatment plan and answer all the questions we have about what awaits for Hailey and our family. Our appointment got moved back to 1:30, so it will likely be later tomorrow evening before we post any updates.

We are as ready as we can be.

Tuesday, June 26, 2007 - 2:58pm

Today has been a good day. Faith went back to day care. She was really excited about that. Brian spent the morning with Hailey and I went back to work for a half day. It was great to see all of my co-workers again and spend a little time thinking about something else. I'm very lucky to have all of them to lean on.

Hailey just went down for a nap. She was awake and playing for almost 3 hours. Since her attention span is about 5 minutes, we went through quite a few toys! We also went for a short buggy ride to visit a neighbor's house that has set-up a lemonade stand in her honor. Brian and I can't say enough how wonderful everyone has been. We feel so much love and support.

Tonight Aunt Amy and Uncle Joe are coming over for a visit. We are all looking forward to that. We are truly trying to live in the present and take one day at a time...

Monday, June 25, 2007 - 4:19pm

Aunt Krissy was over last night spending some time with us and the girls. She helped us get a decent amount of dinner in Hailey and then we all went outside to enjoy the dilly bars she brought us with the neighborhood kids. Feeling confident and energized by the dinner Hailey ate, daddy was dumb enough to offer a bite of his dilly bar to Hailey. She took one tiny taste and promptly threw up (good dinner and all) on our patio, on daddy, and on our lawn. What kid doesn't like ice cream! Needless to say we were fairly dejected by this considering the food we thought we had in her and our concern about her weight loss right now. Shannon did get her to drink about 5 oz of pediasure and calorie powder at 8:30 p.m. so that took a little of the anxiety away prior to our bed time.

Today Hailey seems to be doing a little better than yesterday. And yesterday was a little better than the day before, so hopefully we are trending in the right direction. She has eaten more today and seems to be a little more alert and "energetic" (not quite the right word compared to how she normally is). She has been up two different stretches of 2 hours today, and one time for 1 hour. She also ate a bowl of Easy Mac with extra calorie powder mixed in as well as a fair amount of cheese and cheetos (no, this is not our idea of a nutritious diet, but we take what we can get with her). The most important thing is we have also gotten about 10.5 oz of pediasure with calorie powder in her since midnight last night. We will hope for another 4-6 oz yet today. This combined with the food she will take is a good step towards putting some weight back on. We weighed her at the Dr. office today and she was down to 18lbs 14oz, a loss of about 1.5 pounds since pre-surgery. Not what we would wish for, but not quite as bad as we had feared.

The doctors continue to discuss her Dilantin levels (anti-seizure medication) to make sure she is handling the drug the right way. We will get more feedback on that later today. Signs seem to indicate that her body continues to adjust positively to it. We'll be happy when she is off that medication altogether.

Thursday continues to be a big day. We are ready to learn more.