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Tuesday, July 3, 2007 - 7:43am

We will enter more detail on the first chemo treatment later, but the bottom line is it went fairly well. One in the books, 36 more to go. It is too early to tell if (and to what extent) possible side effects will hit her, but today she is happy and energetic just like she always is. She actually went to school this morning to stay as long as she appears to be feeling well. We anticipate a strong possibility that another couple days or at least another treatment or two will bring on more side effects as the chemo drugs build up in her body. But so far so good.

For all of you reading this journal, we wanted to note the addition of a very important web site link to the "links" area of Hailey's site. www.fightjpa.org is an impressive organization put together by family and friends of kids who have the same class of tumor Hailey has, with advisory support and assistance from some key doctors and medical people in this arena. PLEASE CHECK IT OUT. Historically, Hailey's type of tumor (referred to as "JPA") has lagged behind advancements in other childrens? cancers due to lack of funding. As a result, many new drugs have not been tested on JPA, and clinical studies have been stalled. This is especially disconcerting now that we know that current research investigators are poised to make progress if funding were available. We realize this is the case with many diseases that exsist today, so if you already give time or money to a certain cause we in no way want to divert you from that mission. We present this site in case you are looking to contribute in one way or another to something that has hit close to home for us and the many of you who know us. Please be assured, however, that we first and foremost will continue to appreciate and feed off of your thoughts and prayers and be completely thankful for the support we have received. This is certainly not a fundraising campaign, just wanted you all to be aware of another way to educate yourselves and to help the cause if you so choose.

www.fightJPA.org actually brings us nicely to another subject we need to touch on. We want to say thank you to Aunt Susie for setting up the account at Community First Credit Union for people who feel the need to do something and want to dontate. We are admittedly a little uncomfortable with this, but mostly completely blown away and humbled by the continued care and kindness of the people around us. It is an amazing gesture and we appreciate people's need to help. Here is where the www.fightjpa.org site comes in...if donations are made to the account, we will certainly use the funds as needed to help offset the costs of this new life we have, but we will also be trying to funnel as much of the money as possible to the www.fightJPA.org fund raising efforts. So if you are someone who feels the need to donate, please feel free to give directly to the account set up at Community First Credit Union (information is in the guest book posting from aunt sue) OR to www.fightJPA.org if that is what you prefer. Again, no matter what, we thank you all for your thoughts, prayers, and support so far. We are blessed.

More detail on the first chemo session later...

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...