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Tuesday, July 10, 2007 - 10:12pm

We can cross off another chemotherapy infusion! Our appointment was at 9:00am. This one went a little better than last week's. The nurse accessed Hailey's port in our room instead of the procedure room and Hailey sat on Brian's lap instead of laying her down on the examination table. She still cried pretty hard, but didn't throw-up. Yahoo!! After her labs were drawn, we had to wait for the results. All of her labs looked great, so then they ordered the chemotherapy from the pharmacy. They were quite busy today because we didn't start the infusion until 12:30pm. Once the infusion started, the only thing that kept Hailey happy was a wagon ride. I can't tell you how many laps around the 4th floor we took!

Brian and I also spoke with a dietician today. Hailey has lost more weight. She only weighs 18 pounds 8 ounces. She has been eating the foods she likes o.k., but has really decreased the amount of Pediasure she'll take. This is very concerning for us, not only because this is her main source of real nutrition, but we also add a medication called Miralax to it for constipation. The Vincristine can really slow down her G.I. system and she's at risk for bowel obstructions if she gets too constipated. There's always something...

Our plan is to try some other flavors of Pediasure and some other suppplement drinks. In addition, they may start Hailey on a medication to stimulate her appetite. We should hear back from her oncologist tomorrow on that. If she doesn't start to gain some weight in the next couple of weeks, we'll have to start tube feedings again. We discussed the possibility of having a j-tube placed rather than using an NG tube again. The j-tube is inserted into the jejunal; the first part of the small intestine. This would bypass her stomach and eliminate the risk of vomiting from her tube feedings. Medications can also be administered through the j-tube. We're not looking forward to any of this and hoping to avoid it, but we may not have a choice and will do what is necessary to keep her safe. If it happens, I guess one benefit is that it would reduce some of the stress we go through on a daily basis trying to ensure that Hailey is taking in enough calories and the devistation we feel when she throws-up.

So far, Hailey is really tolerating her chemotherapy well and hasn't displayed any side effects. We are hoping this trend continues, but understand that the effects of chemotherapy can be cumulative.

We are happy to be home once again. It's always hard to spend time in the hospital. We are surrounded by so many people going through their own tragedies and we can't help but feel sadness for them as well. We also miss Faith when we are gone. She is doing well by the way...besides thinking she is about 16 years old already. All and all, she's a lot of fun and we love her and Hailey more than words can explain.

Here's to good eating, no side effects, and shrinking that fu#%ing tumor!

Wednesday, July 4, 2007 - 6:34pm

Please read the posting from Tuesday, July 3rd at 7:43 a.m. It has been brough to our attention that many of you have not noticed this posting because another post was written later that day. It has very important information in it regarding hope for new treatments and possibly a cure.

Thank you!

Tuesday, July 3, 2007 - 10:38am

I actually spent quite a bit of time last night entering a journal entry only to lose everything when I tried to save it. Don?t you hate that when it happens! I just didn?t have the mental energy to start over last night.

Well, we survived another first; Hailey?s first chemotherapy infusion. Brian and I were quite anxious driving to Madison. We just didn?t know what to expect or how she would react. We arrived at 9:00am and didn?t leave until 3:00pm. A typical visit should last about 3 hours going forward. We decided to enroll Hailey in the clinical trial, so we had some paperwork to complete and extra testing.

The worst part of the whole day for Hailey was accessing her port. There really isn?t any pain involved in this because they put an anesthetic cream on her skin first. The process involves laying her down on a table and cleaning the port area for about a minute before poking through her skin with a small needle. Once this is done, blood can be drawn for labs and her IV tubing can be connected. However, she is getting too smart with all of this. The second we walked into the procedure room, she knew something was up. She started calling for Mommy and Daddy and we held her hands. She cried really hard, which led to coughing, which lead to vomiting. Unlucky for her, the whole cleaning process had to start over. After that, anytime the nurse came into our room, she started crying. I?m sure she?ll get used to all of this with time.

The chemotherapy took about an hour and then she had to stay hooked-up to her IV for another hour to monitor for allergic reactions. We did our best to keep her distracted. We watched the Baby Einstein World Animals DVD about 5 times. The monkeys are her favorite! We played with stickers, read books, walked the halls, and went in the playroom.

Before we left, our nurse gave Hailey a stuffed lion and 3 beads for her string. All of the kids with cancer receive a long string with beads on it that spells their name. Then, each time they have a procedure, or test, or chemotherapy, they earn special beads that signify how brave they are. It?s kind of like her badge of courage. We are so proud of her and we marvel at how resilient she is.

It was a long day in Madison and we were so grateful when our neighbor, Sylvia brought over dinner ? cheese enchiladas ? yummy! Our neighbors are taking great care of us and keeping us well fed!

Faith spent a fun day with Grandpa John. They went shopping and out to lunch. Grandpa bought Faith and Hailey each a rubber duck for the bathtub. They carried their ducks all around last night and even slept with them.

Our next trip to Madison will be Tuesday, July 10?th.

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...