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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 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!

Thursday, July 12, 2007 - 8:08pm

Hailey continues to handle her chemo treatments well. No apparent side effects yet! She had a very fun and normal day again today.

Our biggest concern is still her weight (or lack of). She seems to be eating a little bit better and taking a little more pediasure again, but she still looks alarmingly skinny and is still hanging around the critical weight category. We attempted to start her on the appetite stimulant tonight. We forced it in her orally with a syringe (just like we have to do with ANY medicine she needs...it is a battle!). About 30 seconds later she threw up on our living room floor, on grandma peg, on me, and then on our kitchen floor just for good measure. I can't even begin to explain the devastation we feel when something like this happens. She had eaten a great dinner tonight and we were feeling good about her having a stomach full of high calorie, high impact food...and then it all ended up coming back out. We were crushed. Fortunately she did drink about 6 ounces of pediasure with duocal mixed in just before bedtime, but sometimes we feel like we just can't catch a break (at least a sustained one).

Anyway, all is quiet in the Meltz house for now. I am going to sign off for the night and then spend the next couple hours catching up on business and doing more tumor related research. Probably will settle into bed about 10:30 or 11:00, watch 15 or so minutes of some mindless TV to unwind (my preference is usually something on MTV or VH1) and then fall into a deep sleep until Hailey wakes up at about 5:00 a.m. tomorrow morning. At that point Shannon and I will wait to see which one of us makes the first move. I will try to be a good husband and take the turn tomorrow, the whole time wishing desperately that I could somehow go back to sleep for even 20 more minutes. Most of you parents know exactly what I am talking about. The fog will hopefully lift sometime shortly after a workout and/or shower....and then we start the routine all over again. Love it!

Brian

P.S. By the way, Shannon and I had a long conversation today with Andrew Janower of fightJPA.org in Boston. We continue to be extremely impressed with the people involved in that effort. More to come in this area soon, but we are working on a plan to team with them in the fight for kinder, gentler treatments and a 100% cure of JPA. Stay tuned...

Friday, July 13, 2007 - 8:07pm

Hailey had another good day today. Still no noticeable signs of side effects from the chemo. She even went to school all day and had a great time according to her teachers. In fact, she didn't even want to leave when we came to pick her up. We tried not to be offended.

Her eating has been decent the last couple days as well. We'll see what that translates to on the weight scale. She still looks way too skinny to us. We've held off on another attempt at the appetite stimulant based on our experience the night before and the fact that she has eaten well the last two days. We're not sure whether we are going to start it up or not.

We'll be back in Madison on Tuesday for round 3! As of now...2 down, 35 more to go! Yikes, that's a lot of treatments. Since this regimen is spread out over 70 weeks, I was just thinking it will actually not be this upcoming Packer season, but another Packer season yet before she is done (if all goes as planned of course). That's a tough pill to swallow. I guess it will help that the Packers will likely have won two more superbowls by then. I know, keep dreaming.

Ok, I've just gotten my mind back to "one day at a time"...and on that note, it's time to sign off for the night. More to come after our next treatment, if not sooner.