24,020,575 Visits from family and friends!  

See Our Photos

Sort Newest First or Oldest First

Sign-up to be notified of updates of our journal

Tuesday, July 24, 2007 - 2:30pm

We had our first chemotherapy related setback today.

Each time we arrive for chemo, they draw blood from Hailey and immediately send it to the lab to check her blood cell counts. If any of her counts are too low, they will not do the chemo treatment that week. Today, for the first time, she had a low count. Her Absolute Neutrophil Counts (ANC) were well below normal range. Normal range is a number between 1,100-6,600. Hailey's number was less than 100. This is the blood cell area that fights off bacterial infection. She is not showing signs of being sick or anything other than her normal, happy self...we just need to be very careful with her at this point. Her immune system is now low and weak in this regard. It will be important to keep her away from potential for infection to the best of our ability until we see that number come back up. Lots of hand sanitizer, keep her away from large groups, no school, no camping trip this weekend, obviously no exposure to sick kids and sick people...just really watch what she does and keep her clean as possible. Nutrition also continues to be important and plenty of rest as well...all in the hope it will aid the recovery of those cells. By the way, we are moving forward with a feeding tube. The appointment to get the tube placed will be August 8th, if her counts come up to within the normal range by then. Otherwise the tube will not go in until the counts rebound.

So the plan is to skip treatment this week and go back next week hoping the counts have rebounded. If they have, we will resume the therapy at normal doses and start at this week's missed session (so we are one week behind our course of treatment at this point). If they have not rebounded, they will consider starting up anyway, but at a reduced dose of the carboplattin and the normal dose of vincristine.

We were told not to be too alarmed or upset by what happened today. They expect setbacks like this and the protocol is built in such a way to make adjustments for it when they do happen. We were also told that it is no more or less concerning than it happening at some point later in treatment (i.e. because it happened early does not necessarily mean she will have trouble throughout). The doctor just reminded us that this is a sign that the chemo is doing it's job at this point (killing rapidly dividing cells) and this can be viewed, at least from that perspective, as a "positive" sign. It is not an indication whether it is killing the rapidly dividing cells we need it to kill the most (the fu*%ing tumor), but it is a sign that the chemo is making it's way through her system and killing something....let's hope it's the tumor as well.

The good news is Hailey has shown no other noticeable signs of chemo related side effects to this point. She continues to live and play fairly normally.

We also just wanted to remind all of you that we are in the process of putting a fundraising plan together to raise money to funnel towards research for better treatments and a 100% cure. Very soon we WILL be enlisting as many of you who are willing and able to help in one way or another. Many of you have been asking what you can do and I would simply say this...wait, pray, support, and when the time comes where we call for action...act ferociously to help us kill this thing. Stay tuned....

Tuesday, July 17, 2007 - 8:14pm

Hailey's treatment went fine today. No throwing up, got out of there a little earlier...all in all it was a decent day. We are back home and so far she is doing well.

We are at a decision point as far as Hailey's weight. She is the same as last week (18lbs something)...far too low for her age. And her extreme pickiness continues. We struggled with her eating habits prior to chemo and being on chemo certainly does not make it any easier. Because of Hailey's tumor and where it is located, we cannot expect her to be breaking any records on the growth charts unless it shrinks, but she is simply too far below acceptable right now to wait much longer for a feeding tube. Shannon and I agreed today that we were going to officially start Hailey on the appetite stimulant drug tonight and if we do not see noticeable improvement in how much she is eating (and hopefully even a little bit in the variety of what she will eat), and at least a little improvement in her weight by Sunday, we are going forward with a feeding tube. First dose went in tonight without vomiting. She still fights it like there's no tomorrow, but she did not throw up. We need to give it to her orally with a syringe three times a day, so our strategy to hopefully prevent future vomiting is to give it to her on as empty of a stomach as possible each time (one when she wakes up, one before lunch, and one before dinner) so there is nothing in her stomach to gag and bring back up (her M.O.). We honestly feel as if we are torturing her each time we have to force a medicine like this in her. She fights it so hard we have to physically restrain her and force her mouth open while she screams and cries and acts as if she cannot understand why we are doing this to her. It's so hard when they are this age and you cannot explain what it does and that it is ONLY to try to help her. I don't think we will ever get used to that part of it. But for now we are forging on.

Despite how worn down we already feel at times, we are strangely more focused and driven than we have ever been in several aspects of our lives (family, quest for cure, business, personal health, life in general, etc.) It's a very difficult thing to describe but there are times when we connect so strongly to the cause and the challenge put before us that we feel like it was almost meant to be for some reason. If I'm being honest, all in all I think that concept is a bunch of crap (our destiny is written in stone, etc etc.) but I guess the point is we feel strangely energized and inspired by the course our lives have taken and we are really committed to trying to do something great because of it (or depsite it). Three words keep going through my head over the last several weeks. STRENGTH. DETERMINATION. LOVE. So much so I think I may put it on a t-shirt or something. It is sort of the core of what we believe will get us through.

We hope many or all of you will come along for the ride. The time will come in the near future where we will be asking for additional help and action related to the second most important thing we need to do in all of this...SEARCH RELENTLESSLY FOR A CURE. (If anyone is wondering, the first most important thing we need to do is take care of Hailey and Faith, ourselves, and each other.)

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.

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...