Friday, August 10, 2007 - 9:15pm
This is the first time I feel relaxed since we came home from the hospital yesterday. It's getting harder and harder to take her for procedures where she get's anesthesia. She knows something is happening and the entire walk to the operating room she is crying so hard and pleading "No Mamma! No Mamma! Daddy! Daddy!" She struggles and fights when they place the gas mask over her face and finally her little body goes limp in my arms. That by far is one of the hardest things you'll ever do as parent. I get a knot in my throat even thinking about it now...
The surgery went well, but we had another recovery room debacle; her port wouldn't flush so she didn't get any pain medication for at least 30 minutes. She was unconsolable. That hour in the recovery room seemed to last a lifetime. It was so frustrating! After that, Brian and I spent the next eight or so hours carrying her while we walked the halls of the 4th floor of UW Hospital. She didn't want to be put down or ride in a stroller or wagon. Each time we would start heading back towards her room, she would start crying. When she did sleep, it was on our lap in the rocking chair. Luckily, by 9:30pm, I was able to get her to sleep in her bed. Unfortunately, the nurses had to wake her up every 2 hours for something. By 11:00am on Thursday, Hailey had tolerated her tube feeding for 4 hours and a bolus feeding. When we signed those discharge papers, we practically sprinted out of that place! Don't get me wrong, Hailey received wonderful care, but there's no place like home.
Now, the reality of frequent tube feeding has set in. Hailey is not too fond of her new feeding tube. We make feeble attempts at trying to make everything less scary to her and refer to it as "tubie". She's not impressed with our nickname or getting hooked up to it 3 to 4 times a day. I can't say that I blame her. Between her port and her feeding tube, her body does not look quite the same as it used to.
I was commenting at work today that we are trying to adjust to a "new normal". One of my coworkers insightly said that there is no such thing as normal. The only thing that we can do is adjust to whatever life throws at us and move forward. I couldn't agree more!
Tuesday, August 7, 2007 - 8:40am
We haven't done an update in a while, but Hailey continues to do just fine. We have been really busy the last week or so, and quite honestly, we're tired right now...to the point where once we are done with everything else we are trying to balance, even doing a simple journal entry feels like a lot of work. Things will calm down a bit after this week. Another chemo session this morning, then back home for the night, and then back to UW tomorrow morning to get Hailey's feeding tube placed. We will have to stay overnight at UW at least one night, maybe two. Hailey should recover pretty quickly from the procedure, but they keep you at least one night as a precauction, more if things aren't going well. (All of this will be put on hold if Hailey's blood tests today show that her counts dropped again).
The feeding tube will be used to supplement what Hailey will eat by mouth. It will allow us to get healthy, cancer fighting nutrition in her and hopefully help her gain a few pounds quicker. We will give medicine through the tube as well. We are disappointed it had to get to this step, but we have no choice. The tube will hopefully help her gain enough weight to get a little further away from critical. But unfortunately, the only way she is going to gain significant weight to get her back on the growth chart is if the tumor shrinks at least a little bit.
So, we forge on.
One of the activities we have been spending a lot of time on lately is getting organized for our fundraising efforts to raise money for research and a cure related to Hailey's specific tumor type. A letter writing campaign will be coming to all of you very soon asking you to consider donating to the cause, and asking you to send the information on to as many people as you can think of. The real power in this will come if every one of you could contribute and send it on to another 20 or more people, and then they do the same, and the 20 or more they send it to do the same, and so on. There will also be some local events planned, and a website we are putting together where all people can read about our story and donate online and receive a tax-deduction receipt and hopefully even buy some merchandise that would help contribute to the cause. The "donating" site will be a seperate site from this one...this site is not built for that purpose, but we'll post the link all over this site when it is available and it will be all over the information in the letter writing campaign as well.
So we have a lot of things in the mix from a fundraising standpoint. Stay tuned....we need just a little more time to finish out our planning and enlist some other people to help, and then we'll be ready to go. In addition, we are trying to maintain 3 businesses, Shannon's job, a household, stay in shape, see some friends and other family once in a while, and most importantly, take care of each other. Hopefully we can find a way to do all of this well.
Hailey's first MRI since treatment started is in early September. This will be the beginning of many anxious moments for years to come waiting to learn what is happening inside our baby girl's little head. The date is already looming large in the Meltz house....
Tuesday, July 31, 2007 - 10:02amHailey's counts are back within normal range. Game on...
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....
Major SponsorsTeam Hailey would like to thank the following sponsors for their generous support.
Please click on their logos for more information.
For information on becoming a business sponsor of team Hailey contact us.