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!
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...
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.
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.
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