A lot has gone on for the past month--I'm actually looking at my calendar to try to remember the important stuff.
As of the last update (10/2/06), Elizabeth had started on the glyconutrients (you can visit
www.mannatech.com for more information) passed on to us by MacKenzie (a survivor of stage IV neuroblastoma, and graduate of stem cell transplant) and Terri, her mom. By the way, they have started an amazing non-profit group called Mac's Project (
www.macsproject.org) to benefit kids with cancer as well as the environment. Anyway, we really saw a dramatic change in Elizabeth once she had started on the Ambrotose. It was like we had Elizabeth back again. Since her June-July 2006 hospitalization, she had just lost the wind from her sails. I had all but lost every hope and was basically waiting for the worst. By the time that the Michael Hoefflin Foundation Halloween Party cam around on 10/14, Elizabeth's entire demeanor had changed. She had gained about 5 pounds and was keeping it on, and had enough energy to get around and play again.
Unfortunately, after that weekend, we got the bad news. Elizabeth's AFP levels from her 10/12 blood draw were up to a whopping 91,000 (up from 44,000 on 9/15). This made the previous 6000 point drop seem like a cruel joke. We started preparing for the worst again, waiting to see her next AFP check break the 100,000 mark. At these points, I always start to wonder what we are supposed to do. Are we all supposed to sit around and wait for the levels to keep rising? At what point does it stop? Will the levels just increase infinitely? How much longer can her body take it? And the pivotal question: How much longer do we get to have her here with us?
BUT, I was comforted by the fact that she was feeling so much better. She was enjoying school and making new friends. She had become a fast favorite of the staff, always insisting that we pass through the office going to or from school so that she could say hi to all of her teacher and administrator friends. She was living with more life than ever before, and I am so thankful that she gets to enjoy this stint of "normalcy"--although the royal treatment she gets is far from "normal"!!
On October 4, Elizabeth started Girl Scouts. In a strange turn of events, we were paired up with a brand new Brownie Group starting for first grade girls near our home--and the leader has a family connection to Chase Child Life Program at Elizabeth's hospital (CHLA). Her cousin was Chase, a CHLA patient years ago who lost his life to brain cancer. Chase's parents, her aunt and uncle, started the Child Life Program at CHLA and named it after Chase. Yes, it really is a small world. Elizabeth's Brownies meets twice every month. She loves it. Next meeting I will get a picture of her in the uniform that the girls picked out themselves. Her new favorite color is BROWN (along with pink and purple).
On October 16, Elizabeth had her first ever school picture day. All I could do all day was pray that she gets to have another.
On October 17, Elizabeth's dose of thalidomide (Thalomid) reached 350mg, where it will stay. We had been titrating up, and 350mg daily was the maximum goal. She is still taking 50mg etoposide daily as well. She is on no other chemotherapeutic or anti-angiogenic drugs. This is it. After trying doxyrubicin, cisplatin, gemcitabine, oxaliplatin, irinotecan, 5-fluoruoricil, leucovorin, Avastin, Tarceva, Sutent, Cytoxan, and vinorelbine, we are left with few (if any) stones unturned.
We finally did get amazingly wonderful (relatively so, of course) news on Halloween. Elizabeth's AFP draw on 10/30 showed a dramatic drop from 91,000 to 66,300! I have a hard time talking about it without crying. Every time lately that I start to feel the shadow of hopelessness approaching, we get some glimmer of hope like this. It really is a roller coaster ride like no other.
Halloween was a blast!--especially after the good news about Elizabeth tumor markers dropping. The kids trick-or-treated in Sylmar after having dinner with our friends, the Yamauchi's. Mike was Jack Skellington, Matt was Nemo, and Danny was Squirt (Nemo's little surfer dude sea turtle friend). Matt wanted his and Danny's costume to "match", so he picked those out. All three of those costumes came from
www.disneyshopping.com, an excellent place to find costumes and princess dresses any time of year. Elizabeth designed her own costume and had her personal royal seamstress (uh, that would be ME) sew part of it. She wanted to be Princess Elizabeth, the Purple Princess, and she was. That would be a 12 Dancing Princesses Barbie as Genevieve wig she picked out to wear. She wore the wig the entire night. They got lots of candy, and Danny had a really fun night once he figured out what trick-or-treating really was.
On November 2, we got to attend two award assemblies at Canterbury Elementary School. Every month they award two kids in each class an award: one for academic achievement, and one for citizenship. Matt got his Kindergarten class' award for academics, and Elizabeth got her first grade class' award for citizenship. I think Mrs. Preis must know how much that means to me--to be able to go to an award assembly for Elizabeth so early in the year. It is so hard not being able to plan a future, and being able to enjoy these seemingly normal rites of passage is everything I live for right now. Both awards are framed and will be hung in our hallway.
On Friday, 11/3, we sat for our family pictures at CHLA. Holden's Hope Train (a pediatric oncology non-profit group at CHLA) sponsors family portraits twice a year for patients and their families. You can find out more at
www.holdenshopetrain.org. They also did the family picture we have used as our profile picture on this website for the last year and a half. As soon as I've uploaded the files, I will post some of those photos. They are great--owed to the photographer Kristin Farrand, a cancer survivor's parent.
Friday night/Saturday morning at 1:50am, we had the most major scare of late. Elizabeth woke up screaming. I rushed to her and she was hitting and kicking, but only with the left side of her body. I tried to communicate to her and get her to respond, but nothing. She was breathing, and her eyes were open, but she couldn't speak and seemed so totally out of it. We tried to get her to stand up, but she couldn't control her right side. I thought she was stroking. We got the boys all in the car and I held Elizabeth in my arms the entire ride to the hospital. Michael says I was bordering on hysterical, but I think I was completely clear-headed. I grabbed the goldfish crackers for the boys, Elizabeth's Make-A-Wish cruise photo album, and told him to grab Mike's iPod with Elizabeth's Barbie music downloaded on it. I was afraid that she was dying and those two things were what I thought she would want. The entire drive I kept one hand over her chest so I could feel her breathing and her heart beating. She was still unresponsive, but I sang to her anyway and prayed the whole way there. Michael made great time, and we were at the CHLA entrance within 30 minutes of when Elizabeth first woke up. It took about a half hour before any movement on the right side was detectable, and within an hour she started to make some non-sensical noise. Her vitals were all stable, and she had a head CT by 3:30am, which showed no evidence of stroke or brain tumor activity. She was admitted for observation, and by 4:30am she was able to verbally answer simple questions. I slept with her in her hospital bed. We have had a couple of close brushes before (like July 3rd's near bleed out), but this one just felt different. More real, more severe, more close, whatever. The docs all agree that it is most likely a very minor seizure disorder that may be triggered by the thalidomide or something else, and Elizabeth will have a head MRI on Monday, 11/13, to look for any physical blockages or pinching that the CT didn't pick up. She will also have a head EEG soon to check for any evidence of seizure activity. All in all, seizures are really considered minor nuisances in the medical community (although it scares the heck out of me!), and really would probably be the best case scenario to explain what happened, and most likely. We were released less than 12 hours after admitting and went home on Saturday. Grandma Kirsten took Elizabeth shoe shopping. Just another Saturday... (meanwhile I was still recovering!) There were no complications (that we know of), and Elizabeth was actually in a really great mood by Saturday morning!
Grandma Mary, Michael's mom, arrived on Tuesday, 11/7, from Tennessee. She will be staying with us and spending time with the kids before leaving next week. The kids are all so happy that she is here, and Elizabeth now has a steady back-scratcher. The kids have off tomorrow for Veteran's Day, so hopefully we can make good use of the three day weekend and have some Grandma fun.
Please add Tanner to your prayers. She has been doing really well since her surgery on Halloween, and she is another cancer kid who doctors have given up on in the past, but who keeps proving them wrong. She gives us hope that Elizabeth can keep doing the same--proving the doctors wrong.
Elizabeth is still loving every second of school. When they had to draw what they want to be when they grow up, Elizabeth drew a Disney Cruise Ship and put a little Elizabeth on it. She said she wants to work with the Make-A-Wish kids on the Disney Cruise ship so she could have fun and live on the boat. So I guess the Disney Guest Relation Make-A-Wish ladies (Nadia and Lynn) made a huge impact on Elizabeth! Elizabeth already promised her teacher, Mrs. Preis, a discount.
As always, thank you Angels for showering Elizabeth with your love and care. Angel Denise, she wore the pink shirt you sent her for school pictures since she got it only a couple days before and fell in love with it. Angel Pat, she wore the pink headband you sent her from your cruise for her pictures as well. Angel Janet, she plays with her dancing princesses all the time, and wears her Fairytopia mermaid mini doll necklaces to school every day faithfully. Angel Barbara, Elizabeth carries the fun pages you send in her purse and pulls them out to do everywhere--the car, the hospital, on errands. Thank you. She has received the most amazing books (and LOVED getting the Magic Slippers since she didn't have it but it was a favorite for read-alouds at ballet class), collections of stickers (which she uses DAILY to create amazing artwork--I have quite a gallery collected which is priceless to me), and beautiful handmade cards. There are dozens of ChemoAngels who make Elizabeth feel incredibly special. And also a special thank you to those of you (Angel Jenn, Angel Pat, Angel Kathy, and more) who have sent a little something for her brothers, too. They are often left out (by us included!), and they feel extra special when Elizabeth's special Angels send a note to them.
The most important thing we can ask from anybody is that they pray for Elizabeth. Please remember her in your prayers. Pray that she stays strong, that the thirteenth chemo agent does the trick, and that she beats this monster.
I almost forgot to mention... On Friday morning (same day we had CHLA pictures), more hair than normal came out on Elizabeth's brush. Then globs came out. She still has hair at 6 days and counting, but it is thinning. She hasn't lost hair since being on her first chemotherapy treatment (doxyrubicin and cisplatin) in August-October 2004. Her hair had just gotten long enough to put it in a ponytail. We don't know if the shedding is temporary or if it will continue until it all comes out, but it is really bothering Elizabeth. She is pretty blue about it, and coupled with the probably-a-seizure incident, this past weekend has taken it out of her and all of us. I hate seeing her go through this. She is afraid to sleep because she doesn't want to have another seizure, and she gets all in a funk when she thinks about her hair. Please pray that having Grandma Mary here will help cheer her up and pray that Elizabeth doesn't get too caught up in the bad stuff. We want her to enjoy every moment!
