OK, after much harassment (you know who you are, and there are more than one of you!) - here is another post. I do have to agree that it is long overdue. Time is just flying by, and I don't know where it is going! I can't wait for life to get boring. School starts for the kids (4 out of 5) on August 10th, and so it will be just Esther and I all day. I am hoping that I can have some quality time with Esther, since I have been gone so much for her whole life (with doctors, surgeries and such for Mom, Lucy and Emmie), as well as have some time to get things done around the house (organizing, cleaning, etc). Plus there will still be more doctors, procedures and such for Mom.
Lucy is doing wonderfully! She turns 10 tomorrow - and has been counting down the days for the past three months. I wish I was one of those Mom's who did a "dedication blog" to my children on their birthdays. Maybe someday. She only has therapy 2x a month, and you would never even know she had brain surgery. Her hair is growing in nicely, and you either don't notice, or people think she just cut her own hair. She is still an amazing, sharing, brilliant, beautiful, funny girl.
Emmie is, at this moment, on her way home from Australia - and I pick her up at the airport tomorrow at 12:20pm. I can't wait to see her pictures and hear all about it. She has emailed and called periodically, but our visits and emails were short, because she had to pay for the Internet, and was borrowing a cell phone to call us. She will be doing a formal presentation to the Lion's Club in a few weeks, and we will be having an open house for friends, family and sponsors to come and view her pictures and hear all about her trip.
Mom - where do I start. OK - so she is on the transplant list, and we (Mom, Tanya and I) have to do everything in San Francisco. We have required classes and support groups, as well as doctors appointments and procedure for Mom. So if Mom's tumor in her liver grows beyond a 5, or spreads outside the liver, she will not be eligible for a liver transplant. They tried to do a Chemo Embolization several months ago, which did kill some of the tumor, but not enough. It did make a lot of Mom's hair fall out, thinning it out, but the part that didn't was her "newer growth" (as our hair is constantly shedding and replenishing), which was shorter, so she cut the "crypt keeper" long strands (as she called it) that were left here and there, and now has a very cute short curly style. The procedure wasn't successful enough to make them happy or to repeat it. So now she will be going in for a more invasive procedure called Microwave Embolization, where they try to do it lapriscopically if they can, and if not, they will open her up. This is where they go directly into the tumor, and "cook" it to try to kill it. She will be in the hospital for a minimum of 3 days after that procedure. They can't get rid of the cancer, but are trying to keep it at bay and buy time until Mom can get a new liver. They are also now advising her to take an "Extended Criteria Doner" liver, so that she can get a liver sooner. The Extended Criteria Donors are people that maybe had Hep B, but the liver is clear, or they are older or have a fatty liver. There are a shortage of livers, and some people die while waiting. So they think she should consider this option, as they are still good livers, and would work fine in her, since she is not at the late stages of liver disease - when it wouldn't work unless it was a "prime" liver, but is racing time with the tumor. There are a lot more livers available that fall into the Extended Criteria category - so her chances of getting a liver before her tumor gets to big or spreads is increased. To make it more interesting, when she went in for her final x-ray of her hip, the doctor said it actually hadn't healed, and so she has to have a partial hip replacement. This can't be scheduled until at least 4 weeks after her tumor surgery. Then after her hip replacement, she has to wait a bit, and go back to San Francisco for a colonoscopy and endoscopy before she can actually get a liver.
It has been quite a bit financially on Tanya and I (since Mom doesn't have any money, Tanya and I split it, pay for everything (food, gas, hotels, etc.) for all the trips to San Francisco). The tough part is when Mom actually gets her liver, because we are required to have saved $5,000 - $7,000 to cover the extra cost. During the surgery, we as her support people, are required to stay in San Francisco, and be at her bedside from 8-5 for training. Also, after Mom is released, we are required to stay in an apartment with Mom in San Francisco 24/7 for another 4-6 weeks (depending on how she is doing). Looks like fundraising isn't in the past for me, but rather has just switched from Emmie to Mom.
Mom is hanging in there though. She doesn't like the required diet, fatigue, confusion, memory loss - or Tanya and I having to baby her, but knows it is a necessity. We also have to keep tabs on her - as the liver disease can cause her to go into a coma very easily. So she calls and checks in every 4 hours - and at night calls when she wakes up throughout the night. Also, she has to make sure to answer the phone whenever Tanya or I call to check on her (which isn't fun for her, since the liver disease makes her sleeping habits crazy - so she may be up all night, and just getting to sleep during the day, and we are calling her). But we told her if she is getting rest, she needs to let the machine answer for everyone else calling just to chat. So don't worry if you call, and she doesn't answer. Tanya and I are keeping very close tabs on her. Also, please don't be offended if you call her, and she doesn't answer - she may just be getting to sleep, no matter what time of day or night it may be. Also, her computer died, so she is without email right now. You can send mail to her PO Box - and I check that for her periodically. She (and we) appreciate all your love and prayers in her behalf.
Just like with Lucy, I will blog if anything significant happens, or will blog the mundane if I have time....ha ha ha...did I just say I might have time....I'm funny! ;-)
Thank you all for being so loving, kind, helpful and patient with me and my crazy family year! Have a wonderful week!! :-)
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