Saturday, January 30, 2010

Friday, January 29, 2010

Another good week for Lisa

Lisa is doing great. Only had labs this week and besides taking a bit longer naps during the afternoons she's still going strong. Today was the day that the Child Life Specialist came to the school to talk to Lisa's classmates. I think it went very well and am glad that we were able to present the information to the class in a non-threatening, non-scary way. Kids are the most observant, resilient and accepting so I'm sure they will lookout for Lisa.

Tomorrow ALL my kids are going winter camping for the weekend with Special Days camp...that's the one for kids with cancer and their siblings. The older kids went for a week this summer; this time Lisa is joining them. I'm a little freaked out...she's only 5 and never spent the night away from family. The camp is up near Muskegon so it's further away then the one in the summer. Apparently Lisa does not share my feelings. She's really excited to go and was the only kid to actually pack by herself. When I checked their bags, she had everything she needed and the older kids were running around grabbing things they'd forgotten. I really wanted to video tape her putting things into the bag, but I was too busy monitoring the others. Maranda made this video after the packing was done.


video

Monday, January 25, 2010

A Picture is Worth a Thousand Words

So far so good. Lisa is handling chemo treatments very well. This week is our week off from treatments. She's still in great spirits, full of energy and hair loss, so far, has been minimal. Still looking for the miracle to beat this disease. Phone calls to other places like St. Judes and Sloan Kettering are not turning up any better options. So we continue to pray and hope.

C'mon...admit it...you wish you had the guts to wear an outfit just like this...fun, fun, fun

Sunday, January 17, 2010

Chemo side effects.. Poor Grandma Mc

Lisa finished her chemo in good spirits last week. Mike took Lisa, Chrissy and Thomas up to Grandma's Mc's for a visit this weekend. Of course, the side effects of chemo came "up" when they were there. Poor Grandma Mc...I can't remember the last time we visited her house that one of kids didn't get sick. Of course, Grandma took it all in stride.

Lisa is doing well, but we noticed some hair is missing already. It bums me out. We are planning to have Lisa continue to go to school as long as her counts are good. We are working with the school to have a Child Life Specialist come out and speak to her class so none of the kids are frightened when they find out she has cancer and so they accept her baldness as she continues to lose her hair.

Unfortunately, the date for this visit is two weeks out...I'm going to have to work with the school to see if we can move that up. Many of the moms I spoke with feel the same way.....Lisa should continue to go to school, but the sooner we have an expert of some sort explain her condition to classmates the better. Most parents I spoke with said it would be a great help if Motts came out and explained things so parents don't have to field all the questions on their own.

Maranda deserves a high-five today. She had to go for her MRI. Normally she is able to watch a movie during the procedure which helps keep her calm, but the player was broken. She laid still for the whole 1.5 hours just hearing the crazy loud noises and came out smiling and ready to go shopping. We settled on going to breakfast. We'll be reviewing the results of the test this week with neurosurgeon to see if she has to have the brain decompression surgery done again. I really hope not, it wasn't an easy surgery and I really think she deserves a break. She's already scheduled for spinal fusion this summer, one surgery a year is enough...don't ya think?!

Keep reading and keep praying!

Wednesday, January 13, 2010

going strong

3 days chemo done, 2 to go this week. So far Lisa is handling the chemo well. She's been able to go to school in the morning and chemo in the afternoon. I'm doing better too, getting used to the whole chemo thing again. We are finding our new normal and taking it one day at a time

Monday, January 11, 2010

get me out of here

It has begun. Labs drawn, doctor visit complete, Lisa plays as we wait for her chemo drugs. Treatment will be done everyday this week as an outpatient, unless she spikes temperature and has to be admitted. She is fine, happy and playing away. I am not, I just want out of here...this seems like the beginning of the end. I spent hours surfing the internet last night hoping to find some solution, something our docs didn't think of, something, anything to try. Nothing. So today, I'm just sad, on the verge of tears...somewhere in my mind the clock has started ticking and I can't make it stop.

I watch her so full of energy and so smart and think WHAT are we doing to her?! Infusing her with toxic chemicals, it's just so crazy. I know we have no choice, but it breaks my heart...the thought of her being sick to her stomach, tired, losing her hair are too much...

Saturday, January 9, 2010

an emotional week

Lisa completed all her scans this week with no problems. Tuesday night, she wouldn't/couldn't go to sleep; she kept insisting that we had to go to the hospital that night for her appt and kept asking if it was time to go. Finally at 11:30 pm, I turned Disney channel on, kissed her goodnight as she worked on a puzzle, and I went to bed. About an hour later she came up to my room insisting that we had to go to the hospital. I explained to her again that her appt was early in the morning (6:30 am) and while it would look like nighttime when we left for her appt, we didn't have to go yet. I explained all the workers were home sleeping in bed and there was no one to do the tests at night. Still she wouldn't settle down. Finally, I said "you seem anxious, what's wrong, is something scaring you?!" She answered "the chemo". Wow, didn't see that coming. I told her that she wasn't getting chemo the next day, she was getting a few tests and they would put her to sleep for them. I reminded her of the room and the techs and how she's done the tests before. I then talked about the chemo and how she was a bit younger when she had it before but that it wasn't scary, just medicine going into her tubes. I talked about the room and the people we know and all the activities she could do. Before you know it, she snuggled right up with Mike and I and went to sleep.

Unfortunately, the next day caused my own anxiety and despair to spike pretty high. Watching Lisa recover from her bone marrow biopsy put me into a deep funk. She looked like hell coming out of the anesthesia and she was really sore. It was reality knocking, this is really happening, things most likely are going to get much worse and she is going to get very sick and look like hell a lot more often.

Last night brought more despair and reality. I received news that the little boy we know who has been in remission the longest, the one I'd pegged my hopes on as a survivor, has relapsed. I think that shook me up more than Lisa's relapse. How can it be, how can there not be a cure, how can none of the kids we know beat this. The odds are dismal.

Problem solver that I am I have been exploring ways of making this bad situation better. For the past year now I've thought about starting a foundation/fund-raiser in honor of Lisa and all our other NB friends. Unexpected emails from acquaintances and a phone call from Mott's Development office this week have only reinforced the idea that I need to do something. Many things go thru my mind and I've meeting with someone on Mott's on Tuesday...something good has to come from all of this.

I do still believe God is guiding us in all of this and he is trying to "send me signs" and remind me that he is still there. We took the kids to Chuck E Cheese Thursday night. It's something I'd been trying to do since summer, something that Lisa has been begging to do, and something that we won't be able to do once chemo starts and counts drop. The kids were running around and I was sitting in the booth when a woman came up to me and asked if we were the McMaster family. I said yes as I stared at her frantically trying to place where I knew her from. She cleared the mystery up quickly and said that she was from OLGC and was in a prayer group that was praying for Lisa. She was one of our blog readers and had recognized Lisa from her pictures on the blog. This sounds weird, but I felt like she was an "angel of God" there to remind me that God is watching and knows our struggles.

So....I still hope and believe that perhaps Lisa will be the one. I still don't believe her life will be over in under two years. I know what the odds are and I understand them, but I still hope for the miracle. I thank all of you who read and pray and want to let you know that it's your emails and posts that help keep us going and lift our spirits.

Next week begins chemo. I'm sending up extra prayers that all goes well and I'm hoping that I can stay strong and remember to live each day fully. I keep in mind what a wise person wrote me "Bah...you can't have a balance when life has swung in one totally devastating direction. Just enjoy the ones you love for as long as you can and hold on to some sanity, because this whole situation is impossible to comprehend."

Wise words for us all to live by!

Monday, January 4, 2010

Routine

Ahhhh....it was so nice to step back into the routine of things today. I had the pleasure of volunteering in Lisa's kindergarten class and was exhausted by the time we got home for lunch. I don't know how that teacher does it....kindergarten takes a lot of energy!

I found myself watching the children closely and thinking how much they've already grown since the beginning of the school year and how different they will be in another five months when school gets out. I found myself wishing for a crystal ball to see if Lisa would make it to kindergarten graduation so I can ball my eyes out like I always do at those school things. I found myself watching all the kids wondering which ones consider Lisa their friend. I found myself wondering whether I should contact the moms I know and setup as many playdates as possible this week to offset the upcoming weeks of chemo. I found myself thinking that when we started fostering that one of the things I wanted for my children was that they each have at least one special friend...you know the one who they share their secrets with, the one who plays with them on the playground, the one who always wants to be their partner, the one who likes them for them. That's what I want for Lisa...that friend...the one who tells her parents all about what she and her friend Lisa did at at school, the one who calls for playdates, the one who is worried when Lisa is missing school, the one who isn't afraid of Lisa when her hair starts to fall out, the one who makes school more fun and gives Lisa a reason to go when she might not be feeling well. Simple things, that's what I want...

Tomorrow Lisa will be going to school in the morning and then to the hospital for an injection. Wed will be a long day at the hospital and she will be having all the scans done again, as well as, the bone marrow biopsy. Thursday they will finish up scans and the plan is that next week Lisa will begin her chemo. So much for routine...looks like we are revving up for a new one!

Hope everyone had wonderful holidays and that you are settling into your routine!