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 " 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!


Anonymous said...

My dad and I are at Panera (on my iTouch) and I think Lisa is the sweetest little girl there is and I had a blast playing babies with her. Thanks for inviting us to your lakehouse we had a blast! I pray every night for Lisa and her family.


Anonymous said...

Keep us posted on any type of fundraisers or foundation possibilities. I now I would help in any way possible and I am sure many other people out there will to. Good luck this week; you are all in our prayers.

Laura Kelm

Kylie said...

Lisa is the CUTEST 5 year old ever!!!! She's so fun to be around and makes me very happy!
Love you lisa!!!! Kylie

Diana said...

Just want to let you know that Lisa and all of you are in my prayers as you face the challenging weeks ahead. You can trust that we will take good care of Lisa whenever she is able to be in school. Please let me know if there is anything we can do for you.

Diana Romanowski

Anonymous said...

I know Mike from Gale, and you a little bit, Linda, but mostly through Mike, and now your blog.

I haven't posted anything, even though I've been reading the blog regularly, because everything I type seems utterly inadequate and I just delete it and instead think extra loving thoughts.

But I wanted to post something now so that you know that you are most definitely being sent loving thoughts and prayers from all over the world. I've told everyone I know about Lisa and your family, and all of my family and friends (and their families and friends) are pulling for Lisa, praying for you all, sending you all their love and hope.

And the "wise person" who wrote you is indeed most wise. Balance is tough for those of us in everyday circumstances, let alone those of us facing extraordinary circumstances. And our minds will only let us process a little bit of devastation at a time. That's by design, because otherwise we'd be completely overloaded all the time and unable to do what must be done. From what I can see, you and Mike are superlative parents, and are doing everything you can (and then some) to shepherd your children through everything that life throws their way, whether it's horrendous and wonderful. No one could do more. No one.

If there's anything I can do, beyond reading and sharing your ups and downs, please let me know. I'd be honored to help out with anything I can.

Take care, and know that we are out here, even if we don't always speak up.

Lynn Zott

Anonymous said...

Me again. I just remembered something else I wanted to say. You have already done and continue to do SO MUCH GOOD, Linda. What you and Mike do for Lisa and the rest of your family, of course, but also by giving a voice to other families devastated by the same or similar circumstances, by raising awareness of neuroblastoma, and by your utterly profound example of the amazing power of love and human goodness to survive the worst. It is precisely because you don't set yourself up as a role model that you are such a beautiful, inspiring example of how, despite our struggles, we human beings can do what seems like the impossible. You've already touched more hearts and lives than most people could do in ten lifetimes, and continue to remind all of us about what matters most. That's an incredible gift, and I for one am eternally grateful for it.

Oh, and I meant "or" above, not "and": "horrendous OR wonderful." Sorry ... I'll always be an editor. :-)

Lynn Zott

Anonymous said...

I am so glad you are all family. What comfort you provide for Lisa. Helping her, guiding her, and enabling her to be in the present. I am so greatful you are all together.

I think your foundation idea is great. If I can be of service in some way, let me know.

You are as always in our thoughts and prayers.