Saturday, December 5, 2009


Disney trip was fabulous. I was able to truly embrace “fantasyland” and put all my worries away. The return to reality has been a bit rough. I’ve spent the past week talking with doctors, scheduling appts, surfing the internet for answers that just don’t exist and holding the tears and forwarding thinking in check. I feel sorry for all my children who have to have this stress in their young lives; it just seem so unfair that they have to bear all that they’ve been thru… abuse, neglect, adoption. illness, , ….most people don’t suffer any of these things, let alone all of them. It took me until I’d lived on this earth 30+ years to experience any of it and these kids have all had these issues touch their lives in one way or another before any of them are even teens.

I feel as if my family has had this horrific thing thrust upon us and that we have no choices…but the truth of the matter is, there is always a choice. I can choose to fight or not fight, choose to stay or run far far away, choose to learn more or choose to bury my head in the sand. Many friends and family have assured me I am the type to pick all the first choices I think how could you do otherwise, but they assure me some people would pick the second option but that I am not that type. So I will latch on to their belief in me that I’m strong and a fighter and I will continue to fight, stay with my family and seek knowledge. It is not easy though, it is damn near traumatizing at times. Mike calls it the abyss…we are just staring into it wondering how the hell we got here and what to we do next.

The choices we’ve been presented with our grim. Lisa’s doc called me last night. Because of some scheduling issues they were not able to set the biopsies up this week. They will be done next week. They are 99% certain that it is neuroblastoma, but need the biopsies to confirm. If their suspicions are correct, first plan of action will be a round of chemo done outpatient for one week and three days of the next week. The problem with this is timing. IF they can get all test results back next week, we could start chemo as early as Dec 14 with treatments every day that week and 3 days the following week including Christmas Eve. Lisa most likely would feel like hell from the chemo and be too sick to enjoy, as the doctor said, “what might be her last Christmas”. Sobering words, eh, so the choice seems easy right. Forego the chemo until after Christmas. Welllll, it’s seems as there are protocol standards around that. In order for her to begin chemo she has to have scans that are less than 30 days old, her scans expire 12/16. So, if we push the chemo out until Jan, she will need to have scans done again and because of the holiday and schedules scans most likely won’t be done until second week of January pushing her chemo out until Jan 14, a full month later, making us feel like we’re playing with fire, because we know just how fast this cancer can spread.

Maranda’s situation, while not life threatening has also presented us with choices. We went for a second opinion at Children’s Hospital. This doctor agreed our first doctor’s recommendation. Maranda needs to meet with Neurosurgeon again to make sure that the decompression surgery does not need to be done again. Once that is verified, she will need spinal fusion. He was a little less alarming suggesting we wait three more months to see how much her curve has changed, but cautioned strongly that based on past xrays, the curve will most likely continue to curve, because she is on the brink of her growing phase and that’s normally when you see the big increases. Soooo….seems like this decision has been made for us. However, we need to choose which doctor. Do we go with the one at Motts who doesn’t have much bedside manner, makes Maranda feel very uncomfortable, BUT seems very well educated, revered in her field, works at a hospital that we are thoroughly familiar with and could very possibly be at with Lisa at the time of Maranda’s surgery OR do we go with the one at Children’s who was very personable, we liked him right away, is equally educated, very confident and works at a hospital further away but known for specializing with children.

So these are the things I have been thinking about this week. Some pretty big choices for Mike and I to make. We try to keep the rest of the world in focus, but it is a bit difficult. I was stunned to look at the calendar and realize there are only 20 days until Christmas. Normally, I would just wish Christmas would hurry up and get here and be over so I could get past the stress of the season and start counting the days until spring. But I realize, that this could be Lisa’s last (I guess it could be anybody’s last Christmas) and that as my Mom used to tell me when I was little I shouldn’t be “wishing away my life”.

We only get to live once and right now it’s best to do it slowly and moment by moment and be thankful that my family feels good, is happy, laughing, has clothes, food and shelter…because for this moment that is everything AND I have a choice....I can choose to think happy thoughts and enjoy my time with my family or I can choose to worry about a future that I have no control over and feel miserable. The choice, at the moment, is pretty obvious to me.

Off to have some have some to!

1 comment:

Anonymous said...

I am so sorry you are faced with these events, challenges, and decisions.

I'm sending much grounding energy to all of you. Your intuition and faith guides you so well. I know it will continue to do so.

I am so glad the McMaster clan is together to support one another through these challenging times. You and your children were blessed to find one another. What gifts you share with each other and the world!