Monday, August 29, 2011

Get your GOLD on!

As we quickly approach the beginning of September, I want to remind everyone that September is Childhood Cancer Awareness Month.  Since my visit to St Jude last year, I've been on a mission to make sure that the month of September is plastered in GOLD.  Why you may ask?  Because GOLD is the ribbon color for Childhood Cancer and  last September, on my first trip down to St Jude, one of the biggest childhood cancer hospitals in the U.S., I did not see one gold ribbon, shirt or anything that indicated that anyone knew it was Childhood Cancer Awareness month or that they even had a ribbon color!

Not surprisingly, the next month, October, everything was bathed in pink to show support and promote breast cancer awareness.  Even the flight attendants on the plane were wearing jeans if they had on pink shirts!  Everyone seems to know that October is Breast Cancer Awareness month, and if you don't know the color pink everywhere cues you into the fact that something is going on.  Heck, even U of M had a pink ribbon painted on their football!

My goal , as the website Gold: The New Pink explains,"is not to take away from the efforts that have been made to advance the cause of breast cancer awareness or to suggest that breast cancer awareness is not as important, but rather to elevate the cause of childhood cancer to equal stature. So much more funding is given to adult cancers than for childhood cancer. The parents of children stricken by cancer want to level the playing field."

Do you know that:

The National Cancer Institues' federal budget was over $3 billion dollars.  Breast cancer received more than 20% for funding, while all the major groups of childhood cancers received less than 3%.

The American Cancer Society put more than 11% of their funding towards Breast cancer which was identified in the "Society Priority Areas of Research", and  Childhood Cancer which was listed in "Other Research Areas" again received less than 3% of the money.

In the past 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

Again, the website Gold: The New Pink explains it well: "As a society, we like to say that “children are our future.” If we truly believe children are our future; why do we sit idly by while more than 12,000 children in the United States are ravaged by this disease each year, and approximately 3,000 die from it each year? Worldwide, 80,000 to 100,000 children die from a form of childhood cancer every year. EVERY YEAR! If we truly believed that children were our future, and our future was being threatened by this evil, would we not do something? We commit billions of dollars each year to protecting our country, and yet do so little to protect the generation to come from a disease that comes silently and kills so many."

So...I'm seeking to do my best to build awareness that CHILDREN GET CANCER TOO and they need funding, research, new treatments,new protocols!!  All this comes first by making people aware and with that awareness comes action and funding.

Here's what I ask of you...three things....

1). Spread the word!! September, the month that many kids go back to school, is also the month to remember the many children who are fighting cancer.  

2). Get your GOLD on!  Wear something gold!  The ribbon color for Childhood Cancer is GOLD because gold is a precious metal and the color symbolizes our precious children. Let's bathe the world in GOLD in September; you can switch to pink for October! 

3).  Continue to pray....many childhood cancer warriors are fighting a battle with few weapons...there are not currently cures for their disease so each day is truly a gift and your prayers buoy the children and their families along.

Have a wonderful Monday and for those of you who need some GOLD to wear, feel free to check out our BLASTnb website where we still have t-shirts and other BLAST items for sale.

Friday, August 26, 2011

We returned home on Wednesday

We had a wonderful vacation on our beloved Topsail Island, NC.  As always, I found the vacation far too short. Original plan had been for two weeks, then it was cut down to one week so we could return for Lisa's treatment, then it was bumped to 10 days to allow us a few extra days of vacation while still qualifying Lisa for a new study.  Unfortunately, when we had her blood tested down in NC, her counts were not high enough to qualify her for a spot in the study and our U of M team had to let that spot go.  The good part is that meant we could stay for a whole two weeks; the bad part meant more time goes by without Lisa's cancer being treated.

We opted to come home on Wednesday because Maranda wanted to be home "with her family" when she went for her high school orientation.  While a small and simple request, it really reminded me how much we arrange our schedules around friggin cancer but downplay or overlook other important life moments.  While leaving Topsail is never easy for me to do, knowing that Maranda is getting ready to embark on the great adventure of high school made it much easier to pack up.  That and the fact that Irene was coming and I had already enjoyed 10 fabulous days at the beach and didn't need to end it with the frantic evacuation that will take place tomorrow.

So, we are home.  The kids "hung out" with their friends today and I did absolutely nothing.  I find I am once again suffering from Topsailitis and having trouble getting into the swing of things and actually having to "do" anything besides sit and read.  I know the moment will be short lived.  I've already started filling out the dreaded school forms AND trying to get a mental hold on next steps for Lisa.  They've rescheduled her for scans next week so they can try and qualify her for one of the three remaining spots in the new study.  While this sounds promising, my mind whirs with questions.  Such as, shouldn't we have blood work done first to make sure her counts have improved?  Can we sneak in a round of chemo before the study to try and beat back the disease before putting her on new study? What will we do if these scans show an increase in growth?  It's only been three weeks, but Lisa has been more tired and having more aches and pains and this always makes me worry.

I'm sure my Topsailitis symptoms will subside and soon I will be at  running top speed again.  I only hope I can find a few remnants of sand in my shoes to remind me to stay focused on living each day fully and appreciating each step on the path of life..whether it be a big or small moment!

Wednesday, August 17, 2011

Cancer does not take a vacation

As some of you already know, Lisa's scans came back with more disease.  While the news is disappointing, I've become so used to expecting the unexpected that it really didn't shock me much.  I would have loved to hear good results, but when our nurse delivered the news I found myself shifting into the "where do we go next?" mode without even a tear or need for a drink!

Lisa's medical team deserves a high five for all their efforts.  They knew that we were getting ready to go for a 2 week vacation to paradise and we knew that depending on her scans the vacation might have to be cut down to one week.  Once they saw the scan results last Thursday they called us immediately and asked that we bring Lisa in the next day so they could examine her.  We already knew we were going to abandon the previous study and the team had been diligently working to reserve a spot in the next study.  By having us come in Friday they could start the paperwork and tests needed to clear Lisa for the new study.  They massaged schedules, double-checked timelines and made arrangements to have a blood draw done in North Carolina so that we could spend 10 days on vacation and bring Lisa back in time to start the study on Wed 8/24. It's not the 14 days that we planned, but it's better than 7 and only possible because of  our UofM team's efforts!

So, I sit here typing this in the quiet of our beach house.  Everyone has gone to sleep.  We have a big crowd here and it is positively wonderful.  The days have been spent sitting in the sun, swimming, walking the beach, reading books, gabbing, eating and having the occasional ;) drink!  There is no clock, no schedule, no demands.  The kids are "hanging" doing what they like to do and so are the adults.  That friggin disease cancer may not take a vacation, but we will!

Hope all of you are enjoying the last weeks of summer and taking time to live life fully!

Tuesday, August 9, 2011

Scan week this week

Summer is flying fast.  We are doing our best to get the most out of it.  Last week, the older kids went to camp and Lisa, Mike and I spent the day at the lake on Monday.  On Tuesday, Lisa and I went to Greenfield Village with some friends and the first thing the group wanted to do was the Lisa waited in line watching it go round an round she either made herself nausea or her chemo kicked in. I managed to get her off to the side before she threw up the red kool-aid and potato chips she had for breakfast .  She sat on the grass while I went to the bathroom to clean her shoes and bring back paper towels. By the time I was back she asked me if i thought the other kids would go again when they got off the ride, because she felt better and was now ready!! Needless to say, I said no and watched over her closely for the next 3 hours as we battled the heat and she skipped around the place...the kid is a trooper.  Wednesday, Lisa and I went to Jungle Java and she spent a good few hours running around with her friend and her baby cousin MacKenzie.  Thursday was doctor day.  Friday, we headed up north to the campgrounds near Michigan Adventure.  Lisa was very excited knowing that there was only one more day until she saw her siblings.  On Saturday, we picked them up from camp (they were not very excited to see us...the LOVE camp and wanted to take the bus home with their new friends).  We spent the afternoon dipping our toes into cold Lake Michigan and swimming in the warmer, adjacent Duck Lake.  That evening we had a bonfire and Sunday morning we were joined by another McMaster clan to hit up Michigan Adventure.  The kids all had a great time and Lisa even tried out a roller coaster! (You can see some pics on facebook) We closed the park and headed back to camp.  On Monday, we packed up camp and spent the afternoon leisurely tubing down the White River in Muskegon.  We returned home last night and today began first day of scan week.  Today, Lisa only needed an exam and injection.   Tomorrow will be the long day...she will have anesthesia and then have an MIBG scan, CAT scan, and bone marrow biopsy.  Thursday is just MIBG scan.

We, of course, our hoping for stable or improved scans.  Unless there is an enormous decrease in Lisa's disease, we have already decided that we will be pulling her off the most recent chemo study she has been on.  While the side effects haven't been too horrific, it doesn't make sense to keep putting her thru them when there are other drugs that could work to keep the cancer at bay without making her feel lousy for a week at a time. Lisa's doc has already indicated there is another study that looks very promising that they want to put her on and they are working diligently to get her into it.  We won't know until next week whether or not she has a spot.  This means we may need to cut our vacation to Topsail short......ughhhhhhh!!!  But we will do what we need to do.

That being said, please keep fingers crossed and prayers going that Lisa's scans come back with good results.  And while you are sending up your prayers, please add a few extra of thanks for my Mom whose doc says her cancer appears to be responding to of strength for neuroblastoma warrior, Deshawn, whose road is coming to an of guidance for Bridget whose scans have come back with more cancer and the docs and family are trying to determine next best steps.

Hope everyone is enjoying summer and living each day fully!

Wednesday, August 3, 2011

Hello everyone and thanks for checking in. Mike here at the controls for a change. It's been a while since we've updated the blog and only the second time since the fundraiser so it's way overdue. We've been keeping busy with plans taking us places every week and those excursions have been a wonderful distraction.

Lisa is currently on a new study that is testing the toxicity levels of a new oral chemo drug. That is to say that the chemo is an old flavor but just in a new pill form. Since beginning this study she tends to throw up on the chemo days about once daily but that stops when the chemo stops. Other than that the side effects included mouth sores after the first regimen and she's prone to get tired more quickly. [longer naps] Alternating with the naps is Lisa on high speed.

Prior to the study Lisa's been doing chemo about every third week since January with very little side effects and steady progress against the disease so we were somewhat reluctant to make any change but this study requires, as do most, some amount of cancer so as to judge it's effectiveness. This study also doesn't effect her eligibility to enroll in others that we may elect to participate in later.

Lisa is scheduled for scans next week so keep your fingers crossed and your Crosses handy. Send her your best mojo, healing thoughts, and prayers. She continues to be the same happy bubbly little girl that you saw the last time you met her. I'm convinced that all the positive energy and her state of mind [happy - care free] plays a significant roll in her ability to stave off the disease.

Thanks again for checking in and I hope you and your families are enjoying a happy healthy summer.