Less grass, less hair, less cancer

There has been much activity in our household as spring has arrived. Spring is a season of transition, as we can finally, happily, and with all hope, safely put away snow shovels and cold weather gear, after such a brutally long and cold winter.  There is what I refer to as the "march to the end of the school year" filled with band concerts, awards banquets, art shows and final exams for the older ones.  We were tested throughout the winter, but we can celebrate our success in spring.

We have medically transitioned as well, ending daily travel to the hospital for treatment and getting interferon delivered to our home where we can give Brent the injections ourselves. Wow... I have just compressed countless, horribly frustrating hours spent on the phone over the past several weeks into one sentence.  Sigh... But spring is a time to clean up the winter messes, and then move on, leaving those things behind.

Several weeks ago, we got started doing just that, cleaning up our yard.  Dan found me in the front where I was moving some bulbs and weeding the flower beds. He urged me to come to the backyard, because there was something I really needed to see.

I walked back to discover that Alex was supervising and had been giving a tutorial to Brent...who was cutting the grass.  Gratitude washed over me as I watched Brent, who was in the midst of interferon treatment, who is missing half his pelvis, who has has endured over ten surgeries in the past 2 1/2 years...who has fought hard and repeatedly for the opportunity to walk again and for the gift of being able to cut the grass.  At 14, this shouldn't be considered a big deal, but let me assure you that for those of us in this house, it is.  It was an amazing thing to see.

So, we are also busy with Kick-It, which raises funds for pediatric cancer research.  Lauren is making earrings and selling them to raise money.  Alex collected donations from businesses in the community and is doing a Chinese auction at the High School next week.  Back in the fall, Brent had committed to shaving his helmet of hair this month in support of those kids in treatment, which feels like several lifetimes ago.  I would point out that this was before Brent was once again, one of those kids in treatment. However, he has not wavered in this commitment.

Over dinner, after that long day of yard work, we talked with the kids about their projects.  I also shared news about the daughter of my mutant friend.  Lily, an adrenal cancer survivor like Lauren,  was raising money for St. Baldricks and also to honor her mother.  She grows a fantastic crazy mop of hair, btw.  In shaving it, she raised over $4,500, far, far exceeding her goal.   Brent thought this was pretty awesome.

But, Brent also wanted to DO something, to somehow earn it.  After brainstorming, he decided to offer to cut the lawn of the highest donor... BECAUSE HE COULD, which, as I have mentioned, is nothing that we take for granted here.

Last weekend, Brent and Dan went with a group of friends and their fathers to tromp in the woods and play paintball, which we thought was a great way for Brent to celebrate finishing the first phase of melanoma treatment.  He had a fantastic time, enjoying his new found mobility like he hasn't been able to since 2011.  He was moving pretty slow on Sunday.  Limp was more pronounced on Monday. Pain lingered on Tuesday.  Wednesday, back at Rainbow, we found the break in his foot.  He is back on crutches.  Sigh...

Medically, there are not concerns about this break being cancer driven, only that he has been non-weight bearing for so long that the bones in that leg are not so strong.  We will x-ray again in a month.

I asked Brent if going to paintball was worth it, knowing that he is on crutches for a bit again.  His face lit up, and he had an ear to ear grin..."Absolutely! It was so much fun, mom!"  I like that he has no regrets.  His solution to the lawn mowing prize for Kick-It?  He will cut the grass for the highest donor in July, rather than in June.  It will be no less meaningful a month later.  And I have no doubts that he will continue to work hard.  It is just what he does.

If you were interested in supporting the RamerNation for Kick-It, we would be most honored and grateful.  The grass grows high in July!

http://www.kick-it.org/games/2014/06/kick-it-with-the-bees

'Clouds' and Seasons

Today was a glorious day.  There was plenty of sunshine and decently warm weather.  It was clearly a day to get in the yard.


I have to admit that gardening, one of my former passions, has taken a hit lately. We have been in our home for nearly nine years (whoa--that doesn't seem right, but I just did the math)  We have spent most of our efforts converting grass to garden, and garden to grass.  We are perpetual work in progress.


We need to have some trees removed, which I have said is one of the least sexy ways of spending money, right behind new tires for the car, a new furnace, or a new roof.  These are expenses that no one will ooh or ahh about.  But if you fail to plunk down the cash, and it subsequently rains in your living room, well, people will notice.


There is a lot that we intend to do, with our limited time, and limited budget.  Happily, this will mean that I will be required to dig in the dirt, getting back to my roots so to speak.  While the gardens have been largely neglected by us for years, they have had the attention of the 100 pound puppy (who, now, nearing on the two year mark, is rapidly approaching the point of being simply considered a dog of questionable training...sigh... We have been a wee bit busy)


So, I was back in my element today, working the soil, weeding and moving some bulbs.  Busy hands and a free mind.




I woke this morning, hearing the song "Clouds" by Zach Sobiech in my mind.   Yesterday was the kick-off for the middle school Kick-It campaign, which lasts the month of May every year. The children raise money for pediatric cancer, devising their own fundraising events, pooling their ideas and gathering the funds as a school unit.  They see the impact of their collective effort at the end of the month, last year raising $32,000.  Pretty awesome if you ask me.


They showed our Flashes of Hope video to the school, which was hard for me, revisiting our struggle.  Children (including Lauren) gave short speeches about how cancer has impacted their lives.  And one girl got on stage to play the piano, "Clouds" by Zach Sobiech, whose story I know all too well.  The entire school joined in singing, and I had to slip out of the auditorium, too overcome with emotion to remain.  They sounded amazing from the bathroom, fyi.


In the garden today, I was working through my varied emotions. Zach, who lost his battle with Osteosarcoma last May, was an amazingly positive, generous and loving person by all accounts.  Despite having never met him, this loss, well, it lands a little too close to home for me to be at all comfortable with it.  But, I choose to be inspired, and to take the lessons that were offered in his story.


While I worked the soil this afternoon, I worked this song out of my head, one of impending separation.  It was replaced with Ecclesiastes...which Lauren had read at her great-grandfather's service not that long ago. But I tend to hear it in my mind as the Byrds sang it...all Forrest Gump like:


To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.


I am cognizant that there is a time for every purpose, I just do not always know what season it is and that is not just because of the crazy weather here in northeast Ohio.  It would seem however, that this is the season for planting.  A time to heal.  A time to laugh.  A time to build.  A time to speak.


And always, a time to love.

Perception matters

Brent began treatment Monday.  I said 'treatment,' rather than 'chemo.'  I have thought about this quite a bit, and it really shouldn't matter what I call it.


But it does.


Brent, as we were heading down to the hospital corrected me about Interferon.  "It isn't chemo, Mom."


Chemo, in his world, means poison...and neutropenia, and hair loss and weeklong stints in the hospital, nosebleeds and vomiting. With Interferon, we are making daily trips to the outpatient clinic after he finishes his classes at school for infusions of something that is a bit different.  And to Brent, this distinction matters. Kind of a lot.


I wasn't in a great position to argue with him, as I explained, because I hadn't done much in the way of research on this.  Brent found this positively shocking, because I am always reading up on the latest research that comes my way. 


I explained that my research on interferon was limited to listening to the opinion of all of the doctors that we had contacted and consulted.  They were all in agreement about this course of treatment for him. I had learned about other treatments of course, but these were for more advanced disease than he has.  These other therapies are not appropriate for Brent, sort of the equivalent of dropping a bomb on a city that has a couple of criminals in it.  We would learn more about Interferon when we went in.


So, when we arrived, I asked Dr. Stearns to clarify for us. "Is Interferon considered chemotherapy or immunotherapy?"


He smiled with a twinkle in his eye, and responded "Yes."  Because it is a bit of both, killing melanoma cells as well as causing an immune response to be mounted against them.  Well, then.


I always aspire for clarity.  But for Brent, calling this chemo is problematic.  We settled on Chemo-Lite, given that it will be much easier than the very harsh treatment that he received for osteosarcoma.  If calling Interferon 'treatment' rather than chemo makes this more palatable to Brent, well, 'treatment' it is.


While the semantics do not change the truth of what we are doing, it does change his perception of it.  His focus is on the ways that this is far easier than what he has already done, rather than on the ways that this is hard.  I do not want to in any way minimize what he is doing, but I can certainly embrace his philosophical position.  This is doable. This is manageable.


Most importantly, this is what Brent must do to get better, the microscopic cancer mop up. Call it whatever you like.


And I have always said “Whatever gets you through.”  

It is a great time to be a mutant (if you have to be a mutant)

I was driving Brent in to the hospital on Thursday afternoon.  It was the last day of school before Spring Break and Brent was going to get his drain out, which was most welcomed.  After telling me all about his day, Brent asked about mine.


"What did you do today, mom?"


Well, among other things, I had watched a webinar about metastatic melanoma.  There is a researcher out of MSKCC that has grabbed my attention in the round about way that my life works.  When a webinar featuring Dr. Jedd Wolchok was posted on my news feed, I registered.


I suspect that stay-at-home moms were not the target audience, given how science-y it all was, but I found this thing to be absolutely riveting. There are promising things in immunotherapy, specifically with regard to melanoma, but these ideas can be applied to other forms of cancer as well.  I am very encouraged.


In sharing some of the things that I learned with Brent, I spoke to him about how much has changed, even since I first learned about Li-Fraumeni Syndrome, just ten years ago when Lauren was diagnosed with adrenal cancer.


Ten years ago, they were just starting to test families who they suspected had Li-Fraumeni, for a p53 mutation, in order to identify which family members were effected.  Prior to that, parents could only wonder and worry that they had passed this cancer predisposition to their children.  I would still be worrying about Alex and Olivia, had the genetic testing not proven them to be genetically sound at P53.  They have the same cancer defense as everyone else.  This scientific advancement has directly benefitted our family, eliminating half of our worry.


But even five years ago, if you did the testing, there was nothing to be done with the information for people with a positive result for the mutation.  Brent was diagnosed with osteosarcoma in the fall of 2011, right after the Toronto screening protocol was picked up.  By using this screening guide, we began the proactive hunt for cancer, finding Lauren's brain tumor early, before it caused her bigger problems.


This same protocol picked up Brent's current cancer, melanoma, long before we would have suspected that he had a problem.  While I am not happy about the fact that we are on our fourth pediatric cancer, or the fact that Brent has a year long treatment, I must to concede that the screening protocol is in fact working.  We are picking these cancers up in the earlier and more treatable stages.


I shared with Brent about a study that they are doing at the National Institute of Health, which is trying to determine if using an existing drug, used off label, will help prevent cancers from developing in the first place.  I am going to meet with the researcher next week to talk about this.


The research keeps moving.  At first they simply identified families with likely genetic predisposition.  Then they identified the gene that was mutated in all affected family members.  They are now trying to get ahead of the cancer, by screening for it.  The current research seeks to prevent cancer from happening to begin with.


Brent asked if this progression was like the diseases that were deadly 80 years ago, but we have vaccinations for now. If you were to get diphtheria back then, you might die.  But now, people do not get often get diphtheria, because of vaccines.  And if you do get it, it is much more treatable with antibiotics.  I am hopeful about this notion, and hopeful that we are on the very edge of similar advances in cancer.


I told Brent that when he was first diagnosed with osteosarcoma, I was overwhelmed and afraid.


"I was afraid too, mom."  This is the first time he has said such a thing to me. "But it is a great time to be a mutant... if you have to be a mutant."


I like his optimism, especially at times when mine falters.  We move forward...always forward.


 

Opera to polka

I am sitting here listening to Olivia singing to Dan, the pair of them making up songs. What Dan lacks in musical ability, he makes up for with enthusiasm and humor. Today, I am living in the midst of a comedic opera or Broadway musical, written by two children.  Dan may be 46 1/2 (as the current song lyrics proclaim) but he certainly has a young heart.  They both just make me laugh.


We are singing in our house this morning, because the pathology on Brent's lymph nodes came back clean yesterday.   He will do a year of chemo, but we do not have to figure out a solution for the radiation recommendation that further node involvement would have brought.  So, we celebrate, joyfully.


It has been a long, and rough couple of weeks. 


Last weekend, the day after Brent was discharged, we helped celebrate the life of Dan's grandfather, who had died. I was anxious when we last visited him in hospice. I worried about how the kids would deal with this loss.  The added layer of uncertainty with Brent's most recent diagnosis made this even more complicated.  In my own mind, at least.


The short of it is this:  Alex and Lauren got up to read at the service.  Brent, despite having a four hour surgery on Friday, participated with Olivia and his cousin Evan, bringing up the gifts in church.  There was sunshine the day we buried him, even if it was bitterly cold.  I have thought a lot about 'Pa.' naturally.


One of the many things that really spoke to me about his life was this:  When he was born in 1923, he weighed only two pounds and 11 ounces.  They put him in a shoebox and told his mother to take him home and enjoy him as long as she could, which was not supposed to be long.  They kept hot water bottles with him, and he went on to live... to marry, to see his children and grandchildren marry.  He even saw some of his great-grandchildren enter high school. 


I would love to see the Vegas odds on a baby, born at less than 3 pounds, living to the age of 90, even with today's technology. I wish I could have placed a small wager on 'Pa.' 


And while Pa's mother certainly must have worried in the cold of that November, and surely she had moments of despair, she eventually saw him grow up, marry, laugh, and famously play the accordion.  This is a favorite polka, from a man who took enormous delight in the company of others:

In Heaven there is no beer
That's why we drink it here (Right Here!)
When we're gone from here,
all our friends will be drinking all our beer!


I smile, remembering my children's proud Croatian great-grandfather.  I think about his mother, who I never knew, and appreciate that without her struggle, I would be absent my most treasured blessings in the form of my husband and children. We never know how far the ripples of our actions travel. 


I am very grateful for the struggles of a woman that I never met.


And tonight, I will toast her son's memory with a polka and a beer.


 

We do what we must

In a zen moment, I said that we will do what we must.  Then, I waited to learn of the pathology, to see which way the road would veer.

They found a nest of melanoma cells in one of the sentinel lymph nodes.  So, a sharp left turn.

This will mean yet another, more extensive surgery, and a full year of treatment.  This will mean beginning the cancer clock over again.  This will mean dealing with the uncertainty and worry about whether the treatment is working.  This will mean less confident scan days.  Again.  

Somehow, I am not completely out of my mind.  It is curious to me, the relative peace that I have. If I am honest about it, I wonder if it is faith or fatigue. We have had relatively short periods of time between medical upheaval. It has been little more than a weekend furlough. So, it might just be fatigue. But, I have also been working on faith, which I struggle with.  Let's just call it even for now.  

At one point, overflowing with snark, I wondered if I was supposed to perfect my response to the statement "Your child has cancer." We have done this four times now.  Four.  I would like the score between them to remain tied, at 2-2, forever. They say of a tie, that it is like kissing your sister.  If so, Brent should pucker up.

While I have had something of a temper tantrum over this, my son seems to soldier on pretty well.  He is a teenager now.  He does not go into this with ignorance or inexperience, as he did when he was eleven.  Brent knows what chemo is.  He knows what surgery means. He can evaluate the merits of a port vs. a PIC line.  Where there is room for his preferences, he is making them known, and I am am working to accommodate them.

His greatest desire is to be in school with his friends, of course.  I am working out the logistics so that his treatment has the lowest impact on his attendance. But every cancer is different, as every patient is different, so it is nearly impossible to plan.  However, I have been working on various options. Having options is a good thing.

I have always encouraged independence in my children.  Alex works things out with his coaches and teachers.  From an early age, we have encouraged them to work things out with each other.  I seldom arbitrate. The older ones negotiate three ways, as they divide their household responsibilities, in a manner worthy of a future at the UN.

Our job as parents is to make ourselves irrelevant.  We are not unimportant, but our kids function quite well without us.

Brent turned 14 last fall.  He will begin to drive in a year.  He will be off to college before I know it.
As you send your child off to college, they need to know how to do laundry and balance a checkbook.  I also need to educate my children on how to manage, and be medically independent.  By necessity, Lauren and Brent have become adept at enduring their various scans solo.  They do not need my encouragement to get labs drawn, IV's run, or blood products administered.  Brent can navigate the maze of the hospital to half a dozen different departments completely on his own.

I am hoping that this is Brent's last bout of cancer before he graduates. (Hell, I am hoping that this is his last bout ever, if I could be so greedy)  I suppose that he should be more responsible for driving this time, with Dan and me in the passenger seat to help guide him, on his cancer learner's permit.  He needs to learn to answer (and to ask) more questions, with us just supervising.  He is a bright kid, and I know that he can do this, I simply wish that it weren't something he were required to do.

Our goal as his parents is to make ourselves irrelevant, in baby steps, in all things.


We do what we must.


   

Life-Work Balance for a Stay at Home Mom.

I am ready for the weekend.


Work has been busy.  I am in charge of two divisions: medical and domestics.  In the past several weeks, I have fairly handed over the reigns of the domestic division to Dan.  He, I should point out, has a J-O-B of his own, with drawings, and meetings and deadlines.  But, he has been pulling double duty, saint that he is, as I have fairly abandoned my domestic responsibilities.  This is because the medical division is hopping, unfortunately.


I had a business trip to NYC.  Our meeting was fantastic.  Dr. Healey was smiling and satisfied, which is most reassuring.  We chatted about a few things, and as we finished up and parted ways, we were told that Brent's next follow up would be in a year. We have never gone such a length of time between appointments, which is a solid victory.  Brent was fairly skipping on our way out.


We went to a movie in celebration.  By the time we returned to Ronald McDonald House a few hours later, my phone rang. University Hospitals was calling.  They found melanoma in the sentinel node on the left side. Brent needs more extensive surgery. And treatment. For a year.


Go ahead and swear, because I certainly want to.


As we travelled back to Ohio, our Angel Flight pilot chatted with me a bit while Brent snoozed in the back of the plane.  He told me a story about how pretty early in his career, he was very driven, but was cautioned by an older friend about the value of punching out and making family a priority.  This friend spent Christmases with the pilot, rather than with his own family, because, as he confessed, the kids grew to hate him.  It made quite an impression on the pilot, who sold one of his businesses and cut back on his hours, with absolutely no regrets.


So, my job has been busy this week: travel, paperwork, correspondence, research, phone calls....  I may have mentioned that I have not been terribly engaged prior to this trip, and rather distracted.  Dan, ever my rock, has been planning a very important birthday party.  Olivia turns 6 tomorrow, my favorite Valentine's gift.


I woke up this morning, and thought about all of the things that I needed to do, which is a lot. Dan has put together plans to make Olivia's birthday a special one.  Considering the fact that I missed it entirely 2 years ago, and only arrived in the evening for it last year (both times at MSKCC) I should be right on board with him, a partner in making it special.  I have been very busy with work, no different in some ways, than the friend of the pilot.  Granted, I am not driven in my 'medical job' by the desire for material things, but from Olivia's tender perspective, does it matter?


So, this morning, I snuggled with Liv as I woke her up for the last time as a five year old, giggling and teasing.  We took our time getting ready and I drove her to school.  When the kids get off of the bus today, I am going to punch out for two days to celebrate the gift of family, and particularly the gift of my youngest.


And I am very grateful for my first Valentine, who drives the train when I disappear either physically or emotionally.  Dan means the world to me, and to our family.  He has always had a good life-work balance. I keep finding my way back, because of him.