'Mayberry' no more

Yesterday was Brent's 15th birthday.  I looked at him with bewilderment, like so many other mothers do as their children morph into adults, right under their nose.  I remembered his birthday three years earlier, as his hair fell out at the beginning of his osteosarcoma treatment and as I worried about our collective future.  Today, we have much to celebrate and so much to be grateful for.


Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month.  Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy. 


We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma.  Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.

To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event.  He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people.  He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.



We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.


The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives.  They may have been unaffected physically, but certainly have not been spared emotionally. 


http://vimeo.com/107935878


Then Dan and I watched the bidding, as the research dollars were collected.  I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general.  I believe that the bad news too often gets the attention.  I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.  


I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved.  I shared the basic outline of our story, of our four pediatric cancers.  She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?"  I assured her that the kids were doing fine, melanoma treatment withstanding.  Really.  Truly.


But today, thinking about it, I know that the better answer lies in having faith.  I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge.  But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next.  I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution.  It reassures me, and helps me to cope. 


It gives me hope.


So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith.  Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy.  It was a celebration.  An affirmation.  A gift from God and an answer to countless prayers.


While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point.  I am both grateful and hopeful.


The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.




Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.

Mutant Mentality

I was walking the dogs with my daughter Lauren, to stretch out her sore muscles from her recent foray into cross country.

We have long been talking about being thoughtful, and developing good habits.  Mostly, these have been tangible or outwardly visible habits:  eating healthy food, exercising our bodies and minds, spending time in service to others, both in our family and in our community.  Like running, it is hard work at first.  But with practice, we do not need to think about these things, as they simply become incorporated into who we are.

Last week, however,  I spoke to Lauren about her mental habits, the ones that go beyond developing an intellectual curiosity (my kids are daily encouraged to read 'something smart' that is not covered by doing homework)  While I can check in with Lauren to see how she understood an article in the newspaper, I cannot as easily see the mental dialogue she has going on.  After she joined cross country this fall, I have gotten a glimpse of a mental muscle that needs stretched and strengthened along with her quads and hammies.

We talked about how on the back stretch of the course, when the sun is hot, the encouraging crowd is sparse and her body begins to rail against the run, her mental dialogue is, unsurprisingly, fairly negative.  She is tired, and sometimes she walks a bit.  I do not mind the walking, for the record.  But we talked about how the thoughts in her head influence her actions in those lonely parts.  In order to get better, to be stronger and to win--not the race overall, but to win the competition, the one that really matters in my opinion is the one in her mind--she needs to be disciplined in her thoughts.

Over time, repeating the affirmations ("I can do this."  "I am getting stronger." "The crowd will be around the bend to encourage me." "There are those ahead of me and those behind--I am not alone") and repeating the motion of taking one step, then another,  both of these things will become habit, not worthy of the monumental effort that is required to accomplish it now. 

Focus on the good, always.  If you focus on a problem, let it be only in order to fix it, otherwise it is wasted energy.

I was reminded of our conversation as I checked in this morning on the LFS support group that I help a friend administer.  A woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times.  I thought about how many people in our group have benefitted by sharing our experiences, particularly our successes and the successes of the researchers that we deal with.

Our individual stories may be frightening and overwhelming.  But through this support group over the past year and a half, I have seen a change in the collective mental dialog.  Instead of LFS being considered a death sentence, and one to depressingly bewail, waiting for the next cancer to arrive, there has been a shift, to cautious optimism, with encouragement coming across the internet in the lonely back stretch.  The prevailing theme is one of determination, and hope.  And action.

When we give voice to our fears, we can begin to conquer them.  When we are tired,  tired of cancer, tired of fighting, we can reach out for encouragement. For compassion. For ideas.  For information.  For resources.

We have begun to change the culture, that place in our brains that focused on futility, and despaired of our 'predisposition' to cancer, twisting its meaning to become 'predestination.'  While death will come to all eventually, and cancer is likely to come to us, we are now facing it on our terms.   There are meaningful and effective things to do, both in our personal battles, as well as in our community. 

We are now doing them together.

While every day cannot be a raging success either on the mental or physical front, we are collectively improving on both, becoming stronger and more proactive.  I am proud to be part of this change.  I am grateful to be part of this community, cancer aside.

We are busy Living LFS.


LivingLFS.org

Milestones and Statistics

I haven't written in a while. This could mean that there has been so much going on medically, that I have been too busy and full of worry to empty my head here. I am most happy to report that this is not the case. 


We have had a summer. A delightful summer, with sand and sunshine, non-medical travel, time with friends and time to heal.  It has been terrific, stringing these days together, these days that were hard earned.  I couldn't possibly tell you how wonderful it has all been.  There just are not words.


Last week, Dan and I celebrated two milestones.  We have now been married for 19 years, which isn't one of those anniversaries that most people note, as it fails to end in a 5 or a 0.  But, I recognize that our relationship is nothing to take for granted, so I do note the milestone.  It is a blessing, not unlike the long summer days that we have been enjoying. 


But, like the blessing of our much anticipated summer, our time together has been hard-earned.  The stresses on our family have been great, if I might be so understated.  I recognize that cancer has forever altered what I envisioned our family.  If I were married to that vision, rather than to my husband, I would be bitterly disappointed, and most unhappy.  While I could do without cancer, I am most grateful for my husband, our children and the life that we are making every day together. It is not at all what I planned, but wonderful, nonetheless.


The second milestone happened on Wednesday, which was scan day for Brent and Lauren.  It was a long day, one that required much mental fortitude, but ended in good news.  Brent achieved 'event free 2 year survival'  for the osteosarcoma which, if you put much stock in the statistics, is a very, very good thing.  While the whole melanoma episode was quite an event, it does not factor into this equation: Brent has not had relapse of osteosarcoma for the two years since he completed treatment, which is statistically relevant.


I have sworn off statistics.  Dan and I absolutely should not still be married, if you embraced the marriage numbers.  They are pretty bad for the average couple, but are far worse for families with challenges like ours. Statistics, I have long said, do not matter.  However, I did find that I was heartened with the news on Wednesday, well beyond the whole "neither kid has cancer" notion.  I am feeling more confident as we stretch out the time between chest CT's.  I am a firm believer in "whatever gets you through." and if these numbers are helping, well, I may be a hypocrite, but I will selectively grab at the encouraging statistics and ignore the unhelpful ones.


We are in full swing now, gearing up for school which officially begins in a couple of weeks, although Alex is already gone much of the time for soccer and marching band.  I am grateful for another span of time to enjoy without much medical interruption.  Maintenance treatment for melanoma allows much time for living.  And that is what we are doing.  We are making new dreams, and alternate plans.  Different, we have decided, does not equal bad.


I am grateful for the opportunity to dream, for the relative medical quiet, for the milestones, for all of it.