Paul's Heart

Life As A Dad, And A Survivor

Donna’s Wish


I am so pleased, as I and others deal with the sorrow, as per the wishes of my friend Donna (who recently passed away from complications of her late effects from treatments for Hodgkins Lymphoma), and her family, husband Leo, and daughter Jasmine, that in leui of flowers, that a donation be made to a charity that would continue Donna’s efforts in support of those battling life after Hodgkin’s Lymphoma.
That charity is Hodgkin’s International. There is a “donate” button along with Donna’s story.

To donate in Donna’s memory, and to see what HI is about, please go to Hodgkin’s International at http://www.hodgkinsinternational.org

Thank you in advance.

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Donna – As Genuine As Could Be


I do not even know where to begin.

This is a photo of a mother, wife, a fellow adoptive parent, and a fellow cancer survivor.  Her name was Donna.

Donna and I first met, well over a decade ago, on an internet listserve for long term cancer survivors, which we both were.  She had been treated at a very young age for Hodgkin’s Lymphoma with an extreme amount of radiation therapy, though considered standard for the time.  Those treatments caused progressive side effects over the decades, in the beginning unknown, but later on life, not only aware, but severe in nature.  When we were first introduced to each other, my issues with late effects were at the unknown stage, so it was not late side effects that led to open conversations.

Donna and her husband had adopted a daughter from China, named Jasmine.  Donna had seen that in the signature of my posts, I had adopted daughters from China as well.  From there, since we could not share photos on the listserve, and it really was not proper etiquette to contact someone from the list on a personal level, Facebook came along.  And from there, that is where our friendship grew.

We shared a lot of photos of each others’ daughters.  We shared a lot of stories.  One thing that stood out in my mind, was when “Jazzy” as her father calls her, at a toddler age, was showing off for a video camera entertaining with a Brittish accent having a conversation with her mother.  It was hysterical, and very authentic.  And this friendship grew, as we watched each others’s girls grow.

In 2008, our friendship took a very hard turn.  My late side effects were suddenly brought to light in a huge way, emergency heart surgery.  I had been aware of Donna’s issues, though she rarely publicly spoke of them.  And if she did mention them, there were bad enough at that time for her to do it.  She was one of the first survivor friends to reach out to me, offering encouragement not only on my recovery, but with the new direction my survival was going to take.

Now, we were not just exchanging stories on our daughters, but now, seeking each other’s support for suggestions on how to deal with certain health issues, offer encouragement during a side effect event.  And for both of us, over the next several years, we both would be dealing with several events.

During this time, we both had family to take care of as well.  And we did most of it without skipping a beat, protecting our young children from knowing the harsh realities we were dealing with.  And for that, we would find our way back on Facebook, sharing more photos, more  fun times, more memories.

This father/daughter duo served as inspiration to me.  Donna would constantly share the musical escapades of her husband Leo, and daughter.  Performing here, performing there.  Such a great bond.

That is not to say or friendship did not have bumps.  As the title of this post suggest, “As Genuine As Could Be,” Donna was very genuine.  It was only one subject matter that could fire up our conflict, but one thing was certain, we both could stand our ground.  We would trade “comments” back and forth trying to convince each other that our opinion was not only accurate, but correct, in our opinion.  And let me tell you, that determination and strong will, definitely played a role in her cancer survival.  After we exhausted our argument, we would return back to what mattered to both of us, our daughters, and our survivorship.

I cannot imagine what Leo had gone through as a spouse dealing with someone facing these constant health crisis that would keep popping up.  I was a caregiver for my father, but as a spouse, I am certain it was different.  But I know that Donna loved Leo very much.  They were in photos constantly as a family.  But he also had to be there, to make sure that if Donna was unable, to relay information to medical personnel about Donna’s health history.  For better or worse, in sickness and health… their marriage endured.  And that is not something easily done without dealing with the extreme health issues of a long term cancer survivor.

I often find myself, ridiculed by some of my friends who feel that surrounding myself with others who have gone through what Donna and I have gone through, to be part of internet support groups that deal with late effects, can have an impact on my psyche as far as having a positive attitude, can only lead to living under a dark cloud.  As is proven by my friendship with Donna, nothing could be further from the truth.  Donna is one of perhaps a handful of fellow survivors still alive from when I first came across the internet.  Given my health, I know that does not bode well.  Regardless of her side effect issues, she was too young to leave this earth.  She is yet another parent I know, survived by such a young child.  Again, I cannot begin to imagine the grief that Leo is going through, all the while, having to make sure that his daughter’s emotional needs are taken care of.

I have written that I do not grieve well, or even properly.  But if there is one thing that will always stand out in my mind about Donna, she gave of herself, before for herself.  If I was dealing with an issue, she offered me guidance, all the while keeping her current issue silent.  Yes, there were topics that she definitely felt strong about, but it did not stand in the way of friendship.  More importantly, she was a great mother, and a great wife.  And she was a great friend.

Helping Those Affected By Harvey/Irma/Maria


For those of us that remember Hurricane Katrina and how it destroyed areas of Louisiana with flooding and devastation, we all had hoped that our country would learn to be better prepared for these natural disasters, especially in response.  Sure, hurricanes are unpredictable, we can accept that.  But as we learned this summer, after our southern states and territories have been pounded by three major hurricanes, we were still not prepared for proper response after the Hurricane Harvey hit Texas, resources dramatically thinned as Irma crashed into Florida, and now, the US territory of Puerto Rico, residents are US citizens, are impacted by governmental red tape, as well as the impact of FEMA being inadequately staffed and insufficiently budgeted, the effects now show.

I will be honest, I do not know what the budget for FEMA actually amounts to, and if there is actually a budget for so many natural disasters a year.  But clearly, vacancies in FEMA that still exist, reductions in funding, are leaving our country unable to respond in the event of an unprecedented season of multiple national disasters.

I cannot speak for Houston.  It seems like news coverage is now focused on Puerto Rico.  I intentionally did not say “rightfully so,” because after seeing the devastating flooding, and living in the hurricane zone of Irma, southern Florida, I know we are still cleaning up and are told, cleanup could take another 4 to 6 months.  While we had some flooding, it was nothing compared to Houston.  But as the media is concentrated on Puerto Rico, they truly are on an “island in the middle of nowhere,” which makes it hard to get help and relief.  Until this morning, a shipping restriction, called the “Jones Act,” restricted any non-US ships from carrying cargo into the ports of Puerto Rico.  This was preventing the massive amounts of aid needed for those in Puerto Rico.  My own opinion, I am still baffled by some of the restrictive decisions made by FEMA restricting air traffic in and out of Puerto Rico to either evacuate US citizens, or deliver aid.

So, what can we as individuals do to help?  Well, as Pitbull, Mark Cuban, and other notables are demonstrating, they are making a difference with the resources they have.  Obviously, they can afford to send their own private planes and offer other assistance.  But you do not need a million dollars to help.

I am certain you must be aware of hurricane victims getting ice and water distributed to them after a disaster like we have gone through.  This picture is the contents of a box prepared by a contractor for FEMA, which basically will feed an individual for a day, three meals and snack.  Not too sure how good the container of milk is, but it is stated that it was prepared to be stored at room temperature.  But boxes like this, are handed out at distribution sights.

Following disasters like this, many concerned people look for ways to help.  We are always encouraged to donate to the Red Cross.  But the one drawback to me, someone who wants to make a difference now, following Katrina, there was a likelihood that anything donated for Katrina, would not go to Katrina victims, but most likely stored in a warehouse for the next disaster.  What difference should it make who it helps as long as we help, right?

Puerto Rico is in horrible shape.  They need help now.  There is no time to wait for the government to follow steps and procedures and other bureaucratic red tape.  I felt the same way when Katrina hit.  Which is what this food kit reminded me of.

Years ago, I ran a youth group, and yes, it was during the days of Hurricane Katrina.  And the kids wanted to help.  Together, we all created “shoe box kits,” which not only had some non-perishable foods and water, but also supplies such as toothbrush, toothpaste, toilet paper, even some small games like cards to distract or toys for children who might be scared.  More importantly, the kids all wrote a letter to go inside the box letting the recipient know that they were not being forgotten.  And it was hoped that the box would give them hope.

Instead of sending these boxes to the Red Cross, we sent them to a church outside of New Orleans, directly to a minister, and asked if they had any kind of drive to help the Katrina victims, to make sure that these disaster kits were given out.  And they were.  We actually heard back, not just from the minister, but some recipients as well.  I could never have been more proud of these kids for taking the initiative to help other more than a thousand miles away.

We were not as famous as Pitbull or Cuban, but all of our acts show that one person, or a group of people, can make a difference, especially when response by official organizations may be perceived to be either slow or ineffective.  You can make a difference.

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