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104 donations

"Help Us Help Daddy (Get Us a Home)!"


Dear Friends and Family,

It’s been awhile since we have posted any updates on our GiveForward fundraiser, "Help Us Help Daddy!" We hope everyone out there has been doing well.

Thank You!

First of all, we want to thank all of you for your continued support -- not just your donations but in other ways such as delivering meals, helping clean, and folding up laundry, visiting Charlie to cheer him on, and all your help babysitting! So many came forward to stay with our charming babies for hours on end so that I could be with my Charlie during that long hospital stay back in December and January. We would have never been able to bond without your love and support.

And because of your donations, we were able to cover so many medical expenses as well as those unexpected things that always have to crop up during busy times. All these months of Charlie’s recovery really could not have been done without you, so thank you from the bottom of our hearts.

His recovery was slow but seemed sure for awhile. There was pain, of course, but also the emotional and mental adjustment of everything that life was after his laryngectomy and glossectomy. He (we!) have had to learn new ways to communicate. But we've adjusted. The teenies can practically read Charlie's mind!

Slowly, Charlie began to be able to get out of bed, walk around, get at his desk to write and work on publishing projects he has had in mind for a long time. He decreased his pain medication and we made plans to move forward despite the cards life had dealt us.

We talked about homeschooling trips to take with our children. We thought about vacations and visiting what little family we have left. Charlie even began building beautiful bookshelves to store our millions of books.

Then the remaining half of Charlie’s mandible (jaw) began to bother him as parts of it began to dig upward through the tissue. His doctor recommended filing down the edges and stitching back over with tissue. We liked this idea but Charlie wanted more healing time first before having to go back under more knives.

But before he could get that time, his arm and shoulder began to ache and the pain radiated down his right arm and into his hand, causing weakness and limited hand use. An x-ray showed cervical disc disease but no cancer. Only NSAIDs and physical therapy were recommended.

Despite this, we went on with planning our life together. After all, as long as there wasn’t cancer, life was good!

Then out of the blue our car decided to die completely, making things extremely difficult. But it turned out to be a blessing in disguise. We found a terrific used car to take its place. To have it show up right during a time when Charlie wasn’t quite so tortured with pain and was able to go to Carmax with me to look and sign papers was quite a bit of luck.

And now we love the new one more than the old one. But even though we love the car, it really drained our already lmited and fixed finances. Northern Virginia is extremely expensive so we already hang onto every penny.

We haven't discussed this much. But after Charlie developed osteoradionecrosis in 2010, it got increasingly difficult for him to work, and in Apri 2014 lost his job teaching at The Art Institute of Washington. We had always feared it might happen, but it was a scary time, nonetheless. Charlie had planned on working a lot more years before even thinking of retirement. We still live in our apartment. How would we get by?

In one way, it was maybe fortunate Charlie had the necrosis, because he was able to apply for and quickly get Social Security Disability benefits, which relieved some anxiety. But a family of six doesn't survive for long on disability, especially in Northern Virginia.

The year before his surgery, Charlie had lost his mom after a lingering illness. Sadly enough, the last time I saw my mom was at Charlie's mom's funeral. One month later, my mom died due to complications from diabetes. It sure seemed cold and gray for a long time.

When his mom died, Charlie and his brother Lonnie, inherited the house they had grown up in in Charlotte, NC. Lonnie had moved there from his own home upon her death. Living on only disability, we had no choice but to pack up and move in with Lonnie, in a house with no mortgage payments.

Well, Lonnie balked. He wanted to live alone and didn't even want to think about dividing up the estate. It was difficult and contentious dealing with him.

Finally, after months of struggle, Lonnie and Charlie reached a settlement. Lonnie could keep the house and the negligible estate, and live there alone in exchange for a ridiculously low payout.

Charlie got the bad end of the deal, but his brother was never a stable, reasonable person. And we were running out of savings. We took the offer, just to not have to bother with Lonnie any longer.

At least in consolation, his brother promised Charlie that if he died before him he would leave their parents' home to Charlie in his will. Our next step would be to start thinking about buying our own home somewhere, sometime soon.

When Charlie received a shocking call fom Chatlotte police informing him that Lonnie was found dead in their parents' home in June 2015, we were soon doubly shocked to learn that in just days after Lonnie's promise, he had willed their parents' estate to his next door neighbor. We were stunned.

How could Lonnie do that to his only brother? I was so mad, and Charlie was overwhelmed with sadness and grief. He had no recourse but to try and fight, so Charlie hired an attorney in Charlotte. But after weeks trying to battle Lonnie's neighbor, while at the same time having to attend to his burial, it grew apparent that it was a lost cause. The neighbor was wiley and had ensured that the will was unquestionable. The case never even made it to court.

Emotional Toll

It's hard to always measure the emotional toll that overwhelming, emotional experiences can take on a person, but Charlie's experience with Lonnie set him back years, and I am convinced led in part to the return of Charlie's cancer. For in the midst of his struggle, Charlie's health deteriorated, he lost energy and his appetite, he was confined to bed, and that which we had dreamed to be only a further worsening of Charlie's necrosis led to his total glossectomy and laryngectomy in November 2015.

Despite it all, Charlie and I began dreaming of moving further out of Northern Virginia, to get our very own home, our FIRST home, in order to pay less. We thought, wouldn’t it wonderful to not only cut our living expenses in half but give our kids a yard to play in and more space to run? Not only that, it would be ours, all ours. Plus, with savings rapidly going to monthly living expenses, we've got to move. Move quick!

Thanks to our wonderful friend, Judy, from our church, who is a realtor, we were able to find a lender and were approved for a mortgage loan!! We are so excited! Judy also found us another realtor who knows an area that we were interested in Berkeley County, West Virginia, where a little loan can buy a lot of home.

But just as listings of very promising homes flooded our email, Charlie’s pain took its current turn for the worse. Now, in addition to his jaw, shoulder and arm, pain had traveled down to his lower back and right hip.

Not only that, lumps appeared on his chest and abdomen. He could barely move from the bed and was sucking down pain medication faster than I could get it refilled.

Before I could get Charlie in to see his palliative care doctor, his pain skyrocketed to excruciating levels and I was forced to have an ambulance take him to Georgetown University Hospital on Tuesday, August 9, 2016, the day before his 60th birthday, where, another CT scan was done, which initially only showed more disc disease.

No cancer.

Well, that was a relief. Until an MRI was done.

That one showed cancer.

It is in Charlie's spine, pressing on nerves and thus, the reason for the enormous amount of pain Charlie was experiencing. It has only been about a week since we were hit with this frightening news. Surgery and radiation are currently what are in store.

Charlie and I have agreed to the surgery but not the radiation just yet. We are afraid that if he is radiated in a spot where he’s already received radiation, he will get radionecrosis again and not be able to heal. Radionecrosis is why he had half of his mandible removed in the first place. And of course, that would mean loads of continued pain.

Our plan is to get the surgery, which is called a laminectomy, a procedure that will require delicate surgery to remove tumors that have metastasized between Charlie's spinal cord and T9, T10, and T11 vertebrae This will hopefully give Charlie some initial relief and prevent neurological damage.

There is likely cancer also at C7 and T1, which cause Charlie's right shoulder, arm, hand, and finger pain and numbness. For that, we are going to search new treatments options at different hospitals, as well as some alternative treatments.

One thing I absolutely despise is that when treatment is discussed, no one ever talks about the nutritional side of things and the importance of building the immune system. Georgetown has these posters everywhere that say “Cura Personalis” Care of the whole person. And I just want to stick my tongue out at those posters because at Georgetown it's really a total lie.

It’s hard enough for any cancer victim to keep up with the nutritional aspects but especially for those with feeding tubes. Those who rely on feeding tubes, like Charlie, have trouble getting in enough calories. Gaining weight is difficult and getting in enough vitamins and supplements on a regular basis is even harder.

So, this time, I want to find someone who can treat Charlie’s ENTIRE body. Or find someone who is willing to take up the nutritional side and provide him with vitamin therapy to go along with whatever other conventional treatment we may consider.

Moving Forward

And even though -- or especially because -- we are facing all of this, Charlie wishes to continue on our path of homeownership, to have something normal and secure and to provide for our family. But moving fast is paramount!

And while we are approved for a loan, will still have a down payment and closing costs and moving costs to deal with before we get a manageable, lower monthly payment break.

We also have another medical insurance deductible to pay this year and we're still trying to catch up with bills from 2015.

Also, I make all of Charlie’s food by scratch and puree it through a supercharged blender so that he can "eat" and get what supplements and nutritional things I have to order each and every month, which is an ongoing expense.

All of this not only helps Charlie but it helps us as well -- especially our wonderful children who love their father and want him to feel better.

Life has been kind of rough and we've taken a lump or two here and there. But The Lawings 6 still have each other, and the teenies and I still have our wonderful Charlie.

It's Charlie's mission that his family has a permanent roof over our heads. He is ill and concerned about getting better, but nothing consumes him as much as getting us into a home we can call our own and live out the rest of our life, Charlie secure in the knowledge we're taken care of.

So many of you have already donated so much of your very hard-earned money. Still if you, your friends, your family could find it in your hearts to reach out again, or if you know of anyone (or ways to connect with anyone) willing to help us out, we would appreciate it forever and ever. More than the space between the stars.

Thank you so much for listening!

Love, Nikki and Charlie Lawing, Christie, Charlotte, Bradley & Nick (aka The Lawings 6)!

Following is our new "Help Us Help Daddy (Get Us a Home)!" fundraising goal. And as always, no donation is too small:

Misc. Doctor/Hospital; Other Med. and Nutritional Expenses, 2015: $5,000

Medical Insurance Deductible, 2016: $6,300

Med. and Nutritional Supplements (e.g. vitamins, ointments, feeding bags, protein mix, weight gain), 2016: $1,200

Possible New Home Down Payment, 2016: $10,000

Possible Closing Costs, 2016: $8,000

Possible Moving Expenses, 2016: $3,000

TOTAL NEEDED NEW, 2016: $35,500

PLUS Total Donations (already spent): $11,827 (add-in to TOT. NEEDED)


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