Sometimes life takes unexpected turns. Things happen that force us to stop and reevaluate what is important. We have to take a deep breath, count our blessings, then decide how to move forward.
As many of you know, my daughter was diagnosed with a massive, inoperable brain tumor in 2017. For those of you who don’t know, I wrote about it here.
It was Thanksgiving and she was 23 years old with three small children. That was one of those unexpected turns in our lives. So, we stopped. We reevaluated what was important. We took LOTS of deep breaths, counted our blessings, then decided how to move forward.
After listening to all of the ‘experts’ and doing weeks of research, she chose not to have surgery, or to undergo chemo or radiation. She chose natural treatments instead. She made drastic lifestyle changes and employed a variety of natural treatments that she continues to this day.
Her doctors thought she was making a huge mistake, then refused to see her anymore if she wasn’t willing to do things their way. Many family and friends thought she was making a huge mistake and let us all know on a regular basis.
She was bullied, insulted, questioned and ridiculed.
She ignored them and remained firm in her decision.
At first, we saw significant improvement. The tumor was getting smaller. She was thriving.
Then, life happened. A somewhat ugly divorce and custody battle happened. Too much stress and too many hours working to support herself and her boys happened. Stress happened. All the ground we gained slowly started to slip away.
It has been almost three years. In that time, we have watched with sadness as many others who were diagnosed with this same type of brain tumor died. In spite of surgery, chemo, radiation, and experimental treatments, they died. Their families celebrated when they were told the tumor(s) were gone, only to learn within a few months that they were back, each time more aggressively. They watched helplessly as their loved one deteriorated, many losing their ability to recognize familiar people and places as the tumor took away their memory, took away their motor skills, took away control of their body. It took them away. We saw clearly the results of standard medical treatments on this type of tumor, and were incredibly thankful that she chose a different path.
We knew going in to this that the projected life span once diagnosed was 3 years max. Only a few survived beyond that. 5 years was considered a miracle. We were unwilling to accept that.
We also knew that, because the tumor was so large and so close to areas of the brain that controlled her vision, her hearing and her memory, that one of those areas would be affected eventually. We were simply praying to buy her a precious bit of time. A day. A week. A month. A year. We would take anything we could get.
Thanksgiving day will mark her 3 year anniversary. Let’s talk about where she is today.
She is still alive and has full control of her body and mind, but we are beginning to notice some serious issues with her short-term memory. We take a lot of notes and she needs to be reminded of things frequently, but she still knows who she is. Who we are. Who her children and friends and family are.
She still has her hearing and vision, but her sight is diminishing daily. The doctor says it is due to fluid build-up behind her eyes, likely as a direct result of the tumor. There is nothing to be done about it. With effort, she can still read and see the bigger picture, but details escape her and she has to be careful when navigating unfamiliar areas.
She still lives on her own and raises her boys, but she gets tired easily and often needs help keeping up with them. Stress, fatigue and heat have a serious impact on her ability to function and bring on seizures. Fortunately, she is just across the yard and has a huge support system.
The seizures are more frequent than they ever have been. Some are big and some are small. The small ones pass quickly and just leave her a little tired. The bigger seizures leave her weak and unable to control her limbs or form words for a short period of time. They have robbed her of the privilege of being ‘normal’. She is never alone because the seizures come on unexpectedly. She can’t drive. She can’t be in the heat for too long. She can’t do a lot of things that most of us simply take for granted.
She has been denied 3 times for disability. She doesn’t get a welfare check. She doesn’t have insurance. She doesn’t get child support or alimony. She isn’t able to earn a paycheck. She is dependent on others for even the smallest of things.
In spite of all of this, she gets up every morning. She is seldom without a smile on her face. She finds a million things to laugh about, including this tumor that has changed her life. She asks for almost nothing. She counts every one of her blessings. She appreciates every moment with her children, even when they are making her crazy. She is persevering and living and enjoying every second she has been given. She has hopes and plans for the future. She fights to maintain for as long as she possibly can. She fights to get better.
We still spend a lot of time researching, digging through studies and treatments that have been buried by the medical establishment. We sort through case studies, medical studies from other countries, personal testimonies, new treatments being offered and their success/failure rate. We are still looking for answers.
Emotionally, this has taken a toll on all of us. Financially, it has made us tighten all our belt straps and decide what is the most important.
The last few months have been especially challenging as we try new things. Some have helped. Some, not so much. We have slowed down the seizures and learned what makes it worse and what makes it better faster.
But, we are also aware that there is a real possibility that everything can change in an instant. We know that we are all on borrowed time. We have all of her affairs in order and a plan, or a general idea at least, of what to do when time runs out. Her two youngest don’t really comprehend the situation, but her oldest does, as much as a 7 year old can comprehend something like this. He asks questions and we all answer them as honestly as we can. We face our fears together and remind him that, no matter what, his mommy loves him more than words can ever say and that will never change. Ever.
And, finally, after 3 years, my daughter has made one request. She wants to see the beach. She wants to play with her boys in the sand and surf. She wants to see the sun rise over the ocean and watch dolphins play.
So, that is my new mission. We are making that happen. We have booked a family vacation that we intend to make the best one known to mankind. We will surround Summer with her sons and her brother and sister and nieces and nephew and every other family member we can get in on it. We will take one week of our life and fill it with every fun, happy memory we can squeeze in. We will take a million pictures and videos. We will laugh and play and eat and swim and pretend like we have no concern for the future.
We have a lot of people asking how they can help, and the answer most often is that there is little to be done. We have been fortunate to have friends and family that help financially whenever they can. Somehow, we find a way and the Universe throws us little miracles. We are always grateful for every bit of that help and thank you all with every fiber of our beings.
From a practical standpoint, you can help out by sharing my business with friends and family. Especially now as we start some new treatments that promise to be pricey, while still trying make this vacation all that we want it to be for her. Share it on Facebook or Twitter or whatever media platform you use. We can be found at http://www.tamarasherbes.com
We ship worldwide. We accept all the major credit cards, as well as Paypal and Venmo.
More than that, though, you can pray for us. A lot. Send every positive vibe you can muster our way.
Love your kids a little more, for a little longer.
Remember that tomorrow is never promised to any of us and appreciate the little things.