Sitting here with my daughter Ashley (Ashley Chandler) at Florida Cancer Specialists (Cape Coral, FL) getting a chemotherapy treatment for her Multiple Sclerosis has brought me to tears ... reality has hit once again after first hearing the Doctor at the hospital say the words, we have a diagnosis, "she has MS". Now seeing her getting this Ocrevus Infusion in a room with so many sick people hurts my heart for her & them all and pray for wellness soon. This is the only FDA approved treatment for Progressive MS (which she has) so this is her only hope to stop the disease from progressing and from future lesions from forming. She currently has approximately 28 brain lesions and several on her thoracic spine.
To backtrack, the past few years for her and her family have been rough to say the least...
Ashley is a beautiful, college educated and caring young woman, just 35 years old. She had been working up until she & her husband had a beautiful, healthy son in September 2012 and they were planning to have a second child so that she could then return to work once they were both in school. In March 2014, their second child was born, an adorable little girl...the delivery was the beginning of Ashley's struggles...she had to have a C-section and the spinal block didn't take so she endured surgery screaming in pain. Such a traumatic event on what should have been only a beautiful memory.
Shortly thereafter, in September 2014, Ashley had her first back surgery after rupturing a disc (L5/S1) and having a Hemilaminectomy. Then later that same month, she had to have a second surgery (a Discectomy) to remove portions that were pressing on her nerves. After this surgery, she experienced pain & numbness throughout her right leg and foot, to the point if something touched her that she would scream in pain & cannot wear a closed toe shoe (to this day), as well as severe back pain. Back to the Neurologist to be told she needed a fusion this time, so in January 2017, she had her third and final back surgery. They did not fuse however but rather did another Hemilaminectomy. Thinking she would FINALLY have some relief, this didn't prove to be the case :( She STILL suffers to this day with these issues and has been told she will just need to deal with it as best she can. In hindsight, she has been told that most of what she experiencing is resulting from her MS, all the nerve damage causing this :(
In May 2016, Ashley went to the ER with symptoms of food poisoning
, as a matter of fact, she knew that evening after where we ate that she had this but they hydrated her and said that this would soon pass. I could write a book on the next year and a half about this alone, she was soooo very sick from this...we now know that the reason she couldn't rid the salmonella from her body for a YEAR & A HALF was because of her weakened immune system from the MS but she was deathly ill most of this time :( All throughout this period she had to go to the ER often and once by ambulance as crashed in her bathroom & was completely incoherent...the EMT's couldn't even find her blood pressure :( a very scary time for sure & this was happening quite frequently. She was admitted four times and significant testing was done (keep in mind she told them she knew she had food poisoning but no one tested for that). Each time she would visit a physician or hospital, she advised she knew she had food poisoning but NO ONE would test her! It wasn't until the last ER visit where they FINALLY swabbed her for this and guess what? Yup, she tested positive for Salmonella. This made me sick to hear for her, she suffered for 16 months when she could have gotten the care and rid this in weeks.
Two years ago (08/16), my Son-In-Law lost his job of 17 years due to no fault of his own :( He was the only wage earner in the household because of my daughter's medical condition. He secured another position but not until October 2017, where he and the children are on medical insurance offered through his employer but due to the cost ($860/month just for spouse coverage), Ashley has none...this is the first time in my daughter's life that she has been uninsured.
Her husband was hospitalized March 2018, in Intensive Care after having brain surgery to remove a tumor on his pituitary gland. He was unable to return to work for 3 weeks and had no income during this time. Talk about another set back. These two just keep getting kicked while they are down...and desperately need a break. (He must now go every 6 months for an MRI and if any regrowth will need radiation to rid this.)
This last year with my daughter being so very sick and then having this diagnosis of MS and having NO INSURANCE has proven to be a nightmare, as you can imagine. Our family has all pitched in to self pay for several medical appointments, to include Neurologists, Neuro-ophthalmologists and Internal Medicine Physicians...we just cannot keep doing this at $300+ each visit :( The Neurologist that is highly recommended to manage MS does not even take clients without insurance...this is so disheartening when we are experiencing care where they do not have the level of expertise with this disease but having no other option but to accept this and pray for the best. At least she no longer has double vision (she was having to wear an eye patch for a month and concerned she was never going to see right again) and has a bit better balance, not nearly falling with every step. It has been determined that she has had this disease for 2-3 years so the damage that has taken it's toll is significant and will take some time to heal. In the meantime, she is dealing with extensive fatigue, feeling disoriented & drunk-like, along with the muscle pain & weakness. This condition also brings with it anxiety and depression that is heartbreaking.
The things we do for our children, this is one of them...no matter how old they are, they are forever our babies and we'll continue to look out for them to help however we can. My daughter was adamant that she did not want a fundraiser done for her, that somehow they would get by...but sadly, now it is to the point where I am humbly begging for her for help, they CANNOT DO THIS without help and her health must be priority right now. There is no other way for them to bring in extra income. Their mortgage must be paid every month, the children (now 4 & 5 years old and in school) have needs that must be taken care of, they have older vehicles that mechanical upkeep is desperately needed on...but the money is just not there :( Thankfully we are a very close family and we & my parents (at the age of 76) care for the children as often as needed when she is sick and we have meals together to save on costs.
****The actual medicine for the treatment of her MS is $172,000 for the first 6 months and after that it is $43,000 every six months...THANKFULLY the pharmaceutical company is covering this for her! What is needed is help with the cost to have this drug administered, which will cost thousands of dollars, and she does not have this :( In addition, there are MRI's needed to measure healing or more lesions, lab work and medical appointments.
She has applied for Social Security Disability Insurance and has been denied 3 times so has appealed this and praying this comes through, but it could take 12-18 months for a hearing she was told. If approved, then Medicare will kick in two years post approval date. At least to know in a couple years she will have this though at least gives her hope in the future as her MS will need managed for the rest of her life. All she can do is to try to reduce as much stress in her life (which is hard to do when you have all these financial worries on top of concern about your health) and stay out of the heat - these are the two biggest factors that trigger MS episodes and cause new lesions to form.
Many of you know me to be an animal advocate & rescuer but above all, I am a Mother and Grandmother who loves my family with everything in me. Ashley deals with being heartbroken that she cannot be the Mother that she wants to be because she is often so sick...and she is a phenomenal Mom that I am so proud of. I must remain hopeful for when she can enjoy life again and have a day where she doesn't feel as she has for the past few years.
Sorry for the lengthy explanation here and I thank you if you took the time and cared enough to read this. I am especially grateful if you are able and can donate to help her...ANY AMOUNT is truly appreciated! I know many of you would donate if you could so if you'd please share, thank would mean so much too! Funds are needed immediately and beyond what I have asked for help with but this would offer her the care she desperately needs at the moment. THANK YOU from the bottom of my heart! Keep those prayers & positive thoughts coming please!
xoxo Ann (Ashley's Mom)
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