Fighting for our Family

NOTE: I have updated the information on this page as of 8/19/14, since circumstances have drastically changed. Please read the full message for the update. Thank you so much.

There are many important things in this world, and to me, nothing is more important than family. My husband, Toby, and I were blessed - after several very rough years of trying to conceive - to have our son, James, in 2011. He was born happy and healthy, and completed our family. Now, as he approaches three years of age, he continues to fill our home with humor, laughter, kindness, and love. Our child is a miracle, and we are thankful for him every minute of every day.

This is James now - our amazing, bright, handsome little boy. But he needs help. WE need help.

In late March of 2014, we learned that due to several chronic ear infections, James has lost some of his hearing. He has lost about 40% of his hearing in his left ear, but has lost 75% of his hearing in his right ear. Despite the fact James is an extremely verbal child, his speech is muffled, and he is frustrated because he cannot always say what he wants to say. He is also in constant pain and needs antibiotics frequently. Surgery will correct most of the problem, since his ENT has assured us that tubes in his ears will help his hearing significantly. But without those tubes, James will continue to suffer from chronic ear infections (he has had six in four months) and could potentially lose his hearing.

Thankfully, James is scheduled to have surgery on Tuesday, April 8th to have tubes put in his ears (as well as to have his adenoids removed, which will also help with some issues involving infection). But our insurance company doesn't want to help as much as the doctors do. We have an exceptionally high deductible, and surgery to help James is going to cost about $2000. If we do not have a pre-op, surgery, and follow-up care quickly, James is in danger of permanently losing his hearing.

(James post-surgery, July 2014 - a healthy little shopper!)

In the case of our son, we were quite lucky. At the very last moment, we raised just enough to cover what we needed to pay on the day of his surgery. While we still owe about $400 to his doctors, his surgery occurred without problems, and now - at almost three years old - James only has mild hearing loss, hasn't been sick since surgery, is able to attend preschool again with his peers, and is starting to speak clearly. He is participating in speech and language programs since he lost so many months to his hearing deficiency, but James is doing extremely well, and we are all grateful for the help we received.

But unfortunately, that's not all.

(Relay For Life in Westminster, MD, May 2014)

Last August, I - Mandi - was diagnosed with thyroid cancer. Since my total thyroidectomy in November 2013, I have been hospitalized nine times, been in a coma six times, and am still fighting. I receive frequent treatments and medications for a type of cancer that I was told would be "easy" to send into remission, and have seen or talked to world-renowned specialists who have told me my thyroid cancer and subsequent issues are among the rarest they have ever witnessed. I used to be an opera singer and vocal teacher, but am still fighting to regain my own voice. I am nauseated, dizzy, cannot work, and am sick enough now that James is aware that I have serious problems. It is utterly heartbreaking to hear my son cry for me on the days when I am stuck in bed or on the couch -  and to have him come up to me, say "Mommy, I don't want you to be sick and see doctors," and watch him try to take care of ME when I should be taking care of HIM.

On August 14th, 2014, I received word that I have 12-24 months to live. There's a chance I won't see my son go to kindergarten. I won't spend ten years with my husband. I won't see the age of 35. And while I still haven't emotionally processed this, it's a reality. My last hospital visit, from which I just came home on August 16th, confirmed this horrid truth. My thyroid levels are so absymal that I will continue to fall into myxedema comas and, at some point, not wake up. The other possibility is that my organs will simply stop one day, and despite the fact that I try very hard to maintain the healthiest lifestyle possible for myself, I will have a heart attack. The body simply cannot live without the hormones the thyroid produces. And my body, which is riddled with about three dozen illnesses, does not absorb thyroid medication orally. I need IV or IM forms of thyroid medication, but my insurance company will not cover them. Therefore, I have to make a choice: I can pay $1300 a MONTH (or $15,600 a year, which I need to pay up front) out of pocket for the medication and live a bit longer than two years (but be homeless), or I can forgo the cost, live the most and best I can now, and die before 35 from heart failure or a coma.

(August 14th, 2014 - not even close to as healthy as I was during Relay For Life three months earlier. Picture taken to show my doctors the "coma blue" - the fact that my lips turn blue on the corners when my thyroid levels are drastically off-the-charts. You can see that staining, which has become permanent, here.)

I'm not ready to die, and my doctors are petitioning my insurance company by filing appeals to see if we can obtain help at a reasonable cost. However, the cost is still going to be excessive, and we are financially in the hole due to my treatment. We will never climb out of this hole without help.

James is doing well. My husband is doing well. And I am bringing them down. I want to experience life - either my last year or two of it, or longer if proper medication can be received and actually helps me - but we don't have the money to do anything. People keep telling me that I should travel, or take James to memorable places - things that he'll remember doing with his mom if she's terminally ill - but I can't afford treatment to live to the fullest. I don't know what to do. This is a serious cry for help.

Please, if you cannot help monetarily - and I fully understand if you cannot - pass this along to others. I don't have a way to go viral like an ice bucket challenge or something fun (I wish I did!), but in support of those with thyroid cancer everywhere - and in support of those who are looking at a life expectancy that is horrifying - please consider my family.

From the bottom of my heart, thank you all for reading, helping, donating, and/or spreading the word. Our family feels only gratitude for your kindness and support.


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Mandi Earp Hayes 
Reisterstown, MD

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