Day 106 - Post Treatment, Still Fighting

It wasn't until I started writing this post that I realized I'm post 100 days after transplant. Wow. Already I feel like I've come so far, and yet I have so much more ahead of me; just thinking about it makes me queasy.

At the start of last month, I took on a major stepping stone; I went back to school for an online summer course. These last few weeks have been very difficult as I have no energy to do much, and I'm still dealing with some lingering side effects from transplant. However, the great thing about this online class is that I can do it at my own pace (for the most part) and it gives me something to do. If I didn't have that, I'd be extremely bored and most likely severely depressed. I'm not even allowed to go back to work until next year when my blood counts are back and I've gotten all my childhood vaccines again. At the moment, I essentially have the immune system of a newborn baby.

Physically I'm still very weak, which definitely has an impact on what I can and cannot do. I sleep for a majority of the time and have hardly any appetite. I've also been dealing with this pulsing sensation in my ears that just doesn't seem to go away. After seeing an ENT specialist, I was left with more concerns than I would have liked. He couldn't tell me if this was something neurological, vascular, or nothing at all...but he did have suspicions on whether it was related to the blood clot I had at the end of my transplant ordeal. Next month I get an MRI to check and see if there are any problems...if so, I might need surgery.

Needless to say, this past month has been emotionally difficult considering everything going on. My hair is starting to come back, and I've managed to lose 10 pounds since I was discharged, thanks to my waning appetite. I resumed my perfect attendance at my cancer support group and have even caught up with a few friends of mine. I even managed to go to a Celtic festival with my mom and sister for a few hours (I had been dying to eat some haggis since my trip to Scotland). Despite all these wonderful things happening, I still feel empty and low. I thought things would start looking better once I was out of transplant, but the reality is that the fear of relapse is ever more present.

Everyone keeps telling me to "Stay positive!" or "You're cured!" and "You can finally go back to normal life!"...and I'm really trying...but the PTSD from dealing with this transplant, and everything that has happened in these past 3 insane years, is starting to catch up with me. It's gotten to the point where I had to decide what I want to do with my life based on my health predicament. I've been avoiding the summer sun in fear that just the mildest burn could end my life. Every day I have a moment of panic where I quickly check my neck for fear of finding a lump again. I can't sleep at night, because I keep having nightmares where my transplant doctor tells me my cancer has come back and there's nothing left for me. Everyone has been complimenting me on my hair growth, but I can't even enjoy it since I fear for a future where I'm told that I will have to lose it all over again. I try so hard to repress the fears, but it's just too much. There are very few people who seem to really understand as well. It's frustrating to think that even after all the treatment I've endured, I'm still fighting...only this time for sanity and peace of mind.

Thankfully, I'm planning to take some time for myself and get away from home at the end of the month. I'm hoping to be in a better state of mind when I return so that I'm ready for the fall. In September is when the real showdown happens: two transplant follow-ups, a CT scan, and I begin the childhood vaccines. In the meantime, I'll just keep writing essays for my class and distract myself with the World Cup. I may never "go back to normal life"...I've already accepted that...but I hope that with time I can move forward and away from this nightmare. I just have to remember that there is still so much left for me to do and that even in my darkest moments, there's so much to be grateful for.

Anyway, I hope you all have a wonderful 4th of July, and I'll try to update again on here soon!

Day 14 - I Just Want To Sleep

It's been 10 days since my last post...and I've been struggling with how to follow up on my blog. Part of me feels it's too soon to say anything after the loss of Needa, but another part of me feels like there is never really going to be a right time...so I might as well give it a go. I'm struggling to just come up with the words to simply explain how I'm feeling because I don't feel like myself. Lately, I feel pressured to not let myself be anything but positive and optimistic. Emotionally, I've been rather numb since my last post. I haven't allowed myself to truly grieve and by doing so I wake up every morning trying to convince myself that it actually happened. My friend is gone and there isn't anything I can do to change that. I'm stuck in the acceptance stage of grief and will probably remain there until I come home. Until then, I can't afford to dwell on the issue.

Every day since then has been a serious challenge for me physically as well. My blood counts dropped to almost undetectable levels and my energy is completely gone. Simply putting on a shirt in the morning is enough to make me feel like I ran a mile. It got to the point where I had to accept the fact that I couldn't make the walk across the street and had to take a wheelchair to my appointments for two days. All I want to do is sleep...and I could if it weren't for the early morning appointments or the several different pills I take around the clock. I now live vicariously through the 10 alarm clocks I have set on my phone that tell me when to eat, when to take a pill, and when to sleep. It's insane.

The only joy I really get is seeing my caregivers rotating in and out. With every new face is a new adventure and a closer step to the finish line. I even got a little taste of that today when I went in for my appointment this morning and my blood tests showed a tiny increase in my counts. Despite it being a small victory, I was told that I could stop taking two of the pills I've been taking. What a relief!! Finally, I'm seeing some progress and a good indicator that everything is going as planned!

The only thing I need to look out for now is bone pain from the daily Neupogen shots I'm getting (same ones I had with the ICE chemo earlier this year)...which I have prepared for with a stash of oxycodone; thank God for pain meds! I also have to start keeping an eye out for any signs of GVHD which will most likely be starting at around Day 30-40. I'll probably talk more about that when the time comes. So stay tuned for more updates!!

Day 4 - Needa

I hesitated writing this blogpost simply because I'm struggling to find the words to talk about my dear friend Needa. But after sleeping on it, and realizing that the [metaphorical] lump in my throat isn't going away, I decided to dedicate a blogpost to her.

I met Needa at one of the lowest moments of my life. I had just found a new lump on my neck right after Christmas 2016 and I eagerly looked forward to attending my bi-weekly cancer support group at the start of the new year. It was obvious that the 3rd chemo I tried didn't work and I was starting to run low on options. So I went to support group on January 12 with a very heavy heart...but because Needa entered my life that day, I left my group with a friend.

Needa had triple negative breast cancer, a rare and aggressive form, but she could have easily fooled anyone. Not just because of her AMAZING wigs, but because she had the best attitude about it. She lit up the support group session with her infectious humour and her never-ending love for everyone there. She used to make fun of certain (non-cancer) aches and pains she was experiencing such as chin cancer when she hurt her chin or ankle cancer when she would twist it. I remember during that session I felt like my life was slipping away because everyone around me was getting married, graduating, moving on with their lives, etc. But Needa pulled me aside after group and made me realize that just because I have limitations with this cancer, doesn't mean I have to surrender anything to it. She pointed out that I fought for fertility treatment to preserve the possibility for a future family. She said, "Why stop there, Maddie? Fuck cancer! You've gotta live your life!" and then she asked if we could hang out sometime soon. It was the first friend I had made in support group who was single like me and knew the ropes that I was having to climb socially.

Sadly there were only two times she and I actually hung out (outside of group) due to our schedules this last year. The first was when our dear friend from group, Katie, arranged to have some of us go out and party in Rockville. Since I didn't have a mode of transportation there and back, Katie took me there and Needa drove me home. I remember laughing everytime we entered a wooded area or passed a farm because Needa kept saying "Geez Maddie! Where the hell do you live??" It was a long drive with no talk of cancer, but instead full of fun and laughter. That night, I didn't even feel like a cancer patient...I felt like me...because of her.

From that day on, I felt like I could go to her for advice on anything. We had a bond. Like the older sister I never had. She taught me so much about confidence and inspired me every time I saw her. Whenever I was low, she raised me up. A year after I met her, this past January, I was in the hospital for my final chemo. She came out to visit me and gave me a little present; Deadpool socks and a bag of Cheetos (she LOVED Cheetos). She was going to take me home when I was discharged (as were the instructions from the nurse)...but after grabbing my bags and running out of the hospital we hopped in her car and she smuggled me into our support group last minute. It's one of my greatest memories because she made me feel like my age and not my cancer. It also ended up being the last time I ever saw her.

Shortly after that, I found out that my chemo worked and I was preparing for a bone marrow transplant. All the while, I found out that Needa received the lower end of the stick. Her cancer came back, this time in the lungs, and she got pneumonia. While my health got stronger her's declined. Even after I messaged her to keep her head up as she tried to do radiation and chemo all over again, she was still rooting me on and promised to take me to the next Deadpool movie when I got out of transplant in May. But yesterday, I found out it will never happen. As Katie pulled up to my apartment in Baltimore to caregive for me, we both got the news that Needa passed away due to respiratory failure. We stood hugging on the sidewalk, crying in each other's arms. It didn't feel real. It still doesn't.

I almost wanted to deny it. How could someone so pure and full of joy be taken so quickly like that? She had her whole life ahead of her. My sadness quickly turned to anger. I realized this battle was actually a war and this cursed beast called cancer has claimed the soul of one of the strongest fighters I have ever known. Cancer doesn't discriminate...it feeds on the innocent and feasts on the best of us. And if there was one thing Needa taught me best, it was to never let cancer cast a shadow on your life. Live your life as best you can...have as much fun as you can....laugh....and be proud of the life you lead. She taught me to accept my life with its flaws but to see the beauty and potential there is. She gave me hope.

Needa, I only knew you for little over a year but I feel like I knew you a lifetime. That's how I know you were a good friend. And for your sake, I hope I can fight my own cancer back so I can live to see the day when this cursed beast finds its downfall. I hope to see justice for you. And yet...part of me still hopes that this is all just a nightmare and that I will wake up from it, see you standing by the door with the car keys to say "well...are you ready to go to support group?" ....Rest easy girlfriend, and know I'll never EVER forget you.

I Saw It Coming But It Still Hurt

Well, ladies and gentlemen, this is the update that I could have easily predicted would happen. After waiting a horrific week of mentally preparing myself for either the transplant or the clinical trial, I finally got the call from my oncologist with the results of my latest PET scan. As I had previously suspected, there was a small progression that occurred during the last two months. This means transplant is no longer on the table and once again my only remaining option is a clinical trial at NIH. At first, hearing the news was quite the shock and a complete let down of what I had been hoping for since returning from my trip. The thoughts and fears from the beginning of the year resurfaced and the very real fears of possibly dying from this clinical trial were enough to render me numb to any comfort anyone could give.

My doctor still remains optimistic going forward into a clinical trial. He stressed that there have already been good results coming from the CAR T-cell project in other countries and even in the US they have been successful using this technique with other cancers. However, the risks are still very real including neurological problems, cytokine release syndrome (which results in very high fevers and possible death), and it would mean I'd be monitored like a lab rat for the rest of my life essentially.

I wish having cancer was this cool...lol!

There is also the slight possibility that I may not even be eligible yet for the trial as it was a very small progression, and my estrogen levels may not be where they need to be yet since I only just restarted the hormonal therapy. However, I should be hearing from NIH at some point by Thursday to set up a consultation appointment to discuss what the general timeline looks like. If all goes well, I could be starting the trial by the start of January...which means I'll probably be doing testing (including my third bone marrow biopsy) over the holidays...yay. My doctor has already decided to take me off the current chemotherapy I was on since I need to be off any treatment for about 3 weeks before starting a clinical trial. This could result in a major progression of my cancer...which I'm seriously not thrilled about.

After I called to inform my parents of the news I decided to shut my phone off and go see a movie. I needed to focus on something that was not cancer-related. After that, I found myself just roaming around without a thought going through my mind. I found I just didn't care or have the motivation to do just about anything. I also just needed to be alone...and I was ok with it.

This morning, however, I find myself picking up the pieces slowly and trying to absorb the shock that I already sensed was coming. It's not like going into a transplant would have been preferable either...both options have pros and cons and both are extremely risky. So going into this clinical trial I need to rechannel my brain to focus solely on the pros. The first being, a shorter recovery period. The entire process can be done within a month's time. Since it's through NIH, I'll be monitored by the top specialists in the country. I won't have to lose my hair (at least I don't think I will...I could be wrong). Those are just a few to list.

So yeah....not the best update in the world....but I saw it coming. Some people will be like "I told you so" or "It's your own fault for going travelling"...but you know what...if you really knew me, you would know I was in no state of mind to take on ANY risky procedure before going to France. I wanted to spend time with family (especially family I hadn't seen in over 10 years). I needed to get away. I was getting tired of constantly sitting on the sidelines watching life go by and letting cancer dictate what I was supposed to do. So instead I made 2017 my own. I made new friends. I took part in the historic Women's March. I learned more about history and read more books. I travelled both to Europe and to the Caribbean through the help of AMAZING and LOVING friends. I made dreams come true. I learned more about my family and spent time with them. Despite the end result, I was in a temporary remission for a small period of time...something I never thought would happen this year and maybe wouldn't have happened had I chosen not to do chemo over radiation. So yes...the end of the year gave me a disappointment but I honestly wouldn't change a damn thing about it.

Now that I'm in the process of picking myself up again, I can now focus on what I need to do this next month. I'll be posting more updates as I learn more about what is to come and walk you through every moment! Thank you to all who have been by my side since the beginning and who continue to support me through this very trying time. I love you all.

My Mind Holds The Key

Hey everyone...sorry for the brief hiatus. When I last posted on here I had great news from the PET scan. Nothing has really changed in that regard and I have another PET scan awaiting me this next month. It will be the determining factor on what course of treatments to take place for the rest of the year. If the scan shows that the chemo reaction has been improving, then I might just be able to forgo any clinical trial, possibly add radiation or more chemo to get me to remission quickly, and then jump straight into a transplant. If nothing has changed since April or the cancer has spread, then we focus on a clinical trial in October and do that as many times as it takes to get me to remission followed by the transplant. No matter what happens I will be spending several months in the hospital at some point in time. It's going to be a long uphill battle ahead of me with a lot of uncertainty.

Instead of really celebrating my PET scan results, I found my mind plagued by the thoughts and worries of what is to come and how my odds are beyond scary. My anxiety and depression were starting to take a serious toll on me. When people were smiling and celebrating my news, I tried my best to enjoy it as well, but instead, I found myself distracted looking too far into the future instead of one day at a time. People compliment me on my hair and how it's growing back, but instead of appreciating the compliment I would feel detached and think to myself, "I'm just going to lose it all again during the transplant." I was in a very dark place. Everything became robotic going to chemo, sleeping it off, and waiting for the next appointment. I started to lose interest in activities and found my feelings of isolation worsen when more and more friends started moving away.

Then, out of nowhere, a very good family friend of mine offered to take me on her family vacation to the turquoise waters of the Caribbean. Despite my anxiety about what others might think of this and feelings of not deserving such a blessing, I decided to take a leap of faith and go. Looking back on it, I am so grateful for the wonderful opportunity because I truly believed it saved my sanity. Spending a whole week with fun loving people, no worries, and surrounded by beautiful sites and adventures...I was able to heal. I went horseback riding on the beach, snorkeling in the beautiful waters and sailing for the first time. I even marked off my bucket list relaxing in a hammock by the beach under the stars. It was truly a piece of paradise.

When I returned I had a sense of calm for a few days and still felt like it had all been a dream. But when chemo came around, I was truly dreading every moment. The entire ride to the infusion center felt like I had a giant rain cloud over my head. I wasn't ready to return to this nightmare and needed to find a motivation to get me through. So after a couple weeks of being back, I decided to visit my grandmother in South Carolina and spend some quality time with her during my off week of chemo. While I was there I learned a bit about my family and got to see my Aunt and cousins who also live down there. I even met up with one of my high school friends who went to school down in Charleston and spent an afternoon with her. Not only that, I spent the sunny days of my stay by the beach again.

Since I was little I've always been a fan of the woods and mountains, but ever since this whole cancer situation started 2 years ago, I've found that the beach is the best place to breathe. Something about the sound of the waves and the smell of the salt water...or digging your feet into the sand and soaking in the sun...or walking along the creeping waters for miles listening to music with the waves crashing in the background...it's very therapeutic. One day while I was at the beach, I found myself recalling a quote I read several years ago. "Strength isn't something you have; it's something you find." I was on the quest to find my strength to continue.

For the last two years, my body has been trying to kill me. Physically and mentally it has tried to bring me down and put me in the ground. But for two years I have continued to fight and persevere to stay alive...but what was it that kept me going? One morning I decided to wake up early to see the sunrise on the beach (since I never see the sunrise as I'm normally a night owl).

                                                                                          (A panoramic I took)
So as I looked out at the horizon that morning I found my answer. I keep moving forward because I have the motivation of my friends and family. I also have my ambition to live and to leave a legacy behind. And as I looked at the sky filled with so much color, I recalled how beautiful life is and I have the desire to see more of it, if I can help it. Surviving everything so far has only made me stronger...I can only imagine what I might think this time next year.

So when I returned home the other day, I not only had the motivation to write more again but to continue to fight to stay alive. I just needed to clear my mind, refocus on the now, and to only prepare for what lies ahead. I might still be afraid but I know I don't really have control on the outcome...just that I have to fight to get there. Besides, worrying means you have to suffer twice. I may have to be realistic, but I also have to remain hopeful that I can beat the odds and survive. It's all in the mind. And as Arcade Fire once sang...my body is a cage but my mind holds the key.

Patience is a Virtue, But Sleep is a Necessity

 I just got back from my 5th chemo appointment for this current treatment, and I figured I'd give you a funny little story and a quick update. So before anyone asks me, I had my PET scan this past Wednesday morning and I'm still waiting for the results...yes, you heard me right. Still waiting.

I normally get a response about the results within 24 hours, but the reason for that is because all of the PET scan results I've gotten in the past have come back with bad news followed by an emergency follow up appointment to discuss what the next option is. However this time...it's Friday evening already and I am still waiting. I have already sent my doctor an email and a voicemail, but I was told today at my chemo appointment that he is doing hospital rounds and might not get back to me until the end of his shift. I was also told that "no news is good news"...which is cool and all, but I'd really like some sort of confirmation...along with a reason to celebrate for once. Haha!

So since I didn't hear anything about a change in my treatment, I went in for chemo at my usual time...bright and early in the morning today. Due to the anxiety of waiting for results, I didn't go to sleep at a decent hour and only got about 5 hours total by the time I woke up. I quite literally rolled out of bed, put a beanie on to cover my horrific grow-out, bedhead, got my things and left. I figured I might just crash and catch up on my sleep after I sign in and get settled. I went straight to the reception and asked if there was anything on my file about my results or any changes in my treatment today. Sadly the receptionist told me that she had no access to scan information but that the nurses might be able to tell me if they came in. She then proceeded to put my wristband on and I took a seat in the waiting room.

Suddenly a woman (let's call her Nan) leaned over and told me about her latest PET scan and how she was starting a new type of chemo for her very aggressive form of breast cancer. She told me how her oncologist was absolutely amazing and that they always get back to her asap. I asked her who it was and she mentioned the name of my previous oncologist...the one who told me that I needed to quit my job and lectured me when I cried after receiving news of my cancer diagnosis at 22. I decided to bite my tongue and not mention this as she seemed thrilled with this oncologist. To each their own, right?

This small talk conversation was ok in my book until she started comparing her cancer to mine. Now I understand why some people do this. It's a failed attempt at empathizing another's situation. They are looking for validation for their own situation as well as comparing the severity of their cancer with others...despite them being completely different problems. I notice that a lot of people try to make it seem like their cancer is more important than someone else's and try to explain how I "should be grateful" that I don't have their specific cancer. Normally I just shrug that kind of talk off, ignore it, or change the subject to something else...but despite my attempts, I seem to have only encouraged this person not only to continue talking about uninteresting topics, but continue talking in general.

A few moments after sitting down, my nurse (let's call her Emmy) showed up at the door to welcome me back to my usual spot in the infusion center. I normally sit all the way at the far corner of the room, because I like to listen to music, read, or occasionally take a nap...and it's the most quiet section of the infusion wing. Immediately, I shot up and bolted for the door....

...as she also signaled Nan to follow. As I was getting my weight and blood pressure checked, I asked Emmy if my scan results came in. Sadly, she told me that she can't see anything on my file until the doctor does and she thinks they haven't come in yet. Usually I would feel a bit discouraged by this, but the only thing on my mind was that I just wanted to lie down in the comfy chair and take a nap. So, I made a bee-line for my usual spot and just as I was unloading my backpack and taking off my jacket, I could hear Nan asking Emmy if she could take the chair next to mine. The first thought going through my head was...

In that moment I knew...I was not going to be getting any sleep for the next couple hours. The only thing separating us was a curtain (like they have in the hospital). Her treatment actually turned out to be shorter than mine...but you also have to take into consideration that a good half of getting chemo is hooking a needle up to your chemo port (a little implant device under your skin on your chest), taking your pre-meds, and waiting for the pharmacy to prepare and distribute your chemo drugs (which they can't do until the previous two steps are done). So despite all my attempts of trying to sleep through it...I had put up with an hour of Nan talking about totally random stuff like her new industrial strength toilet she's getting put in today, her FIVE cats and how she adopted each and every one of them, as well as her life story. I didn't even have an opportunity to chime in, she just kept going on and on...

Within half an hour of her babbling, I learned her age, how many kids she had, where they went to school and what they are doing now, her job, her 5 cats, and she probably mentioned a whole ton more I don't remember. I was in a torturous (yet humorous) stage of sleep limbo where as soon as I would start zoning out and approach the blissful drift of sleep...I would be asked a question like "so how many cats do you have?" or "do you like mexican food?" or "I've traveled all around the world, have you?"....

Again, I normally wouldn't be too upset about holding small talk during treatment...it's a rare thing as most people bring relatives or friends along to socialize with instead of communicating with strangers. It also gets your mind off of how slow time seems to be moving when getting chemo (for some people you are there for practically a whole day). But out of all the days to befriend someone, it was the day I desperately craved sleep. So ultimately I didn't want to shut her down in case future (hopefully more interesting) conversations occurred. However, as time went on, I felt certain that if I listened to one more story complaining about her backyard pool (no joke), I would have ended up like Kahn in Star Trek...

Thankfully, in the end, her chemo sequence literally lasted 10 minutes as opposed to my 1.5 hour long chemo...but before she left I overheard the nurse telling her when she was expected to come in next and what her chemo schedule would be. Of course, with my luck, I found out she has the same days/times scheduled as me.

Despite it all, she seemed nice and I'm sure the reason she wanted to engage in conversation was because she was feeling lonely. I tried my best not to completely ignore her for that reason. And who knows what will happen during the next chemo treatment. All I know is that I've learned my lesson...bring headphones.

Anyway, I posted some funny videos of this chemo adventure on my instagram: https://www.instagram.com/madomelodic/
You can check that out along with my gofundme/MakeAWish (there's a link in the top right corner of my blog). Please share it!!
Leave your comments below and let me know what you think of my chemo adventures with Nan. If you want to see more updates (including my upcoming PET scan results) please subscribe or submit your email address on the right hand side so you get updates when I post!! Thank you everyone! I hope you all have a super awesome Earth Day and I'll post again soon!! Until then!!!

Numb

I knew something was wrong when I ran into my chemo nurse, and she gave me a hug and hinted at getting me impossible Hamilton tickets. I had an appointment with my oncologist to discuss the results of my PET scan. I told him I didn't want to hear anything through email or over the phone and would wait until I see him in person. I went into this appointment already expecting the worst and hoping for the best. I just wasn't really prepared to actually hear it being said to me.

Excuse me if I sound very blunt. I'm still very numb and recalling what happened makes me want to burst into tears, but it's an important chapter to this adventure and I figured I'd document it here. So after waiting a good long while, my doc comes in and broke the news as gently as one could. He said the treatment didn't work and we are looking at an incurable cancer. The cancer only progressed and even started attacking my bones. My only option is clinical trials at NIH and there are no statistics. I'm in a grey area where I don't know what will happen and how long I have anymore.

As I was hearing all these details of how my odds are low and that this treatment is solely to prolong however long my life may be, I started to drift into my infamous daydreams. I thought to myself that this is kind of like going into a duel. You are facing the end of a gun just a few feet away. You don't know if it will hit or miss. You don't know if you will die slowly, instantly, or escape it all completely intact. It's a risk and once the gun is loaded there's really no going back. I've heard the gun click and bracing for the worst and possibly the unknown. You start to wonder how people will take the news or what legacy you leave behind. But you can't show it...you can't be a coward and run away.

That is the best way I can describe to you how I felt and how I'm still taking the news. Apparently I'm a walking contradiction since I look and feel ok despite the increase in cancer. My doc says that I'm in the best shape to be going into this clinical trial so there is still some hope and I'm not giving up. I will fight this to the bitter end.

But facing ones mortality is truly a struggle that I'm still trying to understand. I feel like I haven't done enough. I feel like I have so much more to do. I want to travel and meet people. I want to go back to school and step back on the stage someday. I am worried about my family and how they will cope with this news. I feel like I've made more mistakes than accomplishments. I don't feel like I've had a chance to make an impact and make a difference. I don't want fame but I want to feel like I succeeded in any of my dreams. God only knows I've been praying and praying and yet I'm given all this!! It makes no sense to me. It's not that I fear death but I fear the lack of what I leave behind.

It's just a lot to take in and the wound is still very fresh. As I said, I will keep on fighting...but I need your help. Please...whoever is reading this...say a little prayer. Not just for me but for my family. Say a prayer for those who are also dealing with horrible news like this as I am not the only one suffering. Say a prayer that one day we find a cure and that future families will never have to face something like this.