One Year

After all that I have been through this last year, you might think it would be easy to put down your thoughts and feelings in writing. But, it's not, so many events during this journey were blurs and I am actually thankful for that. Although this is true I still remember the hardest points. I remember the pain and the nausea. I remember the impatience and the missing out of special events. But the best part of all of this is that I am past it and it has made me stronger. I'm thankful for all the support I have received from friends and families all over. Your thoughts and prayers have made this journey easier. I am thankful for some of my closest friends who have been around since the beginning. I am thankful for my brother and sister and how they keep my spirits high daily especially Brennan and especially recently. I am extremely thankful for my youth minister Jake as he has not only helped me spiritually but emotionally as well. I want to thank all my Grandparents, Aunts, Uncles and Cousins. Finally, I am more than grateful that God blessed me with the amazing parents I have. My dad was a rock for not only me but the whole entire family.  My mom was my best friend and I spent more time with her at appointments then either of us would have liked. Through this suffering I have found that the best form of support I have received in the last year is simply spending time with loved ones.

Everyday Life and School

As a kid you have one wish during the end of July and beginning of August every year. That wish is to not have to go to school and have a never ending summer. This wish remains the same to about every student all the way up until you graduate high school and even college for some. The wish plays in our mind something like this: a trip back to California maybe once twice a month. Daily hikes on different mountains with our super close group of friends. Driving around getting food and shopping with the money that we have coming in at a steady income. This dream is obviously unattainable and it would get us nowhere. After you have thrown yourself that August pity party, you then get your act together and go to school. No, not always; sometimes you get your 'wish' and it is exactly the opposite.

It was July and even though I had been diagnosed with A.L.L., I had aspirations to still go to school for at least part of the day. I kept that thought and the school was on board and very helpful every step of the way. Then we were hit with some pretty big news. My dad explained to me that there was some issue with the chromosomes in the leukemia and that my chances of life were 30% unless I received a life saving bone marrow transplant.

"Lets do this" I said as tears rolled down my face.

I was ready to start and complete this journey as soon as I could and that included going back to school in this school year. I was granted that 'wish' that we all wanted and soon realized that nobody actually does and ever will want that wish. My heart sank and I thought about all the things I would miss out on. I received more and more information about the isolation that is brought with this transplant and just kind of brushed it off and thought again,

"Lets do this" This time much more agitated.

The hospital stay finally arrived and I was as ready as I could be. The hospital was the hardest 46 days of my life; details in my Trying to Keep Perspective: Day 100 post. Once that stay is over, the fight surely does not end in the hospital and the thought of the isolation was and is still in the back of my mind. I returned home and remembered the things that were entailed to do after the actual hospitalization.

You get to leave the hospital but some, if not most of the annoyances from it travel with you home. For example, the broviac where you received fluids and will continue to receive fluids for another couple of months is on your chest, in a dressing at all times. Also, that part of the 'wish' were your driving around and eating fast food, yea that no longer is a part of the deal; it is only homemade food for the next couple of months. You might also be lucky enough to be put on Prednisone. The drug that will make you look like the Michelin Man, make your knees weak, send your blood pressure high and put you on insulin shots. I bring up all these obstacles this medicine has brought upon me not for pity or empathy although its nice to get some every now and then. I bring it up because there is still so much positive that has and will come from the 'wish' that actually may not be all downside.

I am missing a lot of things I wanted to do at school this year, but I still have some privileges others do not. For example, I try to sleep in most days barring no early appointments or insomnia from the prednisone. I started online school and have a chance to now graduate on time or even ahead. Although my diet is restricted, I do get to stay away from Dobson cafeteria food which I do not quite mind. I get to do physical therapy in the comfort of my own home and still get to leave the house sometimes with permission of the doctors.  But most importantly I know that I am on the road to recovery and out of the hospital with the ones I love most.

Code Blue

Towards the beginning of the last two weeks, things really started to progress. Although my platelets are not 'producing' the way we want them to, physical therapy and the thought of starting online school were helping me. Though I was sore and a little tired from the therapy things looked positive and challenging. I had some plans to even get out of the house to go to mass and catch a movie. Things of course always do not go as planned in this process as I have come to realize for what feels like the millionth time.

I went to clinic for an infusion of IVIG(a synthetic drug that helps boost immunity). A relatively normal but long day barring no stupid complications. The day went well with just one high blood pressure but nothing to worry about. I come in the next day for the same infusion and some platelets. Of course, the first blood pressure of the day is pretty high so the doctor gives me a pill to lower it, no big deal. An hour goes by and its time to check my BP again which has now dropped to a scary low number and before I know it, I am being pumped with fluids to raise the pressure. No change: so the words Code Blue were exclaimed and what seemed like the whole hospital was gathered in or around my room(The actual number was between 20 and 30). As this proceeded I was able to remain calm which made by dad able to remain calm which at that point was all that mattered to me. I was rushed to the E.R. after the lack of my BP raising. I had been demoted to an entourage of five or six people including my dad. After a half an hour or so in the emergency room, I was moved to a room in the ICU, where I would be spending the majority of my two and a half day stay. A stay that included another BP incident(High BP in the morning, take THE SAME PILL, low BP, then lots of fluids and then a return to normal) that was not of the same caliber. A stay that included the start of blood sugar draws and insulin shots. A stay that put me in a bed for 60 hours and took away what felt like all progress from physical therapy.

I realized once I made it home that the journey I am on is not going to be a simple routine. I realized each day will require a new effort, some easy and most not. It became very clear that the road that I am on will have more obstacles and that it will soon be over and back to being normal. I know that most importantly through God, Family and Friends, I will win this fight.

Trying to Keep Perspective: Day 100

Perspective can change in an instant and put you on your knees faster than you can say the very word itself. I have had this gut wrenching, tear jerking experience happen to me on more than one occasion for good and bad.

The first and most obvious one is the original diagnosis. I overheard the word leukemia spoke from the other side of my mom's phone followed by the cry of a mother whose heart had sank as deep as mine. Automatically my perspective on life was changed. I might die I thought, but the doctors soon put that thought to bed as I am soon informed that this is a disease with a 90% cure rate. Let's kill this thing with some chemo, that was my new point of view. This thought brought some comfort and my mind was in a good spot for a couple weeks. But of course nothing is written in stone and perspective can change again.

My dad walked in with a look on his face that I had never seen him wear before. My heart sank. I knew exactly what he was going to say. He then said what I expected:

"The test regarding your chromosomes in the leukemia cells is abnormal. This means you are going to need a bone marrow transplant."

How. I was just getting a hold of the fact I had to do chemotherapy, now I have a 30% chance of life unless I get this life saving procedure. After a hard couple days I did what I thought any great fighter would do and chose to do just that; fight and get a life saving bone marrow transplant. As time and chemotherapy continued on, B.M.T. crept closer. At this point, I am just ready find a donor and get it done.... and then in September it happened. We found a donor and a date was set for October. Let's do this.

It is hard to be anything but joyful the day you receive the transplant and joyful I was. The following weeks however, your perspective and almost everything else changes. To keep it brief, your hair falls out, your lips scab up, the inside of your mouth has more sores and dead skin than you could picture (or at least in my case), and I am sure you can imagine what happens to the G.I. track. The joy is still there just blanketed by the constant nausea and pain fro all the symptoms of chemo and radiation. But like before, there is only one thing you can do and that is fight on and keep a positive perspective. I did just that and made it out of the hospital in 46 days.

Surprisingly, the hardest period of time to keep a positive perspective in the last seven months has been the time home with no chemotherapy, and so far no hospitalisations. For me, dealing with the immuno-suppressive drugs and isolation since B.M.T. have been a real battle. It is a challenge to watch the world progress and yours just pause when you feel good enough to proceed. That is why it is important to count every single blessing on this whole journey and fight my fight.

First Off: Thank You Doctor Jones

The last seven months of my life have been a series of trials that I never thought that I would have to endure. It is a constant battle of staying positive and focusing on how blessed I am even though the circumstances. I would like to use this blog as a way to not only share my experiences but also my opinions and new unique perspective on life. In order to really understand that perspective, my journey begins around March, three months before diagnoses.

In March, I attended a church retreat that really helped me dive back into my faith and start thinking about the importance of my spirituality. I strengthened my relationships with not only God but my Life Teen community as well and it was great. On that retreat I felt that I was called to do something to help others. Whether it be something as big as go on a mission or just volunteer at a local food bank. With that calling from that retreat, I tried improving spiritually and embracing that calling but week by week I did not really get anywhere.

"I am sure Steubenville West will be where I really find what I am looking for"

That is the thought I used to make it seem like my lack of action was okay. Besides I had to worry about school, swim, getting my drivers liscence, getting a job, hanging out with friends, and having a good summer.. Right? So I focused on those things. I Got straight A's, was in the best shape of my life, got my license, got to hang out with my friends and even earned some cash working a wedding (Coincidentally, that was where I had naively experienced some of the Leukemia symptoms for the first time). I was enjoying my summer and working hard in the pool which was important to me. This was the year I would go to state and see all my hard work from that year pay off. Something was off however. I was not eating as much and would sweat while I slept and was sleeping a lot. My energy was so depleted that I was missing sets and intervals that were beyond doable. There are three moments in particular that I knew something was not normal although.

First, about a week before I was diagnosed I decided to jog around the block and I could not keep any sort of pace. My knees felt weak and it felt like I was on the last mile of a marathon. I ended up walking almost 70% of that 'jog'. I kept to my self about it and became more frightened when at mass two days later I was having trouble simply transitioning from standing to kneeling. I knew something must be up so I checked my temperature that night. I had a fever of 99.8 (which we do not consider a fever currently in the house now due to the possibility of a hospital stay) so I decided swim at 5 am the next morning was out of the picture. Tuesday I felt a bit better, had no fever so I decided to go. Practice was a long course practice that was challenging but again very doable. My energy still was not there and the water was just freezing. I kept moving but it kept getting colder. I started to get paranoid when I had been swimming for for 45 minutes and would not stop shaking. My coach let me warm up in the showers but I was still so cold.  I returned from the showers frightened, called it a day and headed home for more sleep. The next couple of days continued with low grade fevers, missed practices, sleep and what I thought at the time was a pointless doctors visit. It went somewhere along the lines of:

"I am hot all the time, not really eating but feel bloated and my energy is low."

"You probably just need more sleep and nutrients before and after practice. I would like you to get blood work checked however."

Thanks a lot I thought. That doctor saved my life by ordering that blood work but I looked at it as another appointment and no answer to my problem. Not only did she save my life by ordering that blood work but the doctor gave my mom the news on a Saturday while she was on vacation. So thank you very much Doctor Jones, God's perfect timing and grace that was shown from the very beginning.