Sorry this is such a consolidated blog again. Last sunday I woke up with some drainage around the PICC line and had the home Health nurse come and take a look. Well everything looked alright until later on in the afternoon just looking at it looked bigger and it was when me and mom measured it. I called down to Danville they had me go down to the ER and decided to run some tests. The IV nurse I had looking at it wasnt very concerned and kept saying it just looks bigger to me and mom. Even though me and mom kept explaining it we measured it. This women just wouldn't listen. Luckily the ER doc new what she was doing and decided to order a Doppler (like an ultrasound to see if there are any clots in the arm) They decided to keep me over night and start me on lovenox injections to prevent any new issues. But the plan remained to do my chemo the next day through the PICC and then pull it and send me home. All went as planned and Iwas home by Monday afternoon. this week went well with the shots at home although they freak dad out who thinks that no one should do that crap at home, but dad can't even handle watching doctor shows on TV no matter how unrealistic they are.

Tomorrow is a busy day have to be down there about 8am to do the usual meet and greet with one of my providers and then they will be doing the spinal tap with some methotrexate, The bone marrow biopsy that determines if the induction phase worked out as well as we want it too, and the mediport that goes under the skin in my chest for remainder of treatment. depending on how tired I am tomorrow I will try to update again.

PS. I just realized today marks one month with Acute Lymphocytic Leukemia. Lets hope tomorrow brings along that Low bone marrow number.

Update is a little late for this week sorry ya'll Monday was a long day we were down in Danville about 10am and didn't leave until about 4. The chemo itself took only about 30 minutes but when my labs came back they wanted to give me some more stuff for clotting and blood thinning which took all day to be sent from the pharmacy. Literally the most annoying thing to do is sit there and just wait for something that doesn't take that long at all to administer. We did find out that along with that MLL gene I have a distinct and rare form of ALL that is very similar to Burkitt's Lymphoma which makes it just a bit different to treat. We are still going to treat it as planned at least in this induction phase. The doctor seems a little more optimistic about this than the other gene thinking this might actually help but there is know way to tell. There is still allot to go before we do know to much more. Burkitts Lymphoma is a VERY aggressive Cancer that grows very quickly and explains why 6 months ago I had normal blood counts. what we want now is to make sure that the Chemo has completely wiped out any cancer cells in my bone marrow that is the first step in the remission process of things. Only time will tell with this one as everything becomes about in the next few weeks. Chemo Symptoms are not bad (yet) the most I have noticed is the numbness in the finger tips which is tolerable. The medicine Prednisone (not a chemo drug its a normal steroid) is complete hell. This is not an exaggeration. All I want to do is eat. My heart rate and blood pressure are all out of whack. My FACE LOOKS LIKE A BEACH BALL. long story short the steroid is the hell drug and I HATE IT. but otherwise all is good just hanging out driving mom nuts all the time and other than that Im doing pretty good. The PICC line in my arm comes out on the 12 and they will put the MEDI-PORT in my chest. They're going to also do the spinal tap and bone marrow Biopsy on that day get it all done in one shot. Baring any complications it should just be a long day but hopefully home the same day. Well all I'll update again with anything important when it comes up again sorry for the delay I have always been a procrastinator!

So while I have a few minutes I figured I would give another update. Not to much going on since I have been home. slight symptoms of the chemo but nothing to pressing. the worst part about being home is having this PICC line in my arm, I am so paranoid of it slipping out or something. Drinking plenty of water and walking as needed. About the best I can do especially since Im used to doing more than half a mile at a time but it is what it is. The Prednisone is the worse it keeps my heart rate up and makes me feel anxious. The other downside of the Prednisone is eating its all I seem to want to do which isn't good for a guy who lost 85lbs (willing) before all this started. I miss fruits and veggies the most especially now since I can't have them (stupid low immune system)!!! well that's about it for now got a lot todo today so see ya'll later.

I am HOME! Its strange being here after the comfort and sterility of my Hotel... Hospital room. Just have to be extra careful of germs for a while as I actually hit that neutrapenic stage today. No fresh fruits or Veggies, and people need to wear masks if they are sick or at risk of being sick when they come to visit. Just as when I go out I need to be careful myself and where a mask and wash excessively. A BIG thank you to Mr. Thomas Malinski for giving me and my mom a lift back today from Danville on his way to the dentist. It means allot. Back on Monday for more treatment!

Today's been busy but nothing really eventful. They gave me the spinal tap with some more chemo inside it  again just to prevent and cancer cells from growing inside the spinal column. They did another round of chemo this afternoon while I was stuck laying around for 3 hours. Doctor says home sometime this week all depends on different things nothing wrong we all just know the docs like to be consistent. Home soon! Hopefully!

All Labs are in for yesterday (Sunday) all looking pretty excellent. They did have to give me a transfusion of platelets so I will clot a little better tomorrow for the spinal tap. they also had to give me something to prevent clotting and something to prevent excessive bleeding. I know ironic right? It shows how fragile our body's as machines truly are, but a dose of chemo. in the morning and a spinal tap around 2 is my schedule for the day. I assume that I will be out of here at some point this week. nothing is wrong but we all know how the doctors like to add another day (or two) for observation. Hope to see all of you soon. Regards!

Alright good news today no blasts (the "cancer cells") in my blood this morning. Now this doesn't mean they can't return tomorrow because in all likelihood they can. But I am doing this day by day so we can all count it as a win for the day. What we really want to see is in a couple of weeks that there are no cancer cells in my bone marrow as well. There was no signs of it in my spinal tap but we have to make sure it's not in the bone marrow because that is where our blood is made (technically). Looks like I might get out of here on Monday after my spinal tap as long as everything goes well. but there is the likelihood that the doctor wants to keep me longer as some Doctors do. Hoping for the best, Preparing for the worst! Good Night! hope to see you all soon!

So I know allot of people were looking for my blog post yesterday but i wanted to talk with my doctor a little  bit before I put anything up. I was slightly concerned with the newest news that there was a new development (11q23 MLL translocation) and that it meant a poorer prognosis (so I thought it is but not that bad) I went ahead and did everything that you are not supposed to do and that is look up information on the internet. NEVER EVER try to do your own research on the internet it will haunt you and make you feel like this is the end. Even if you find a reputable site 1. It is not your Doctor and 2. Nobody is the same that data could be the last clinical standard for all we know. So I apologize for the not posting last night I was in anxiety land and was busy doing my own research. As I found out today it is not that bad and what an MLL translocation means is that it is usually found in infants with ALL well the reason everything I read was sounding so horrible is because Infants have a poorer response rate to Chemo. The difference is that They can treat me with higher doses of chemo to treat this and try to prevent a relapse of my disease. But here is where all of you come in, They are going to go ahead and test for a another Chromosome/ gene abnormality that can again cause a difficult ability to cure this disease. Please use every extra prayer that you have (and I hate asking for prayers it feels selfish) to hope that I do not have any of the other cell gene mutilations PLEASE! I don't think I want anymore bad news with this especially since everything was going so "well" I did go ahead and look at my labs they are all good and again that is exactly what we want to see as to put this into remission as fast as possible to prevent a relapse. Thanks everyone for the kind words of encouragement, all the prayers already, and all the cards I have coming in. I am truly blessed to have so many people looking after me and praying for me Thank you all so much from the bottom of my heart.

PS as long as everything goes well I can be out of here on Monday after my spinal tap as long as nothing substantial happens.

Labs are way down should be hitting that neutropenia stage soon which means I have to be extremely careful for infections and sick people because I will have no immune system to fight it off. Had a great day figured out that I might be out of here on Tuesday as well as things go well. Then I'll be down here every Monday for the next four weeks. I would like to stay here to do my treatments at Danville even with the long drive. The next set of chemo drugs start tomorrow and that should last about an hour. OH! Good news in my opinion I can get rid of this stinking line in my arm and they are going to put a port in (sits in my chest) which has a little better access and I think it will be much better than having 3 tubes hanging from my left arm.

Nothing much new today Dr. Miller came in and is happy with my labs she says I get an A+ for the day. Got a chance to just mellow a little bit today. Got a few visitors that made the day even better. Something I have to say about the nurses on this floor is that they are absolutely awesome. They love there job and do it well and it show's in there care. Good day indeed!

Well all labs were good this morning. Had to go and take care of a root canal at the dentist (this place is endless). I was supposed to have the root canal last week on Friday but we all know what happened. So after sitting at the dentists office for 3 hours me and mom got to head back up to our room... ok that is a lie. the fire alarm went off a  few floors below my floor and they couldn't transfer me upstairs until the fire department came and looked at the problem so we chilled in at the dentists for a while and soon made our way upstairs. by this time im getting more and more anxious about the chemo because I know its just a matter of time. one of the Doctor's on my team (Dr. Miller nice lady, real personable) came in to talk about labs and paper work and all this other stuff and yet another person was confident and impressed with my lack of symptoms. She says I will be here the next eight days and I will have treatment every Monday for the next 4 weeks but as long as I respond well to treatment she isn't concerned about getting me home and back out there. Dr. Miller is also impressed with how fast my labs have dropped and helped calmed my fears a little bit further (although we will see because I start the Chemo in a few minutes or so). For anyone interested Todays cocktail of the day will be VinCRIStine, Prednisone, DAUNOrubicin.
they're here!

in goes the VinCRIStine this was the most nerve racking thing of the day but its in now and no problems a few days ill feel a little worse for wear but nothing I can't deal with when that time comes.

DAUNrubicin. ITS FREAKING FLORESCENT ORANGE!

Anyone else see the resemblance?

UPDATE: URINE IS NOW FLORESCENT ORANGE AS WELL!!

Ok good morning all! morning labs are in everything is down a bit more right on track I feel the need to explain how this all will work so bare with me. My labs will continue to drop as is expected and it is exactly what we want but the negative part is I will have no immune system to fight off anything for a period of time before the levels start to rise. What we want is for when the levels all begin to rise there to should be no cancer cells in my blood. Had a visit from a few more of the bests yesterday and I was so happy they decided to surprise me one at a time it just kept getting better and better! a little sad when they left but ill be able to see them again real soon. they are giving me the ok to shower after my spinal tap so ill post my labs after that is all finished.

First picture is yesterday next is today again mostly everything dropped as is expected. starting to hit that tomorrow starts the chemo. Deep breath, just breath.

some good news

Alright just had some good news the hematologist just came in and informed me that I had zero cancer cells in my spinal cord during the procedure yesterday, and that I am responding to treatment nicely with the small amount of Chemo they injected yesterday called intrathecal cytarabine. I came in with a White blood cell (wbc) count of 54000 and it is currently down to 17000. The other this is that 80% of my WBC's where lymphoblasts (the immature lymphocytes that fight infection) while a normal person only has about 5% lymphoblasts. currently after treatment my lymphoblasts are now at 55% the hematologist is very confident of this and Im counting it as a win for my day.

First Day in the Hospital! busy with tests

Well didn't sleep to well Thursday into Friday I think it had something to do with finding out when I would start treatment!!! First thing I need to say is as a nurse I am in love with this hospital it is HUGE and there is so much stuff here im in love with a hospital. I keep telling mom that once I am all done with treatment I am going to come work here! (this isn't a joke I am in love with a hospital) the staff is amazing BTW oh and someone told me there is a robot whose sole purpose is to carry the medications from the pharmacy to the nursing stations BY HIMSELF!!! ok so on to the details of the long day. First thing I met with the head of the department who took my case immediately. He came in explained what everything was all about, did a physical exam that he was pleasantly pleased with because I really had no signs or symptoms of this disease. My platelets were really low so im having allot of bruising but not bad. but back to Dr. Ward the head of the department he is a fun guy great spirits and did allot to put me at ease. The case with my type of Leukemia  (ALL) is that its best treated in children so they try and treat anyone under the age of 31 as a pediatric patient for the best results. this is what they want to do with me after a few tests to make sure that I am a good candidate. first thing they did was insert something called a PICC line into my left arm and its basically an IV that runs up my arm into my chest into the Vena Cava ( major vein into the heart) making it a better access for administration of certain medications it has three different Ports (access points) one is used for IV the other for blood draws and another is used for IV nutrition in case it gets to a point that I can't stomach food or drink because of the harshness of the chemo. This whole process wasn"t very pleasant but it was alright. The lady stuck me about 6 times trying to get a good line in but I guess I have allot of valves which prevent the line from extending throughout the vein. The next process when she found an ok vein was too but something called an inductor* about 5 inches into the vein and basically holds the vein open giving a better opening to induce the catheter this was the part I disliked the most, a little painful pressure but it didnt last long and it was very tolerable. then they sent me down to do a chest x-ray to make sure that the line was placed properly and wasnt coiled in my chest. after I came back up I ran into Dr. Ward who had good news he spoke to the pediatric team and they were excited to have me on there service. oh some other interesting news two days before this I guess doctor ward admitted another young guy 19 years old whose name is Dylan as well. I ran into his mother and she was asking how I was doing, she seemed ok considering. I asked how they found out and she said that he was having allot of bruising. When I came back into the my room I got a visit from Dr Ramdas the pediatric oncologist who would be taking on my care. I liked him he was another upbeat guy and informed me that he would be putting me under general anesthesia to take some bone marrow from my hip and do a spinal tap. I got a visit from my buddy Travis who drove the 3 hours to come and see me and that helped put me at ease because before I knew it they were rolling me down to the procedure room. Mom came with me and they informed me that they would be giving me platelets to help my blood clot because my levels were so low (it was a chilly sensation kind of cool though). the procedure started a little late but the nurse anesthetist that was on my case put me at ease and I was very relaxed because of her (anyone who knows my nerves should know that me being relaxed during a procedure is a surprise). She had a student with her who was going to be doing allot and I was impressed by his abilities. My aunt and godmother came and seen me right before going in and it was a nice feeling before going under. they wheeled me in put a mask on my face, and  then remember waving goodnight and then I was waking up (a little agitated as I usually do when coming out of anesthesia i always try to fight it) I had quiet the sore throat and I guess they had to try a few times to get the tube in but im not concerned students need to learn to! I came back up about 4:30 and I had the best welcoming committee ever Travis waited all afternoon for me to get done and my other friends Tommy, Dylan and Dylan's girlfriend Kelly came to visit me I had an awesome time considering I was a little sore and my head had a slight headache that felt very heavy. the Dr. came in when they were all here to tell me that it was in fact ALL and brought my treatment schedule with a bunch of different treatment drugs and things like that. This is going to be a long hall ill be here for around 7-10 days and the most intense phase of treatment will last about a month then every few weeks then once a month after 6 months for about 2 years.

Diagnosis

So after two days I seen the Hematologist to review my high levels of white counts.  This guy Dr Brady was an awesome dude in my opinion he was optimistic and very fast he squeezed me in on his lunch. He talked to me a little bit about some of the stuff that could be going on with a white blood cell count that high. Dr. Brady also asked about family history of cancer and boy did he get it! He was shocked that I had two aunts and a cousin with breast cancer, another Aunt who had uterine cancer, and my father has a form of Leukemia called CLL which is extremely slow growing form of what I have (not really but kinda close) and he may out live the need to even have treatment. If you think that's allot that's only my fathers side and doesn't extended further than two generations trust me I could keep going. My Grandfather on my mothers side had three types of cancer one of which was Non-Hodgkins Lymphoma the rest I will update as soon as I hear more on that. But back to the the appointment with Dr. Brady he told us that he would do another set of blood work (as I was expecting he would) but here is the nerve factor for me  he could review it himself and look at the shmears and have a primary diagnosis in about 15 minutes (I think I was more nervous finally knowing! talk about 15 minutes of nervous hell. I thought I would get a chance to go home and just wait it out over the weekend time to prepare myself. When he came in I was fidgeting so bad im surprised he didnt expect a seizure disorder! it looks extremely like ALL (Acute Lymphocytic Leukemia) and he was getting me a Bed down in Geisinger Medical Center Danville Pa immediately SURPRISE!!! I was nervous, couldn't eat or drink and it didn't really hit me until the quick run back home to pack some things up!
We got checked into Bush Pavillion 8 (the hematology/oncology and bone marrow center) about 9pm on Thursday where they started me on normal saline and a medicine called allopurinol which they give to patients who may be receiving chemotherapy to reduce there uric acid "Chemo can actually break down alot of uric acid in the body and affect the kidneys). its was a long day a long drive and I had been up for about 27 hours by the time i got settled in it was bed time busy day tomorrow (Friday).

The initial lab work

So thank god for new employment right? Tuesday I was scheduled to complete some pre-employment paperwork and blood work for my new job at wayne memorial hospital. To my surprise I had just gotten home from all this and was laying down because I had to work at 7pm that night, the doctor called from somewhere at wayne memorial to ask if I had been feeling alright, to which I responded that I was, he informed me that my white count was elevated and that he wanted to send this immediately over to my PCP. Not 15 minutes later my doctors office was calling for me to come in ASAP. This is serious I'm thinking as me and mom headed off to Carbondale. When I got a chance to speak to my provider I wanted to know just how high my counts were. He has always been a no BS guy and told me 54000 that's when I knew it was bad as a normal high usually sits around 10000. My thoughts start to race ok what could it be as I asked my PA he explained that with a count that high it was unlikely an infection I was hoping that maybe it could be my overdue tooth abscess but he didn't seem confident that an infection would cause this level without signs of sepsis. He said a level this high would most likely mean a form of leukemia. Shocking news, right? So he was rushing me to the a hematologist (blood doctor) to have further tests run. The guy couldn't see me until Thursday on his lunch break so I had two full days to research and worry not as fun as it sounds. Most likely due to my age I have Acute lymphocytic leukemia (http://www.mayoclinic.com/health/acute-lymphocytic-leukemia/DS00558) which is short is an aggressive leukemia that produces an over abundance of immature white blood cells that don't actually do anything. This is is commonly found in pediatric patients and the younger you are the better the chances of survival. Not that it calmed my fears I was afraid of the treatment as well...