Leukemia

I told y’all yesterday I would do a post on this.  I am sure the end of it will be followed with normal stuff but here this one goes.  I don’t think this will be difficult to write at all.  I don’t mind talking about this.  I am sure a lot of people think that I would or they shouldn’t bring it up but I welcome questions or comments or whatever.  Here is the story.

In December of 2009 Jeffrey was having a toothache.  We decided to go to the DR and see what the deal was.  We had just gotten a new DR and had been seeing her maybe 3 months.  (Yes brother dear, I am consistently breaking every grammar rule.  Don’t spazz.  I know the rules, therefore, you know what that means….)  Oddly enough, my Mom and I had just been discussing how pale and weird he looked about a week or two or even a month before.  We had decided that the next time I go to the DR with him to ask if he can take some vitamins since we thought that since he didn’t eat normally he was lacking something.  So I did.  The DR kept looking at him, and finally said that with how dark the allergic shiners, she called it, were under his eyes, she was going to run a blood test. To this day I can only figure God nudged her to do that.  This was on a Monday.  On Wednesday, I had decided to add some more hours to my work schedule because I apparently loved torture and needed the money.  I was up, and I heard a knock on the door.  My brother in law had came out because the DR had been trying to get a hold of us and couldn’t so she called Derek’s Mom.  I called her back.  She said that the guy who tested Jeffrey’s blood had determined that he had leukemia.  He said he would bet his career on it.  Oh my.  I wasn’t exactly sure what it was but I knew it was bad. I can sure tell you all about it now.  I got off the phone, and called my aunt.  I told her what was going on and I needed her to come out here when I went to go tell my Mom.  My other aunt rolled in the driveway shortly after that trying to figure out what was going on and I am not sure if she knew or had a feeling to come up here or if the other one called or whatever but she did.  Once we all got together I told my Mom.  I dreaded that.  She handled it well.  I remember her telling me of the church service that Sunday after he was diagnosed. She said there was a little boy there that had requested prayer for a kid in his school who had cancer.  They all knew who it was.  It was a sad day that particular service I was told.

Ok, back to this.  After we got all that settled, upon recommendation of the DR we packed for a few days.  Snacks, pop, clothes, books, computers, you know, all the essentials were packed.  In the midst of all this, I call up my brother.  I tell him that I’m not sure what you are doing but I need him to go to Indy with us to Riley and why.  He dropped all he was doing and waited on us to get to Bloomington.  I have an awesome brother, but more about that in the post.  We left and headed to the school and went in and told the principal and everyone what was going on.  It was the strangest thing seeing him come up the hallway, and not being able to really tell him exactly what was going on.  We did not have official confirmation so we just told him the DR said we needed to have tests ran so we were heading to Riley.  That satisfied him. We also had to make arrangements to get Annie home and stuff so I packed her stuff and took it to my Mom’s before we left.

After we got to Riley, we had to go to the ER and that took forever.  All we could really get out of them several hours later was that he had something wrong with his blood but they weren’t for sure what.  I was so hoping it was a glitch, a malfunction in the test.  Nope.  Not a chance there.  They shipped us upstairs and put us in a room and there we waited until morning.  I remember talking to the nurse that night hoping it was just a fluke.  We had the bone marrow test the next day and later that afternoon we knew he had leukemia.  With this particular type, there was no waiting.  He needed a central line the next morning and then the next day around 1AM he started chemo.  There was again no time to absorb this and what it meant.  So when the DRs there finally got around to talking to us, I asked because I wanted to know.  Until his DNA tests came back, at that time, he had a 50% chance that he would survive this.  50%!  They also said that there was no stages in this.  Either he had it or he didn’t and if he had waited much longer, he would have had more symptoms of it which would have possibly involved his liver jutting out the side of his body.  Mercy.  Well, this changed life in many ways.  This was around December 18th.  We were going to be in there through Christmas and beyond. I was beginning to dread December.  The December before we lost my father-in-law, and the December after, on the day that Jeffrey was diagnosed, we lost my beloved uncle and then the day after we buried him we lost his wife. Mercy. This particular December with us being at Riley, it was the best and worst Christmas ever.  Not sure how it could be that but it was. Jeffrey was being treated for something that could potentially harm him so he can live and be completely healed and let me tell you, the hospital takes Christmas serious;y!  Santa came and I didn’t even hear him! So much stuff was there that we almost didn’t get it home! They were so good to him and to all of them there.  That year there was only maybe 5 on the floor. There was a ban on visitors due to bird flu or something but everyone came up for Christmas since that was lifted for Christmas Eve and Day.  His sister wanted to stay but I couldn’t keep her out of school.  When the ban was lifted for good she came up frequently to stay the night and the school never said a word.  She really kept trying to stay all the way through it.

For the next 6 months or so, this is how it would go:  a bone marrow test,  5-7 days of chemo, waiting for the immune system to bottom out and then start back up, go home for 2-7 days, come back and start again.  When we left he had to wear a mask when out in public.  If anyone even had a sniffle, they had to stay away.  His immune system was so weak that a paper cut could have killed him  From the readmission with the bone marrow test until we got to go home took 25-30 days. This was repeated at least 5 times. We could go with him for the bone marrow after the first time. Bone marrow looks like blood.  That was all.  I think one of the saddest things I had witnessed up there was right when they were trying to sedate him, he sat up, half with it and half sedated, crying for me.  I couldn’t do anything other than talk to him.  That was rough.  By the time the 2nd treatment started, I had no idea how we were gonna keep up with this mess.  But we did.  All the chemo required additional meds, for his stomach and one of those stomach meds made him sleep so he wasn’t just sick all the time.  One type of chemo bothered him so much that he couldn’t keep anything down.  This particular stomach med put him to sleep.  And if he required another med due to something that caused him to break out, he needed Benadryl then and that caused him to sleep.  This chemo was some of the strongest there ever was.  And it needed to be given fast and hard, because they explained that AML was a fast spreading disease.  This stuff put him in a world of sick I had never witnessed before, even when my aunt was taking chemo I don’t remember that.  Maybe because she wasn’t home much but at my other aunt’s but I don’t remember anyone saying anything about that kind of sick.

He did get to go to a prom they put on for all the kids.  He really enjoyed that. That happened around the first part of his two part 5th treatment,  Before though, around his 4th treatment, we witnessed something that none of us will forget.  The child in the room next to us was going to pass away.  There were lots of noises and different things going on next door.  There was no way we could explain to him what was going on even though he kept asking.  Our nurse kept checking on us to make sure we were ok.  That was also rough.  These things I will never forget.  His last treatment involved some different things like shots and stuff.  But it was the roughest.  He had a fever close to being over 105.  I really didn’t see us walking out of there with him.  But he made it.  I remember back about round 3 of chemo.  I was awake, as was often the case, when he was up puking, or running a fever requiring more meds overnight, or whatever.  I had said to myself how much more of this can I take?  I was really just disgusted and was done.  I couldn’t be done, obviously, but I was.  I then heard, and I am going to assume either in my ears or in my thoughts because I don’t remember, that no matter what happened, he would survive.  He may need more than this,  but he will live.  I didn’t know it at the time, but it was God speaking to me.  After that, I didn’t worry again.  I have concerns even today, but I have never went into that type of worry like what I was experiencing then. The biggest news there also is the fact that I didn’t know God then.  I was lost for many years, but that didn’t matter to Him.  He had us when we didn’t know Him or even want to.  I am so thankful for that!  I know this now that the things I felt then was Him.  How much love He must have for us to do these things, even when we are a million miles away mentally!  Thank you Lord for having me when I didn’t even know me or You!

It is still really hard to wrap my head around the fact that at age 10 we could have lost him and he had cancer.  Cancer is always thought of as an adult disease, an adult problem, something that we can possibly bring on ourselves.  Then my poor little guy, he had to deal with adult things at an age where he didn’t need to be.  I still wrack, more like wreck, my brain when I really think about what exactly that all means.

Derek had to keep his job while all this was going on.  He would work Saturday, Sunday, Monday, Tuesday and come up on Wednesday and stay until Saturday.  My brother would drive him up on Wednesday, take me out to go shopping or find something different to eat, go home and come back and pick him up Saturday and get me out for a bit then too.  He would just take our car home and come back later in the week.  He has no idea how much that helped out.  It was tough being up there by myself, but you know me, I made friends fast.  I spent a lot of time talking to DRs, other workers and such when I was there with Jeffrey alone.  I was always friends more with the employees than the other families, although a few of them I did grow close to and stay in touch with today.  You can imagine that with Derek’s cut in hours, it was hard to make it.  But our community here is a wonderful community.  Someone did something for us every week it seemed.  We are so thankful for all the community here, and local communities, did for us.  We would never had made it without you.  Thank you!  Derek’s family and my church put on some fundraisers as well and without them we would have never made it either. Thank you!

Speaking of the concerns today, a lot of stuff that people don’t realize is that the long term effects of this still hit today.  He is classified as a “long-term survivor.”  This means that he is past the stage of it returning, but there may be future health concerns.  He could develop another form of cancer.  The DRs say that he may be susceptible to other forms since he has had one already.  So they have made it clear many times that he has to leave the cigarettes, alcohol and bad foods alone because any of those things could bring on something he don’t want.  They also say the chemo and the blood transfusions could cause heart or liver problems.  They always check him with an echo and an EKG once a year.  He will have to be checked at least once a year the rest of his life, as far as I know, for cancer and these other things.  This will NOT go away just because it has not physically returned. Every time he gets a nosebleed, which can be a sign that leukemia has returned, just makes my blood run cold.  A cold or sniffle or other ailment that isn’t normal also just shoots through my veins like ice water.  About two years after he was diagnosed, he was sick and the same DR who discovered the leukemia did a blood test to be sure.  They found abnormal cells in it.  Oh. My. Goodness.  The world almost ended there.  We had to go on Christmas Eve and get another blood test, which was shared with Riley to see what was going on.  They called me that day to tell me that all was well.  Talk about THE best Christmas present ever!  I was absolutely sick to think that he had gotten sick again at the same time of the year.  Also, there are other effects that not many know about.  About a month before his last round of chemo, I was terminated from my job.  I am not exactly sure if they really expected me to leave him in Indy and drive 3 hours to work or what, but that is what happened. Apparently FMLA doesn’t work for diseases that last longer than 12 weeks or so.  From 2010 until 2012 or so I bet I put in over 300 applications and only one called, to tell me they had no job openings but I was more than welcome to drive to Evansville for $7 something an hour from Shoals.  Really?  Hmm. That is about a 1-2 hour drive with gas around $3 a gallon. Figure the math on that one.  Anyway, still looking now and this led me to pursue my Master’s degree in Electronics and Computer Technology. I actually worked on my Bachelor degree while we were at Riley. I didn’t have any idea then that I was going to try to go further.  My hopes here are that a higher degree will open up more job possibilities and the job placement program is better at a bigger university.  Let me cover this stupidness right here too.  I have been told many times by many people that the reason I am not finding a job is that I am feeling sorry for myself. I was even told to go talk to an old school teacher that would be able to help me since I wasn’t getting anywhere. I did and explained to her what was going on and she agreed that is it just a tough job market right now and to keep on trying and I wasn’t doing anything wrong.  I am not sure how you can say that putting in applications with no call back, and when you call and check they forcibly state that if THEY are interested they will call, is feeling sorry for myself.  I can’t force them to call me and I can’t even score an interview to screw up in to blame it on myself.  My resume has been looked over by a professional writer/editor so I know it is not the issue. So don’t try to tell me any of that.  I have done all I can do apart from stalking these people or telling them that I WILL work there and I don’t think either one of those will work to my advantage, nor do I have the energy or desire to do either.  I am almost sure that the red flag holding me up is the period of not having a job on my resume.  I don’t even get the chance to explain why I was jobless.  No one cares.  If I was them, I would possibly look unfavorably at applications like that too.  But we really need to stop the judgment and give people a chance, and that goes for every aspect of life.  I know one day I will have a job that will put to shame every other piddly job I ever had.  Seven figures, I keep telling myself, seven figure income.  Someday. The point is, issues that came about when a major life occurrence happened don’t easily go away, even this far out.

Going back to my brother, let me tell you about that. As I said earlier, he would bring Derek back and forth because it was nerve wracking enough with all that was going on.  We really appreciated his helping with that.  When he would get here, he would take me out to go shopping and pick up somethings that we needed and go to get something else to eat.  Hospital food or McDonald’s food got old really fast.  We would go to Wal-Mart and other places just to get me out.  My brother does have an interesting sense of humor so I was in stitches most of the time we were out.  I do miss seeing him twice a week like that but I would have never made it without him up there and I think he knew that.  I remember when they all had to leave when he first got sick around Christmas.  That was awful.  But we made it.

Derek’s family did an awful lot to help us too.  I know they spent a lot of time with us when he was first sick. They also did a lot of work for a fund raiser for us. We are very grateful for all of that.  We would get visitors and things from time to time.  I remember one specific time my brother-in-law brought a friend and their kid up for a DR appointment and he spent the majority of the day with Jeffrey and I.  It sure did help to be able to see people like that!  In fact we (not Jeffrey)  went over to Methodist to see another family member who was in the hospital and he tried to convince the DRs over there that he kept me in the trunk of the car.  Ha!  Oh the times we had trying to get through this stuff.

This blog is just grazing the surface of this whole experience. I have often thought that I would like to write this more in depth into a book.  I am sure it would help someone.  I just haven’t explored that idea on the other end of it although I do have a good start on it somewhere on this computer.  Or it could be on another computer somewhere.  I did write many entries on a web site called Caringbridge when he was sick  I did go into greater detail there with somethings but it still is only grazing the surface.  I will eventually transfer those over here.  I am sure a few have read them but they are still relevant to all that is going on today.

All of this of course has had a significant effect on how I view things.  Like I said previously I don’t look at things like I used to.  I really process things differently. There are so many things that I used to think were important and that is not the case now.  Sometimes I know it seems I don’t have much tolerance for complaints and things that seem irrelevant.  Maybe I don’t.  But if you are my friend I do care about what you have to say and how it effects you.  I truly do see things differently, and I also know if you put your mind to it, with some faith and prayer, you can overcome anything.

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