Brody continuing to feel okay

Brody has been back home from the hospital for 2 weeks and it has now been 2 weeks since Brody officially started hospice care.  Brody's body is currently not strong enough to handle any chemo options he may have left to try.  The remaining options are all cytotoxic options which would more than likely cause more gastrointestinal bleeding (and other unpleasantness).   Brody is still having some slow gastrointestinal bleeding but fortunately nothing as severe as he experienced a few weeks ago.  His oncologist let us know that Brody will need at least 4 to 5 weeks off any sort of chemo to allow his body time to heal.  At that point, we may be able to revisit the possibility of restarting chemo.  Brody's condition will be a major determinant as to whether this will be possible.  

Encouragingly, Brody has felt well most of the time since we have been home and his condition has even improved in some aspects.  Brody was not able to move his left leg; it was practically paralyzed; he could not make it move.   Now, he can move his leg again and is able to walk again.  He is very unsteady when walking and needs to hold our hands to keep steady, but, he's walking!  His leg was EXTREMELY swollen.  Now, it's back to normal size.  Brody's nose and throat have healed and no longer hurt (from the previous NG and NJ tubes).  His G- tube is functioning very well.  His G-tube is pretty much constantly draining stomach contents.  He is putting out about a liter to a liter and a half of bilious fluid from his G-tube.  His gastrointestinal tract is essentially barely moving anything through it at all.  He does not have a complete obstruction but rather partial obstructions and paralyzed/very slow gut motility.  He is on a LOT of pain medication.  This may be a BIG contributing factor to the gut motility problems.  However, he would be in tremendous pain without these much needed medications.  He must take them even though they are most likely worsening his gut motility.  He can only be off his IV pain medication pump for about 20 to 30 minutes before he starts hurting pretty bad.  Fortunately, his pain has been very well controlled with medications (even the nerve pains).  He has still been battling nausea multiple times a day but we now have many more medication options to help him through these episodes too.  He is getting much better control of his nausea.    

Bill and I are fortunate that we are both able to be off work for now.  I could not imagine trying to handle all of Brody's care without us both being here.  Brody prefers to have mom or dad caring for him rather than a nurse.  It's quite the daunting nursing schedule.   Bill and I have essentially become full-time nurses.   Without 2 people, I don't know how in the world we would ever be able to get any sleep.   We are busy all day and night with taking care of him.   I guess, Brody would have had to get used to a nurse watching after him while mom or dad got some sleep if we both would not have been able to be off work.  We are both very worried about what these weeks may bring too.  It's so scary knowing that he his not on any sort of chemo to slow the tumor.  Each day, we wonder if this may be one of very few  last "good" days or the last good day.   We are lucky we both can be here with Brody for however many more "good" days he may have left.  We have known for a very long time that unless God grants us a miracle, we will lose Brody to cancer.   We have been trying to just take things one day and one moment at a time.  Despite the numerous things Brody has had to deal with and the increasing number of things he can no longer do, he is still a very happy child making the most of each day.  I am grateful we both get to just be here with him and enjoy this time.  

The last few days, Brody has been up for most of the night.  I am not complaining.  I have the "night shift" with Brody and have greatly enjoyed our nights together.  It's just Brody and I.  He's been a little "chatter box" and I am loving it!   We've got to spend lots of time just talking.  He is awake for large chunks of time in the day too but with lots of naps.  Things are busier around here during daytime hours, of course.  And, Brody isn't quite the chatter box during the day when the household is so busy.  I am glad his sleep is kinda messed up and I've gotten the chance to enjoy these talk sessions.  Sometimes the topics of conversation he chooses have been hard to talk about but I am glad we to have gotten through them.  He has asked me if it hurts when you die and if he could be "put to sleep so he won't feel it."  He asked, "How is it possible to not feel pain when you're in heaven?"   If he dies, can God let him come back to Earth to visit?  "Why doesn't God just take my cancer away?"  "When I die, can I just think about where I want to go and be there?"  "Can I think about Disney World and just end up riding down Splash Mountain?"  "Can I eat in heaven?  I really want to be able to eat again."  "I don't know anybody in heaven.  Can you come with me?"  These were all toughies but I think we got through them reasonably okay.  He understands that we have hospice nurses visiting regularly to help make sure they do everything they can to keep him comfortable and not hurting.  He knows they will make sure dying isn't painful and that he can be at home when he passes.  He has wonderful ideas about what heaven will be like and I told him it will be that wonderful and even more so than what we can imagine.  I let him know that I probably won't be able to go to heaven at the same time as him.  I told him that none of us really know when we are going to die and so I am not sure when I will be there nor when he will go there.  But, eventually we will all die.   He understands our time on Earth is very short compared to forever and ever.  So, if we go to heaven at different times, it probably won't feel like it's very long before we are there together.  I told him he has lots of people who love him in heaven and that he will feel overwhelming love and happiness there.  He won't be sad and he won't be in pain.  I also told him that sometimes doctors are just wrong.  There have been lots of people that were told by their doctor that cancer was going to kill them very soon and then they went on to live many more years.  I told him miracles do happen and that he has already surprised his doctors many, many times before.  I let him know that this is not the first time his doctors thought his time left was very short.  They could be wrong again.  Brody is pretty confident they are going to be wrong again.  He still tells me over and over that he is going to beat cancer.  He knows I think that's the best attitude to have about it and that his best chance of doing just that is to believe he can beat it.  He also knows that cancer kills lots of people anyway though (including kids).  He says when he grows up he wants to own a restaurant.  He likes to cook and wants others to try his favorite foods.  He wants his brothers to run the restaurant with him.  He says he wants the restaurant to be here on Earth but if he has to do it in heaven instead, then he guesses he will just do that.  Fortunately, most of our conversations have not been about dying and heaven.  It's obvious he has been thinking about these things a lot because these conversations keep happening.  It is also very obvious though that he still thinks he can beat cancer (I think his chances of this are extremely unlikely but I am glad he has this hope.  I think he's much happier having this hope than without it).  He's been happily talking away about many, many things and even the few gut wrenching topics have been easier than I would have imagined.  He's just so matter of fact about it all and just wants to know what to expect, just in case.   He seems so happy and accepting of everything.  He does ask why God gave him cancer a lot.  I tell him that I do not know why and he says, "Well, someday, God will tell me why."   He doesn't bother to keep worrying about the "why."   I wish I could do that. 

 The "why" is precisely why I have an extremely hard time believing in God and heaven myself.  I wish I could believe.  I wish I had faith.  I pray everyday and I believe it's best to teach my children to have faith.  But it's a struggle for me.  This is not new.  It's been an issue for a very long time.  (long before Brody's diagnosis).   It's hard for me to believe in something just because I want it to be true.  I need proof.  How can I believe there is a loving God who lets so many horrible things happen to innocent people everyday.  There are many things far worse than Brody has been through and that's more than bad enough.  There really isn't anything someone could possibly say to me that would suddenly make me believe.  I do have an open mind and believe in the possibility of God and heaven though.  I would not call myself an atheist.  I am more of an optimistic agnostic.  I really am of the opinion that much of the Bible is a work of fiction.  (Please don't be offended by this comment.   I respect that there are many people who completely believe the Bible and have a very strong faith.   I admire these people and greatly respect your opinion and your faith.   Again, I wish I had that sort of faith.  At this time, though, I do not).  But, even though I am not really sure of how factual the Bible may or may not be, I accept that there may be parts that are true.  Just maybe.  I have had some very unusual experiences that I can not scientifically explain away.  I also I have no proof whatsoever that they actually happened to me.  But I know they did.  They were paranormal experiences.  It's because of these that I do have an open mind that maybe there really is a God and there really is a heaven.  I accept that I do not have the answers to everything and I do not know what happens to us when we die.  Maybe we just die and maybe there is something else.   I believe it's more likley that there is something else because of my experiences (I am hoping I was just not crazy and delusional.  I don't think I'm crazy.  But, I guess lots of crazy people don't think they're crazy).  

My grandpa died shortly before Bill and I got married.   As I was walking down the aisle, I had an overwhelming feeling that my grandpa was there.  I was not thinking about him as I started down the aisle.  I was extremely stressed out and suddenly worried about the fact I was actually really going to get married.  Then suddenly, I felt this sense of calm and peace and felt my grandpa standing there.  I sensed his presence.  I turned around expecting to see him standing there.  I could not see him, smell him, feel his touch.   I don't know how or why but it was completely obvious to me he was absolutely there that day.    This one moment in my life is my biggest hope that we do go somewhere when we die.  I shared my story of this experience with Brody when he asked me if he can come to Earth to visit after he dies.  I told him my grandpa seemed very happy too (and he did).  

I have had some other crazy, unexplained experiences.  Not all of them were so pleasant.   Some were downright creepy and I hope I was temporarily insane or having waking dreams.  (Maybe I should save some of those stories for Halloween night fun.  LOL!).  

Anyhow, I have hard time believing in God and the heaven described in the Bible.  Much of the Bible is pretty hard to swallow too.   (I was brought up to believe that I had to accept Jesus Christ as my Savior and that he died on the cross for my sins.  This was my only way into heaven.  I guess I am hoping that's not true because I really don't believe it.  I believed it as a child and was baptized.  I believed whatever my parents told me.  Why would they lie to me?  Later though, I can't help not to believe it or at least greatly question it.   If I don't accept this as a fact with no real proof to back it up, then I go to hell.  Pretty cruel.   Why wouldn't I question it?  The Bible is supposed to hold the answers to my questions.  The more and more I read it, the more and more I don't believe a word of it.  It's crazy!!  Lots of crazy stuff in that book.   I can't help it if I don't believe it.  You either do or you don't.   You can't force someone to have faith.   A good christian believes that God will work with each of us in our own way and that it's not their place to judge.  So I am hoping my family and christian friends will remember that and spare me the backlash.  And, please, please remember that I do admire your faith and totally respect your beliefs.  I wish I had faith but I can't force myself to have faith).   For some reason, even though I have serious doubts on the existence of God and a factual Bible, I keep praying.   I guess it's a habit.  I was always taught to pray and especially during difficult times.  I pray to a God I don't even know is there everyday.  I guess I am crazy.  But I prefer to think, I'm hopeful.  

I know this post is getting rather long and maybe folks do not want to hear my personal religious beliefs.  But, I am facing my son's death.  I can't help but think about life after death right now.  It's on my mind a lot!  This blog is about our journey with Brody fighting rhabdomyosarcoma.  These thoughts are part of this journey.   I have actually been afraid to express how I feel about the subject for fear of many people being offended by my lack of believe. I wish I knew Brody will be in heaven and happy when he dies.  I do not really know this and I don't feel comforted by people telling me that this is so.  I don't really know what somebody could say to bring me comfort.  But, if Brody dies, telling me my son is an angel in heaven or that he is happy in heaven does not bring me any comfort or peace.    I know I will likely be told these things anyways though.   I will remember that these people mean well and they are just trying very hard to find a silver lining to a terrible, terrible situation.  I know that there are lots of people praying and have been praying for our family for a long time.  I greatly appreciate those prayers.  I am still praying too.  I really do wish I had strong faith to go with it too.  

Anyhow, we are continuing to hang in there one day at at time and one moment at a time.  It's the only way through this.  We have had amazing support from our family, friends, community, and workplaces.  I can't imagine how much more difficult things would be without that support.  It does help tremendously knowing that so many people care so much and want to do whatever they can to help.  We feel the love from all of you and we know we are so lucky and blessed in many, many ways.