No More Chemo...I'm Calling It

Generally, when I hear the statement, "no more chemo," I feel a flood of happiness.  I usually hear it as a celebratory exclamation as someone has reached the end of a successful hard-fought battle against cancer.  It's a time of rejoice and celebration.   I remember when Brody finished his first year of chemo and we entered that wonderful year of remission.  If only I had a time machine to take us back to that wonderful year.  It started with that statement of "no more chemo."  It was the happiest year of my life.  We had our super-star 5 year old cancer survivor free of any evidence of disease and his loving, understanding, always supportive brothers, 8 year old Geordi and 6 year old Jaden.   It was an amazing year full of adventure with a whole fresh perspective and appreciation for all the good things in life.  Cancer certainly has a way of changing your priorities in life.  Such a precious year of no more chemo!

But, today....today, those words take on a whole new meaning.  "No more chemo."  No more options left for us in this wretched fight!  That last little sliver of hope vanished! 

I can't say I was surprised to hear those words today.  I can't say I really expected there were any options left that would actually cure my son.  I was expecting the most I could hope for was maybe more time.  But at what cost?  Every option left would decrease Brody's quality of life with maybe a very minimal gain in length of life. 

Today, our oncologist had the very difficult task of "calling it."  He had to be the one to make that decision.  The one to decide, "when is enough, enough."   "At what point are you doing things to Brody rather than for Brody?"  This is the point now.  This is the point and he's "calling it."  From this point, if we continue to treat the cancer, we are doing things to Brody, not for him.  Well, we are all FOR Brody.  We support Brody 100% and have to accept that what's best for Brody is to "call it."   "No more chemo." 

As Brody's mother, I could never be the one to "call it."  I could never be the one to utter those words and take that responsibility.  Truly, I have known for awhile that we had reached that point.  But I couldn't "call it."  I couldn't give up.  You always tell yourself to never, never, never give up in this fight.  It's the basic battle cry.  It's a required battle cry.  Thank goodness, I don't have to be the doctor.  I am Brody's mother and will continue to do whatever is best for Brody.  I am not giving up.  I am doing what's best.  "No more chemo."

My heart is on the floor, heavy as a stone.  How do I pick it up and move on?  How can this really be happening?  When am I going to wake-up from this nightmare?  How do I find the strength to cherish and enjoy each precious moment we may have left? How do I tell Brody the words we heard today?  Do I tell Brody?   How do I lift up out of this woeful sorrow and back into the moment, back into life?  Why can't I grieve later?  But I just curl into a ball and keep crying.  I pray and pray and I pray.  I can't tell you how many times just today I've prayed.  But here I sit right now crying. 

Increasing Pain and Nausea

Sorry (once again) for the lack of updates-- we of course, have been remaining very busy.

Brody has been having increased pain and Nausea the last week or so. The nausea hasn't been causing him to vomit or dry heave thankfully and we have 4 different medicines we can throw at it. so we have two of them scheduled every six hours but we have them staggered so he gets one or the other every 3 hours. The other two can be given every 4 hours as needed. We try to stagger these so if he does start to feel nauseous, we can give him "something" for it but sometimes he insists on getting something for it.

Brody's pain levels have been steadily increasing... his left leg hasn't been bothering him too much but he has told us that he can't feel much in his left leg-- he has a little bit of muscle control and can "sort of" stand on it. He was complaining about his left foot itching a few days ago and this really bothered him because he couldn't feel the scratching but he hasn't been complaining about his left leg much if at all the last few days. We have been continuing to put on his "magic cream" on his left calf and back and this has helped to control his leg pain-- we use a cream with ketamine and amyltryptoline in it (we were using it with lidocaine too but we didn't think it really helped much and it appeared to be drying/irritating his skin).

His belly pain has been increasing somewhat and his right leg has also been bothering him now mainly in his calf all the way around... we are unsure of the cause of this pain and it seems to come and go-- it can be very severe (Brody rates it a 9 out of 10) and his previous pain max (when he has to describe it on a scale) has never been more than a 6... his usual is a 3 or 4. We are thinking it is possibly cramping or maybe neuropathic pain from the tumor up in his spinal colunm-- we have begun to use the "magic cream" on this leg too.

In addition they (our oncologist/hospice doctor/hospice nurse) have been increasing his pain medicine dose the last week or so in an attempt to get him comfortable... the latest increase has seemed to help him now and he has been sleeping pretty good overnight without breakthrough pain. Yesterday he was up for about 9 hours straight (feeling mostly good the entire time) which is the longest stretch he has had awake in probably a month.

Trish and I have given up trying to sleep when we are taking our shifts with Brody. Per our schedule he doesn't go more than 3 hours without us giving him nausea medicines and he frequently needs us to do something between these too and he sometimes wakes up in the middle of the night and watches TV for a few hours. Trish has been taking the night shift and I take over between 3:30 and 6 am depending on when I go to bed. I've been trying to be in bed before 9pm.

As you can imagine we keep pretty busy... between keeping up with the house/meals, homeschooling Jaden, Brody care, appointments, etc... we have very little free time (except when everyone is sleeping-- like right now).

Brody has remained in good spirits throughout all of this-- lives in the moment as we all do and we couldn't be prouder of him in his ability to deal with everything he has to do or can't do anymore.... Brody passes his time mainly playing video games or watching TV he isn't really interested in reading, doing crafts, or playing board or card games right now. He really calls almost all the shots-- if Jaden is doing homeschool and Brody wants him to play call of duty with him (surprisingly Jaden does protest this sometimes).... School is paused.  He watches a lot of TV shows and hasn't really been interested in watching any movies lately.... it seems like he doesn't have the attention span to get through an entire movie-- he gets bored or sleepy before it's over.

Brody is pretty upset with Turner Broadcasting/Dish Network as they could not come to an agreement and so Dish has (at least temporarily) dropped the Cartoon Network-- Brody's favorite shows right now are-- Adventure time, Regular Show, Teen Titans Go!, and Amazing world of Gumball-- he has a bunch of these recorded on our DVR...his other favorite show is Rugrats-- these we have been watching on Amazon Prime and thankfully there are a ton of them. It is hard to get him interested in trying new things (like watching movies or TV shows)-- He has refused to watch the move E.T. although we are sure he would like it.

Jaden an Geordi have been very accommodating of Brody and we are very proud of them too... they understand that rule #1 in our house is to not upset Brody.

We have continued to get plenty of support from everyone and for that we are very thankful... the scout families have been stepping up again and have been bringing us meals twice a week-- if anyone else would like to help there is an online scheule here... 

http://www.takethemameal.com/meals.php?t=LJUQ3006

We have been mainly eating/cooking in the Camper in our Driveway (Trish's parents brought up) since the smell of most foods makes Brody Nauseous-- we have been using our crock pot quite a bit.

Anyway---that is pretty much how we are doing-- Brody's pain and Nausea while increasing have been mostly controlled and we have been getting enough support to take care of him properly and spend time with him and we have been remaining in good spirits despite all of this.

Thanks to everyone that has followed us on our journey and have been helping us in so many different ways.

Bill

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.  

Brody is Home

Sorry for the lack of an update-- We were able to get everything in place to leave the hospital on Wednesday afternoon. We had a lot of people (mainly the discharge planner at the hospital) jumping through a lot of hoops to get us home-- big thanks. It was somewhat easier this time around since we knew who to deal with-- it was difficult previously because the discharge planner there didn't know what resources/companies available in our area and also had to work everything out with our insurance carrier or whatnot. We have been extremely happy with Promedica Home Infusion pharmacy-- they are great about getting us stuff we need quickly (they even made a med run down to Columbus for us so we had pain/nausea medicine for our ride home).

Brody had to get his port needle replaced and a few other delays we ended up not leaving Nationwide Children's Hospital until about 6 pm and we didn't make it home until 9 pm.

Trish stayed up late organizing our new collection of meds (they are mostly the same) and writing up a new schedule that so far is working out well. Brody has been comfortable since we got home-- the big things are keeping his pain and nausea under control. His G-tube is draining nicely-- and he slept a solid 11 hours again.

Geordi is still at 6th grade camp this week (comes home today) and Jaden has been at Trishs' parent house with a cold that we want him to be rid of before he comes home-- so Brody was getting a little bored hanging out with Mom & Dad-- the boys' friend Levi came over and played with Brody for a while (Mine Craft and Call of Duty).

As mentioned previously the tumor in has been affecting the nerves going to Brody's left leg mainly causing nerve pain and he has been experiencing decreased motor function in this leg-- between this, the surgery/infection keeping him in bed for 2 weeks he hasn't really used the leg much and he is now having problems standing and walking-- he did get up 5 or 6 times yesterday to go potty which required me to carry him to the bath room... he was able to walk about half way back to his bed (with help) the last time he went last night but he can't really move his left leg much-- we are hoping this improves.

That is mostly it.... will try to write more when we get a chance.

Bill