6 Months

Yesterday marks 6 months since Nate ran in to the ottoman.  A little over 6 months ago, I would have told you that there is no way we would have survived what we have been through...but we are here...barely, some days...but still here.  This last month has definitely been the most difficult time in any of our lives.  I wish we could say that we have now come through the worst of it.  Unfortunately, we know that the worst is still to come.  At this point, I really do question how we are all going to make it through, but I know that God has brought us this far and will see us through to the end.

Nate's little body has had too much.  I can't even describe to you how skinny he is.  His bottom has literally disappeared and his bones are sticking out everywhere.  He looks like a skeleton...he is starving.  We have tried everything we can up to this point and have a new plan starting tomorrow.

Nate came home from the hospital on New Year's Eve with a tube down his nose, and sadness in his heart.  We had Nate's Christmas on New Year's Day night (Christmas Eve) and the next morning (Christmas morning).  Nate's Christmas Eve at Grandma's was decent.  He was excited about all the presents and even sat up on his own for a bit to open a few.  He even enjoyed driving over to Grandma's and looking at all the Christmas lights along the way.  Chris and I got everything ready for Santa's arrival that night just as we did the week earlier for Wes and Ellie.  There was no jumping out of bed to see the wonder of the gifts under the tree.  No running in to our room to wake us up.  We carried a crying Nate to the living room and tried to get him excited about the presents.  He just wanted to sleep.  He sat and cried and said that he was a "bad boy" and a "naughty boy" and that none of the presents were his.  My sweet, special 3 year old boy, who has never done a bad thing in his life, is depressed.  It is hard to get in to the mind of a 3 year old, but I think he thinks he is sick because he was bad.  When Nate was first diagnosed, I spoke with another family who's daughter is older than Nate and they said that she had these feelings.  At the time, Nate was little enough that he really didn't over think things and just went with the flow.  He is 6 months older now, and has 6 months of torture under his belt...I think he's starting to wonder why.  So this is how Nate's Christmas morning went.  Oh how I wish I could say it was different.  The fact is that this Christmas was the first Christmas that Nate "got it", and it was completely stolen from him by cancer.

The whole weekend, Chris and I were fighting with Nate's feeding tube.  He was throwing up every single feed we gave him.  We tried everything, a constant drip, slowing the rate, speeding up the rate, giving boluses, giving smaller boluses.  No matter what we did, once a full can got in his belly, no matter how fast or slow we put it in, he threw it up.  Nate also would barely talk and wouldn't swallow anything with this tube in.  He was asking for all kinds of different food and desperately wanted to eat, but was too afraid to swallow, so he would chew the food and spit it out.  It was awful to watch, it was making him so sad.  By the time we went to clinic on Wednesday, I demanded they take the tube out and give him a couple days to eat.  They were not happy with me and we discussed many options.  Basically the only other option for him, for many reasons, is an NJ tube, which goes through the nose and down the throat but in to the intestine.  They are thinking this will be good for him because we won't have to worry about him throwing up the formula.  I asked for them to give Nate a few days without the tube, so that he could remember how to eat.  At this point, he hadn't eaten more than a couple bites since November.

They agreed to give him the weekend, as long as he was eating and drinking.  The second that tube came out, he said "Mommy, the tube is gone.  I can talk and eat dinner now".  Oh, my poor baby boy.  The first couple days he had it out, he ate SO, SO much it was incredible...then he threw it up.  I don't think his little belly that hadn't eaten in so long was ready for the volume of food he ate.  The last couple days, he hasn't eaten much...but he has kept it down.  He is still also fighting bad diarrhea from the c. diff.  He just can't catch a break.  Just as I was typing this now, Nate threw up in his bed again.  Fuck!  When will this end?!  He desperately needs nutrition to be strong enough to have his stem cell transplant.  The transplant is the ultimate hell and will put his body through so much torture it is unreal.  He needs to be as strong as possible, and at this point he is as weak as he could possibly be.  The transplant is scheduled less than 2 weeks from today and can't be put off much...if any.

The only good thing that has happened in the last few days, is that glimpses of Nate's personality have been peeking out, here and there.  He has very little energy and can barely hold his head up, let alone sit unassisted or walk, but every once in a while Nater tot will poke out and those moments have brought me to my knees in gratitude.  I miss my little boy so much.

Tomorrow, they will place the NJ tube.  I am praying so hard that this is the miracle answer we have been looking for.  I am also praying that Nate will continue to swallow food and talk to us, even with the tube in, and that he will not get depressed by it again.  I had a talk with him tonight about the tube and told him that it was a new kind of tube that he could eat and talk with and that it was going to make him strong again, so that he can run and play and not be "wobbly".  He said it was ok, that they were going to put the tube in...I hope he still feels this way tomorrow.  I just want to see him run and play for a couple days before they knock him down again with this transplant.  I want to see his butt again.

We've all just had too much.  Chris and I don't sleep and are stressed beyond belief.  I cry myself to sleep every night and wake up crying every morning.  It's the only way I can get the emotions out without spending the entire day crying.  Wes has widespread stress induced eczema that showed up shortly after Nate was diagnosed and we are just now getting around to treating.  The other day, Wes said to me, "Mommy, did you know that sometimes kids get cancer and they die?".  Why does my 5 year old have to worry about his brother dieing?  We have, and continue to talk through all aspects of Nate's disease with Wes, but I don't want either of my boy's to have these kind of stresses.  This is why I cry.  The only one seemingly unscathed is our sweet Ellie Belle.  She toddles around like she owns the place, singing, dancing and clapping to "We Will Rock You".  The only sign she shows of our family stress is a double chin and super chunky thighs because all of Grandmas, aunties and adopted aunties are taking such good care of her and letting her eat...anything...she...wants.

I know everyone wants to hear about the results of Nate's scans.  We don't have them yet.  Nate's doctor doesn't like calling us with results.  In the past, I have pushed but didn't bother this time.  I really am not nervous about the results and we really can't give him his official NED status until we get the bone marrow results back, which can take up to a week.  Really, I've had too much on my plate just trying to get Nate some nourishment to even think about scan results.  We should at least hear about the MIBG tomorrow, and I will update everyone.  I'm sorry this isn't a more uplifting post.  We are keeping the mood in our home as light and fun as possible, but our reality is anything but right now.