Noah update

I'm very tired and honestly don't have the heart to write much right now, but don't want to leave people wondering.

I'm at a loss to really say how Noah is doing.  I can describe what we see, but I really have no idea what it all means in terms of progression, timeline, etc.  We have no map.  This isn't like other well-defined diseases where you can generally expect A to be followed by B which is followed by C.

He is sleeping a lot - usually gets up and gets on the couch for a few hours per day.  On a really good day he'll play on the floor for a little while, but he generally just rests on the couch with his stuffed animals and maybe some Imaginext toys or Legos.  He doensn't usually play with them - he just wants to have them there.  By early afternoon he is back in bed and usually down for the night.  He might wake up for a little while in the evening but usually stays in bed with a DVD (we were blessed to find him a portable DVD player on Black Friday).  Some days he comes back out for a little while in the evening.

He is hurting.  He'll start on a fentanyl pump early this week.  No one wanted to start it on a holiday weekend when Dr. B was going to be out of town.  I agree with that, but am eager to get it started maybe on Tuesday.  For the first time in his life he is asking for pain medicine and volunteering the information that he is hurting.


He is throwing up.  When we got home from the hospital, we changed from giving nausea meds as needed and we scheduled them around the clock instead.  For several days it seemed to work, but for the past three days he's had episodes of retching and vomiting every day.  His stomach is empty so he throws up bile and small amounts of blood.  There is also blood in his g-tube drain bag every day.  If he moves around much, his urine is very bloody also.  We are going to hem/onc tomorrow and we plan to ask the doctors if there is anything else we can do for the nausea - since they deal with cancer patients, they may have ideas that no one else has had.  (He's on IV zofran and IV benadryl every 8 hours around the clock.  He can't do phenergan because of all of the opiates he's on.)

He is weary.  There are few laughs and few real smiles.  Sometimes when he sleeps he is very hard to rouse, but a lot of the time he will immediately respond to a touch, a kiss, etc.  We have a video baby monitor set up in his room so we can see/hear him at all times.  If he rouses at all and realizes that I'm not there, he will usually start to cry, but by the time I can step across the hall to him his eyes are closed again.  I'll sit down and hold his hand and his eyes will open again and he'll usually give a little smile or tell me he loves me or kiss my hand.  He told us God has been talking to him about heaven but that "the words are a secret."  Every now and then we really get a great sparkly laugh or some of his classic, animated talk.  We've been slowly doling out some things we'd set aside for Christmas.  I'd picked up the 2 disc set of the new How to Train Your Dragon DVD's and I gave him one of them the other night - he was very happy and animated when telling me about it.  Some days are better than others, but on his best day he is a million miles away from where he was three weeks ago today.

He is not despairing or fearful.  Overall he seems very much at peace as long as we are controlling his pain, he's not throwing up, and as long as he can be with Mommy or Daddy or a sibling at all times.  He has not complained one time ever in any way.  He is so brave.

I wish we could find a better physical set up for him.  We haven't moved him to the playroom because we don't have any private duty nursing in sight right now.  He won't sleep alone, so Jeff or I would need to sleep in there on an air mattress.  Also, there is a door from the playroom to the kitchen so we can shut it off there, but it is mostly open onto the dining room with just a big arch opening and no door. Right now I think that it might be hard to keep things quiet during the afternoons when he is sleeping.  On the other hand, it is hard to stay with him or have people around him if his bed is in his room.  It is a very small room that he shares with his four brothers, and there is just enough room between their bunks and his hospital bed for us to set up a small metal folding chair.  Jeff and I are spending a lot of very uncomfortable time sitting beside him in that chair - I don't say that to complain, because I would do anything to comfort Noah - but it is just plain difficult to manage right now.  One thing we loved about the Hospice House where my father-in-law was is that the rooms were spacious with lots of seating - several of us could sit around his bed while others could sit on the couch and visit or pray.  (That Hospice House is not affiliated with our hospice agency and we wouldn't send a little child there anyway. )There doesn't seem to be a good way to create anything like that here.  Rearranging who sleeps where won't help, and either will moving Noah to our room.  I suppose that if it becomes clear that the end is imminent, we could move his bed then because we would want/need to sleep by him anyway.  If any of you who know our house have any ideas, PLEASE let me know.  

Jeff and I are beyond exhausted.  (Jeff said that saying we are exhausted is like saying the ocean is damp.) Noah's medicine schedule is insane, and at this point we don't have any help.  This is all very surreal and disorienting - I can't ignore the fact that it is Christmas time (and birthday season at our house - we have three children with birthdays in December).  I have 7 other precious children and we can't just skip shopping for presents, decorating the tree, making cookies, and so forth, but it is incredibly disorienting to be wrapping presents and working on funeral plans in the same day.  I don't know HOW to do any of this - I really don't.  Sarah's 9th birthday is Friday the 2nd, and we always go to a local orphanage/children's home after dinner on her birthday for horse-drawn carriage rides, a live nativity, petting zoo, lights, etc.  I don't know what to do.  Noah can't possibly go.  If we don't go, it feels like we are cheating the other children and it isn't fair to make them miss out on everything just because Noah can't go.  On the other hand, I know that all but the youngest children will feel the bittersweet pain of having fun while Noah is missing out.  We've encouraged them to laugh and have fun (even took some of them to the Muppet Movie yesterday) and are trying to help them understand that it is OK to have fun and joy even in the midst of pain.  We're trying to make as much of a big deal out of their birthdays as we ever have, and to do the Christmas traditions that are most important to us all.  The last thing Noah would want would be for us to all sit around crying and staring at him!  He has ALWAYS found a way to find joy in any situation, or to make joy if he needs to and we want to honor that.

I need to emphasize that we have NO idea how Noah really stands right now and what his prognosis is right now.  I can tell you that everyone involved in his care feels that he is very much in the end stages of his disease, but whether that means days or weeks or months is absolutely beyond anyone's ability to estimate.  It is very remotely possible that he could gain strength and start to do better.  He could go on like this for a long time in theory.  His hospice team has encouraged us to go ahead and finish making funeral plans so that we are at least done with that.  It won't get any easier to do it if we wait, so we've been working on that.

I have an off the wall, and honestly maybe silly or shallow prayer request along those lines.  Most cemeteries in this area (in the South East, really) seem like factory set ups to me.  The main ones in our town are right up against one of the main highways with no fence, few if any trees, and no typical headstones allowed.  Only flat metal plaques are used and only plastic flowers are allowed.  They are utterly impersonal and ugly and I can't imagine visiting a loved one there along the side of the highway . . . but because Jeff's parents have plots at one of them, we could have a free plot for Noah.  There is one lovely, classic, old-fashioned cemetery not far from our house - pretty iron fence, tons of trees, individualized stone headstones, hills, etc. all off a quiet road - but no way to get a free plot there.  The hospice social worker has been "running interference" for us by going to different places to find out their policies, get prices, etc. and to get a feel for which funeral home would be the most compassionate (we had a REALLY rude man at my father-in-law's funeral home).  It has helped a TON not to have to go out and do all of this in person.  She is checking on the pretty cemetery tomorrow and hopes to have some information about the pricing.  I KNOW that he will be in heaven and that we are only burying his body, and I KNOW it's probably just over-emotional and irrational, but I want him buried in a lovely, peaceful place where we can sit and visit and take flowers.  Please just pray that either the Lord will make a way for the nicer place or that I will have peace and acceptance about using the ugly place.  I am so sick with myself - I've never purchased the Gerber Baby Life Insurance for any of my children, but for some reason after Noah was born and I was looking through all of the freebies from the hospital, I really thought I should apply.  I did apply, but I waited too late and there were already some questions about his health by the time I did so.  We went back and forth giving more info as needed, etc. but he was eventually denied.  I am so sad that I didn't do it the day we came home from the hospital so that we wouldn't even have to consider the costs of a funeral.

Now that I wrote that, I want to emphasize again that we REALLY don't know what to expect here.  It's possible that in a few months I'll be saying that he's doing better - not likely, but possible.  We are working hard on these funeral plans because one way or another they need to get done, and the general consensus among Noah's local medical team is that we need to do them sooner rather than later.  We are also having to have enormously agonizing discussions with his medical team.  When we first enrolled Noah in hospice, it was a wonderful thing that we had continuum of care and could seek life-extending treatment for him while in hospice.  Now we are seeing the other side of things - because this is not typical or adult hospice, we STILL have the ability and the need to make choices about what to treat and what not to treat - when to intervene and when not to intervene.  With Jeff's dad, it was easy in the sense that we could all have the closure of knowing that it was comfort and quality only from the day we put him in hospice.  As hard as it was, there was a peace and a closure in that - no hard choices to make.  It's not that way with Noah, and it is so very, very difficult to think though what we will and won't do.  We can't yet bring ourselves to saying comfort ONLY but we also know that we don't want to be too aggressive either.  For example, we are keeping his hem/onc appointment for tomorrow because keeping up his hemoglobin helps him feel better . . . but there may come a time where the benefit of a transfusion may be outweighed by the discomfort of taking him all of the way to Greenville if he starts to feel worse.  We even agonized a little about doing this tomorrow now that his pain is not well controlled and now that he is vomiting a few times a day.  We decided in favor of going in the hopes of getting some nausea relief and so that we could talk more to the hem/onc doctors about things.  We met with Dr. B last week and discussed some of this, and will be meeting again probably this week to discuss more.

Please pray specifically for these things:
-- better pain and nausea control for Noah
-- that we will all find peace and joy during this season
-- for wisdom and peace as we make decisions about treatment and all of the other hard things we have to discuss
-- for peace or provision regarding the cemetery (please forgive me - I know that is not really important in the scheme of things, but for whatever reason it weighs on Jeff and I)
-- for the other children as we help them navigate joy and sorrow and fear all at the same time
--for some sort of rest for Jeff and I - it isn't possible to get more than a very few hours of sleep a night, and I'm not sleeping well even when I do sleep
-- for wisdom and discernment about so many things, and for time to do things - it's been suggested that we celebrate Christmas early.  We aren't going to do that right now, but I am working hard to get everything wrapped, decorations out, and everything organized so that we can celebrate an early Christmas at a moment's notice if we need to do so.  My shopping is basically done - we simply don't have the means to do much this year, but were able to brave the Black Friday madness and get a gift for each child - but the tree is bare and I haven't started decorating or finished wrapping.  I also need to find time to get the children out one at a time so they can shop for their "Secret Santa" gift - they each draw the name of one sibling and shop for him/her.  I ordered some natural colored frosting from Whole Foods and will pick it up after hem/onc tomorrow - I am determined to do our annual tradition of having friends over to decorate Christmas cookies.  Having said all of that, each day I think "I'll do xyz tomorrow," but then find my day rapidly consumed with all that must be done.  I know I will rest easier when I can put the Christmas to-do's behind me and know that we are ready to go early if needed. (Please don't think that I am implying that I need a "Martha Stewart" Christmas - we keep things simple and family/memory making oriented, but no matter what, there are certain things that need to get done.)
--for wisdom and creativity about where in the house to have Noah and how to arrange our house.  I want so much for people to be able to come and visit and sit with him, but only having room for two uncomfortable little folding chairs makes that hard - and there is really nothing inviting or restful about being crammed between a hospital bed and a row of bunk beds!  When he is in his room, I'm in there a lot, and if I'm not in there, I end up having to run across the house all of the time when he calls for me.
-- for efficiency. The only time I have to do things are when he is sleeping hard or resting peacefully, and even then there are only a two breaks in medicine administration when I can really be away.  Part of me wants to spend every single moment sitting there staring at him, but the rest of me realizes that I have seven other children, a husband, and household to manage.  I need to find the balance so that I don't shortchange the others but don't look back and regret time I didn't spend with Noah.
--most importantly, for us to all run this race well.  Really, none of the other stuff matters like this does.  We want all of this to bring glory to God.  We want our children's faith to be strengthened, not broken, and we want to be found faithful in all of this.  There is nothing in the world that I care about like this, and nothing I would trade for just being able to finish well.

I can't wax eloquent or be philosophical now.  I need to go give more meds, but I don't want to say all of this earthly stuff without sharing about the Lord, so here is the short and oh-so-sweet version: He is enough.  His grace is sufficient.  His intentions toward us are for our good. He loves us and loves you all so very, very much, and the only reason we are celebrating His birth is because He came to die for us. 

Blessings,
Kate