Super Dad

I write to you now on Thursday morning from home, while Nevan is at the hospital with Craig having an IV dose of Chemo.  This is the first time I have missed anything Nevan has gone through since the beginning.  Life happens and I am sure it won't be the last thing I am forced to miss, but the first is definitely the hardest.

The reason I am here and not at the hospital... the reason that I have not been able to come close to Nevan at all in the last 3 days is because after nursing Nylah through a horrible cough and helping Nevan get over the Norwalk Virus... I am now fighting off both!  I am trying my best to recover, however trying not to vomit while coughing uncontrollably... not so easy!!

Since I have known him, I don't remember Craig ever having a bad cough, so I think he is safe there and he already got a stomach virus about a month ago forcing him to miss some of Nevan's first nights at the hospital, so I am pretty sure he will be saved from getting Norwalk again.  Nylah is staying at my parents place just to be extra safe so hopefully the spread of sickness will stop with me. 

Because of having 2 sick kids and a sick wife, Craig has had to take on the roll of super dad... which he is handling very well.  In one day Nevan is administered meds 12 times a day plus a mixture of feeds and water through a pump while he is sleeping.  Nylah is on an inhaler 3 x a day, antibiotics once a day and a narcotic to help her sleep. I am on antibiotics once a day, a cough mixture 4 times a day and gravol twice a day.  That's 24 meds to administer in one day plus temperatures to check, heart rate counts, meals to make and fluids to refill.  Craig did this yesterday all without skipping a beat and found time in the middle of it all to build a shed pad in the back yard! 

On top of dealing with all the new hands dealt to us with caring for Nevan, we moved into a new home about 4 weeks before Nevan was diagnosed.  It is larger than our last home which is great, but we bought the house because it had a huge backyard with nothing in it, an unfinished basement and ugly builders grade flooring that we could rip out and make our own.  In our old house we worked hard to make so many 'family' areas throughout our house.  We built a deck for us and an attached stone pad in the back so the kids could play or ride their bikes.  For the winter we finished our basement with a fireplace, oversized couch, TV and attached playroom so again, the whole family could do what they want while still being together.  Our plan was to do the same with this house... make it our own and create family spaces throughout.  Unfortunately, now when it is even more important to have family space as Nevan will be confined to our home for much of the next 2 years... we don't have a backyard, no family basement and floors that make me cringe when I think about Nevan playing on it.  I wish one of those people on HGTV could come in and work their magic for us. 

Since being released from the hospital, Nevan's spirits have gotten alot better.  He still feels pretty sad and sometimes shows resistance to things we need him to do, but his is far more interactive and we see more glimpses of our normal Nevan than when he was in the hospital.  I am very much looking forward to when the Steroid phase stops just to see how much these moods will fade.  The one thing I will miss however is his appetite.  Nevan is eating more than he ever has.  Yes it is Spaghetti for Breakfast, Lunch and Dinner, but I will take it!  My good friend Stephanie, made Nevan pasta sauce that includes pureed vegetables like Kale and Zucchini along with organic turkey and Quinoa meatballs.... so eat up my little boy... eat up!  Even with this veracious appetite, he is not gaining the weight back as quickly as I would like, so we have him on feeds over night.  It is a mixture of Pediasure meal replacement shakes and water.  His sensitivity to the NG tube is not allowing us to get in as many calories as we would like, but anything will do at this point.  Nevan has a home nurse that monitors him and helps us through with things like meds, feeds  and handling his medical equipment. 

Nevan's hair has thinned out quite a bit now and he leaves it behind everywhere he sits or lies.  We joke that he sheds more than the cat now and we literally follow him around with a lint roller.  As soon as we saw that he was beginning to leave hair on his pillow, we decided to have a talk with him about it.  I brought up pictures of other kids with cancer on the computer and showed Nevan.  We showed him that he wasn't alone and that lots of other kids are battling the same thing.  We also wanted to show him that he will lose his hair just like those kids also.  He was very quiet through the whole conversation and I wasn't sure how he was going to react.  We told him that we could cut his hair now so that he wouldn't have to watch it fall out or we could leave it.  He said that he wanted to watch it fall out, which didn't really suprise me since he needs to watch everything... from his blood draws to his dressing changes.  While most kids shut their eyes and grit their teeth, Nevan must see all that is happening and asks questions throughout.

In the next few weeks, Craig and I will be reaching out to all our friends and family to cash in on all those offers of help.  We will be organizing a few VERY much needed fundraising events this fall and will need some help with planning, ideas and volunteers to help.  The amount of help and support we have recieved so far this past month has been overwhelming and we really want to thank each and every one of you... which we will... in time. 

Cute Story of the Day:
Me: "Nevan can we try to eat something other than spaghetti?"
Nevan: "Hmmm thats a good idea mommy, last time I fulled myself up"
Me: " great, what should we make?"
Nevan: " How about different kind of noodles"
Me: "Oh, ok... what would you like on the noodles?  How about a bunch of vegetables and some  cheese?"
Nevan: " That would be perc-fect! How about some tomatos, and mushrooms, and carrots... but no peels on the tomatoes and I don't want to see the carrots.... and some meat."
Me: "So spaghetti sauce?"
Nevan: "Yes, but not on Spaghetti Noodles!"