Don't look back

Tonight I shared my shower with just a small, harmless insect and it reminded me of my daily experience in my college dorm.  It was tolerable.  I turned up the heat and allowed myself to think.  I thought about all that Ty has missed over the last nine months.  How shocked I am to this day that my perfectly healthy baby boy is now so physically weak and underweight.  How sad I am when I look at his "life before cancer pictures" because he can never be that baby again.  He can never get that time back and he will never get to be an active three-year old.  I feel so robbed.  Even worse, HE has been robbed.  Robbed of so much fun and laughter. 

Before cancer, I was happily living in a world of simple blessings.  It was a perfectly fine life and I want it back more than anything... but there are some things that this experience has given me that I am actually grateful for.  Especially the intensity of my own feelings.  I hadn't known the depths of my love, because they had never been challenged with such ferocity.  I had otherwise been unaware of how great my instincts are to protect my children.  I would have never imagined that I would be capable of witnessing and living this alternate life that I have been thrown into.  It's not fun, and it is cruel, but it is shaping me forever.  I think it's the same for Ty.  He has always been so special, but I promise you that he will grow into an amazing man who does great things.  I hold myself personally responsible to be sure of that.  So, I decided that I need to stop looking backward.  That we need to continue to plow forward with a vengeance. 

When I returned to the room after my shower, I told Lou that I needed to find the DNR that I carry with me and tear it up (a legal document that reads "do not recusitate").  He debated with me a bit, but ultimately agreed.  We are here at the hospital, subjecting Ty to his FIFTH shunt revision, because we have high hopes for a cure.  As long as Ty is actively being treated, there is no need for me to carry this horrifying sheet of paper with me everywhere I go.  I am not ready for that.  When I signed this in March, Ty was in a catasprophic state.  His doctors didn't think there was much more they could do for Ty.  They didn't know how he would respond to the radiation, and if he didn't react well they feared he would end up on life support.  We are not in that same place today, and I don't ever want to end up there again.  Tearing that piece of paper in two felt amazing. 

Ty's surgery went well today, but it caused a ton of bruising.  The VP shunt was placed back on the right side of his head, and his amazing sugeon used an existing hole in his skull for the tubing rather than drilling a new one.  Because of this, Ty's healing process shouldn't be as painful. 

To help you get a better understanding of what his VP shunt does: there is a tube running from the ventricles in his brain that is connected to a programmable valve placed under his scalp.  The valve opens to release pressure when the fluid in his brain begins rising.  On the other end of the valve is a much longer tube that runs all the way from the top of his head, down his neck, across his chest and into his belly (where the extra fluid gets dumped and reabsorbed by his body).  There is a large incision at the top of his head, a small one behind his ear, and another big one in his stomach where they reached up to snake the tubing all the way down.  It is that process that causes the bruising.

I just want to take a minute to tell you all what a great neurosurgeon Ty has.  He has two boys the same age as Ty and Gavin.  Over the weekend, he stopped by on both Saturday and Sunday to check in and say hello. Both days he had off, and both days he brought his son along with him to say hello to Ty.  After surgery today, he came up to our room to tell us how it went, then he reached into his pocket and handed me a picture that his son had drawn for Ty.  In the past, he has also showed us pictures of his son wearing Ty's "SuperTy" T-shirt to bed at night.  This is all so important to me because I know he is vested.  I know he cares about us and is doing everything he can to treat Ty as if he were his own.  This is how every doctor should be.  He has a warmth about him that makes us feel very comfortable.  It's like we've all known each other for years and I love him.  Some day I will have to tell him that!

I mentioned yesterday that we may be able to leave as early as tomorrow, but that is no longer an option.  We decided to keep Ty on TPN (intravenous) nutrition for at least another week at home, and there is a 24-48 prep period that is required before they can send him home with it.  They need to be sure that they have an accurate dose because it is very high in sugar.  If Ty's electrolytes are off, he may be at risk for hypoglycemia during the day when his pump isn't running.  We considered the pros and cons of staying in the hospital an extra night or two and how that might affect Ty mentally, but he is so incredibly underweight that we decided it is more important that we focus on beefing him up over the next few months if he is going to win the championship here. Ty was 27 pounds when he was diagnosed in August.  He is now only 22 pounds and he's grown about 6 inches since.  Ty has a lot of catching up to do.

So... onward and upward!  It's midnight, Ty slept all day and just informed us that he wants to "party all night" again.  Oh geez.  When Lou asked him why he likes to sleep all day and stay up all night Ty answered "Because!  That's why!"  Really?  That's the best you could come up with, Ty?  I'm exhausted and I do not foresee a restful night in my future. 

He isn't feeling the best tonight, but he's still pretty darn good considering he had surgery on Thursday, chemo on Friday, then surgery again just four days later.  He is SUPER TY!  Which reminds me... you may have noticed that the domain name on this blog is now redirected to http://www.superty.org/.  We just felt like it would be easier to share with a supercool URL like that, and we have plans to incorporate information about his foundation in the future (hence the dot-org...). Of course, the orginal blogspot URL will continue to work as well. 

Okay everyone.  Wishing you all a good night.  Ty and I are going to watch a Curious George movie and try to settle down for the night.  Thanks again for all of your love.  Hugs and kisses from Ty.