Upcoming Surgery

I meant to write over the weekend but things have been crazy busy as usual.  So as I posted on his Facebook page he had a few of his yearly checkups last week.  He does however have more to come. This year his appointments were more scattered out than usual for some reason.  So last week he saw...
Ophthalmology - his vision is fine but tests did reveal that he has some minor dry eye.  This can be a result of the treatment/BMT, and likely is.  They ordered artificial tears 4 times/day and an eye ointment at bedtime and want to see him again next month to see how he is doing.

Cardiology - EKG was normal.  I have not heard from anyone regarding his Echo results - so I am assuming that they are also normal.

BMT clinic - they did a full work up and a variety of labs - all was normal there as well. 

He then went for his preadmission testing to prepare for his surgery tomorrow.  At this time he is scheduled for his yearly bone marrow biopsy, lumbar puncture, and yet another set of ear tubes.  I have lost count at this point how many sets he has had.  Of course, as always I am worried.  They said that everything together will probably take an hour and his surgery is supposed to begin at 1pm tomorrow so if you could say some prayers for him and the doctors then that would be great.  

Before all of this tomorrow he will be seen in the pulmonology clinic for his pulmonary function tests. Those have been good in the past but we must watch them closely for a variety of reasons - one being the amount of radiation he received, the other being his alpha one antitrypsin deficiency.  So he will have his PFTs tomorrow and then actually see the pulmonologist next month when he goes for the remained of her his appointments - dental, dermatology, and the recheck at ophthalmology.  This time of year is always busy for him as they check everything out and make sure he has not developed any additional late effects of treatment.  

It is hard to believe that he is 12 years old already.  It doesn't seem possible.  We are so grateful and so blessed.  He will be starting 7th grade this year.  I can hardly believe that either! He has had a great summer.  Lots of down time, lots of play time with his sisters, time in the pool and a trip to St. Louis to visit friends/family.  We had a great time.  We have really enjoyed our family time!  But there is one thing he always does alone... He went to Camp Hope once again this summer.  It is one of his favorite things and he looks forward to it all year long.  He also holds information about camp at ransom all year long :) So we hear tidbits about things he did throughout the whole year instead of him blurting it all out at once when we pick him up.  He continues to be the quiet type most of the time.  I think he gets that from his father.  One of the children he knew from camp passed away recently - I think that was the first time we shared a loss of a fellow warrior with him.  We have kept him in the dark a lot because we don't want to worry him.  He lost a fellow transplant warrior friend while he was in transplant and we did not tell him that.  I couldn't bear it.  He had enough to worry about.  To this day I still haven't told him.  He is an anxious kid and often times when he hears things like that they tumble around in his brain too much.  He was down for the entire day when he learned about the passing of his camp buddy.  This time I thought he was old enough to know though... still not sure if I made the right decision.  He knows the dangers of all he and his camp friends have endured but I think he buries that most of the time and pretends it isn't a real problem.  It is heartbreaking for children to lose friends to cancer, for families to lose children to this beast.  There have been so many stories lately of children lost - it's heartbreaking and overwhelming... Survivors guilt is also a real thing.  I don't post on our support group pages very often because so many are sharing stories of heartbreak that it doesn't seem right to share how things are going now.  I also always worry if I'm going to jinx it.  I think that is part of the reason I am so worried about tomorrow.  He is more than 5 years post transplant now.  This is supposed to be a thrilling time but part of my doesn't want to tempt fate.  Part of me will always worry I suppose.  No amount of therapy can help with that.  When you come so close to losing your child - even once, let alone multiple times - that worry stays there, it hides most of the time but rears its ugly head when tests are coming up.  You can look at your child and think - he's been fine, he looks good, energy is good, appetite is good - so he's fine - but then that ugly beast speaks up and you hear "but what if something is going on that you CAN'T see! What if the test show that there is something bad lurking below"  It's hard to make people understand that.  If you haven't ever been there it is pretty impossible to understand it.  Ok well enough of that - I'm stressing myself out more now. 

Sooo... Donavynn is not looking forward to returning to school - because he missed so much time for treatment school is harder for him and he never really got into the groove of it early on like most kids do.  He hates that he has homework every night usually because it takes him a long time to complete even the simple assignments because by the end of the day his brain is just simply exhausted. So I don't blame him.  We are going to try to find other ways to help him with all of that this year, though we aren't really sure how we can do things differently than we have been.  We are open to any tips.  :) 

I think that is all for now.  This ended up being far more rambling that I intended so if you stuck with me this long - thanks. :)  And as always thanks for the continued prayers for healing and health for our special boy!!!