Thursday, November 3, 2011

i'm not dead yet

We are at the halfway point in Peters treatment.  But it does not get easier, at a  benefit dinner for for seminarians we get the phone call that Pete has a 103.5 fever.  What to do, give him Tylenol hope the fever goes down and take him to the hospital in the morning or get to the ER around 10:30 p and get a room around 4 am. .  He should not be nutrapenic (no immune system) yet ,he finished the last round of Sunday and his numbers were really high on Weds. So he should not be in danger , we call the hospital to see what to do and they say come on in, we will check his blood and see where he is at and if it is ok he can go home. Of course his numbers have plummeted and at 4:30 am we are back on floor 8.  Blood cultures, nose cultures and a chest X ray later we do not have any idea what the problem is.  It points to something  respiratory so it's either contagious or not and till we find out Pete can't leave the room and everyone except family need to dress like spacemen to visit.

So this tale starts on Friday night and we are now at Sunday night (JETS jets jets jets). Still no real diagnosis, informally the Docs think it is walking pneumonia  and that is not contagious but till we know for sure we are still in isolation. There was another fever today so we are 48 hours from leaving as they take more blood cultures. We continue to hope there are no nasty infections lurking , Peter has more antibiotics surging thru his system that any bug that beats that will be one bad mo fo.

 Today at church (ST. Joes ) the pulpit announcement asks us to pray for the repose of the sole of
Peter Searsearch , wow thats a close name how weird is that.  Turns out not so weird one of our friends had a mass for Peters health and they killed him instead. After a couple of frantic calls from friends we returned him to the land of the living now we need to get him home.

Saturday, October 15, 2011

Vampires and Hand jobs

3 months in and we are at the clinic waiting to find out if Peter will need blood products (yep that's what they call it).  He has need blood and platelets in the past so this is not longer as weird as it should be.

 The Doc comes in and says lymphoma will hide in the testicles. From what I know lymphoma doesn't really hide at all , it shows up as a big freaking tumor but as I am constantly reminded I am not a doctor or a radiologist. So now this resident is going to feel up my son.  I casually mention that we have been in treatment for 3 months and you are the first doc to mention that his testicles need squeezing and since he is 17 I think he'd prefer it if you didn't put on the big  plastic gloves.  This is why the residents don't like me.  

I remember being 17 and I would not have lived through the embarrassments my son has had to endure, though he is thinking about getting a tramp stamp that says exit only with a sign pointing down.

Luckily my sister sent us seasons 1 thru 4 of It's Always Sunny in Philadelphia, which lets a father and son talk more frankly and a lot more funny.  So after the Doc is done with her slap and tickle I turn to her  and to my son's horror say I think I have cancer now too.  (this is stolen directly from the show). He thought is was really funny , not so much her.

Turns out no need for blood products, he gets to go home.

Next Day Edit

A friend asked why I bagged on the Doctor for the hand job.  I think I must explain.

The Protocol that Peter is on is unchangeable.  That means if his nuts swelled to the size of softballs (the original size of his tumor) the regimen of treatments would go on exactly as they are right now.  4 more Chemo's and some radiation at the end.  This Lymphoma spreads and hides that is why the regimen is so intense, very quick but very strong chemo agents. This protocol works and has worked for 15 or more years and this resident was not doing anything to help.  Most of the residents we have met are great, 2 have been too smart for their own good.  This Resident did not help and lost the patients confidence .

Tuesday, October 11, 2011

What I Learned from Tim Tebow

I'm a sports fan, a skeptic, and a people watcher. On Sunday Tim Tebow was adored by the crowd at the Broncos's game.  He played well enough to assure a come from behind loss but excited the crowd and the whole town with his performance.  I know if it was me I would have spent the night with all my new found best friends knowing I had the next day off.  I also know I am no Tim Tebow.  I would have never thought to spend the next morning on the Oncology floor at Children's Hospital.  Celebrities come to hospitals, I (as a skeptic)  used to question why they do. I don't question it any more, it cheers us up when we see them.  It also cheers us up when we see friends and family.  Tim Tebow visited all the rooms on the 7th floor,  and he visited Peter.

Here's what I learned.  Tim came into the room and introduced him self and his friend Erik  " Hi I'm Tim" how are you Peter. He asked what Peter was reading, he talked about his brother Peter who is studying at the Denver Seminary.  Within a minute everyone was comfortable the "adored " Bronco quarterback Tim Tebow was now a friend talking to Peter.  It was amazing how easily he was able to ease into this situation.

I learned to quickly look for something in common, not to worry about what you might see ( It is scary opening a door on the cancer floor) but instead what you might share. It was a transformitive moment for me. It was not about "Tim Tebow Quarterback" but Tim the person meeting Peter the person  (not the cancer patient). They talked about shared passions, they talked about Peter's High School, and learned enough about Peter to have him lead them in  a prayer. Why is this so cool, because that is what Peter will remember, it was the first time anyone had ever asked him to lead a prayer. Tim and his friend Erik made a moment that was special to Peter.

So when I go visit a friend in the hospital , or talk to a friend who has someone in the hospital, I will from now on,  look for the common thing which will make our conversation special. I will not try to make myself important but make the moment important.

I will forever thank Tim Tebow and Erik Dellenback for teaching me this

Sunday, October 9, 2011

Cancer Dad

I have read that 50 or so parents find out their kid has cancer every work day. It was on the InterWeb so it must be true.  Nothing prepares you.

Socially irresponsible folks will tell you  "You only get what you can handle" , "You will be stronger because of this" How did this happen" (only slightly nicer than,is it your fault).

Better to say " oh my God that's awful, what can I do to help", " I will bring a big dish of food to your house".

Hugs with out crying helps a lot as well.

How do you find out , Me I spent a weekend telling my boy to go out and get some exercise you won't get better if you spend all your time on the couch.  We decide maybe we should go to the doctor to see what is making Peter lethargic, Doc guesses walking pneumonia , lets get an x ray, turns out he doesn't have pneumonia, yea.  Driving to pick up his brother at summer football practice after listening to the Jimmy V speech on ESPN (I don't know why other than it was the V Foundation day) on the speaker phone the Doc calls and says we need another X ray there is a large spot on the lung.  A X-Ray and Cat Scan later we are in the ICU at Children's  Hospital with a tumor the size of a base ball  in a 16 year old body.

A week in ICU radiation to shrink the tumor no diagnosis but everything points to some kind of cancer, no miracle when the Oncologist comes in and says, Great news he has large diffuse B cell Lymphoma.  

How is that great news,  Onc says this one is very treatable and the prognosis is fantastic.
Well it is great to hear that but it's Cancer right.  Oh yes but treatable.

Off to the Oncology and blood disorder floor (floor 7).