« School’s Out, We’re in the Hospital, Chemo starts tomorrow | Home | Stopped Cytoxan »
Day One Down -Sam’s Starting to Feel Crappy
By Margot | June 18, 2009
We are in post-chemo hydration and Sam is just starting to feel crappy. His stomach hurts and his fever has spiked again. He was feeling good all day but around 3 o’clock started to get shivery and his stomach hurt. Right after I posted yesterday he spiked another fever and had a fever most of the night. Tylenol brought it down and then around 2am we didn’t give Tylenol to see if it would come down by itself and it did. I was hoping we would be fever free today but right around 3 o’clock he spiked again. We had a bit of drama yesterday. There was blood in Sam’s urine in the afternoon.  Since we are giving him Cytoxan which is very toxic to the bladder, Dr. Willert wanted his urine clear before starting chemo. We ratcheted up the hydration and kept measuring the blood in the urine through the night by this morning, his urine was clear and we started the chemo. So far today all urine has been clear but the latest collection just showed some trace blood. Crap. He was treated with Mesna and lasex so really hoping that helps. He has been so good about everything.   He asked me sweetly yesterday if he was going to get to play at all this summer and if he has to have chemo all summer could he please not have it on his birthday.  Then in the afternoon one of Sam’s school buddies whose mother I haven’t spoken to in a while, called on my cell phone and said, “We wanted to see if we could pick up Sam and take him to the fair with us.” It was such a nice invitation and I had to say, “Actually we are in the hospital starting chemo.”   Really probably not the excuse she was expecting. It really made me want to hit the wall because Sam should be going to the fair and instead we are pumping him full of toxic chemicals. Today Elizabeth brought Andrew up to play with Sam while Charlie had a playdate with Jett. They finished building the Indiana Jones lego set I bought together and played Mario Smash Brothers for a while. Elizabeth stayed with both of them for a couple of hours while I went home and got some work done – thank heavans for Elizabeth. When Andrew was leaving he gave me a hug and got kind of sad. He said, “Does this always have to happen?” Meaning the hosptial. I said, “No it doesn’t, but when it does we just have to roll with it, buddy. We make the best of it and make it as fun as we can.” Then Sam piped up and with a big smile said, “But sometimes we just have to cry, WAAA WAAA” he said laughing which made Andrew laugh.  So I need to take my own advice and take Sam’s lead because he takes this all so well. I don’t really know how.  Elizabeth came with Charlie last night while I took Andrew to his basketball practice and I tried to talk with Andrew about things in the car. I let him know we know it’s hard on him and Charlie too and he was good about it.
Kelly said that Charlie and Jett had a ball at the beach together today and that they were fearless. I’m glad he got out to have some fun.  Andrew has tennis tomorrow and then they’ll come up to the hospital.
So looking on the bright side, one of our favorite nurses Sheila stopped by to say hello today and she said she laughed when she heard we were admitted with a fever because it guarantees us a private room. Otherwise we very surely would have had a roommate because everything is full. So that is a good thing because new chemo, plus our whole clan and a roommate does not always make for fun. Sometimes you get lucky and get a great roommate and the kids hit it off but I’m liking the private room.
I promise not to be so dejected tomorrow.   Gotta go, we are watching the The Hulk and the bad Hulk has arrived. Seems we are into the scary stuff for the day, we just finished reading the entire American Chillers book we ordered for our stay here . Not much scares our Sam anymore.
  Please pray that this chemo does it’s job because Sam will certianly pay the price for it.
Margot
Topics: Progress Reports | 6 Comments »
June 18th, 2009 at 2:17 am
again… love, hugs and prayers… M- i know your tummy has a hole in it the size of a dinner plate. Were thinking of you… Let this be a bummer start to an amazingly fun filled summer of health. If you need any games or diversions.. lemme know. Were at Childrens all the time, and will be out tomorrow almost all day. I could always swing some by!
June 18th, 2009 at 2:51 am
lots of prayers coming your way from Houston. sam is so tough and brave – it’s just amazing to me how he takes it all in stride as best he can.
marg – just wanted to say Happy Birthday. i know you probably aren’t celebrating much in the hospital, but try to eat a big piece of cake with extra ice cream. it’s free of fat and calories on your birthday you know!
June 18th, 2009 at 3:37 am
Sending you a great BIG hug and prayers your way.
Mrs. Heather
June 18th, 2009 at 4:00 am
Margot,
Soooo sounds like you had another heartwrenching day. Kids ask the hardest questions don’t they? As always you amaze me with you strength and spirit. Don’t worry about sounding dejected you don’t, you sound like a Mom who wants to be with her boys while they play at the park not in the hospital getting one of them chemo…. We are here praying for you all as always but tonight we will be a little more specific and add on that the Mesna and lasix does it’s job, that the fevers stay away, and that Sam is able to have some fun while there.
With Hope
Abra
June 18th, 2009 at 4:28 am
Margot, It’s just like your kid to make jokes with his brother to make him feel better while he’s feeling crappy. You and Neil sure have some fun and empathetic dudes. I can just hear Sammy’s voice through your writing. Hang in there. We’re hoping that the feeling crappy now will be followed by good boogie-boarding, zoo-going, basketball playing time together this summer. When we get back from SF we’ll come play wherever you are. Sending our thoughts to you – Lisa, Mack & G-man
June 18th, 2009 at 6:06 am
Sam teaches us all so much about life. What a good sport he is. He just rolls with it.
I love what Rebecca said: Let this be a bummer start to an amazingly fun filled summer of health. I second that.