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Stopped Cytoxan
By Margot | June 19, 2009
We stopped the Cytoxan infusion today. Sam got about 1/2 the dose. He started peeing blood and we stopped it.  Soon after we stopped his urine cleared. I’m thinking it’s a good sign that there isn’t constant bleeding and that it’s clearing with hydration but still it’s not a great sign.  Dr. Willert thinks it might be clear enough to do the last 1/4 dose tomorrow.  She just called me at 9 o’clock tonight to talk about it and talk about a plan.  She made me feel better as I was getting pretty far out there on that ledge. We’ll see how his bladder does tonight and then either just to topo, do part of the cytoxan and all of the topo or try for the whole last 1/4 dose.
Sam had a good day before that. He and I built a bionicle and played some Uno. I just love his evil giggle when he makes me draw four. He played some of his video games and then Charlie and Andy arrived with Elizabeth. We had the playroom to ourselves for an hour since Sam has had a fever and hasn’t been able to go, the child life specialist arranged for him to have it to himself with his brothers.  They played a lot of air hockey. The child life specialist and the volunteers were laughing at Charlie who kept saying “Bring it On.” Then the art specialist helped Sam and Andy do a beautiful pastel picture. Kelly and Kennan brought me a birthday cake this afternoon and we all had cake. Then later in the afternoon Monica and Mac and Ty showed up with games and presents and the boys had a great time with them.  All of the nurses kept saying how crazy it was in our room and that it was the party room – it was our usual circus. Dr. Willert said he looks so great and aside from the bladder stuff is tolerating the chemo very well.   Sam was up playing blokus with Mac and Ty but right around the time they left he started to spike a fever and to feel crappy. Maureen came with cupcakes and we had a very nice time with her. Sam rallied to sing happy birthday and laughed at the relighting candles but really wasn’t up for eating the dinner we’d brought in and one bite of cupcake and I could tell he didn’t feel well at all. The nurse gave him some fennergin (sp?) which makes him sleep and he has been sleeping since. His fever broke and he’s all sweaty but I’m not going to wake him up to change him yet.
If I look on the bright side, less cytoxan might mean fewer side effects. If I look on the terrible side of things, less cytoxan might mean more disease and that of course scares me to death.  Neil has been out of town but will be back tomorrow night.Â
I turned 39 today but if you count cancer years like dog years which I do, I’m about 67.   Thanks to everyone for the phone calls and emails today. Don’t need to tell you my birthday wish. …
Margot
Topics: Progress Reports | 10 Comments »
June 19th, 2009 at 4:23 am
Happy Birthday! We are praying for your wish. Keeping good thoughts for Sam and for all of you.
June 19th, 2009 at 5:15 am
Happy Birthday, Margot! Sounds like an exciting day at Rady’s. Wish we weren’t all gross and germy. We would love to be part of the circus in the party room.
Wish there was more we could do.
Meredith
June 19th, 2009 at 7:38 am
Happy Birthday Margot! Thinking of you all and praying.
love, Ellen
http://www.caringbridge.org/ma/seanhanson
June 19th, 2009 at 12:05 pm
Happy Birthday Margot! Hoping and praying you get your birthday wish.
June 19th, 2009 at 1:07 pm
Happy Birthday – Hope you get your wish. That’s everyone’s wish, my dear!
The Cytoxan on the bladder sounds so rough, and what a graphic/disturbing side effect to face. I’m sorry. It just makes me wanna cry:(
I always remember Dr. Russell saying that when Hans is having a lot of side effects from IV chemo (as he did with his frist two rounds of Topo/Cytox – we had a lot of rough fevers and a very sick boy) that means…a lot of tumor is breaking down!
It was last summer about this time when we were in the hospital with fevers and found that the disease had actually broken off his arm at the shoulder. And then, he was clear after two rounds of the stuff. Now, one summer later, we’re swimming, going to the zoo, etc.
We’re praying for Sam’s miracle. Take it one second at a time – and let the good times roll up in the hosp!
June 19th, 2009 at 1:13 pm
Oh Margot! I am just sick. I am so sorry. (Was praying about his bladder here….NOW praying tons more…)
I sure hear you about the cancer years….happy 67th…
June 19th, 2009 at 2:09 pm
I wanted to call and wish you a Happy Day yesterday but I figured it would be ‘usual zoo’ around there. I was right. Natalie had a birthday party at the bowling alley and we all sat in the car talking about how we last went bowling with you guys. Nate was talking about how he missed Andy, and also pointed out – that “natalie must miss Sam, because she loves Sam.” Her face got bright red and she camly stated “I hope he is ok.” So strange how kids know when something is going on. She also outlined all of her wishes as to who is in her class next year. Sam was of course on the list.
June 19th, 2009 at 5:16 pm
lets hope Red comes back from Europe with a personalized medicine plan for Sam that allows him to take the medicine he needs.
Amazed at Sam’s sense of place and his giggle. Godspeed to your birthday wish.
June 20th, 2009 at 1:06 am
Oh Marg,
What a birthday! Funny,((you should feel 67 that 1’s coming up for me) and I haven’ had half the ravages you have!)) I’m glad you got out of the hospital for an hour or so! Why didn’t you call for more help?? All of your friends, and Elizabeth have been such “Saints!”with your having to spend night & day in the hospital! But, then, you have Elizabeth; and she is so extremely capable and so good with the boys, all of them! Thank God, for Elizabeth! And to think, that she has been with you for all three boys through infancy!! She is so good with all of them and is so kind, capable and compassionate,also a very good teacher; and she doesn’t put up with bad behavior! And, thanks to all your darling friends from Colleen, bringing over medicines,Kelly taking Charlie and bringing you a birthday cake and for Maureen, who spirited you out of the hospital for an hour! Thank you, Monica, for being in the hospital with the boys when Margot was out for her hour! Thank you, also, for ” All your frinds” on the emails like Nicole and Hallie from high school;and all your very empathtic and sympathetic friends to all the parents of cancer children and non cancer children! How fabulous!! they all are!– reaching out to you, to Sam and to Neil, praying, sending the strongest wishes, prayers and hopes for Sam to get well! You have a lot of love surrounding you! Margot; and take strength from that! Like Tom, I, too hope Neil comes back with a miracle cure or a brave new plan! He is relentless and passionate in his pursuit of a cure and a more ameliorative treatment for this damned disease! I know,he will come back with some new ideas!
Today, I had an acupuncture treatment by a very healing “Catholic” DOM, (Ironic Isn’t it? but the two seem to blend); and we really prayed together for Sam so fervently, that his little bones would be cleared of cancer! I felt a really strong sense of healing and help being sent his way! Yes, he does look so good and strong in those pictures from New York! His hair has grown back he was walking all over the city, running in basketball practice, and playing tug of war, the last day of school!
It just doesn’t seem right that he is in the hospital taking high dose chemo and peeing blood as a side effect! I hope, today he did get the last 1/4 of Cytoxin and he is done with it for a while! He seems to do so much better on oral chemo or “chemo light” mixed with a ton of homeopathic and vitamins to kill all the side effects! But then, this damn disease is so insidously wicked; that it secretly progresses “Impressively!”
Tomorrow, I hope Sam will be out of the hospital with no fever, his Dad will be home with a new game plan; and that “youall” can have a nice “Father’s Day; and a belated celebration of your birthday; and that: most importantly; Lots of Love and Laughter will abound! That’s the best cure for Sam!
Much Love Mom, “Grandma Sara”
P.S Paul called me from Australia, this afternoon; and he too wishes Sam out of the hospital and home with new game plan for treatment! He is ready to fly over with Marty and Anneli to help Sam “Play Away” from this cancer! Did you read Marty’s little note to Sam? I also, wish, not only do you have Sam cured of this evil, pediatric cancer, but that you win the Ronald Mc Donald House, so, you have room for all fo us to come out: to share some of the Love and Laughter of the “Hurricane Hutchison clan! Love Again, “Mom”
June 21st, 2009 at 5:28 am
Margot- best wishes! I know that being in the hospital is so hard. Sorry Sam is not feeling well. Hope all will pass soon! Praying for all of you! Angela (Madison’s Mom)