Saturday, November 21, 2009

The Good, the Bad and the Ugly!

Now that radiation is over, there is a definite improvement in Sammy. Brian messaged me at school with reports of him laughing, joking and playing in the garden. There have even been photos emailed to me to show how great things are - Brian knows how to cheer me up! Sam has been more upbeat, chattering away to me when I get home from work and making plans for the weekend including: having breakfast together, working on his "Make a Wish" planning book (he has decided already he wants to go to Disney World), and trading in his old DS and Wii games to get Atlantis Squarepants for the Wii. It is so good to see him like this!

The bad news is the list of the chemo and meds for the new phase. Immediately following the completion of the CNS Phase, Sam began Consolidation II. This phase lasts at least 70 weeks and is scheduled in three week cycles. Each cycle consists of the following:
Day One
Vincristine IV push
Dexarazoxane - IV
Doxorubicin - IV

Oral Doses each day
Dexamethasone (steroids)two times a day for five days
6-Mercaptopurine nightly dose for fourteen days
Pepsid - at least 6 days two times a day
Bactrim - antibiotic every Friday, Saturday and Sunday for the rest of the treatment (2.5 years)
Colace, Senna, Tylenol and Codine as needed throughout

Methotrexate IV
Asparaginase - Bloody awful intramuscular shot for 30 weeks!!!!!
Happy Juice - we managed to get the doctors to give Sam some of this before the Asparaginese...they said it would help :0

In 18 weeks and then every 9 weeks for 6 doses:
Intrathecal Methotrxate, Cytarabine, and Hydrocortisone
This means LPs for this procedure and being put out.

We have been told that Sam will get used to the chemo and will actually be able to go back to school soon! I am in mild panic as it is the flu season and H1N1 is going about; people are dropping like flies. The doctors are convinced it is still better for Sam to go back to school as it helps patients must help to see all those around you also feeling sick!!!!! Apparently, Sam's own bacteria is more dangerous to him when his counts are low than any sneezy, coughing child can be. I can't help asking the question, "Even though the germs can't harm Sam in terms of his cancer, isn't having the flu on top of cancer just too much?" Yet I know I will brace myself and let my child go back, Clorox wipes and Purel strapped to my belt each day...tune in for that episode:)

I am ashamed to report that I finally snapped and let loose my wrath on my husband, eldest son, and the frail, balding cancer patient I was taking care of. Basically, I lost the plot and became my own worst nightmare! Sam has been regressing in terms of taking his oral meds. He still insists on having it all with chocolate syrup and sips at a spoon which can take a while. Over the last few days, it has taken much longer...four hours one morning!!!! Yesterday I sat for two hours, finally handing it over to Brian as we often do when we are about to boil over. But this morning was the final straw. Sam was very grumpy and fussing over every little drop I tried to get near his mouth. Brian was out shopping (I love how much he does), so I couldn't pass to him when needed. Jack was bored, resulting in many questions and interactions requiring I "think" for him and help him come up with something to do...I had absolutely refused to let him play electronic games. Anyway, the result was that my patience was being tested, and we were pushing three hours with the medication and not nearly finished. Each time I suggested Sammy try to slurp more or open wider, he flew into histrionics which led to him almost vomiting. Sam must have an emotional stomach as he has thrown up when upset and even when he laughs too hard! So I was trying to accommodate the mental anguish of my son while also feeling enough was enough and he needed to suck it up (or down) and get the spoon finished!!!!

Finally, despite all my will not to, I slammed the computer shut (Sam was looking at movies on it to try to distract his attention), threw it on the couch across the table and screamed something along the lines of, "I am so sick of this..." I then shut myself up in the office to cool down. Silence!

Felling like the biggest failure in history, I finally went back in and sat with Sam and just said sorry, put my arms around him and we both cried. I was not strong, I was not hiding it from my son, and I was not able to try to finish the medicine for fear of getting all crazy again. So I gave Sam a bath and let Jack play at the bathroom door so he was not alone.

After Brian returned, I asked him to finish the medicine off which he did. Unfortunately, as I was upstairs, I heard screams and the sound of vomiting. Brian was at Sam's side trying to comfort him and Sam was distraught. I guess my psychosis hadn't quite dissipated and I immediately hissed to Brian, "I told you not to rush him!!!" Nothing like turning your anger on the ones you love...not my proudest moment.

The ugliness of today will stay with me for a while. I could not control how I felt and could not hide it. Sharing this is embarrassing but I also feel it is part of our story and should be included. We are having good days and bad days and downright ugly days, but they are our days and we will look back at them one day and smile in the knowledge that we got though them...somehow.


  1. I'm sure you've heard/read this a lot of times... but still, there is a boy in our new school, looks like 1st-2nd grade, but not Jimmy's class, so I do not know the mom.. he was wearing a hat all the time (yep, in San Diego), but now he does not wear it anymore :) And he has short but normal, thick hair, and rides (quite agressively) the scooter to school, and plays on the playground with everybody afterward :) It is not quite around the corner for you guys, but it is there!

  2. Hey Katy,
    As much as you feel like you "failed" at keeping your cool, it's ok. I'm told it's healthy, and the kids need to see you upset. This hurts all of you, and it's ok to show it. You're mad at the cancer, the medicine, all the b.s. that is now in your life, You're not mad at Sam, Jake and Brian,
    They can and will handle it, just as you are doing.
    My offer for a massage is always open, just call. It can be really helpful.


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