Mummy Radar

My instincts were correct!  Sammy went into the clinic this morning after I emailed Dr. C. to tell him how the night had been.  Sammy had been in pain and awake in that semi-consious state all night...I knew something was not right...deja vu!

Once in the clinic, Daisy whipped us back to get vitals done and immediately put us in a room as Sam had such pain.   The nurse practitioner  said it could be the result of the steroids accumulating in his body, getting more aggressive as they have been in his system for so long now.  The doctor, Dr. G. felt there was more to it and found a red ear along with flushed cheeks.  He put two and two together and came up with infection.  No fever???  Well, Sammy's counts are no longer in the neutropenic range so, just like you or I, he can get an infection without getting the tell-tale fever.

I had the foresight to numb Sammy's chest and finger.  It is a habit I have when we go to the clinic....they usually stick something in him!  It was a blessing because Sam could get accessed and have a culture taken, along with morphine and antibiotics.  He is already allergic to Vecomycin, getting Red Man's Syndrome if it is administerd too quickly.  The doctor mentioned Ceftriaxone and I told them Sam had developed a hive last time he had that (or at least I thought it was that) in the Stamford ER.  The decision was made to administer it anyway and then come to their own conclusions about allergic reactions.  It was, after all the best choice for the situation.

My super guy asked me to go get him some food from the store.  He was about to be accessed so I offered to wait. He preferred I got the food...how comfortable is he with this stabbing the chest thing now!!!   I was very impressed.  Blood could be drawn immediately and a culture is growing to check for a line infection.  We will cross that bridge if we come to it (one day at a time).  Cefrtiaxone given through IV, hives developed, Benadryl given, allergy confirmed, (told ya), and now they had to decide how to proceed in order to best beat this infection.  In total Sammy fashion, he leaned over to me and quietly said, "See, I told you it wasn't the steroid feeling I usually get. I know it was something different."  Can you imagine a young seven year old begin so acutely aware of his own body?  Cancer kids are...they are amazing and will be great people when they grow up.

So Sammy is still accessed with tubes dangling from his chest,  He will return to the hospital tomorrow for more antibiotics, get his weekly chemo a little early, stay home from school as he will be a wreck just from the battery of junk pumped into him, and we will wait for the all clear on the culture.  Another dose of antibiotics will be given at home by mouth.

Monday is a day for kids who are in earlier stages of treatment.  There were so many more bald heads than on Thursday.  It took me back and reminded me of how far we have come.  This is a speed bump...one I caught because my body ached with worry over Sammy's condition.  I love my instincts, I trust them, I will always listen to them.  We are lucky...words I used in my earlier posts...we really are.  Cancer stinks, what Sammy has to go through is too much for a small child, but we are lucky to be where we are now...with a future, a party to look forward to...hope!

I Cried Today

I don't know what makes a day one of those days, but today was a humdinger of a day.  Last night I was so tired...you know, that tired to the bone, desperate for sleep kind of tired that makes you grumpy and a little high-strung.  Who am I kidding?   I've felt like that for months....it's part of the journey I'm on with my family and dear old cancer!

Anyway, I digress.  So last night, tired beyond reason, I sat in the kitchen comforting my amazingly strong son who had just HAD ENOUGH:  Sam is sick and tired of the treatment, fed up with not being 'normal'.  He says he is not a 'normal kid'.  He says he wants to be able to play and chase his friends at recess.  He says he wishes he had never had cancer, as it is too much now.

I validated everything, no sugar-coating, just plain agreeing with him.  It sucks, stinks, feels like crap, blah, blah, blah.  (My words, not his...."Cancer is stupid" is Sam's release....my real release words would make this blog R rated!  We are getting closer to the end of treatment, but tell a kid he has at least five more months to go and it doesn't register the same way it does to all our well-wishers.  It still seems like forever, and so much of his life has revolved around not being normal (his words).

Sam also showed how much things are getting to him when Leslie, his psychologist, had the session with him in the clinic.  Playing doctor often helps in a therapeutic way.  Sam has a monkey he looks after and often works on 'teaching' the monkey how to cope with the treatments he gets from Sam.  This visit was remarkably different: instead of helping the monkey feel better, Sam stuck the needle in the monkey's eyes, nose, ears...basically anywhere it would hurt, and with no plan to calm the monkey before treatment.

So, back to today:  I drove to school with the sunglasses hiding my tears, blamed allergies as kind colleagues checked in with me, and sucked it up and gave it my all once the students were in the classroom.  Only those closest to me knew what was going on.

This is a crying day....I have them....I will continue to have them spring up and surprise me for many years to come, I'm sure.  I hope Sammy does not continue to have them once treatment is over, and I won't let him know if I do.

Why share this?  'Cos I'm a sap!   No, it's because the people reading this who are in my shoes will relate and understand, they might feel better about their own crying days, they might give themselves a break and let it go...it happens.  I still feel like crying, the day is not yet over.  Tomorrow, however, is another day.

I Feel Like The Clinic is Home!

The sentence, "I feel like the clinic is home," came out of my son's mouth in the car yesterday as we chatted about this morning's visit for chemo.  I was stunned, but in context, it actually made sense.  We had been planning the Clinic birthday celebration (Sammy turns seven on Tuesday), and he was very excited.  He really wanted to be at the clinic with his wonderful doctors, nurses, and his friend (psychologist), Leslie.  Leslie was bringing donuts for Sam to celebrate, Nana was bringing something sweet for the staff...Sammy just wanted to be there.  He sees the clinic so differently lately.

Accessing  Sam's port is often done while Sam is busy with his DS or watching a movie...or tricking Nana by making her leave the room then telling her no blood would come out....followed by a smiling Sammy holding up the vial of blood that had come out first time!  This is the kid who took four hours to drink down a teaspoon of medicine, was still taking off a band aid as the clinic was closing because it was so traumatic, and screamed the place down if a nurse even came near him, never mind with a large needle that needed to get pushed into his chest!

Sam is the big man in town...confident, aware of what is going on...able to verbalize his thoughts and opinions.  Sammy told the doctors that the past steroid pulse was the worst one ever, as was Easter...he had a rotten time and hated the weekend.  He also said how much he is looking forward to this weekend, we are holding his birthday party on Saturday and Sam will be surrounded by family and friends, and he was particularly looking forward to the extra love and attention!!!

So, Sam is very comfortable at the clinic, he is positively jubilant about his upcoming birthday, and he loves his 'clinic family' very much indeed.

Clinic Today

Today's clinic visit went well.  Sammy was tired from a late night as we had friends over, but he picked up and became his usual goofy self once we were settled in and he was accessed.  Here is a glimpse of our little morning getting chemo.  It is amazing how this no longer phases Sam...he just treats it like a regular part of his life.  I suspect he'll be very glad once it's over though :)

Eating before Chemo!

Getting accessed

Drawing blood

Happy blood came out on the first try (unusual)

Ready to get the chemo

All done!  

LP and Hallucinations

The LP is done and we are in mid-steroid/heavy dose chemo frenzy.  Crying, laughing, angry, sad, angry, crying, mad, hungry, screaming, crying, eating, confused, more crying...and so it continues.  The good news is it lasts for five to six days and then it is over.  The bad news it, LONG TERM MAINTENANCE goes on long term and is rather more ongoing when you are in the middle of it!

The actual day at the clinic was pretty standard: finger prick, blood-pressure, height , weight, temperature check, run through vitals and weekly history, provide new schedule for meds of the cycle, go to back to access port and find NO BLOOD comes out, counts actually COME BACK ON TIME, (not usual), Pentamidine (antibiotics) administered, try for blood again.....

Then we were taken to the Day Hospital across the hallway for the LP.  Sam was cranky at this point as he could not eat.

Leslie came by with the monkey Sammy has been 'taking care of' as part of his therapy..not interested today.  "He's feeling okay and doesn't need anything." was Sam's reply.  

Finally the anesthesiology team came in to take Sam down to the OR.  I had to stress how bad his cold continued to be, and they said they would try the procedure but take extra precautions and stop if they had to.  

Sam walked to the OR with no shirt, just as you see in the picture above...he got many comments about being "Mr. Muscle" etc. but he was unimpressed and fully focussed on the job at hand.  In fact, he was terrified!  I knew this due to our bedtime discussions over the previous few evenings, and the poor guy was now ready to bail!  

As we walked into the OR, Sam held tight onto me and said he couldn't do it this time...he was too scared.  Eventually there was me on the bed with Sam in my arms talking about Japanese food and his big party.  

Sam was calm enough to drift into a twilight state..I was told his eyes were open because he was given a different medicine this time (due to cold) and he was still awake but would not remember a thing.  

I knew this to be true as Jack had the same meds when he has his LP back when he had Meningitis...but I had been allowed to stay with him then and saw how Jack's stress was despite the meds...Jack remembers nothing, however!

I was told I could leave....I wanted to stay so badly...and Nana and I waited in the waiting room.  Within about ten minutes Megan, the Nurse Practitioner, came to tell us it was done and Sam was awake and in recovery.

We went in to see quite a sight!  Dr. G, who had performed the procedure told us Sam was the most delightful child ever!  Agreeing, but not sure why this was said, we went in to find my son tripping his socks off with a medical version of a PCP induced hallucination!

Sammy saw so much going on on the ceiling of the recovery room, we decided he was actually reliving  a Super Mario video game.....occasionally I would need to redirect the action so that the good guys (the stars) were winning against the bad guys (the walls) or else his heart rate went too high!  

Finally Sammy was back in the land of the non-tripping people.  Dr. G explained that Sam had been so nice and friendly when in the OR...and people on the PCP-style meds show their true colors when on it, so he felt Sammy was truly a lovely young boy!  

After and hour of lying down to avoid a headache, we went back to the clinic to try to draw blood so Sam could have his other chemo through the port.  Blood had to be drawn so there is no doubt they are tapped into a vein for the chemo to go into.  Two doses of clot thinning meds later, we had blood and the last of the poison  chemo was given.  

Sam had Methotrexate, Cytarabine  and Hydrochloride intrathecally, and Vincrisitine through his port.  he started his steroids and 6MP doses orally..no wonder the little guy is feeling so bad!  

LP Issues

I have been meaning to update and have even got a few entries in the editing stages about fun things such as going to Disney, LTN walk and Halloween.  However, I feel a vent coming on as my Mommy Signal is flashing like crazy due to things not going as well as usual.  Sammy had another LP the day before Thanksgiving and it did not go as well as they usually do.

To be honest, the actual procedure was event free.  We had the usual problem of Sammy's blood not coming back with the differential (the bit that tells the doctors what his ANC is - if his blood counts are high enough for him to have the chemo safely).  We have been working on this issue for months and yet, even with doctors calling and emailing the lab, nothing has changed...Sammy's blood always has to be done by hand rather than the machine....baffling everyone! 

Sammy needed a LOT of sleep medicine this time...he kept looking asleep and then waking up and panicking in case I wasn't there.  He doesn't remember this, so I know he was heavily under the influence, but it was disconcerting to say the least.  Finally he looked almost gone and I was ushered out so they could begin.  The procedure took all of 12 minutes and then Sammy slept for about an hour afterwards which meant he finally lay down for the full time needed to avoid getting headaches etc.   Things were looking good. 

The next day was Thanksgiving and we had a wonderful day at Nana and Poppa's house with family.  Sammy seemed to do really well and played with his brother and cousins as normally as any other kid.  He was tired by the end of the long day, but who wasn't?  Admittedly, Dr. Gill had given us the okay to hold off on his steroids and chemo until Friday so he could enjoy the holiday with family.

Thursday night the pain started.  I was up most of the night with Sammy feeling strange and uncomfortable...like he was on steroids but he wasn't.  Friday, he did start chemo and steroids and the pain and sickness progressively got worse.  We called CHAM and Dr. Levy told us this was fairly normal after an LP and the steroids exacerbate it.  We must have been lucky not to have had it so bad before.  We were to treat with Codine for pain and call if things got worse. 

Although Sammy certainly played with Jack and even had a play fight with Daddy, his ups and downs have been very dramatic and overall the pain day and night have been awful.    Today we are watching closely and will call CHAM to see if we need to bring Sammy there in the morning.  We think we will be told to wait it out and that it is just par for the course.  I guess we have been very lucky recently...this was our standard day just a few months ago, now I am freaking out and feeling major panic...not that I didn't back then either, but I just got used to not panicking so much. 

The worst has been the waiting for results from the LP due to the holidays and the recurring dreams of loosing Sam.  I know my mind is both extremely fatigued from lack of sleep over the last 3 weeks (Brian had surgery so I've been the one doing all day and night duty), but also because I am anxious and probably over-thinking everything.  We have had a very good run over the last couple of months, and my biggest fear is it all crumbling around us.