The LAST Lumbar Puncture!

Thursday's clinic was a special day.  Although it was the beginning of week one, meaning steroids start again, there was a definite feeling of the beginning of the end of treatment.  We all knew that this was the case, but the occasion did not ht me until later into the day.  

As usual, we arrived at the clinic at 7am and Sammy went up to the fourth floor for his finger prick.  We were then seen pretty quickly by Megan and Dr. G.  All was well and we were sent straight back to be accessed....incase the blood would not come out immediately.  The counts came back showing everything as it should be....Sammy continues to have excellent blood counts.  Joyfully, the blood also came out first time, and Donna, the nurse, was able to administer the IV chemos really quickly.  We were all trying to make sure Sam was ready to go over to the Day Hospital as soon as he was called.  

Then we hear that the sedation team wasn't even in the building yet.  It was about nine o'clock and we were done with chemo.  Now we had to wait!  Thankfully, Sammy had Nana and I to keep him company, along with a couple of visitors:  Sammy was invited to be a star in his own video - a non-profit company explained that next week, Sammy and his family could record a half-hour video as an oral history for the family.  We spent some quality time together practicing questions we might ask each other for the video.  

Another visitor was Matt from The Hole in the Wall Camp.  He had obviously met Sam before and they got along wonderfully.  Here is Sam coloring a picture of Mr. Krabs from Spongebob.  Matt colored Ariel from The Little Mermaid....Sammy got a real kick out of that and was giggling and very happy.

It must have been very hard for Sammy as we did not go through to the Day Hospital until almost 11:30!  He was so hungry as he couldn't eat before anesthesia.  I was delighted, however, to see that Dr. S and Kim were the team on duty that day.  Dr. S is the head of the department...the one who saw us through radiation.

Kim came in to do the usual check-up and questions, but before anything else she announced that this was a BIG day for us.  I stared at her blankly for a moment before realizing she was referring to the fact this was the LAST LP.  Her happiness, hugs and congratulations awoke my comprehension of the enormity of the event!  LAST, LAST, LAST, LAST, LAST!!!!!!!!   Oh my goodness!  We were ENDING something that had been part of our lives for two years.  Dr. S gave us a similar greeting and then got down to his usual friendly business.

The LP went well.  Sam was scared once we went into the OR and needed a lot of comforting.  He needed enough sleepy medicine to knock out an elephant...he just wouldn't got to sleep!!!   Once he was finally out, Dr. S and Kim worked on keeping him safe while under, and Dr. L performed the procedure.  It all took about five minutes and then Sam was wheeled back into recovery.  

Already awake, Sam was quite entertaining as he saw three of Nana and I, thought my hand was all covered in warts, watched ships sailing on the curtains, and asked every few minutes, "Where are we?"  Keeping him horizontal was the biggest challenge!  Sam wanted to sit up and play his DS game.....how he was planning to do that with blurry eyes and wires attached to his arms and fingers, I will never know!  

So it is done!  We have reached a major milestone in treatment....we are on our way to the rest of our lives :)

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!  

Sammy Super Swimmer!

Just a quickie to update everyone.

Sam has just graduated Swimming Beginners I.   This is a HUGE achievement when one looks back over the past year and a half.  I am so proud of him.  He moves on to Beginners II in April.

Jack starts therapy on Thursday.  He is also going back to Gilda's Club for the  Support Group on Tuesdays.  I really hope it helps him.....more about that on his blog.

Brian's toe is slowly recovering...he broke it!

I am wondering why my therapist (gosh that sounds weird) has three weeks between appointments????  Perhaps this is not the right person for me.  I did like him but might need more regular visits...or not...we will see.  So my Cancer Parent friends.....my next piece of unsolicited advice is to be prepared to change therapist if the first one isn't meeting your needs.  I will keep you posted on my decision after my next appointment.

Well, that's about it until Thursday when Sammy has his next LP.....how I hate those things!

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.