Thankful

Today is Thanksgiving Day.  An American holiday which I have celebrated over the past 15 years.  I enjoy going to my in-laws and seeing my extended American family.  I miss my British family, but it doesn't his me as hard as Christmas, the holiday I have celebrated all my life.

Thanksgiving is a nice holiday where people gather and enjoy one another's company.  It is, in fact, a lot less commercial than Christmas, which I appreciate!  But the best thing about Thanksgiving, for me, is that I get to really be thankful.  I am one of the luckiest mummy's in the world.  I have both my boys with me....and I almost didn't!

You know about Sammy, but Jack was no walk in the park either!  He decided to come out after just 24 weeks gestation, so I fought to keep him growing inside me with Magnesium, a Terbutaline pump and months of bed-rest.  We made it to 36 weeks and only a few days in the NICU after some complications from the emergency C-section!  At five years old, Jack was diagnosed with Bacterial Meningitis.  He had an emergency lumbar puncture and, after 10 days in hospital, we administered medications via a picc line in his chest.  He and Sammy both have neck and chest scars from their lines.

With our crazy battles to keep our children healthy, I really do appreciate spending today with my sons.

• I am thankful for the excess laundry I do with two boys who can always find the dirtiest place to play
• I am thankful that I get prodded awake in the wee hours of the morning to tell someone they are okay after a nightmare
• I am thankful that I have to say no to social events because my kids need me for one of their events
• I am thankful that I have been known to have a mini-meltdown as I work out how to get my kids to tidy up
• I am thankful that I can hardly type because Sammy has just sat down next to me, pinning down my right arm and chattering away as he plays his allotted time on the Wii 

There are so many other things I take for granted too often these days but I am reminded just how lucky I am today.  I am with my boys, I'm about to make a dish to take to the family gathering, and I am complete....not sane by any means (but that is because I'm a mom).  

                                             Happy Thanksgiving one and all!  

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!