Family Fun

So much has happened lately, I really don't know where to begin.  Basically, We have been enjoying life while keeping a watchful eye on swollen glands.  I guess I should start with that so no one is left worrying.

Sammy's glands are 'normally swollen'...just like an other kid....according to Dr. C who is the head honcho of Sammy's doctors.  All is good with Sam.  He remains in remission and his blood work is clear. His running is improving and people constantly comment on how great he looks.  We are very fortunate and inwardly celebrate this almost every minute!


Sammy celebrated turning 8 recently.  I cannot believe he is growing up so quickly.  Where is the time going?  He has wanted his own pet for some time so I thought a fish might be fun.  Here is the final version of that seed idea:

The cat likes them very much indeed!

And Sammy is learning how to take responsibility for his 9 fish:

Sammy had a wonderful party with his friends at his usual place...

And dinner at his favorite Japanese restaurant!

We also celebrated Jack and Sammy's cousin's first birthday. It was wonderful to see the kids playing together and know that Sam could keep up and just join in the fun without having to worry about anything.

Jack has been very busy also.  Baseball is in full swing (pun intended) and we all had fun at the opening day celebration... see here for news on that.  

I was given a delightful Mother's Day.  Having the luxury of a long lie in, we all headed off to the beach as a family, dog included, and walked along the rocks to the tide pools.  I was in my absolute element, being a total beach-lover.  I actually love the walks and views more than just sitting getting a tan....and Mother's Day was glorious!  We spotted birds, found sea-creatures and enjoyed the beautiful views.  The kids played on the rocks and I daydreamed about the beach houses dotted along the coastline.  Heaven!

We have really had some great times recently.  Pushing worry to the back of our minds was very doable and we are glad that we were able to.  Of course, all this activity (and there is more I shall share in later posts) means my house is a total wreck!  I like having no time to take care of it though....nowadays it is not because we are spending weeks in hospital, instead it is because we are doing things, volunteering for things close to our hearts, and having the life we had to put on hold for a few years.

New Year - Yup!

Well 2012 is upon us and Sammy is cancer free and off treatment.  I was reading back at last year's post and I hardly recognized myself.  It is amazing the toll the last year has taken, despite my very optimistic outlook and resolve to make it a good one.  Fail!!!!!  Read here to see what I said a year ago.  

We had a lovely New Year's Eve at a very close friend's house.  We all stayed over so as to be safe from the drunks on the roads.  We all drank enough to consider it a special night, but no hangovers anywhere!  I, however, slept in until midday as I was so wiped from the night of merriment...my body just ain't working for me at all!  

New Year's Day brought a new ‘treat’...Sammy had a fever of 102.7.  Now just two months ago that would have put me into a catatonic state...and led us straight to the ER...do not pass GO, do not collect $200!  But, now that Sam is off treatment and his port is out, he can be treated by his regular practitioner.  That took a bit of getting used to.  Of course, I called CHAM anyway, just to make sure.  They told me his blood counts had been great on Thursday and there was no reason for them to see him.  

Two days later we got to see the pediatrician (holidays can be such a pain).  Reviewing the history, the doctor decided to take no chances and ordered a full CBC (complete blood count) and several tests for blood pressure etc.  

The strangest thing was, we were in room 13. Sam was diagnosed on the 13th...our lucky number as he would have died had we not caught it when we did.  Yet I had a minor freak-out that it was all happening again...we would be lucky to find it again so as to save his life in room 13!!!!

I remained calm but realized that any small anything was going to induce a terror within that would grip my insides like a vice.  Even the doctors would not just treat as 'normal' but run tests just to be sure.  New Year was a new normal.... off treatment, no CHAM each week, less testing, more "I wonder if..."  

Sammy is still off school as his fever remains and he now has a sore throat.  All part of any school kid's run-of the mill illness.  But I'm looking hard at his glands, checking for petechiae, watching for bruises, and noticing every moment his energy level is down.  

Sammy is sick of being ill.  He has had enough.  He want’s to run and play but the late effects are kicking in and he has mobility issues with his right leg.  This wonderful, brave, and resilient boy is ready for some time off.  He deserves it more than anyone I know.  

I am no longer saying, "At least it is a normal illness this time."  Because it is not fair that Sammy has to feel bad yet again.  I'm not finding the positive outlook is working anymore.... gosh, it has run me into the ground...but most importantly, I am pissed off for my son.... he needs to have a break!  Give my son the gift of good health and leave him alone for a while!  

Lucky 13

Jack and Brian came with us to the clinic last Thursday.  It was quite the family affair.  The reason we all descended upon CHAM was due to the fact Sammy was scheduled to record his Oral History video and we wanted the whole family involved.  Of course, before we did that, we had to go through the usual visit palaver.  

Jack seemed fine with the whole thing...we were glad that it was a quiet day and there was not the usual bustling and sounds coming from the other beds.  (We have seen Sammy grow from screaming child to confident master of his domain, but there are always new children taking the journey and their cries and screams would have upset Jack a lot....I know, I have gone to the bathroom for a cry on past visits!)

Daisy was there taking Sammy's vitals as usual.  I had to leap at the chance to get a picture of her ready for Sammy's scrapbook.  I am trying to get as many doctors, curses etc. as I can before treatment is over. Not that we won't be back...we will every month, but I just want to capture the 'treatment time' right now.

Speaking of treatment, Dr. C gave us the final date for Sam.  He will get his last dose of Methotrexate on October 13th!!!!  13 really is our lucky number...we discovered the leukemia (just in time) on September 13th, 2009, and we end treatment exactly two years later.  I am soooo excited.  I have blown off the anxiety over it right now...I am sure it will come back, but right now I'm HAPPY!!!!!!

Dr. Jack!

School Dance Festival

Last year the school held a big Super Sammy Day, turning the annual Dance Festival into a fundraiser for the Danny Fund.  This year we got to enjoy being a little more 'regular' as both Jack and Sam danced in their grade level dances and both were treated just like any other kid in the school.  We all loved that, not that we are ungrateful for the love and support showered upon us last year, but being normal is very dear to us all nowadays.

Of course, Sammy didn't so much dance as limp around.  But he enjoyed every minute of it, crazy thinning spiky hair and all!  Jack got a lot of attention from me as I was able to focus more on him and less on the media frenzy of last year.  I will post some more of his pictures on his blog.

As the end of the school year draws closer, activities galore are in store.  Sammy has already had his class picnic...pictures below.  Jack has his Chocolate Fever party (After reading the book Chocolate Fever, the third graders have a grade level picnic with a chocolate theme.  They even get chocolate spots which can only be 'cured' by vanilla pills!)  Both boys have Field Day to enjoy.  Both are on the Gold Team....we will see how Sammy copes with the challenges of team sports, Jack will be his usual sporty, competitive self :)

We have the baseball picnic, the baseball banquet, and the Montefiore day at Playland to look forward to.  I will try to post pictures and mini-rundowns as we go. That is, IF I survive all this insanity!!!!!

Class Picnic

Sitting with friends

Picnic Beach Ball Fun!

Dance Festival

Dancing with Partner

Friends since Pre-aschool!

Jack being.....well, Jack!

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.

Capturing a Moment

Inspired by Ally over at cancerandbabyequalschaos, I am going to try to capture precious moments or interesting happenings each week..."Yeah, right!' I hear you say...and you are probably right...but I'm gonna give it a try.  You know it will be based on the trials and tribulations of my family's fun with cancer, but what the heck!  May as well do something fun now and again :)

So my photo is:

Okay, I broke the rules already...it's supposed to be one captured this week.  But I wanted to start with this as my mum captured it of me in Cornwall, back before my world turned upside down.  We were in a little church, enjoying the beauty within and the view.  I was in my early twenties and my whole life stretched before me.

I love this photo because it brings peace to me...happy memories, beautiful places, family, future...and I never look back with bitterness at my new lot...just contentment.  This photo reminds me of me...the person I still am, and will always be.

Sammy In Make A Wish Newsletter

To read the text, just click on the picture and then click on it again to enlarge.

Postaweek2011 - I Hope I Never Lose...

Here is my next random post of the week...inspired by a prompt on Plinky:
I hope I never lose my appreciation for the life I have. Although there are many major setbacks, particularly with my own child’s health, I am blessed with a wonderful family, friendships and relative stability. I live in a wealthy nation, I am educated, and I never go hungry. While I could look at those with more and feel slighted, I don’t. I really do understand how lucky I am, and I never want to lose that.

When we go through hardships, friends can be so crucial to both mental and physical survival. Relying on others can also have a negative effect; one feels helpless, useless, a pain in the neck. Yet, if we really stop for a moment and give ourself time to realize it is okay to accept the help of others, two things happen: first of all, those helping feel good about doing it, and secondly, there will be a time when the need for support lessens and one can ‘give back’ in some way.

So what is my point? Well, I have learned many lessons related to all of this in the past year. I have accepted help and now have several projects in motion to ‘give back’. When I saw the prompt about what I hope I never lose, my answer came instantly to me. I have perspective and appreciation for life which, only a year ago, I would never have imagined having.

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.