Some Good Times - Life After Leukemia

Life after leukemia can be wonderful!!!

Memory Lapse

Sammy Performing his Science Experiment

I come to this blog far too infrequently now.  Maybe it is because I don't need the therapy it offered during treatment.  I do know, however, that many people will be looking for information about life after treatment...so I need to update a little.

Sammy hardly shows any signs of having cancer.  No one at his school even knows about it apart from the teacher and nurse.  He would like to keep it that way and we are honoring that request.

Sammy went sledding for the first time EVER this winter.  Finally free of his port, and osteopenia a thing of the past, he was delighted that the weather gave us a ridiculous amount of the white powdered stuff.  I watched with great pleasure as he zoomed down hills, bouncing on bumps and flying past trees, all while smiling from ear to ear.  I was surprised by how little I allowed myself to worry about this.  You might think that, having almost lost my son, I would be crazily over-protective.  It has had almost the opposite effect on me...I say, live life HARD!  Enjoy all that you can...why not?

I watched my little guy swim with such power, each stroke a tribute to how he has managed to get his muscles working again, a sense of pride and determination as he sped through the water.  I no longer rush to explain to the instructor that Sammy can't lift his arms above his head, or that he needs extra time between lengths.  In fact, if truth be told, I am the proud mama watching her son swim at the top of his class...mastering the strokes easily, swimming harder and faster than anyone else.  Oh...I am gonna shout that one from the rooftops :)

Academics are another area of immense pride.  Sammy is at or above grade level and demonstrates an amazing ability to retain information. He was the proud recipient of an A+ for his Science Fair project.  He loves to read, has mathematical understanding, and can articulate his thoughts incredibly well.  In addition, he has a rare drive to really achieve in school.  He is responsible and often reminds me to sign things.  I'm not sure where he got that last one from.

Imagine my surprise, as we were sitting together today,  Sammy showed that he really didn't remember something.  I had asked him about the pain he felt with his neuropathy.  He had gone through most of the treatment years on Neurontin for the excruciating pain in his feet.  But Sammy floored me when he casually shrugged and said he didn't remember any pain like that.  My jaw dropped.  I thought he would never forget it.  He cried so much with it.  I cried so much with it.  Yet, it may as well never have happened.  Thankfully, Sammy has moved on and left some things well behind.

Today we are off to enjoy the sunny skies of Florida.  We have not been on vacation since the trip to Disney for Sammy's wish three years ago.  We are very excited to all be happy, healthy and ready for some fun in the sun!

Merry Christmas

It has certainly been a fabulous Christmas this year. For the first time since 2008 we had a family holiday without the Cancer Monster in the room. Of course the monster lurked under the bed still, it always will, but we had a wonderful time and ignored the beast almost completely!

I love decorating the tree. I don't get to do the chic, color-coordinated tree of my designer dreams; instead I have the most spectacular tree filled with children's ornaments and happy memories. My tree has history adorning it. My tree is a family tree.


Our week off was very family oriented. We began with a trip to New York City to see The Grinch at MSG. It was so much fun. The kids enjoyed the thrill of being in the city and soaked up the spectacle of the musical numbers. I got a thrill out of being back at MSG having been there a week earlier for the 12/12/12 Sandy Benefit Concert. Then there was our visit to the tree at Rockerfeller Center which was magnificent. The kids had seen it before, but had been too young to remember. We were finally doing the trip we wanted to become a kiddy tradition every year...finally. I was acutely aware of how lucky we were that we could start our tradition now.

Christmas Day was a family affair once again. Cousins and grandparents joined in the merriment. The boys loved their gifts from Santa, and I was rather impressed with myself for cooking the roast lamb to perfection....I'm not a cook so I toot my own horn on that one!

Boxing Day (as I will always call it being British) was quiet and a chance to hang out together without any agenda. A little shocked by how quickly Christmas comes and goes, I settled in to enjoy my sons playing with their new toys and joining in the odd board game or two. I ate the leftovers...the plebeians chose not to for some inexplicable reason!!! Crazy!




Being a couple is not easy when you have kids. Our couple time had become non-existent during the treatment years and we were finding it very hard to get our grove on as a partnership in anything other than medical and discipline control. Thankfully, Nana and Poppa came to the rescue with a precious gift, the gift of time. They took the boys for a two night sleepover. Talk about win-win! The boys were very excited and I came in after dropping them off to a house filled with a roaring fire and candlelight. Some much needed time together was spent actually talking to one another about us and our interests, rather than the kids. Note to self...do this more often!

Another big event was Sammy's first ever sledding day. Although he was given the all clear last year, there had not been any snow...go figure! Finally, we set out, all bundled up, to watch as our precious children hurled themselves down steel and slippery hills, crying out with delight at the thrill of feeling the snow kiss their cheeks and the wind whiz past them as they hit top speed just before reaching the tree line :-) I was not concerned, protective or afraid for them. I loved it! They were free! They were kids! They were happy, and so was I.

There were many jobs I planned to do over this vacation, and I must admit they did not get done. They await my attention, laughing at my procrastination. But I don't care! I laugh back at them because I have had a Christmas to remember for a lifetime. My boys were happy and healthy (ignoring the panic of the small spots appearing on Sammy and the rush to CHAM to check him out) and I got a chance to feel like we could really doable normal things families do during the Holidays. We knew the cancer monster was around, but he was well hidden and a little scared to show himself with all the laughter and merriment filling the house.

So, I wish you all a very Happy New Year! May we find the cure in 2013 and bring joy to thousands of families fighting monsters.

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!  

Pre-Existing Conditions

This is a very difficult post for me to write.  Mainly because I know most of those reading it will already know the pain of having a child with cancer, or be a cancer warrior themselves.  I don't need to 'tell' you how things feel!

But for me, I am getting something off my chest...you know I use this blog to do that.  And, sadly, this post does not apply just to cancer, but all conditions which may have lasting effects on a person, no matter how old they are, for the rest of their life.  I include Sammy's brother, Jack, in this post.  He has asthma.  He has a pre-existing condition, just as Sammy does. I am also including anyone with Lupus (my lovely mom), Celiac's disease (my wonderful friend), Crohn's, Diabetes, etc....  There really are too many to mention.  BUT, I guarantee, you will know someone who suffers from such an illness.

So what is on my mind?  Well, there is a big election coming up, as you know.  I am well aware that everyone will have their own political views (we live in a nation that grants us that freedom), and I would never seek to insult anyone for their personal viewpoints.  I do, however, want to share my thoughts.  I am sure many of you already know where this is going.  I am putting my personal faces to this argument, but you could easily think about someone you know.

People who have fought and survived cancer have a much higher risk of getting a secondary cancer due to the treatment that saved their lives in the first place.  Chemo and radiation are toxins designed to kill!  Yet the benefits of saving a life immediately, far outweighs the concerns down the road.  Medical research has allowed doctors to find ways to administer the least amount of toxins in the most effective way.  But almost all the childhood cancer medicines are over 50 years old, so they are still exceedingly outdated and very dangerous.

Sammy will be monitored for cognitive effects.  His IQ may well drop considerably in a few years.  He will also need PT for most of his life to maintain his muscle and skeletal strength.  Every major organ has to be checked yearly to asses for deterioration.  His heart may give out in his thirties.  His reproductive abilities may no longer be an issue....he may be sterile.  He is 8.  He has kicked stinking cancer and this is what he will face forever.

If a certain party is elected into national and local governments, funding for research to continue to improve toxicity in treatments will stop. In addition,  Sammy will not be able to get insurance for any of the aforementioned issues once he is no longer on our insurance plan.  If he relapses, it is likely he will exceed the lifetime cap on our insurance (not that we have one right now, but it will come back), and we will not have the means to provide the treatment needed to save his life again.  We earn too much to get financial assistance, so we would be faced with bankruptcy.  (Fine...if it saves his life...but all it will mean is we are broke and still no coverage!)

Radiation

Jack may grow up with very few issues with his asthma.  He does, however, need medication for it and frequent visits to a pulmonologist.  While this may not break the bank, if he should suffer an attack and need hospitalization, nothing would be covered. That has the potential  to leave him without adequate treatment or crippling bills.  I would sell my soul to help, but WHY should my children have this to face as they grow up to become the new generation of America?

Sammy's first hospital visit after diagnosis cost over $100,000.  We then spent most of the first year in hospital (averaging about $150,000 per stay)  followed by two more years of treatments.  Sammy will go to the clinic for the rest of his life.  No insurance....????


I am a mother fighting for the lives of her children.  Sure, they will be grown up by then...but I am fighting NOW to keep them alive and safe in their future. It boggles my mind that I even have to....but I do!  November 6 is my birthday.  I hope I don't spend it morning the future of my children.

I do not fight alone.  Adults and children are affected by the threat of punishing people with pre-existing conditions.  Here, a hero of mine, Mike McCready, explains why the fight is so important:

Fun Times

Having spent the last post bemoaning the surprise struggle the first year off treatment throws at a family, I felt it fitting to also show how much fun it can be.  We have been busy living, as well as working out kinks, so here I would like to offer a glimpse into the good times:

ONE YEAR CLEAR!

Today marks the one year anniversary of Sammy officially being considered off treatment and done!  It was quite a low key day compared to the end of treatment celebration, but I think it should have been.  We are moving on and growing in strength, wisdom, and understanding.  We are entering a new phase and anxiously excited to be doing it.

Sammy went to the clinic with Brian and weathered the shots he needed.  There are not many more shots left until he is bionic....well, immunized again at least!  Sammy will not be going to the clinic once a month now.  He has graduated to once every three months.

Knowing me, I am going to have my mad moments where I NEED to contact Dr. C and check in about something! Going from weekly to monthly blood draws had given me funny turns occasionally.  I know I will have a day of utter conviction that the cancer might be returning and panic beyond control because Sam won't be going to the clinic for weeks.  That's just me...I'm gonna do it...I know I am....I just have to work on managing it :)

Back to the good news.  (You have noticed, I am sure, that I just ranted on about my future panics which means I am panicking already....darn self-analysis!)  Anyway, Sammy is excited to be invited to a CHAM party in November to celebrate the children who are DONE!  We are celebrating quietly (apart from Facebook and Twitter spreading the word) by having a family dinner at Sam's favorite restaurant over the weekend.  We are happily making less of a deal.

So, what might I wish I had known about the first year off treatment?  Oh my!  There is so much!

• Families hold together during treatment but fall apart once it is done!  -  We have fought tooth and nail to remain a unit.  It has been incredibly hard.  Communication is key; acknowledging the problems and spending time working them out.  We are coming out of that fog now, but it was a close call at times.  Statistically, cancer does not increase the risk of families splitting up, but the aftermath sure isn't fun!
• Parents and siblings also suffer from PSPD - I was a MESS for a few months after Sammy was done with treatment.  I fell apart and became lethargic and disengaged from the world in general.  I knew why, but I still couldn't do much about it.  I did visit counsellors and even tried meds...not a good option for me as they actually sent me more squiffy!   I took myself off them and decided to work on picking myself up in other ways.    I'm fine now, but it was hard.  Thankfully I am blessed with an amazing husband, a brilliant mom and in-laws and fabulous friends who took care of me and cut me some slack for being less than I should have been.  
• It is hard to let cancer go - you would think I'd be glad to see the back of it and just run away from anything that reminded me of those years.  No!  I turned into an obsessed freak!  I had to do WHATEVER I could to beat cancer and find a cure.  I blogged, Facebooked, and Tweeted all the reasons why everyone should be fighting with me.  It was a battle I had to face, my son will be affected forever...and we don't yet know to what extent...so I just kept on going with the cancer thing.  
• Sometimes, despite having every reason to savor every precious moment of life, you don't!  -  Sitting in the hospital during the very first weeks of treatment back in 2009, I couldn't even read a magazine as it seamed so trivial and, well, useless.  I hated how so many things were taken for granted and misused or neglected.  I noticed all the disparities in the world and resented those who didn't appreciate what they had.  I don't do that so much anymore!  I don't always appreciate what I have.  I am even guilty of brushing Sammy off so I can relax and enjoy some time on the computer or doing 'my own thing'.  I have started taking some things for granted again! 
• I DO still stare at my child while he is sleeping a weep silently as I think about all he has gone through.  I then do the same with his brother who, as a sibling, had his world changed forever without the 'fame' and support.  I cry for my children a lot.  Sometimes it is with relief ... sometimes regret that things had not been better.  
• Eventually the crap gets better!  This one is important.  We are not the same family we were back in 2009.  Not by any means.  We have our skeletons and we all probably should see a good shrink...but we are okay.  We are stronger now.  We are ready to look forward and honor the past but not dwell in it.  

ONE YEAR CLEAR means so many things.  We are hoping to be a family that gets to 'five years clear'.  That is the goal.  After that...well, we will enjoy that when it happens.