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.  

Pearl Jam - The Sammy Bracelet!

Pearl Jam is my escape from everything to do with cancer.  But at the most recent show, over in Missoula, Montana, I mixed up the two worlds a little and came out with the experience of a lifetime for this fan!  I am a big Mike McCready fan...he's the lead guitarist.  I was at the show with very good friends and had tickets for a "meet and greet" before the show started thanks to said friends working some magic.  The show was in the home state of another Pearl Jam member, Jeff Ament., and was in support of Senator John Tester.  So it had political leanings and I wanted to do a final last hurrah for Childhood Cancer Awareness Month. 

I wore my Superman Sammy shirt and bracelet because I wanted to talk to Tester about healthcare and share with him about Sammy having leukemia and thanking him (and reminding him to keep going) with the healthcare stuff).  Anyway, I'm next to Mike but behind him and he turns around and looks straight at my shirt and goes to shake my hand. My bracelet was too big and had fallen over part of my hand so he got it in his and looked at it...I quickly explained what it was and he gave me the BIGGEST hug and then took the bracelet to wear....this made an incredible night the most special moment for me. My Sammy's bright orange band on Mike's wrist at one of the best shows I've ever seen! I can't put it into words properly.   :)

Pediatric Cancer - Some Hard Truths

Well, I was going to post about the wonderful summer we've been having.  I have lots of amazing photos of Nana's visit, Sammy at camp, Jack being a baseball hero, and Brian having a blast at his birthday party.  Instead I am going to write about cancer....well, go figure, I thought I was done with that!  

Pediatric cancer kills an average of seven children a day in the US alone.  This weekend, at least 14 children died.  One of these children was called Cody.  He was a beautiful little boy who fought long and hard, but cancer won tonight as he slipped away.  Read about Cody here.

G is a friends of Sammy's who I have mentioned on numerous occasions.  He is now awaiting a bone marrow transplant which was postponed because it is becoming increasingly more difficult to ensure he is in remission after relapsing at the beginning of the year.  He is a fighter.  He turned eight yesterday.  He faces the battle for the second time and will have an unimaginable few months post-transplant IF he can get to that stage.

Then Sammy is another child who faced the beast.  He won.  So far.  Yet, as often happens, he now faces depression and sleepless nights as he fights the demons only a survivor has to face.  At eight years old, he is coming to terms with his own mortality, he questions why 'he' had to get cancer and waste over two years of his life?  He asks how cancer starts and why it happened to him?  Did something go wrong?  Did he do something wrong?  It has taken hours to get Sammy to go to bed..and I am not sure he is done yet.  He cannot rest and is melancholy even when fun is happening.  Inside his bright mind are thousands of memories eating away at him.  Right now he is reliving it all and we cannot chase the boogie man away.  

Let's face it...cancer cannot really be cured.  That is why Cody's parents grieve for him, G is fighting for his life, and Sammy gets blood drawn every month.  How does a child 'get over' that?  Why are 46 children diagnosed with cancer each day in the US and yet so little is done to find a cure?  

Be honest, did you know that a gold ribbon stood for?  Pediatric cancer.  Do you see them on the gear of football players like you see the pink ribbons?  No.  Childhood cancer is killing our children, tearing apart families, leaving eight year olds with Post Traumatic Stress Disorder, and most people do nothing.  Not because they are mean, but because they do not know.  

I have written about this many times before.  I have asked for donations (and will again).  But today I ask you one thing only.....if you have Face Book, Twitter, or any other social networks, or if you meet a friend and say hello....PLEASE tell them about childhood cancer.  Let them know the statistics 46/7 and spread the word.  

The happy moments will be shared...they are wonderful.  But tonight I grieve for a little boy I did not know except through FB.  But there are many more grieving families out there tonight.  This post is in memory of a beautiful young boy, in honor of G and Sammy, and the thousands of children fighting for their lives tonight.  xxx

Happy July Fourth!

Today is a day to celebrate for many reasons.  Naturally, the fact the Colonies decided to declare independence from us Brits and go on to win the Revolutionary War is one reason...and I do celebrate :)

Another reason is that Sammy is up and running, joining in the fun and play, doing all the things kids without cancer do on this special holiday.

I am thankful, and send much love to those who are still fighting.  May everyone have reason to celebrate on this sunny July 4th!  xxx

The Health Bill

In 2014 Sammy will be 10.  He won't be thinking about health insurance, and hopefully, we won't be worrying about his future health!  I am not going to get political, but one good thing that has come from the last four years has been the fact that my son, who through no fault of his own got cancer,  will now be able to get insurance despite having such a pesky ol' pre-existing condition.

Had this bill not been passed, Sammy, like millions of other children with pre-existing conditions, including his brother who has asthma, would have paid through the nose, or been completely denied health coverage!  Imagine telling a survivor to cover their own ass because they had cancer as a child!!!!

I am ecstatic about this.  I could argue against other decisions made by the administration...but I could with any administration, that's life.  As I said, I'm not getting political, I just want to celebrate this milestone and acknowledge all the beautiful children it will help in the future.

Childhood Cancer Awareness

Well, I know some of you are going to think I'm ungrateful and should stop whining with this post...just be grateful for what I have, and shut up!  But I can't.  I really can't.  Right now, as I type, Sammy is putting together his Millennium Falcon Lego set all by himself and looks adorable with his shaggy long blonde hair and unfairly long eyelashes.  At school the other day, he swung from the monkey bars, showing off his latest accomplishment, hanging upside down and then pulling his own body weight up with his new-found upper body strength.  It is like cancer never happened...except it did...and Sammy is a normal boy again.

But...and this is where you may want to tell me to shut up moaning...if I hear one more person tell me I can put cancer behind me, move on, and try to forget about it all, I may just punch them!  A little harsh I know, but here is why I can never forget or put it all behind me:

Yesterday was my anniversary.  I did not spend it with my family, but at CHAM 9. Yes, many of you will remember that is the floor the cancer children go to for treatment and for neutropenia/infections/complications etc.  It is not the day clinic.  It is the floor Sammy spent most of his first year on, mainly because his body was so ravaged by the chemo, he was constantly neutropenic.

I was not at CHAM 9 with Sammy,  He doesn't even know I was there because I was visiting G, Sammy's cancer buddy.  The little boy who had the same leukemia as Sam and had the same treatment.  He was our guide as he started treatment a couple of months before.  He got better and showed us how great being done is.  Now he sits in CHAM waiting for his counts (ANC) to get above zero.  He is neutropenic from the chemo of his new protocol. He has relapsed and needs a bone marrow transplant.  He has leukemia again.

As I stepped out of G's room to give his some privacy for a moment, I noticed the mom of a very special 4 year old standing by the nurses station.  S has a brain tumor.  She has had surgery and probably needs another as only 2/3 of her tumor could be removed.  She has a scar on her bald head from ear to ear.  She is doing well but her cancer is very rare so everything is unknown.  There are no statistics to comfort her parents.  Not that anyone can go by that as G shows.

I know S and her family through the wonderful families at school.  It was her mom's cousin who helped organize all the SuperSammy t.shirts for his fundraiser.  Now she has made up the same shirt, in a different color, for S.

We try to make cancer go away for Jack and Sam.  I know it will be with them forever because it was such a traumatic time in their lives.  However, they deserve to put it behind them and live happily ever after.

As adults, we can do the same.  But how can we ignore G and S?  How can the faces of those who lost their battle ever leave our memories....and why should they?  We honor them by fighting to end cancer.  We honor Sammy by fighting to end cancer, even if he never experiences it again.  We cannot turn away.  We know too much.

Awareness is key.  The more people who know about childhood cancer (any kind; I am way beyond just leukemia now), the better.  Not because they might donate money to a cancer charity which conducts research (although it helps) but because they might tell a few people and raise awareness too.

I am not asking for anyone to live with daily thoughts about children with cancer.  I am hoping more people come to understand how 49 children are diagnosed each day in this country, and 7 will die.  Then, maybe they won't tell me I can forget about it all and move on.  Maybe they will ask how they can help children with cancer because they realize I may well know what they can do!

Here is Sammy's Team page for his Walk for the Cure.  If you would like to join his team, make a small donation, or pass it on to friends, you will be helping to make the difference and save lives.

Team SuperSammy

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.

Leukemia - On Our Minds Today!

So we finally had the "moment".  The one I knew we would have...eventually.  I just didn't realize how comfortable I had got until it happened.  So you're not panicking, Sammy is okay.  I am a little shaken and firing on major adrenaline with a massive dose of the 'oh craps' thrown in. Here is why:

About three days ago, Sammy came to me with pain in his neck.  It was the side his port had been on, so I figured he may have some aches at times or he was sore from all the playing he has been doing lately.  As I felt his neck, the hairs on the back of my neck stood on end..Sammy had lumps down both sides of his neck.

I had watched Sammy's neck develop swollen glads three years ago and, being completely ignorant of the signs and symptoms of leukemia, I did not rush off to the doctor.  We all know how that turned out.  This time, I still did nothing.  I observed Sammy and decided to wait it out a little as there is a lot of yucky sickness going around.

Today, however, I couldn't ignore my nagging feeling and I asked the school nurse to check Sam out.  She felt that his glands warranted a trip to the pediatrician.  Now, most teachers would call, make an appointment, and keep teaching.  Thankfully most teachers have not had a child with leukemia.  When a nurse says go, I go!  It was lunchtime and I got an appointment immediately (a perk of being a survivor) and my Principal wonderfully agreed to get my class covered so I could get back home to numb Sammy's finger ready for the blood draw.

I think a lot when I drive.  This drive shook me up bad!  I relived the panic and fear just after diagnosis.  I tried to push away dark thoughts about bone marrow transplants, radiation and more bloody steroids.  Leukemia is harder to get rid of the second time around.  Fear is a powerful emotion.

One of the toughest things to do is pretend all is well when you are crying inside.  Moms have perfected this art when it really counts.  I had to really conjure up my 'inner mom' and chat with the kids and pretend all was routine....Sammy still considers random blood draws routine.

The bottom line, after a very long doctors visit and through work-up: Sammy may have a virus as his counts are a little off but nothing to make one scream off into the sunset with manic desperation.  The doctor did measure Sammy's lumps, and we have to go back in two weeks to see if they have changed in any way.

The next two weeks are going to be very long.  It is Sammy's birthday on Thursday and we have his party on Saturday.  All has to be fine and jolly.  I reckon I can keep a stiff upper lip and keep myself almost rational about all of this.

Sammy looks and acts well.  He has no other signs of relapse.  He recently saw his doctors at CHAM and he was 'all clear' then.  I have to hang on to this.  I WILL hang on to it.  Sammy gives me strength so I am in good hands.  I'll keep you all informed.

Immunization Schedule - Again!

Sammy had the first of his immunizations last Thursday.  He has to have everything again and the immunization schedule is quite aggressive.  The poor guy had to have three...ouch!   I have to say I put up a fight.  I will immunize my kids as the alternative (getting the diseases) is worse, but I strongly hold out against bombarding children with multiple shots.  On top of that, one of the shots was the MMR (Measles, Mumps and Rubella) that has caused the uproar about its possible connection to autism.

I was not gentle with Brian whose turn it was to go to the clinic.  I was strongly voicing my objections down the phone at him but the outcome stayed the same.  The CHAM doctors feel that, because Sammy has absolutely no protection from any of the diseases, it is better to do as many as they can, especially as he is in school.  I get it, I really do...but I don't have to like it!

Sammy was not a happy bunny either.  He was brave (isn't he always) and took the shots well.  But the muscles were very sore afterwards and that is when he fussed the most.  He did go straight to school afterwards, and played well at recess.  I tried not to be a helicopter mom and stayed away, just checking in with Mrs. F, his teacher, now and again.

Each visit will entail an average of three shots for the next 5 months.  This stinks as, once again, Sammy has to be subjected to needles.  He was most disgruntled that he couldn't have the shots into the vein or into his port!  My how far we have come!  Here is a seven year old preferring IV's and 'hooked' needles jabbing his chest!  Chemo kids are TOUGH!!!

Good news on the blood-work...all is as it should be.  We are not looking at relapse so I cannot complain.

We learned of a new SuperKid at Cham, one connected to us through the families at our school.  SuperSophia is battling a brain tumor.  She has had the Superman Sammy t.shirt redone in pink and purple - the Dora colors, and now CHAM 9 has a new t.shirt to rock!  Please send Sophia all your love and prayers.  She has just turned 4 and is a beautiful princess with the bravery of a lion!

Changes

Sammy with his crab at the school puppet show

Things are looking up! Sammy has realized he is improving, and the effects of chemo are not getting the better of him.  Yesterday, while we snuggled in bed, Sammy began talking about Easter and all the fun things he is looking forward to.  He hopes the Easter bunny will be kind to him even though he is getting older.  Then, out of nowhere, he suddenly remarks,

"Oh my!  This will be my first easter off steroids...no yucky feeling or medicine.  Oh I'm so happy!  I can have Easter without cancer!"  

Sam is so glad to be done and I'm really happy he is enjoying this time....he deserves to!  He also noticed something about his appearance as he was getting ready for school.  He came running out of the  bathroom and shouted,

"My head has shrunk!  I have a really small head!  Is it possible that I have a shrunken head?"  

The concerns were so genuine, I had to contain my laughter.  You see, Sammy had noticed what I had seen for a while; the moon-face created by the steroids has completely vanished.  Sammy's hair is also long and soft again.  The old Sam is back, and there is no trace on his face of past battles.

Mr. Moon-Face - the chemo changes Sammy's features dramatically