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

Immunizations - Gone!

One of the things we were told, way back in the midst of treatment, was that Sammy might have to have some immunizations re-done as chemo for leukemia can wipe them from the system.  Given that my little boy had been hospitalized pretty much for a year with a WBC of zero, we expected him to need quite a few.   Sometimes I am just not a big fan of being right!

During the last visit to the clinic, Sammy had blood drawn to check for antibodies and the need for more immunizations.  Low and behold, we discovered that he actually needs every single one of them done again!  He has no coverage...nada!  There are a few reasons I am 'slightly miffed' about this:

1. My poor son has to endure more pain and fear, as he will have to get shots each visit until they are completed (I refused to have them all done at once).  

2. I have to tell Sammy that celebrating the end of treatment did not actually mean no more yucky stuff!  He is going to be heartbroken and very scared.

3. I am going to re-go though all the angst of  immunization safety:  I agreed to immunize in the first place but was terrified of the MMR.  Ironically, it was just days after the MMR shot that Sammy was in the ER with strange symptoms...okay it turned out to be cancer, not anything caused by the MMR, but I'm still terrified of having to expose him to these drugs again.  

In the grand scheme of things, I am glad we have to re-immunize rather than face relapse, bone-marrow transplants another fight for life etc.  Things could certainly be worse.  But I am still disappointed that our journey continues to have speed-bumps, albeit much smaller than before.  I look forward to a smoother road in the future...sometime.

I HATE CANCER

I like not having cancer.

Written by Sammy

Six Months Post Treatment

Then

Now

Yesterday was Sammy's sixth month post-treatment check-up.  What a difference!  Sammy was showing off the tape he has on his legs from PT which helps him to move his legs properly; the doctors were all marveling at how wonderful he looks sans chipmunk cheeks and with soft, slightly shaggy hair.  All the signs are good...Sammy is still clear of cancer and has no indication of relapse.

We are on monthly visits to CHAM for check-ups and bi-weekly visits on a Tuesday afternoon for  Sam to see his psychologist.  Cancer and chemo almost seem a lifetime away: I see pictures of Sam in his bald, frail and sick condition and feel a bit of a disconnect...did that really happen?  Well, yes it did, and I was surprised at how easily I felt like forgetting it.  So much for my gallant "I will never forget" stance as we ended treatment half a year ago.

My head was forcefully removed from the sand during this past CHAM visit.  It really has been a while since I have been in the actual clinic part of the hospital.  Sam was upset by his blood-draw; having to have a vein in his hand accessed rather than just the finger prick.  He seemed like he had reverted back to the terrified newbie, crying and begging the technician to let him tell her when he was ready.  He was never going to be ready, as we learned over three years ago (wow!) and she stuck him and drew the blood among a flood of tears.  I am ashamed to say I was awful at dealing with this...no idea why. I just couldn't get my act together to help Sammy out.  I almost scowled at him to just let her do it and stop making a fuss.  ME...I did THAT!!!  But I hated myself and ran over to hug him and make him better, still feeling like a fish out of water...and a complete bitch! 

There aren't many blogs about life after childhood cancer.  There is a reason....it sucks to remember it.  But once Sam and I had endured a couple of hours in the CHAM clinic, I remembered why it is so important to keep this fight going. 

A little girl, no more than three years old, was skipping along the hallway.  Her head was bald except for a few strands of whispy brown hair.  Her skinny body and sunken eyes indicated that she was in the heart of the treatment.  Her nights would most likely be filled with chemo and pain, possibly vomiting and mouth ulcers. I didn't look at her and want to run over to her parents to tell them Sammy did well and she most likely will too. (This had been my inner response since treatment ended.)  I just wanted to cry with them and acknowledge where they are in their journey. 

As Sammy spoke with his psychologist, who visited rather than have us come back on Tuesday, we heard the screams of children resounding around the room.  Curtains were pulled across to suggest a semblance of privacy; nurses, our friends, shuffling carts filed with syringes and catheters ready to pump toxic chemicals into infants, toddlers, grade-schoolers and young adults.  Parents seemed to either melt into the shadows, quiet desperation on their faces; or hover over every moment, watching avidly to check everything was done as it should be, determination in their eyes. 

Sammy was opening up about his frustrations with not running as fast as his friends, how he felt they were less kind to him now he was just slow and easy to catch in tag.  But as time went on, Sammy began to withdraw too.  He was hearing the screams, watching the activity in the room, probably remembering his own ordeal.  We wrapped up the session early.  I made a mental note never to have him in the back again.  It sounded like a torture chamber in a movie. 

So, watching this from the other side was something I will never be able to fully describe.  Cancer may be in our past, but it is always going to be embedded in our souls.  You see, we know.  We understand.  We shall never forget!  Yesterday I learned how to stop hiding from cancer.  I made a promise to get back on the wagon and be active again in spreading the word.  Cancer can be beaten if enough people work hard enough at it.  I will be reactivating this blog and pushing for more exposure.  Strangely I did not do that as much when I was directly involved...perhaps I was too close to it?  But now I am going to blog and shout all the way to the top of the mountain.

There are still kids suffering indescribable pain due to cancer and the treatments currently available.   There  are still siblings who watch and wait for life to return to them too.  There are parents whose worst nightmares have been realized and there is nothing they can do about it.  Superman Sammy is my hero, now he will help others too!
xxx

The Danny Fund

The Danny Fund was founded in 1993 when a four-year-old Pelham boy named Danny was diagnosed with a rare form of leukemia. To help, friends provided warmth, love and emotional support to let the parents know they were not alone. They rallied around the family and raised money through bake sales, winter softball games and word of mouth. Danny responded to his treatment, his cancer is in remission, and he is now leading the active and normal life of a 20 year-old. With the crisis behind them, the small group of organizers met. If they could help one family in a meaningful way, why not others? The Danny Fund was born.

Every year the Danny Fund holds a fundraiser.  It is a fun gathering of community members and patrons, along with Danny Fund families.  The mission of the Danny Fund is to help families whose child has been hit by a catastrophic illness.  We are one such family and we ask that you join us on February 11th or make a donation here. For more information, leave me a comment or email given2fly46@yahoo.com.   We cannot thank the Danny Fund enough for all they have done for us.  The video above says it all.

Read more about the Danny Fund here.  To see how we have been helped in the past click here, here, and here.