January

Snow, Snow, Snow....that is January in a nutshell.  It was wonderful to see Sammy playing outside and building snow forts with Jack.  Jack's big event was the Third Grade Strings Concert.  He was awesome!

Dex Days

Week one of the new cycle started a day early due to the snow storm!  Sammy went to the clinic today and the new doses of meds began.  Already we see the effects: dark red circles under his eyes enhanced by his whiter than usual skin; pain in the gastro tract, irritability, and that bloody awful "steroidy" feeling again. 

Sam has been having bad nightmares every night.  We tried Mr. Tweedle (the family elf, who has written several letters and promised to stay in his room every night, snuggled up to Sammy as he sleeps). Then came the 'magic light bulb - don't ask!  Next we had the Mummy Snuggles with 'happy thoughts' before drifting off.  Finally, we had Dr. Leslie, the Psychologist talk with him today.  He still went to sleep in fear of the dreams ahead, although our snuggle-talk did yield the idea of the thing chasing him being the chef from his favorite Hibachi restaurant so Sammy could just turn around and eat all the delicious food he had!  Hey, I'll try anything right now. 

Pain seems to come more quickly of late.  Sammy is on slightly higher doses of Dexamethasone (Dex), the steroids.  This is due to his increased weight...he is getting a little chunky, but I will take that over the skeletal bald guy any day.  Tonight he had to 'go' to the toilet and he asked me to be there for him as it hurt so much.  My brave little soldier remembered to breathe like a Lamaze instructor and we eventually got through the process.  He was wrung out and exhausted and asked to go straight to bed.  Little events can really take their toll. 

There is also the issue of a major increase in the mercaptopurine.  The goal during the maintenance phase is to get the ANC between 500 and 1500 for peek cancer zapping power.  Sammy, as previous posts have mentioned, has had counts which were much higher than this, and I have asked about it several times.  I fully expected the 6MP (mercaptopurine) to go up this cycle and noticed it had changed to an increase from 50mg to 75mg for six out of the fourteen days .  Last cycle he only increased to 75mg for two days.  I would have been okay with that except his ANC today was 1628...not far off the target zone.  If he had managed to get that close on just two days with an increased dose, what on earth will six days do?  Will he suddenly bottom out and hit the dreaded neutropenia again?  With the rash of stomach viruses in school right now, that could be dangerous and most likely put him back in the hospital. 

Once again my agony over not being able to be at the clinic due to work was unbearable.  I get so angry about having to rely on second hand information when we are dealing with substances which can kill.  I always check everything once I get the information (prescriptions, dose schedule etc.) and I then need to be able to ask questions.  Thankfully Dr. C is very quick to respond to my emails; he just contacted me about my questions:
Hi Dr. C,

Sorry to bother you at home again...not being able to be at the clinic means I am often left with questions. Sammy's 6mp was increased this cycle as I expected, but I also noticed his ANC was down to 1628 which
is one of the lowest it has been, so I am thinking the extra 50mg last cycle must have had quite an effect. As a result, I'm a little concerned that the increase to 75mg 6 days out of the cycle is going to really kick his ANC below 500...or close to it. I am sure the large increase has been carefully calculated, but I just want to check in as we have had mix-ups before, and I would rather be over cautious than mess with chemo! Also, Sammy has had tremors and stiffness back in his legs over the last cycle....the message I was passed along was that it is not known what might be causing it...do you have any thoughts? Finally, Sammy actually brought up the fact he was going to have an ultrasound for his urinary tract infection but no one else has mentioned this. Given Sam's amazing ability to keep account of everything, I just want to see if that was something he should have, or if it was just mentioned but then decided against.


Thank you for your patience and help,
 Katy


Dr. C responded:

I'm not worried about the ANC of 1628. As long as it doesn't go much lower for long periods, that's definitely in the range I like to see. You and I will keep a close eye on the trend, week to week, and adjust if necessary. In the meantime, I'll recalculate the dose tomorrow when I have his numbers in front of me. Tomorrow morning, I'll get back to you on that and the other two questions. I imagine you'll be home enjoying a snow day ...

Unfortunately, we will not be having a snow day tomorrow...our school district rarely does, just a delay, but I look forward to hearing the answers to my questions and remain utterly thankful that we have Dr. C watching over the whole proceedings.  I just so wish I was there in the first place.  (I'm having Deja vu!)

Okay, I'm off to bed...just got to give the dose of poison, um I mean 6mp, before I hit the hay.  Maybe I can put some happy thoughts into Sammy's head to ward off the nightmares as he drinks it in his sleep? 

Reminding Myself

Today I "met" a new friend whose one year old has recently been diagnosed with T-Cell ALL.  Her words were mine a year and a half ago...fear, shock, panic...She 'friended' me,  and I responded with my own words...calm, reassurance, take one day at a time and even "lucky'!  I was reminded how far we have come and how we really do not have the terrible times anymore.  I was honest and shared that I still have fears and panic moments...but our children do have the "lucky' leukemia...one of the most curable, and with one of the least toxic therapies.  (Sammy has to have a stronger, more toxic treatment because he is high-risk, but it is still much 'kinder' than many other protocols.) 

Reading back to older posts, one can see the vast battery of chemo drugs we pumped into our little boy.  Now, on Maintenance, things steadily improved. Here is where we are at right now.

 

Maintenance

Sammy's  leukemia remained in remission after induction and consolidation, so maintenance therapy was able to begin. Most treatment plans use methotrexate and 6-mercaptopurine, given as pills, often along with vincristine, which is given intravenously, and a steroid (prednisone or dexamethasone). These latter 2 drugs are given for brief periods every four to eight weeks.  Sammy has the methotrexate given to him intravenously instead of in pill form, and the steroid pulse is, unfortunately, every three weeks not four to eight weeks.

 

During the first few months of maintenance, most treatments include 1 or 2 repeat intensified treatments similar to the initial induction. These 4-week intensifications are called re-induction.  Sammy did not have this.

Occasionally, leukemia patients at higher risk may receive more intensive maintenance chemotherapy and intrathecal therapy.Sammy may well more intense...but as I don't see other childrens' protocols, I don't know if there is a big difference.

The total duration of therapy (induction, consolidation, and maintenance) for most ALL treatment plans is 2 to 3 years. Because boys are at higher risk for relapse than girls, many doctors favor giving them several more months of treatment.Yet Sammy is scheduled to come off treatment in October 2011, just two years after reaching remission.  I know this worked for Peter...but I am a little nervous.  I have been told it is because his body will have reached the maximum doses he can have. 

Sammy is now off neurontin and we do see his movement has been impacted; he has stiffer legs and looks a little more unstable.  We have decided to try physical activity to strengthen his muscles, rather than chemicals...especially as he does not seem to be in pain from it.  

So, this week (week three) is amazingly easy.  No steroids (we have those to look forward to next week), and no mercaptopurine as this is his week off.  He had his methotrexate intravenously at the clinic and so the only meds we have to give is the antibiotic for the Staph infection.  Can you believe it...normal, everyday antibiotics are the ONLY oral meds this week.....we have come a long way, and I believe my new friend's baby will reach this stage too...one day at a time.  Much love to them both. xxx

Port, Time and Staph!

Given that this is week two of the cycle, we are enjoying more normalcy than last week.  Sammy and I had a mommy date at the Lakeview Diner followed by fun at the Childrens' Science Museum.  Jack and I had our date today: Red Diner followed by a couple of hours sledding.  I am in agony as I type...the wipe out was AFV funny...but that is another tale to tell.

Of course, I had to explain to Sammy, him feeling relatively okay, that he may not go sledding this year due to the port in his chest and the dangers of knocking it.  The poor little guy was in tears; who wouldn't be?  He calmed down after we told him we would go many times next winter.  It never fails to astound me how this child can cope with such long time periods being presented to him.  Next winter is a whole year away, and he knows it (no cognitive issues presenting- PHEW)! 

Children with cancer have a different understanding to anyone else.  They see 'time' in terms of treatments, visits to clinics, end of certain chemos, and when they will be able to 'do' something again.  Time has passed quickly for us as a family.  I never want to wish our lives away, however.  Even with cancer, I am savoring every moment of my childrens' youth.  It is precious, and we are trying to make it as positive as we can for both Jack and Sam. 

On a side note, Sammy's urine culture finally came back with a trace of Staph!  Antibiotics will begin tomorrow...oh goodie....now we have to persuade Sam to gulp down a new concoction!

A Lovely Surprise!

Today I logged in and was greeted by a lovely message from a very wise blogger, Galen Pearl, author of one of my favorite blogs, 10 Steps to Finding Your Happy Place.  Galen has awarded me the Stylish Blogger award...Me!  I am very honored and pledge to live up to my new title by actually editing a little more carefully on the non-"oh my goodness, I'm losing it"  rants that will never be edited as I can't vent and edit at the same time :)

Thank you so much Galen, and now I know I have to share seven things about myself - I will make them all non-Sammy/cancer related!

• I am from England and moved to the US over 11 years ago to marry my true love from New York
• I attended Liverpool University and met my hubby while studying abroad for a year at URI
• I love to travel (on hold at the moment) and miss going Christmas shopping in Seville, Spain for the day...but my favorite place in the world is the Llyn Peninsular, North Wales
• I don't believe in horoscopes, but I am a Scorpio, and people get really shocked when my 'niceness' goes away and often remark that 'I have a sting in my tail' when it happens.
• My hobby is dancing - Hip Hop, Lyrical, Jazz, Contemporary, and I will be 'performing' in a show with other adult dancers in April (gotta lose at least 10 pounds first)!
• I love music and have recently developed a bit of an obsession with Pearl Jam...Hubby claims I am trying to relive my LOST youth!
• Once I have more "me" time, I plan to begin learning photography.

Now I have to select five blogs to bestow the award to.  I highly recommend Galen's blog but can't include it in my selections. Here is a list of blogs I think are awesome and well worth visiting:

Grace
Thumbin' My Way
Home is Where the Heart is
Heart to Heart
Be Here Now

I am sure I will find many more blogs to recommend as I expand my horizons.   I feel the blogging community is so supportive of one another, and this award system helps us to get word out of blogs we like.  Have fun exploring these blogs.

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.

Nicola - In Memory


I dedicate today to Nicola, a little boy who passed away today due to a very different kind of cancer. I send my love to his family and hope they can come through this...although I have no idea how that can be done. Rest now, Nicola.

Update on Sammy

The steroid pulse is over for this cycle, thank goodness.  Sammy felt it was a rough deal and was typically steroidy with his moods and upsets.  Lately, his appetite has actually decreased...well, he has really been hungry but unable to decide what his body will let him eat.  We try to cook a few dishes for him when he's feeling REALLY bad but we also try the "you can be the boss of steroids so just eat what you are given" tactic too. 

Poor Sammy has also been having night accidents more recently.  I was Evil Mummy as by the third night of a midnight (or later) bed linens change, I snarled that he will not be allowed any more to drink at night and should know better as he is a  big six year old!!!  What a bitch...and yes, I felt like the worst in the world immediately afterwards.  To compound my shame, Sammy asked the next day if he could be helped to drink more water earlier so he would not upset me and get shouted at at night....I crawl into the gutter where I belong! 

Anyhow, much loving and admitting I made a mistake later, Sammy is happier and off steroids. Today was also a snow day. Sam played in the snow and built a snow fort with Jack.  I have lots of photos on my camera but cannot find my camera case with the leads to upload them.  Bother!  I will hunt it down soon, I'm sure. 

Tonight Sammy read Diary of a Wimpy Kid  out loud to me.  I am very impressed by his reading.  I believe it is a second or third grade level book.  So far the cognitive effects of chemo are at bay.  Sam is even being enriched in math at school., he is doing so well :) 

Well, this proud but painfully human Mum is off to bed.  Sammy has clinic in the morning which means leaving the house by 6am, battling the snow down to the Bronx, dropping him off, and begrudgingly leaving him to be accessed and chemo'd up for the week.  I love my little boy so much. 



Light The Night

A major milestone for me was going to the Leukemia and Lymphoma Society's fundraiser, Light The Night Walk. In 2009, Sammy had just been diagnosed and we were still recovering from the shock of it all. Gina had been my guide from the start and she invited us to join Peter's team, The Warriors (so aptly named), and walk with them. We were very excited by this. It was an honor to be in Peter's team.  A beautiful banner was even made for Sammy.

 

Sadly, Sammy was hospitalized the week of the walk, and he and I settled for pictures of the wonderful event sent to us almost in real time to help us feel a part of it. 

This year, Sammy had his own team and we did some major fundraising.  The support our friends and family have shown included digging seriously deep into pockets....we raised over $8,300!  Best of all, on a personal level, Sammy was able to lead his team at the walk...we were a sea of Orange Super Sammy shirts.

The Sammy banner that won the "Most Inspirational" award

The boys...from our neighborhood and my class at school

My friends supported us on the cold night

On the stage, counting down to kick off the walk

Strength Together

The firework display - beautiful!

Jimmy Locust with Sammy - his dance company, LPAC, danced on the night to support our family and help fight the fight for all affected by blood cancer

A cold but determined Sammy in his preferred mode of transportation for the walk

This moment moved me to tears...the line up of the survivors.  How can Sammy and Peter be up on that stage right now?  It finally hit me right at this point...they are cancer survivors!

Heroes

LPAC dancers before their performance

The Warriors - Peter's sisters and students from Special k (my past students).  These girls are forever in my heart.

Team Sammy also included students from my current class...awesome kids!

Sammy proudly holding his "Most Inspirational banner" award

Staff from Little Friends, Jack and Sam's preschool - they raised over $1800 for our team and have committed to walking with us next year too

Walking - There were so many of us in Team Super Sammy, we couldn't stay together in the 4000strong crowd!



The walk



So it was a very emotional night for us.  Sammy was well enough to participate, and we were overwhelmed by the amount of people who braced the cold to walk with us.  There were over a hundred people on our team that night and many others had supported us with donations from afar. 

Super Sammy will walk each year to raise money to fight blood cancer.  Each year, we hope to be celebrating Sammy's continued remission and eventual cure.  Finding ways to lessen the 'late effects' cancer treatment caused as well as prevent other children going through the grueling and toxic treatment has become my number one goal.  We can't change the fact that Sammy has cancer and has to go through this now, but we CAN do something to improve the future for the approximately 43,050 new cases of leukemia that were  diagnosed in the United States in 2010.

LPAC Dances at Light The Night

Changes in the Chemo

As I have mentioned, we are in the Maintenance phase of the treatment.  Some of the aggressive chemo drugs are done, and we have enjoyed a less neutropenic state for a while.  This school year, Brian and I have been literally dropping Sammy off a the clinic with Poppa, rather than stay and arrive at school a little late.  (We are eternally grateful we had the support to have done that last year, but it is so hard just leaving Sammy to be pricked and prodded with needles and toxic substances each week.) Nana and Poppa have been superstars, never failing to take over and be there as long as it takes....but it is so hard to walk away and wait for the call to say Sammy is done and will meet us at school.

Sammy had a bad clinic visit today.   His port was not accessed correctly and had to be redone, blood appearing at the port site, putting the terrors in my poor baby.  Now this can be quite common and we certainly don't blame anyone, but it really shook him up and Mummy wasn't there to comfort him.  Talk about feeling guilty!

Another downside to not being present during the clinic visits is lack of communication.  Sam's Mercaptopurine doses have been increased, and I discovered this after he came into school in the afternoon.  I haven't done this in a while, but I decided to email Dr. C to find out directly what was going on.  Below is the email - it explains everything and saves me re-writing it over again:

Hi Dr. C,



Happy New Year! I have a couple of questions for you...not being at the clinic myself today, I'm afraid I have to ask via email. Firstly, I notice Sammy's 6MP has been increased on Thursdays to 75mg. I know that that is a normal dose for a child, but I was wondering why it is increased. I am guessing his weight has increased and therefore the dose needs to, but I also know we have to aim for as near to the target dose as we can while keeping the blood counts between certain levels without drastic toxicity...so I also wonder if it is time to start pushing more into him to further reduce the chance of relapse? We were only given a prescription for 14 tablets which is not enough for the new dosage, so I also want to make sure the prescription was wrong, not the dosage chart.

Secondly, I have asked this before and been reassured, but being me, I need to check again: Sammy still takes his meds crushed in a small amount of soda, therefore he never gets the full tab no matter how hard I try. We always give the 6MP at 10pm so food had been somewhat digested, but he cannot drink the recommended amount of water as he basically drinks in his sleep. Is all of this okay? I know he is not showing any bad signs, but I'd hate to continue as we are, only to discover we HAVE to get the whole tablet in him (somehow). I also worry about his liver with us not getting water into him.
Thank you for your help with this...we are very settled into the chemo routine, but now and again I need to check in with you.
Katy

I know Dr. C will give me a straight answer...he has always helped me understand what is going on without 'fluffing' the big picture.  I appreciate this and trust in how Sammy's protocol is being handled.  I am just a mummy who needs to BE there!

Ten minutes later....

I have just received an email back from Dr. C...told you he was good.  The dose is being increased because Sam's counts have been so good so they can push more into him to help reduce risk of relapse.  He apologised for the incorrect prescription, although I know it was not his fault.  He is concerned, however, that Sam is not getting the full tablet of Mercaptopurine.  He is calling me at work tomorrow afternoon to talk with me.  Tomorrow will be the longest morning EVER!

Panic...Nothing's Wrong!

Let me start by saying Sammy is fine.  My resolve to stay positive is not, however....bother!  You see, I happened upon the US News Best Children's Hospital for Cancer site.  Not surprisingly St Judes is #1.  But I scrolled down waiting to see where Montefiore fell in the rankings....nada.  I tried looking it up by area...nothing!  I then had a 'mild' panic attack! 

I know Sammy is doing really well on his treatment, and Peter is now five years clear and an all round superstar, but my body actually aches from the panic I feel. 
Categories for the rankings included;

• ALL Survival
• Reputation with Specialists
• Preventing bloodstream Infections
• Infection-preventing Activities
• Nurse-Patient Ratio
• Advanced Clinical Care

So Monte is not even on the radar!  Why?  What stops them?  is it the fact they are not a Cancer Specialist Hospital?  Many of the doctors are from Sloan-Kettering which was ranked #8.  I am trying to stay rational...I have always had such confidence in Sam's treatment despite the many hospitalizations and severe pain he has experienced throughout.  

It is strange that I always swore that if my child got cancer, Id' go to St. Judes, no matter what!  My child did, and I didn't go there....In fact I didn't even consider it when we were in the haze of diagnosis.  Why, I will never know, but Sam is doing extremely well.  So why the panic?  Perhaps because, when you trust something so much...with your own child's life, then they are not recognized in the 'business' as you would expect, it throws your sense of trust to the wind in a brutal, gut wrenching way. 

Compound that with my recent stumblings on blogs about children who have not conquered cancer, and the overall effect is...well, suffice it to say, I'm still feeling very grateful that we are where we are now, but today is a worry day!  January 4th...not bad for my positive outlook....I thought I'd cave by the 3rd! 

postaweek2011

Okay, I'm trying here.  I am actually working on following a 'blogger-type inspiration to post thingy' gosh, I don't have command of the English language tonight, and I'm committing to one post a week being about life outside cancer.  Shannon, my new blogging friend will think I'm a total stalker, but she has inspired me to live outside my comfort zone.  Believe it or not, I am more comfortable opening up about Sammy, cancer and the roller coaster, than other, more personal things. 

I don't even know if I have actually joined the group...or even if there is a group to join.  It all stems from http://dailypost.wordpress.com/  Who knows where this will take me.  The same rules will apply to my posts...I don't edit!  Why?  Because I write as I think and my typing is awful...I was too good at math to be in the typing class at school!  So I let it all out and cringe when I revisit old posts, but they are REAL!  I did discover the spell check the other day :)

Don't hold me to a specific day for these posts, and don't bank on me making any sense...in fact, you all have my full permission to skip them when they crop up.  They will be clearly labeled so you can identify them immediately.  Please comment on anything you are motivated to discuss or offer a counter opinion...I love debates...and remember...If Sammy goes into Hospital, all bets are off, until we are discharged and I get my motivation back.

Here’s today’s topic idea – brought to you by Plinky:


Share something that makes you smile. (Can be a photo, an idea, a memory – anything that comes to mind).

This picture was taken by me during the summer before Sam was diagnosed.  Nana Haze was over from England and we were enjoying three carefree weeks of summertime fun.  The bridge is at Binny Park in Greenwich.  We call it the Mary Poppins Bridge Park as the bridges are reminiscent of the park in the Disney Movie.  Magic happens here.  From the time Jack was nursing, Nana and I took the children to Binny Park.  Each trip evolved into new discoveries:  the houses within the bushes; one for Jack and one for Sam. There is always the heron seated majestically waiting for a catch,  The lighting changes depending on the season we visit and the time of day....no two visits are the same.  Most special of all is the fact that we spend hours there with Nana, exploring learning, bonding and enjoying...all in a way I remember doing as a child with my mother also.

When I take the kids there on my own, we last about ten minutes.  Nana creates a magical experience which opens up my sons' eyes to the world around them.  I wan to do this, and I try to learn for it, but I concede...it is a Nana thing. 

These memories make me smile.  They are special on so many levels.  Our last visit was with Sam in a stroller, yet we still stayed a good hour or more...Nana magic!  I grew up with my Nana being the creator of all things wondrous and fun...I smile to see my own sons innocence retained for these special moments.

New Year...New Friends...New Outlook!

This is it!  This is the year we are supposed to come off treatment...not until late October, but at least it is this year.  Our goal is to get through with as few speed bumps as possible (aka admissions).  My personal goal is to try to get the family on a more normal regimen...I will exercise and take "Me" time with my close friends, Jack will get to have more play dates with friends, Sammy will play sports and have play dates, and Brian will see more of his friends.  I also want to spend more time as a couple...perhaps a concert or two, date nights, and family dinners once again.  We will see how it all goes. 

Friendships are vital when one is going through cancer (as a caregiver or a patient).  I have been blessed with so many friends.  Some are there in emergencies, some are there if I approach them, and some are just always there no mater what.  There are many different types of friendships I have discovered, and each one is unique and vital to our overall well being.  I know not to overlook those I rarely see...they are often working behind the scenes for us as a family, or are engaged in something to help support leukemia research.  I have friends who accept I don't contact them often but when we meet up, always ask about Sammy and try to support me as best they can. 

Then I have friends who just "do" because they know I need it and don't wait to be asked.  In the past it might have been to run interference to prevent too many people bombarding us with well wishes when we weren't even able to utter a grunt, never mind spend time filling each individual in on the situation.  They made sure we had food during the 'dark days' of constant hospitalizations, working all day and at hospital all night: they made sure Jack was okay and that we do not have to focus on feeding ourselves...at that time, I don't think I had the strength to even think about cooking. 

Today I am discovering new, wonderful friendships based on others' willingness to share their thoughts and feelings in their own blogs.  I am not talking about "Coping with Cancer" type blogs, but portals into LIFE...something we are all ready to embrace again.  2011 is a year to begin anew, refresh ourselves spiritually (whatever that means to each of us), mentally and physically. 

I was going to tell you all about the wonderful New Years Eve party held by our close friends and neighbors...Sammy fell asleep, Jack partied with many friends, and Brian and I were with special people in our lives.  But that was just the beginning of the "new".  We are ready to rumble!  So what if we had an ER visit and Sammy had Flu...so what if we have steroid week coming up...so what if I know my resolve is going to crumble at times....It is there now and I really, honestly, never thought it would be there again.  Bring on 2011!