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.