Update

I just received a call from Stamford ER to say the culture grew bacteria...Gram-Positive Cocci to be precise or Staph to you and me.  I am surprised as this is usually a complication that occurs when children are neutropenic, and Sam has counts of 5000!!! He is technically fitter than me!  So, we have to make sure he stays safe and well...no Kindergarten Gala after all.  Bump bump bump!

Stamford ER

Last night I lay in bed listening to strange gurgling and realized it was Sammy throwing up.  He has been so congested lately, and it has led to a couple of throw-ups and many night s of coughing.  But last night a fever decided to join in the fun too!  Sooooo....we did the fever dance and called CHAM.  Luckily, Dr. Gill was on call and he said, as Sam was not likely to be neutropenic, we could take him to Stamford ER and have them call him.  We were so glad not to have to hike down to the Bronx.

I took Sam and we were ushered into triage fairly quickly.  It was quiet...so different from the bustling CHAM ER, and then led into the room.  It was THE room!  The room where it all began, back on September 13th!!!  The room where I learned my lovely Sam had cancer and that our lives would be a series of crazy rides like the one we were having that night.  I shuddered, and then got on with it...what else could I do? 

The doctors and nurses were attentive and very friendly.  We everything was done in a very timely manner and even the admitting lady brought me coffee!  Sam was the superstar, however, when it came time to access him.  There were no pediatric needles so he was going to have to have the one inch needle pushed into his chest (into the port really), and I was very concerned it would cause him to loose it.  I could not have been more wrong.  Sam was as cool as a cucumber, told the nurse just to do it and get it over with, and didn't even flinch as I saw her push down hard to break the skin.  WOW!  He was AMAZING :)  I have to say, Sam really showed the staff at Stamford how far he had come...I also think their calmness helped.  CHAM can be very frenetic and he already knows how much it can hurt there.  The nurse also had a great trick for getting the blood; Sam often clots and won't relinquish his precious blood without hours of trying.  A good cough throughout the drawing was all it needed. 

We had a long night, just by the nature of what was needed, yet it was by far the easiest ER visit.  We had X-rays done to check for chest fluid..all clear.  We had an allergic reaction to the antibiotics so Benadryl was needed, and we had another gagging on the phlegm episode, so the doctor put Sam on a nebulyzer with sterile water to unclog him a bit.  We were well looked after. 

Now Sam is asleep on the couch and I am trying to get the energy up to pack some more boxes for our move.  It is strange how accustom we become to things, and also how being in THAT room in the ER was not as bad as I thought it would be.  yes, we were back in the ER for yet another fever; and yes, we still have a long way to go; but sometimes the bumps are not as big as they used to be and that is good! 

Thursday Sam starts day one of his next cycle...always rough....but it is also the beginning of Maintenance....I wonder if it will really get easier, or will we just be more able to cope like last night? 

Downs and Ups

For the past month things have been less than easy.  Sammy's physical abilities have been under close scrutiny: neurontin for neuropathy...not really helping movement but maybe taking away some of the pain, weekly check-ins by the CHAM doctors to see how his walk is doing...progressively getting worse! and finally, being scheduled for OT and PT at Greenwich Hospital with D.J and Heather.  Finally...something that indicates the possibility of progress.

In addition to our worries about walking and the 'claw-like' positioning of his hands, Sammy has also begun evaluations through Stamford Schools.  Hart school has scheduled a series of evaluations, cognitive, physical and emotional, so as to develop a special educational plan for him.  We cannot get this through the school district he attends (where we work) as he is not a resident of the town...but they will provide the services once Stamford has evaluated him for needs, and agrees to cover the cost. 

A major issue right now is the question of whether or not Sammy will stay in Kindergarten next year.  his academic ability indicates that he is ready for first grade, but his lack of stamina in the classroom could mean more missed school next year and thus, missed first grade instruction which is crucial to future academic development.  What makes the decision so hard is that we have no idea how Sammy will respond to the maintenance phase of treatment: he may become much more able to take part in all classroom activities and receive all instruction, but he may not.

But...the great news is that Sam is almost at the point of beginning Maintenance!!!!  He is done with the agonizing asparaginase shots and should be on slightly reduced steroids for each cycle.  He will have to be accessed every week from now on  (until at least Oct 2011) for his weekly methotrexate dose and will have LP's every 18 weeks.  The usual daily meds will continue and the mercaptapurine has actually been increased again as his counts remained too high over the last few weeks.  The aim of maintenance is to fully blast away all remaining leukemia cells which remain undetected in the body.  It lasts 70 weeks and is generally considered to be the easiest part of treatment.  Some children remain very agitated by the steroids and the vincristine can still cause pain and neuropathy, but in general, many children start to feel more like their old selves. 

Sammy has been though the toughest of all week ones this last cycle..he was in so much pain, felt so unable to move, and was emotional distraught, even telling me he wanted to just give up and let the cancer win!  My heart broke a million times that week.  He was not my Sammy and he knew he was not the old Sammy he wanted to be.  My son grew up and gained such astute maturity about himself, his body and his situation, I was proud and yet longed for the innocence of children who feel no hardship. (I know so many do). 

But things got better more quickly than normal too.  Before the first week was over, he was chatting and happy, moving with his 'old-man' gait, and has actually been to school for several days.  He loves going to OT and PT, especially today...he got to exercise in the pool :)   Sam sleeps though at least half of the school day, but he is also able to be part of the class again and sometimes plays outside, Brian or I acting as his aid so he is safe. 

Today, life is good.  We are moving towards  the chance of an easier phase, and hoping to have a summer with less fevers, pain and emotional stresses.  Fingers crossed!!!!

Birthday Boy!

Sammy was walking fairly well and was in high spirits before his birthday.  He had actually built the whole thing up so much, it could not possibly meet his expectations.  Sure enough, as the first guest arrived at My Three Sons in Norwalk, Sammy fell in the soft play area and was in a lot of pain for about twenty minutes.  Finally he calmed down and enjoyed most of the other activities while held by Daddy...he had lost his walk yet again! 

Overall Sammy did well.  He had high counts and could relax and enjoy, just not walk.  He loved the family party the following day with his cousin Andrew.  He even won the Spongebob pinyata...yippeee!

So now my little boy is six.  I am getting further away from the cutie who climbed up me and spent ages just being in my arms as I walked around the house.  I miss snuggling into his hair as we did that, my pleasure coming from the feel and smell of his blong locks and marvelling at the length of his lashes....not fair how boys get better ones than girls.  Sammy has missed most of his Kindergarten year and I have missed my Sammy.  We are getting more glimpes of him again but I am always waiting for the crash.  Meanwhile, here are some pictures of the big day...or should I say weekend). 

Problems!

Well, Dr. Cole recalculated the Doxorubicin and Sammy was officially taken off having completed all the doses.  He started the methotrexate via his port once a week and had to begin twice weekly visits until the asparaginase shots are complete...they can't be given the same day.  Having spent most of March in the hospital; admitted twice, we were very glad to hear that things should become easier now.

Well, it has not!  Sam has now become an invalid, unable to walk without help and then only for a few steps without being exhausted and in pain.  This development happened after a fall over a weekend in April, but I think it was already developing due to the vincristine taking its cumulative toll.  So, after Sam fell, he was taken to the local doctor who sent him to the osteopath to get an xray.  There was a slight shadow on one of the xrays so Sam was put in a brace.  He was unable to move or walk.  By Wednesday afternoon, he was looking very strange and hot, so I took his temperature as soon as I got home from work.  It was 102.6!!!!!!   We still waited to see if it would go down...it didn't..until we reached the ER.  Yep, we were back at Montefiore, doing the ER dance again.  (Brian had taken Sammy to the ER only a week before for a fever Spike but his ANC was high enough to come home by about 11:30 - we hoped it would be the same again.) 

Sammy was accessed and the nurses tried to take blood...no luck.  I explained that it had happened a week earlier too and only a special anti-clotting drug would help.  That had to then be ordered and administered and then we had to wait for it to work.  Meanwhile we were taken to xray to check out the leg. We got back to the ER from xray by about 1am.  Sammy was exhausted and I was feeling it too.  I was a little wired, however, as the technician had called me into the room to check Sam's pockets for objects as something had shown up on the xray.  The tech and the doctor did not know what it was....we had to wait for the specialist to read the xrays.  I was so worried...Sammy's original xray had shown the huge mass of cells in his chest...had it come back?  This was to be an unanswered question into the next day.  Sam and I were still in the ER by early morning and they then sent us to the clinic to have the HemOnc doctors look at him.  I was cross eyed by then.  Thankfully Sammy had slept a little. 

Sam had his chemo in the clinic and we waited for the results of the xray.  Nothing!  He was then sent home, returning the next day as his blood was low and a transfusion was imminent.  Instead, Brian, who had taken Sam in, called me to say the specialist had seen the mass, checked the bones, and said they were fine but the muscles had atrophied.  The mass remained a mystery but it wasn't cancer.  Finally, Dr. Moody burst in to look at the films and burst out laughing.....it was Sam's penis!!!!!!!!!  Phew!

Easter

Unwrapping Easter baskets from the girls at St. Catherine's Academy

ANC Zero!

Sunday, last week, was an ordinary day.  We had been enjoying the fact that Sam had been taken off the chemo due to low platelets, but had an ANC of 1200 on Thursday.  He was 'high' and able to do regular things.  We had gone to Casey's (a local restaurant) with a group of friends, stayed up late watching movies and eating take-out, and had welcomed kids into the house once more.  Then, as I put Sam to bed and took his temperature, he showed 100.3!

Now 100.4 is the magic number, so I decided to wait. Aafter all, his ANC was high.  Sam had been in great pain with his lower back earlier that day and we had called CHAM and given Tylenol/Codeine.  But 100.3 was below the "call or else" number so I waited.  About an hour later, I checked again...100.7..."Bother!" I said to myself, or something to that effect, and we called CHAM.  As Brian spoke to the doctor, I was packing for a stay in hospital: my goodness, we know this routine so well. 

By Thursday, we were exhausted.  I had spent all of Sunday night in the ER and Sam was admitted to CHAM 9 by about 7am.  It must have been a busy night as we were put in the treatment room while they got room 915 ready...at least it was a single room!  We have had a very different stay this time. Sam was much more upbeat and actually roamed the hallways interacting with the nurses.  He enjoyed the 'Group' meet-up on Wednesday evening, having Chinese food ...eating rice with his hands...so much for being careful when neutropenic...and he was...his counts had dropped very low! 

Sam had a good stay...considering, but Brian and I were struggling with conflicting information and an absence of answers.  Dr. Roth and Dr. Gill had announced with great enthusiasm that Sam was to stop the chemo, Doxorubicin, as he had completed the amount allowed (it damages the heart).  Dr. Cole, on the other hand, thought Sam had four more doses to go.  I, being me, spent most of the week chasing all the doctors, nurses and even contemplated asking the cleaning staff to hurry Dr. Cole along with his re-calculations.  Finally we got the news that Sam had indeed completed the does and would be off the hard-core, count dropping medicine.  He starts methotrxate through his port once a week instead..oh goody! 

So we missed vacation week.  What bothered Sam and ourselves the most was the weekend.  Nana's birthday with a Passover gathering with the Janowski/Zweig clan, followed by Easter on Sunday.  Well, small miracles happen and Sam was home for both...his ANC shot up to 350 in a day so they let him come home...it should be 500 but they let him out for good behavior!!!