We're Done!

"The sun is setting...the sun will rise another day!" (Long Road)  EV


Well, the day for the sun to rise has finally come... Sammy is off treatment.  Strangely, I didn't leap to the computer to share it with you all as soon as it happened.  In fact, I have avoided this blog for quite some time.  I am not sure why...I just didn't want to post anything.

I do have fun moments to share:

We went pumpkin picking at our usual farm and had fun before treatment was over. 

During week two of the last cycle, we journeyed to Maryland for Cousin David's wedding with the beautiful Chesapeake Bay as a backdrop .  

The boys enjoyed the hotel pool!  Sammy perfected his handstands :)

Then came the final dose of Mercaptopurine.  I never thought this would come.  I captured the moment on camera...felling strange for wanting to.  First I had to crush the pills...

This is our box of poisons medicines....the entire drawer is filled!

Once the pills were crushed, I mixed them with coke...once the white powder was hardly visible, it was time to drink it on down.

Nothing like drinking in your sleep.  Sammy actually doesn't remember most nights.

To celebrate, balloons and gifts awaited the boys on the final day of chemo...Sam would be going into the clinic for his final dose of Methotrexate.  Jack wanted to get up early with him to cheer him on.  

Leslie came with goodies:  A big box of donuts and juice to celebrate! 

 Megan  had to have a hug!

The following day, a surprise awaited us....the entire school (and most of the district) donned the orange Superman Sammy t.shirts again to cheer Sammy at the end of treatment.  We walked out to the playground to a sea of orange and chants of "Sammy..Sammy".  Amazing and very emotional!

So now it is over...except it really isn't.  While we feel very lucky, we still have a long time before Sam is five years clear.  We still have to draw blood and hope nothing shows up in it every month.  We still have to force medicine into Sam to protect him as his body is still weakened from the chemo.  We still have to have heart, major organ, and cognitive testing done to see how Sam is doing.

I don't know if I will blog all of this...I hope I do....but for now I just want to put things as far behind me as I can.  Of course I can't do that really....next week is the big Light the Night walk....it means so much to us and raises MUCH needed funds for fighting blood cancers.  I will never stop raising money to find a cure...to beat cancer....to know other children do not have to go through what my beautiful little boy went through.  It has been a LONG ROAD indeed!

Lucky 13

Jack and Brian came with us to the clinic last Thursday.  It was quite the family affair.  The reason we all descended upon CHAM was due to the fact Sammy was scheduled to record his Oral History video and we wanted the whole family involved.  Of course, before we did that, we had to go through the usual visit palaver.  

Jack seemed fine with the whole thing...we were glad that it was a quiet day and there was not the usual bustling and sounds coming from the other beds.  (We have seen Sammy grow from screaming child to confident master of his domain, but there are always new children taking the journey and their cries and screams would have upset Jack a lot....I know, I have gone to the bathroom for a cry on past visits!)

Daisy was there taking Sammy's vitals as usual.  I had to leap at the chance to get a picture of her ready for Sammy's scrapbook.  I am trying to get as many doctors, curses etc. as I can before treatment is over. Not that we won't be back...we will every month, but I just want to capture the 'treatment time' right now.

Speaking of treatment, Dr. C gave us the final date for Sam.  He will get his last dose of Methotrexate on October 13th!!!!  13 really is our lucky number...we discovered the leukemia (just in time) on September 13th, 2009, and we end treatment exactly two years later.  I am soooo excited.  I have blown off the anxiety over it right now...I am sure it will come back, but right now I'm HAPPY!!!!!!

Dr. Jack!

What a Week!

There are many things to write about Nana's visit.  All will be done in time.  This past week, however, was a little challenging but turned out to be inspiring.

The steroid pulse had its usual stuff...plus severe back pain in Sammy's lower back.  Each cycle we get a new development...what fun!  This week was very intense as far as crying from anger/frustration/pain goes, and we resorted to the Codine several times.  Sam has to feel very bad before he'll take anything.

Basically, the pain and crying continued into the following Thursday.  This is not not usual as, by Tuesday, Sammy generally starts to feel better.  Thankfully he did have his kidney ultrasound scheduled on Thursday which put my mind at ease.  Everything came back okay.  One kidney is slightly larger than the other, but nothing is amiss.

So it has been officially decided by the doctors that Sammy is being affected by the steroids and other chemo meds in a slightly stranger way than they are used to seeing, but it is all good in that it means the meds are working and our goal is closer to being reached.  How do you tell a young child that?

I didn't have to!  Sammy had an amazing discussion with me about the whole thing.  He began by explaining to me that the bad pain was a sign that the steroids were the 'good guys' because they were kicking the cancers butt.  He understood that he needed to grin and bear the last few cycles, and seemed determined to let the whole thing play out.  He talked in story format terms:  the good guys were the chemo meds, the bad guys were the cancer blasts.  The setting was his body and the main problem was the fact the blasts wanted to take over his blood and leave no room for the heathy cells..the other good guys.  The solution was to keep taking his meds and deal with the pain as it was okay pain....he didn't like it but he knows WHY he has it.  Boy, was I listening to this with pride and wonderment!

So Sammy has turned the whole thing around and created a battleground inside his body where, basically, a video game is going on.  He has learned to handle this in his own, unique way, and has accepted things on his terms.  I have gained strength from this; I have a much more positive attitude than I have had of late...fearing the toll on Sammy was unfair and not what I had in mind for my lovely child (well it still isn't, but I am not looking at it the same way).

Sammy has taught me to be thankful for where we are now.  I should have always been thankful...I actually was at the beginning of the journey...but stress took a hold of me and did some funky stuff!  The nurse at clinic this Thursday was really impressed by Sam's blood counts.  All the doctors are too on a regular basis.  THIS shows he is doing very well as far as treatment goes.  I an SO VERY grateful I am in this place, and I know Sammy shows no signs of losing.

Next time I see Sam limp, cry, or struggle with his hands, I am going to try to reflect on his story:  the good guys are beating up the bad guys and the setting (his body) gets a little battered in the process...but the good guys are winning and the setting will be okay.  Sammy sees a video game....I see a hero.

Control Toxicity in Treatment

We are entering a strange new phase in Sam's treatment.  With all fingers crossed, I can say his treatment is going very well and shows all the signs of being successful,  I am so happy that I am able to positively look towards the future again, in terms of having Sammy with us.  I will not allow myself to relax totally,  incase I jinx the whole thing...I am like that.  

We now needs to make sure the toxicity from the chemo does not impact Sam's future.  His recent results from the neurological test and the impending kidney tests show that toxic chemicals have hurt his body...the price we pay for keeping him alive..so I have to accept them.  Yesterday, in clinic, Dr. L actually reduced the Vincristine to try to help Sam feel less pain and neuropathy.  It may be increased again...don't forget, the main idea is to keep him alive so neuropathy may be a price Sam has to pay.  

I have heard that there are ways to control the neuropathy through diet and exercise.  This is my focus now.  I want to learn all I can about the nutrition and exercise that will give Sam the best chance to run with his friends again. 

Oh, BTW -it is week one - steroids..yeay!!!  Roll on November :)

I Feel Like The Clinic is Home!

The sentence, "I feel like the clinic is home," came out of my son's mouth in the car yesterday as we chatted about this morning's visit for chemo.  I was stunned, but in context, it actually made sense.  We had been planning the Clinic birthday celebration (Sammy turns seven on Tuesday), and he was very excited.  He really wanted to be at the clinic with his wonderful doctors, nurses, and his friend (psychologist), Leslie.  Leslie was bringing donuts for Sam to celebrate, Nana was bringing something sweet for the staff...Sammy just wanted to be there.  He sees the clinic so differently lately.

Accessing  Sam's port is often done while Sam is busy with his DS or watching a movie...or tricking Nana by making her leave the room then telling her no blood would come out....followed by a smiling Sammy holding up the vial of blood that had come out first time!  This is the kid who took four hours to drink down a teaspoon of medicine, was still taking off a band aid as the clinic was closing because it was so traumatic, and screamed the place down if a nurse even came near him, never mind with a large needle that needed to get pushed into his chest!

Sam is the big man in town...confident, aware of what is going on...able to verbalize his thoughts and opinions.  Sammy told the doctors that the past steroid pulse was the worst one ever, as was Easter...he had a rotten time and hated the weekend.  He also said how much he is looking forward to this weekend, we are holding his birthday party on Saturday and Sam will be surrounded by family and friends, and he was particularly looking forward to the extra love and attention!!!

So, Sam is very comfortable at the clinic, he is positively jubilant about his upcoming birthday, and he loves his 'clinic family' very much indeed.

Clinic Today

Today's clinic visit went well.  Sammy was tired from a late night as we had friends over, but he picked up and became his usual goofy self once we were settled in and he was accessed.  Here is a glimpse of our little morning getting chemo.  It is amazing how this no longer phases Sam...he just treats it like a regular part of his life.  I suspect he'll be very glad once it's over though :)

Eating before Chemo!

Getting accessed

Drawing blood

Happy blood came out on the first try (unusual)

Ready to get the chemo

All done!  

LP and Hallucinations

The LP is done and we are in mid-steroid/heavy dose chemo frenzy.  Crying, laughing, angry, sad, angry, crying, mad, hungry, screaming, crying, eating, confused, more crying...and so it continues.  The good news is it lasts for five to six days and then it is over.  The bad news it, LONG TERM MAINTENANCE goes on long term and is rather more ongoing when you are in the middle of it!

The actual day at the clinic was pretty standard: finger prick, blood-pressure, height , weight, temperature check, run through vitals and weekly history, provide new schedule for meds of the cycle, go to back to access port and find NO BLOOD comes out, counts actually COME BACK ON TIME, (not usual), Pentamidine (antibiotics) administered, try for blood again.....

Then we were taken to the Day Hospital across the hallway for the LP.  Sam was cranky at this point as he could not eat.

Leslie came by with the monkey Sammy has been 'taking care of' as part of his therapy..not interested today.  "He's feeling okay and doesn't need anything." was Sam's reply.  

Finally the anesthesiology team came in to take Sam down to the OR.  I had to stress how bad his cold continued to be, and they said they would try the procedure but take extra precautions and stop if they had to.  

Sam walked to the OR with no shirt, just as you see in the picture above...he got many comments about being "Mr. Muscle" etc. but he was unimpressed and fully focussed on the job at hand.  In fact, he was terrified!  I knew this due to our bedtime discussions over the previous few evenings, and the poor guy was now ready to bail!  

As we walked into the OR, Sam held tight onto me and said he couldn't do it this time...he was too scared.  Eventually there was me on the bed with Sam in my arms talking about Japanese food and his big party.  

Sam was calm enough to drift into a twilight state..I was told his eyes were open because he was given a different medicine this time (due to cold) and he was still awake but would not remember a thing.  

I knew this to be true as Jack had the same meds when he has his LP back when he had Meningitis...but I had been allowed to stay with him then and saw how Jack's stress was despite the meds...Jack remembers nothing, however!

I was told I could leave....I wanted to stay so badly...and Nana and I waited in the waiting room.  Within about ten minutes Megan, the Nurse Practitioner, came to tell us it was done and Sam was awake and in recovery.

We went in to see quite a sight!  Dr. G, who had performed the procedure told us Sam was the most delightful child ever!  Agreeing, but not sure why this was said, we went in to find my son tripping his socks off with a medical version of a PCP induced hallucination!

Sammy saw so much going on on the ceiling of the recovery room, we decided he was actually reliving  a Super Mario video game.....occasionally I would need to redirect the action so that the good guys (the stars) were winning against the bad guys (the walls) or else his heart rate went too high!  

Finally Sammy was back in the land of the non-tripping people.  Dr. G explained that Sam had been so nice and friendly when in the OR...and people on the PCP-style meds show their true colors when on it, so he felt Sammy was truly a lovely young boy!  

After and hour of lying down to avoid a headache, we went back to the clinic to try to draw blood so Sam could have his other chemo through the port.  Blood had to be drawn so there is no doubt they are tapped into a vein for the chemo to go into.  Two doses of clot thinning meds later, we had blood and the last of the poison  chemo was given.  

Sam had Methotrexate, Cytarabine  and Hydrochloride intrathecally, and Vincrisitine through his port.  he started his steroids and 6MP doses orally..no wonder the little guy is feeling so bad!  

Questions From a Six Year Old

This afternoon, driving home after Sammy's PT, he asked me a question that astounded me.  He asked,

"Will I ever be able to run fast like I used to?"

I wanted to stop the car and hug my little man, soothe his fears, and promise a total comeback from the debilitating effects of the chemo.  That was not possible.

What I could do, however, was calmly tell Sammy that he should get back to being fast once he finishes chemo.

"But are you sure?" he asked.

"Well, your doctors are some of the best, and they say you should get back to the way you were before..."

"Yes, but will I really?"

My superhero was showing me just how aware he was of the way I answered the questions.  He wanted to hear an outright guarantee, and that was something I could not do.

No one knows if he will totally lose the weak legs and limp.   He may never have full use of his hands...therefore, I cannot confirm that this will definitely happen.

All I could do was reiterate how sure the doctors were that he should get better, and remind Sammy that we expect the best results once he has stopped treatment.

We then went on to discuss the magnitude of the party we will be having once treatment is over.  Expect a BIG bash....and Sammy wants to stay up until midnight.  THAT I can guarantee he'll do!

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?