The Holidays

 Tonight I heard the saddest words..."I wish I was in heaven so I didn't have pain or have to take this medicine any more!"  My heart broke.  Today is the first day off steroids for this cycle and Sammy is suffering so much.  This Christmas week has not been a good one for him.   We are grateful  that Sam was not admitted to hospital, or reacted to the chemo with vomiting, or needing to be in bed all day. But Christmas was not fun for him, he still hasn't opened all his presents and feels too sick to play with the ones he has opened. 

There were good moments...some were awesome...like the hug and kiss between Jack and Sam as they opened gifts from each other.  But things are not the same...the "new normal" is not Holiday friendly!   Jack baked cookies for Santa alone, and stocking pictures were separate as Sam could not stand.  We made the best of it all but even Jack said it was not the same this year, despite getting a gazillion gifts from family, friends and even strangers.   It goes to show that the material things are not what makes Christmas so special!

We had an impromptu visit to the clinic on Monday as Sam had little red pin-sized dots appear under his eye on Saturday and had chest pains on Sunday...both of which were initial symptoms pre-diagnosis.  Sam was furious at having to go to the clinic (numbed on his finger and port) an extra day...it just was not fair!!!!  We felt merely petrified at the idea of relapse.  Blood work and a chest X-ray showed no signs to be concerned about so we left feeling relieved it was just the chemo doing its nasty tricks. 

Just for a laugh, I'm going to list all the other things that went a little awry this holiday:
1. Hannukah with the family cancelled due to snow storm.
2.Trip to Target...elevator stuck.
3. Trip to Target...picked up can of cat food which had burst and rotted..proceeded to stink though the store and finally discovered why I smelled so bad as I unpacked the tin and the juice dripped all over the floor.  Had to disinfect the car, wash everything I was wearing, wash all the new items bought and throw some of it away as it was beyond salvage, then shower!
4. Trip to Target...lost parking ticket and had to pay full price!
5. While at Target, put Wii game at counter for Jack then forgot to pick it up so he didn't get it for Christmas!
6. Bought Jack an iTunes card and can't find it anywhere so he didn't get that either!
8. Didn't notice one of Brian's gifts had fallen out in trunk of car and wondered why he said I didn't get him EVERYTHING on his wish list... it was found after Christmas morning and he was happy!
9. The oven broke on Christmas Eve!!!!!  Had already prepared all the veggies for dinner so they went off and had to be thrown out...Santas cookies were rock hard (the oven worked at 550degrees for a short time).
10.  Supposed to have a British Christmas at our friends house but everyone was too sick (not just Sam).
11.  Cousin Lorie could not come to see us as she was unwell :(
12. And worst of all, my Mummy couldn't come over.

So there it is...and it is only Tuesday!!!

HOWEVER, there is a lot to be thankful for:
1. Sam was not in the hospital overnight.
2. Neighbors helped with the food issues and have been taking good care of us.
3. Nana and Poppa still joined us for Christmas dinner at the Hibachi restaurant.
4. My Mummy had a wonderful neighbor invite her to her house for Christmas so she was not alone.
5. A neighbor threw a cosmetic party to raise money for Sam and gave us gifts and a prayer from her church.
6. Friends pooled together to get me a special bag for the hospital so I am all ready to go...they chose my favorite pattern too!
7.  Sammy's counts were high enough for him to eat hot dogs
8. A class in a school in the Bronx prays daily for Sammy and all the children sent us huge bags stuffed with gifts from Santa for both Jack and Sam to brighten their day!
9. We  got to semi-celebrate Hannukah at Cousin Andrews, and it was wonderful to see Jack and Andrew play together so well.
10. We didn't go broke!

Back at School

So the Z's are all back together at school again.  We take two cars so we have an exit strategy if needed, and we pack enough stuff for a week each day, but we are at least back!  Brian is settling into his school year, meeting his class and working out where everyone is up to in terms of curriculum.  Jack is getting used to sharing my attention each morning, and Sammy is just discovering the wonderful world of Kindergarten.  I am a deranged wreck trying to juggle way too many balls and dropping them fast, but do appreciate the fact things are going so well. 

The thing is, Sam has a lot of needs and it is hard to do everything for him and be in charge of a classroom.  Mornings are rough, I usually don't get to visit the bathroom anymore or top up my coffee before beginning the lessons.  Instead, I'm dropping off the boys (cajoling Jack to get himself ready to go outside or get to the auditorium to meet his class on time), then get Sam , who takes a long time to walk anywhere, particularly with lots of stairs, down to KP in the basement level (I'm at the top)! We go through the whole drop off routine:  coat on hook, into classroom to unpack snack, lunch and folder, then back to hook for bag, then back to classroom to hug, then back to classroom for more hugs, them back to classroom for a quick reassurance with the crying, then...finally up to my room where 20 fifth graders are unpacking and getting ready with one of the amazing staff helping me by keeping an eye on them.  The day begins...I am not as ready as I used to be!  Thank goodness I know the grade level and the children so well! 

There are phone calls from the teachers to let me know how Sam is doing.  Usually well.  We have had one day where he spent almost all of it on his mat resting as he was just plain pooped!  Other times, I hear how he was joining in from his mat, or singing in music, or painting a beautiful picture in art, or having fun with Legos.  Much more normal things.

Yet it is not normal and won't be for a while....Sam cannot sit on the floor for long; it makes his neuropathy kick in with a lot of pain in his legs; he has to have everything sanitized including a mat at the lunch table; he sits and watches PE; he needs either Brian or I to be his monitor at recess so he can try to play on the playground, and he cannot eat the myriad cupcakes that come in to celebrate birthdays.  We have a stash of things he can eat, but he knows he is missing out.

Some good, some not so great, the result is our boy is back and it is WONDERFUL!  I wish I could find more happiness in it, but I am saddened by his wobbly legs trying to keep up with the class and constant "no's" to things the other kids do.

BUT, we are so lucky to be able to have Sam and Jack in the same school so we can take care of the situation and know everything is as it needs to be.  We try to keep to the rules regarding keeping Sam safe, and bend them when we can to give him as much of a normal experience as possible.  The best was yesterday when KP made their Gingerbread Houses.  I had Brian and then a friend cover my class so I could pop down and help Sam decorate with vanilla icing and all sorts of candy.  We had so much fun, even licking fingers (Yummy but against the rules)!  We also had the holiday sing-a-long; a long-standing tradition which I was so worried Sam would miss.  Yet I was able to sit with both my boys, alternating turns, and we sang holiday songs, Santa hats on, at full belt.  School is not easy but this last couple of days, Jack's International food-tasting, the Polar Express party, Sam's Candy Houses and, of course, the sing-a-long, made me smile and find a few moments of normalcy within the madness!

Some Details

While I generally like to write about thoughts, events and emotions, I feel I know enough now to fill in the gaps about the Leukemia Sam has. The term leukemia refers to cancers of the white blood cells, which are also referred to as leukocytes or WBCs. When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. These abnormal white cells crowd the bone marrow and flood the bloodstream, but they cannot perform their proper role of protecting the body against disease because they are defective. There a different classifications for Leukemia. About 85% of childhood ALL (Acute Lymphoblastic Leukemia) have B-cell ALL.

Sam, being a Zweig, has to go for the rarer form. About 15% to 18% of children with ALL have T-cell ALL. This type of leukemia affects boys more than girls and generally affects older children more than does B-cell ALL. It often causes an enlarged thymus (which can sometimes cause breathing problems) and may spread to the cerebrospinal fluid (the fluid that surrounds the brain and spinal cord) early in the course of the disease. Luckily, although Sam had a huge mass of cells filling his chest, he did not have CNS leukemia. Phew! The mass was blasted away with chemo and should not come back. The cancer may appear in the CNS if Sam has a relapse. (Which he absolutely will not!)

How well a leukemia responds to the initial (induction) treatment has an effect on long-term prognosis.

A remission (complete remission) is usually defined as having no evidence of disease after the 4-6 weeks of induction treatment. This means the bone marrow contains fewer than 5% blast cells, the blood cell counts are within normal limits, and there are no signs or symptoms of the disease. A molecular complete remission means there is no evidence of leukemia cells in the bone marrow, even when using very sensitive lab tests, such as PCR. 

Minimal residual disease is a term used after treatment when leukemia cells can't be found in the bone marrow using standard lab tests (such as looking at cells under a microscope), but more sensitive tests (such as flow cytometry or PCR) find evidence that leukemia cells remain in the bone marrow.  Sam was given this test and it came back at 2% - considered full remission. 

Active disease means that either there is evidence that the leukemia is still present during treatment or that the disease has relapsed (come back) after treatment. For a patient to be in relapse, they must have more than 5% blast cells present in the bone marrow.

Children with ALL who have especially high WBC counts (greater than 50,000 cells per cubic millimeter) when they are diagnosed are classified as high risk and need more intensive treatment. Sam had a count of 350,000 cells so he is very much in the high risk group. he responded very well to treatment, however, so his prognosis is as good as for lower risk kids. Now the doctors have worked out how to treat each type and risk group, there is a much small gap.

We take one day at a time and also study the counts given to us at each clinic visit.  The most important data for us lay-people includes the hemoglobin, WBD, platelets, ANC (Absolute Neutrophil Count) and the Mono Count.   We received and sometimes do not receive these counts at each visit or hospital stay.  There are gaps which will be filed as I locate other printouts and include them on the chart I am now using to record it all.  I am sure Dr. Cole  will explain to me why there is such a drop in some areas when we are now in a less aggressive part of Sam's treatment. 

School is now fine even when Sam has an ANC of zero...meaning he has no immune system...but he cannot eat strawberries or grapes!!!!!!  Sam needs to have an APC count (ANC plus Mono count) of 1100 or more to begin each cycle of chemo...so far he has been delayed once.   We want to start tracking his counts to look for patterns as he goes through each cycle so we can predict when he will be neutropenic and when he is able to be less cautious and eat more normally etc.  We hope to work it all out before he is officially declared cancer free and a long term survivor...if not, we'll be happy with the knowledge that we made it despite ourselves :)

If this makes no sense at all...there is an excellent website linked to this post to help you understand it all.  I am sure I will read this post one day and laugh at my attempt to explain it....I'm far better at the emotional stuff :)

http://www.leukemia-lymphoma.org/all_page?item_id=7026

13-Nov

17-Nov

27-Nov

3-Dec

10-Dec

17-Dec

Sammys school presentation

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School

Sammy is officially back at school!  We had the team from CHAM come in to talk to the Kindergartners about Sam and Leukemia.  It was all totally overwhelming for him but he also glowed with pride.  You see we shared his book, the one Nana Haze started and then I put together on Shuttefly.  It takes a look at Sam's story so far and his visits to the hospital.  It explains what he has and the procedures he has had to have...all at a five year old level!

Sam stayed in school that morning but was not entirely sure about it all.  He was the star...people from CHAM were there....all eyes were on him... and I think he felt different.  The next day he began in class just like any other child would.  Ms. Markram was there (who had started the year as Mrs. Polsky was out on maternity leave), and she quickly helped Sam find his table and organized a place for him to rest, mat and all should he need it.  Brian was on call in the teacher's room and I kept getting calls from Mrs. Martin, the other Kindergarten teacher, updating me on all she could see through the door.  "Sam is happily chatting to his table friends,"... "Sam is surrounded by girls all chattering away and they all look very happy,"..."Sam is lying on his mat with his friends around him so he is still part of the activity!"  By lunch, Sam was exhausted but actually disappointed when told it was a half day for students as there were parent/teacher conferences all afternoon.

The next day was just me having more parent/teacher conferences and then Friday, Sammy could go back to school and his class, KP...he was going to try for a full day this time!  The day was wonderful...more calls from Mrs. Martin...Brian filmed Sam in PE actually joining in on scooters, dashing around the gym on his belly and loving every minute of it!  Brian, Sam and I had lunch together but then Sam wanted to join his friends as they watched a show...it was too cold to go outside for recess.  I joined him towards the end of recess and once it was time to go back to class, Sam tried to stand up..his legs were having non of it having been used and abused way too much already that day!  I carried him upstairs and Brian sat with him as he had some quiet time in Ms. Hoyne's 1st grade room (the kids were at a special class).  After a brief rest, Sam was back down with KP and had a great afternoon.  Tired but glowing, he told me, "Boy, Kindergarten is quite a challenge..." I responded that he was more than up to it and would  settle into the swing of things and pass with flying colors :)  This kid can do ANYTHING!!!!!!

Santa

Feeling weak and wobbly, we still headed out as promised to see the "Big Man" himself.  Jack had made cards for Santa and signed them from both himself and Sam.  I bought the big photo package feeling this Christmas had to be 'the best ever". 

As I opened the frame with last year's Santa picture, ready to place this new one in front, I noticed just how much Sam's looks have changed.  It saddened me so much to see the moon face, pale complexion, balding head and dull, painful eyes.  This was my little dynamo as a shadow of himself. 

Then I remembered that Peter was joining us tomorrow at school as we introduce Sam (the new Leukie Sam) to the class he saw for three short days at the beginning of September.  We are asking Perter to join us for many reasons but one is that he is the epitome of a healthy, handsome young man who is living life to the full.  He is what my Sammy will once again become. " Keep moving forward!" as Peter would say. 

Steroids

Sam is not a happy bunny on steroids.  He is really being hit hard and the irrational food cravings are driving both him and us insane.  The menu today in order of appearance:  toast and cream cheese, cereal, fried rice (wanted ribs with it), chicken fingers, more fried rice, chicken fingers and fries, rice pilaf, more cereal toast and cream cheese, ice cream, and  yogurt.  Now this took up most of the day. When Sam knows he wants something nothing else will do, except that we didn't have it so I actually ran out for the fried rice ingredients.... and then back out for rib sauce ingredients to try to make ribs like they do at the local Chinese...they did not have said ingredients so we did rice pilaf instead...okay, but not the same...."more ribs please, oh yea you don't have them but please PROMISE me you will have them for me tomorrow"...running out to see if we can get something as we had an idea ...no, okay back to more rice pilaf, toast, ice cream, and finally...yogurt!

Sam also looks like a ghost with red bags under his eyes and his body just 'aint doin' what he wants it to do.  He didn't even want to play with the Wii or DS much today.  Feeling I needed to do something to distract him, I came up with the aquarium.  He seemed slightly interested so off we went.  Jack stayed home to play with M.  Well, I can truly say it was the fasted visit ever!  We walked in (Sam in the stroller), and he just pointed me through the entire aquarium without getting out of the stroller or looking at the fish!!!  He did the same in the gift shop and only brightened up after pointing to the cafe and seeing my defeated agreement in letting him get something to eat.  Chicken fingers and french fries...which he left most of. Then we went home.  Total time for the trip - 1 hour including travel time :(

The thing is, when the steroids get Sam so ravenous,  it is so hard to deny him food.  It is very frustrating, though, when he changes his mind or leaves most of it.  Patience is needed and we know it is just a phase. 

Sam did get his first star for getting his medicine done in less than half an hour.  It was mixed with coke - sugar rush yeah!!!!  It actually took slightly longer but we are going for the encouragement factor..what the heck...I'll try anything.  Only 70 weeks of this to go (if we don't get delays), what joy!  It will be interesting to see how our ribs go over tomorrow!!!!!

Z Family

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Dr. C

When you are a mother going our of her mind with worry, there is nothing better than a doctor who 'gets you'. I really think Dr. C, our leading doctor and head honcho over everyone else we see, is so great. Here is his reply, short of a few lines basically apologizing for the confusion.

1.  I'm with you. Sam should be in school, even when his ANC is zero. Yes, he may catch a virus, but that's not particularly dangerous to him. The infections that are dangerous come from inside (intestines) and from the

skin. Avoiding school does nothing to decrease that risk. The benefits of being in school (socially and educationally) far outweigh the risk of a virus. Yes, steroids lead to an increase in the neutrophil count. But,

yes, it doesn't really reflect a change in his immune status.

2. I just recalculated his dose and, yes, 7.5 mg twice a day is correct. There is a substantial increase in the pulse steroid dose when starting consolidation 2, for kids who had T-lineage ALL. Yes, there is an increased

risk of side effects, but it's balanced by an increased anti-leukemia effect. The only permanent side effects of steroids are their effects on bone strength, and I'm not worried about that one for Sam, as that particular side effect is very rare in kids under 10. At Sam's age, I worry about the effects of steroids on his mood. For what it's worth, it's "only" 5 days each cycle...

I feel bad that I haven't seen you much in the last few weeks. When is Sam's next appointment? I'll make a point of being there so we can talk more in person.

I feel so much happier now, I really trust he knows what he is doing (great success in general) so will trust this cycle to be as it should be. Of course, now Sam is definitely being affected by the chemo yesterday...grouchy, hungry and tired. He has red circles under his eyes and pale skin. The cycle begins with chemo into his port, including Vincristine which gives him neuropathy...it is not going to be a fun weekend. The good news is we know he picks up after the first half of the 3 week cycle. Now trying meds in coke...took an hour with lots of sadness and upset but Sam said it was a bit better. Once day at a time...

Post Clinic Questions

We all enjoyed an amazing Thanksgiving with family and friends. Sam was the star of the show to an extent but our new baby cousin was introduced and Jack, just by being himself, won over the hearts of the crowd. Cousin A was also there with his two year old ways...mostly providing adorable entertainment. It was a day of family and children being children....normal.
Sam did not get his second cycle of chemo last week as his blood counts were too low. Now the doctors look at his ANC which was 500 and his Mono count which was 200. Together they only made a count of 700 - much too low for treatment. Thus, Sam felt more like his old self...I loved it.

Today was clinic day and the counts came back high enough for chemo to resume. Sam did well with the finger prick, accessing the port with the needle and having the intramuscular injection (ouch!) He cries but recovers so much more quickly. When asked which he hated the most, Sam replied, "The medicine..I hate it and I am so scared of throwing up." Amazing what creates the biggest roadblocks for children. It is such a great fear, I am not sure we are ever going to get him to speed up...school will be tough.
Brian was, as usual, excellent in forwarding my questions and returning with answers. I still (being me) had the need to clarify some things. I called but did not get a full answer so below is my email to the "big man" Dr. Cole who is lovely but very hard to get hold of.

Hello Dr. Cole,
I hope you don't mind me emailing you a couple of questions, I know you are very busy and my phone message may not have got to you.

1. I was told by Dr. Gill last week to keep Sam out of school if his ANC was less than 500. Today Brian was told Sam can go to school with an ANC of 400. I am very confused by the conflicting information we are receiving each time we see different doctors. I know you feel school is the way to go, but why is there a 500 count benchmark? It is also the season of sickness and I am worried. Will the steroids drive his ANC up a bit by Tuesday? If so, will it be false numbers so his immune system will still be vulnerable.

2. I looked over the new schedule for meds this cycle and noticed that Sam is going from 1.5mg of dexamethasone 2x daily all the way up to 7.5mg 2x daily. We couldn't actually find a pharmacy that could fill the prescription until one just created 3 bottles of different mg's which added up to 7.5. Is there a reason Sam had had to make this large leap? We were told he was going to be on lower doses now and yet this is so much higher. This also increases chance of side effects I am sure.

So, rather than do the nutty mom research, I am asking you to clarify. I appreciate you letting me know...I am sure there is a reason and that also worries me....it's a big change. Brian is sure you will calm me down.
I hope you had a wonderful Thanksgiving. We did, taking your advice and letting Sam just go and enjoy himself...many smiles all round. In fact I was the one who caught a virus!
Regards,
Katy Zweig

I will let you know the response to this. We're going with the plan for school as Sam may get higher counts due to the steroids...especially at this high dose. My very good friend and mother of a Leukemia survivor constantly reminds me to check everything. She is my mentor and someone I don't think I could get through this without. We have literally gone though the exact same thing with the same T-cell ALL and the same hospital and doctors.

Cuddles and Turkey

Today Sam did not have to take any medicine...hooray!!! He went to the bookstore with Brian and built his Spongebob Lego house. When Jack and I got back from school, he asked for homework. Mrs. Polsky, his Kindergarten teacher had just given me the "How to cook a turkey" page for Sam to complete. This is a Kindergarten tradition where all the Kindergartners dictate their methods of cooking a turkey and then draw a picture. The page is then include in a book for the families.

Something happened tonight that hasn't happened in a long time. jack and Sam snuggled together with me on the couch. Usually we keep the boys apart but Sam was upset as I insisted I wash his hands (little things still set him off), and I lay on the couch with him to cuddle and make better. Jack joined us at our feet... he is so careful to keep Sam safe, but we found ourselves all snuggled together in a heap, holding hands and Jack gave Sam a kiss. While my mummy-senses told me to move Jack away, my heart told me to let them be. They needed each other and that was more important. I just wish I could have taken a picture.

Medicine

Still working on the morning dose..2 hours into it. We have tried doing the dropper into the back of the mouth but Sam just throws up! Any suggestions are welcome....back to trying..Grrrr!!!!

The Good, the Bad and the Ugly!

Now that radiation is over, there is a definite improvement in Sammy. Brian messaged me at school with reports of him laughing, joking and playing in the garden. There have even been photos emailed to me to show how great things are - Brian knows how to cheer me up! Sam has been more upbeat, chattering away to me when I get home from work and making plans for the weekend including: having breakfast together, working on his "Make a Wish" planning book (he has decided already he wants to go to Disney World), and trading in his old DS and Wii games to get Atlantis Squarepants for the Wii. It is so good to see him like this!

The bad news is the list of the chemo and meds for the new phase. Immediately following the completion of the CNS Phase, Sam began Consolidation II. This phase lasts at least 70 weeks and is scheduled in three week cycles. Each cycle consists of the following:
Day One
Vincristine IV push
Dexarazoxane - IV
Doxorubicin - IV

Oral Doses each day
Dexamethasone (steroids)two times a day for five days
6-Mercaptopurine nightly dose for fourteen days
Pepsid - at least 6 days two times a day
Bactrim - antibiotic every Friday, Saturday and Sunday for the rest of the treatment (2.5 years)
Colace, Senna, Tylenol and Codine as needed throughout

Weekly
Methotrexate IV
Asparaginase - Bloody awful intramuscular shot for 30 weeks!!!!!
Happy Juice - we managed to get the doctors to give Sam some of this before the Asparaginese...they said it would help :0

In 18 weeks and then every 9 weeks for 6 doses:
Intrathecal Methotrxate, Cytarabine, and Hydrocortisone
This means LPs for this procedure and being put out.

We have been told that Sam will get used to the chemo and will actually be able to go back to school soon! I am in mild panic as it is the flu season and H1N1 is going about; people are dropping like flies. The doctors are convinced it is still better for Sam to go back to school as it helps patients psychologically...it must help to see all those around you also feeling sick!!!!! Apparently, Sam's own bacteria is more dangerous to him when his counts are low than any sneezy, coughing child can be. I can't help asking the question, "Even though the germs can't harm Sam in terms of his cancer, isn't having the flu on top of cancer just too much?" Yet I know I will brace myself and let my child go back, Clorox wipes and Purel strapped to my belt each day...tune in for that episode:)

I am ashamed to report that I finally snapped and let loose my wrath on my husband, eldest son, and the frail, balding cancer patient I was taking care of. Basically, I lost the plot and became my own worst nightmare! Sam has been regressing in terms of taking his oral meds. He still insists on having it all with chocolate syrup and sips at a spoon which can take a while. Over the last few days, it has taken much longer...four hours one morning!!!! Yesterday I sat for two hours, finally handing it over to Brian as we often do when we are about to boil over. But this morning was the final straw. Sam was very grumpy and fussing over every little drop I tried to get near his mouth. Brian was out shopping (I love how much he does), so I couldn't pass to him when needed. Jack was bored, resulting in many questions and interactions requiring I "think" for him and help him come up with something to do...I had absolutely refused to let him play electronic games. Anyway, the result was that my patience was being tested, and we were pushing three hours with the medication and not nearly finished. Each time I suggested Sammy try to slurp more or open wider, he flew into histrionics which led to him almost vomiting. Sam must have an emotional stomach as he has thrown up when upset and even when he laughs too hard! So I was trying to accommodate the mental anguish of my son while also feeling enough was enough and he needed to suck it up (or down) and get the spoon finished!!!!

Finally, despite all my will not to, I slammed the computer shut (Sam was looking at movies on it to try to distract his attention), threw it on the couch across the table and screamed something along the lines of, "I am so sick of this..." I then shut myself up in the office to cool down. Silence!

Felling like the biggest failure in history, I finally went back in and sat with Sam and just said sorry, put my arms around him and we both cried. I was not strong, I was not hiding it from my son, and I was not able to try to finish the medicine for fear of getting all crazy again. So I gave Sam a bath and let Jack play at the bathroom door so he was not alone.

After Brian returned, I asked him to finish the medicine off which he did. Unfortunately, as I was upstairs, I heard screams and the sound of vomiting. Brian was at Sam's side trying to comfort him and Sam was distraught. I guess my psychosis hadn't quite dissipated and I immediately hissed to Brian, "I told you not to rush him!!!" Nothing like turning your anger on the ones you love...not my proudest moment.

The ugliness of today will stay with me for a while. I could not control how I felt and could not hide it. Sharing this is embarrassing but I also feel it is part of our story and should be included. We are having good days and bad days and downright ugly days, but they are our days and we will look back at them one day and smile in the knowledge that we got though them...somehow.

Hero

Today was Sammy's last day of radiation. He had eight days of the lowest dose possible...the doctors don't think he will get major long-term effects. I'm nervous anyway,that's just me, but once again find myself thinking we are lucky.

Sam brought his mask home. It really freaked me out seeing how tight and smothering it is. I can't believe the technicians thought he could endure twenty minute stretches pinned to a table in it! I don't think I would have made it.

Sam made quite a few friends out of the anesthesiology team as he was put under each time he wore the mask. Dr. Singer loved seeing what interesting things Sam would come out with on his happy juice prior to going to sleep. Sam also had certain requests which were always honored by the team such as pulling all the stickies off him before he woke up. Dr. Singer was surprised by how many times this would wake him up...Sammy had a very high tolerance level before the medicine actually knocked him out.

Brian told me how the nurses clapped when Sam arrived back from Radiology as he was done with the treatment. They treated him like a superstar. He was given a special certificate and was beaming with pride. When Jack and I got home, we presented him with a trophy engraved to him from Mom, Dad and Jack. Sammy's face truly lit up and he thanked us all with such genuine glee...I hope he realizes what a hero he is to us.

Strength

Good day at the clinic because Sam was not screaming about eating...it is the steroids...I can't wait until they are done. Radiation was quick, the anesthesiologist was anxious to get back into the room so I assume there was a moment of Sam not breathing, but all was well (I'm calm about it as not breathing is a minor bump these days)!!! At home Sam asked for a nap and was very shaky...radiation is taking its toll. Vincristine is also causing major weakness and pain...but Sam is really handling it well. He did start singing along to a song, "I hate being sick"...and cried a little in bed with me. I think Sam, Brian and I take it in turns to loose it...really! One of us cries and the other two are amazingly strong...lucky :)

Tomorrow Brian will take Sam to the clinic for blood work, and then he goes for radiation and the LP. Sam is terrified of having the port taken out. I told him I would put the numbing cream over the accessed port so he doesn't feel it as much. I am not sure he is fully convinced, but it might work.

Sam has talked a great deal about the length of his illness. He now understands that his port will be in for about two years..."I'll be seven when it comes out!" He is getting a little exasperated about having to go to the clinic so much, he has been every day this week and will do the same next week. Thankfully he is a very clever little guy and tells the nurses and doctors, Dr. Singer (the head of the ICU) included, that he is feeling so bad because of the medicine, not the leukemia, as he doesn't have that anymore.

Sam talks in terms of months and years now. "Will I be able to have my birthday out of the hospital?" or "Can I play golf again?" or "Will I still have to visit the clinic next year and if so, how can I go to Florida?" The hardest is,"If I don't have leukemia anymore, why do I have to keep taking the medicine?" Tonight I finally told him it was to make sure the cancer doesn't come back. He took it calmly, with acceptance. He is the strongest person I have ever met.

Chemo, Cancellelations, and Cake!

November 6th, traditionally my birthday, but today we headed off to begin CNS therapy and radiation. Sam and I arrived at Radiology at 7am, Brian dropped Jack off at school and called in to see his class and say hello to friends.

Sam was taken almost immediately to the room for his radiation. He saw the table that he would lie on, the same one he had played with a on Wednesday, raising and lowering Bob, the technician, after having his mask fitted. Things went well until the mask was placed and bolted to the table...Sammy freaked out and I could see why. Although it was a plastic mesh with plenty of holes for breathing, it was so tight and restrictive, I would have panicked too. To make things worse, we had been told he would be in the mask for no more than two minutes, we discovered it would actually be 20 minutes as photographs were needed of his brain. This was too much for him to handle and we had to take the mask back off. After a ten minute break, we tried again..no luck...and I asked if something could be done to ease his anxiety...like a dose of the happy stuff.

The Radiology department contacted the clinic as we were expected up there for Sam's Chemo and lumbar puncture (henceforth referred to as LP). We were met by two doctors from Anesthesiology who had arranged for Sam to be 'out' for the radiation and the LP at the same time. In the meantime, we were to go to the clinic to get the chemo. We quickly visited the 4th floor for the finger prick - glad I thought to numb it just in case - and then waited for the doctor to see us at the clinic. I was pleased to see Dr. Roth.

I have a tendency to look things up on the internet...not on regular, unreliable sites, but I look at actual studies with validity. I usually have many questions after my research and write them all down for the doctors to answer. I do this because I am not usually able to go to the visits and have to rely on Brian relaying my thoughts and concerns. Dr. Roth was polite and responded, but really wanted me to stop looking online and scaring myself. Brian said this too, and I later found out he had spoken to a close family friend who happens to be a doctor at Sloan-Kettering (and a forceful presence when she wants to be), and she blasted me via email for it too! I promised to try my best to stop!

During our doctor consult with Dr. Roth, an emergency occurred in one of the other rooms of the clinic. It was very serious as the whole staff seemed thrown the rest of the day. Remember, these are doctors who deal with childhood cancer, so if they are thrown, it must be bad! I heard Dr. Roth tell everyone to keep the door closed as Sam went through..scary!

A while later, we were ensconced in one of the booths in the clinic. Sam was hooked up...being accessed was painful today, and he was in a bad mood. Brian arrived and we settled into the usual routine of hanging around and waiting for the chemo. Sam was given his chemo; Doxorubicin and Dexrazoxane, into his port. I had been very surprised when I discovered that the Dexrazoxane had only just arrived at the hospital as they had run out! Imagine me putting up the fight of my life had they tried to give the Doxorubicin without it...they were lucky ;)

The IV machine beeped to let us know the doses were complete. We cold now get ready for the radiation and LP. Or not! As the nurse went to unplug Sam's tubing, she noticed he was soaking wet! He was actually covered in all the chemo meds he had been supposedly receiving though the tubes. I kept my cool as I tried to establish,  a) the reason for this, and b) how we would know how much Sam had received and how to work out how much was still needed...I did not want too much or too little being given. Finally the nurse told me she had just not connected the tubing so he would get the full dose again after it had been ordered and delivered from the pharmacy...more waiting...Grrr! Now you see why I like to 'helicopter-mom' everything and do research...mistakes are made all the time.

The day continued with more mistakes: I also noticed our roadmap was wrong.  The roadmap at this point is basically a list of all the meds with days, dates, and amounts in an Excel spreadsheet to help us keep track of when and how much of each med is given. All the dates were mixed up..it was Friday but the day said Tuesday. The doses were also wrong...but the doctor himself caught that...Hmm.  The morning emergency had certainly thrown everyone...I was really on my toes by now.

Then we were canceled! The radiation machine was broken so we put off the radiation start date until the next Monday. To be honest, I was glad and just wanted to get home safely. The way things were going, I was glad Sam was not facing lazer-beams and zapping from a monstrous machine giving doses of radiation into his brain...call me protective!

We still had the LP which went to plan. Of course, Brian ran to get something to eat just before they came to get us and missed Sam going under.  But I was really happy to report that Sam walked into the room where he gets put to sleep, playing and joking with the doctors and anesthesiologists. They loved how he was so eager to go to sleep, and he announced it was so much better than knowing what was going on. Dr. Levy was there to perform the LP and he couldn't believe how far Sam had come.

After a full day of mishaps, I was relieved to spend the evening celebrating with my boys. Nana and Poppa brought Jack up from school about 5:30 and we gathered to open cards and prezzies...lovely! Then Brian, Jack, Sam and I ate pizza, (what else!?!?) and they sang Happy Birthday as I blew out the candles on my yummy ice cream cake :)

Clinic Visit

Sammy went to the clinic for his check up today. He also had his mask made for the radiation treatment. He had to let them put hot plastic over his face so they could mold it to his features. It will be used to pin him down for the actual radiation. Good news...they will use the least amount possible so effects should be minimal. Here are the questions I had typed up for the doctors. The outline of the answers Brian was given are in bold.

Questions – Samuel Zweig November 3, 2009


1. MRD – are the results back? Yes, he has traces of leukemia but it is not a sign of anything for T-Call ALL. Nothing to worry about…he is in full remission.
2. Blood counts including ANC? Excellent – not neutropenic.
3. Can Sam eat at restaurant and eat cake on Friday? Yes.
4. School: When do kids generally begin to go back? He can go back in January and even December if we are comfortable.
5. Can my mother come to visit? See list of ailments attached: Yes.
6. Are we doing radiation? Why is he in need if no cells found initially in spinal fluid? Must be done to prevent relapse in this type of leukemia.
7. Testicles….another place ALL comes back so are they being targeted? Sterile outcome? Too young to become sterile…he will be checked periodically.
8. Should we expect lethargy and no eating again? No way to say when but may intermittently…expect it. Also radiation has late effects (lethargy).
9. PEG Asparaginase or E.coli Asparaginase? Can he have EMLA cream on leg for intramuscular option if selected for that? Sam was randomized for the E.coli Asparaginase ….20 weeks of large needles into his leg muscle…can’t wait! EMLA cream won’t really help!!!!
10. One of these meds caused the pain in his back, legs, chest and stomach…hard to identify which one…any advice to help him though it? It may or may not happen again, no way to predict but it becomes less likely.
11. Dexamethasone - potential side effects are endless and:

"Now that we have demonstrated that dexamethasone is so disruptive of sleep and causes profound fatigue in children with ALL, we will study ways to reduce these troublesome side effects, while still allowing the patients to get full benefit of the treatment," said Ching-Hon Pui, M.D., chair of the St. Jude Department of Oncology and the paper's senior author. "This would help us continue to improve the already high quality of care we provide to children with ALL."
This study was with large doses…lots of children do well on it (hope Sam is one of them)!

12. Is Dexrazoxane being given to reduce the heart problems that some survivors develop years after being treated with doxorubicin? ( as per the Dana Farber Study)
“The use of Doxorubicin in children with ALL makes it a highly curable disease, but because the chemotherapy kills heart muscle cells as a side effect, survivors can experience an improperly beating left ventricle, congestive heart failure, or arrhythmias that can cause sudden death. One study estimated that, even 25 years after they were treated, their risk of dying from heart disease is more than eight times normal.”

Lowest dose of Docorubicin will be given which has not proved to cause problems. The problem is Sam’s roadmap does not include the Dexrazoxane so I need to chase that up.

The Next Phase

Tomorrow Sam goes to the clinic to get his blood test and have a check up. The next phase will be discussed. Hopefully the blood work will show all is going to plan and the next phase can begin on Friday as planned. I'm celebrating turning 30 something that day while my little boy will begin the following:

CNS Therapy Phase

This phase is aimed at the central nervous system and lasts three weeks. It is expected that Sam will be an outpatient unless complication occur. We will be taking his temperature with a continued sense of dread! Sam will be given chemo intrathecally (into the spinal fluid) with four spinal taps over a two week period. Chemo will also be given by mouth, in the vein (his port) and into the muscle. Radiation therapy will also be given...I can't even get into that right now!

Here are the drugs for this phase:

*Methotrexate, intrathecal (spinal) twice weekly for 4 doses
*Cytarabine, intrathecal twice weekly for 4 doses
*Hydrocortisone, intrathecal twice weekly for 4 doses
*Vincrisine, In the vein Day 1
*Doxorubicin, In the vein Day 1
*6-Mercaptopurine, by mouth days 1-14 x2
*Dexamethasone, by mouth days 1-5 x2
*Asparaginase - may be into the muscle every week for 30 weeks or into the vein every other week for 30 weeks - this will depend on the randomized selection for the study he is on.

The use of doxorubicin in children with ALL makes it a highly curable disease, but because the chemotherapy kills heart muscle cells as a side effect, survivors can experience an improperly beating left ventricle, congestive heart failure, or arrhythmias that can cause sudden death. One study estimated that, even 25 years after they were treated, their risk of dying from heart disease is more than eight times normal. Sam will also be given Dexrazoxane which reduces the effects of the doxorubicin a little. Fingers crossed he is one of the lucky ones.

The radiation is designed to prevent any leukemia from coming back to the brain. The regular chemo is also preventative...talk about aggressive measures! It is hard looking at Sammy, who is quite the active chatterbox again, knowing he is about to get all this done to him. I know it is going to knock him sideways and there is nothing I can do about it....we are fighting cancer, (notice the lower case..I have no respect for it) and we intend to win.

Halloween

Children are amazing! Sammy was so worried about not making it for Halloween this year...fearing being in the hospital instead of out collecting candy. Each night as I took his temperature he would say out aloud, "Please be okay, I want to stay at home tonight." I would see his body heave a huge sigh of relief each time it read as normal.

Halloween finally came and Sam donned his costume, eager to get down to our neighbors house for the pre-party. He had decided he wanted to scare everyone and selected the Scream costume with blood that is pumped to run down the face...lovely! Our plan was for him to wear it over himself and the stroller we were inevitably going to have to use.

We couldn't have been more surprised by him. He walked to the party and happily joined the other children playing in the garden (Jack, dressed as Tinkerbell, was already there). He was delighted by the reaction he got from both children and adults alike...sheer mock terror!!! I was the recipient of what was going through their minds the most...how great it was to see him out. I was beaming with smiles, but underneath the Snow White costume (yup, I kept my promise to Sam), I was a wreck. I was the mom chasing the kid all over, helping him up and down stairs (he somehow needed to use them more times than anyone else), making sure he was not too hot/cold, keeping his pizza and water away form anyone else so it was germ free (or as near to as possible), and basically being the most paranoid helicopter parent imaginable. Well....he was still a cancer patient in the middle of a neutropenic stage and I have always been somewhat of a worry-wort, so I have an excuse!

One thing I did try to do was keep my paranoia from letting Sam just enjoy himself. With all our care, Brian and I still had the outlook: what will be, will be, just let him have fun tonight And did he have fun! No stroller at all :)

We stayed at our neighbors house for over an hour before a huge pack of us headed out to trick-or-treat. We covered a large part of the neighborhood and Sam walked, and even ran, all the way. He wanted desperately to keep up with Jack and his friend M. He was doing a great job but some special consideration was given by Jack and M who both waited for Sam several times so he wasn't left out. This amazed me as they were so eager to run on to more candy...they are both very special and kind young boys.

Bags filled with enough candy for the year, we all hurried to our neighbors house once more as the heavens opened up just as we were heading back anyway...phew! Sam then joined the children down in the basement, playing and laughing...having such a fun time. Brian stayed down there...you know we needed to hover...and all went very well indeed.

Looking back, I am so proud of all the children that night. They all saw Sam without his hat on...his hair thin and whispy shouting out...I am sick! They all showed patience and care for him, and no one made him feel self-conscious or concerned in any way. Once again, I can look at our lot and feel lucky...a great set of friends, an amazing family, and Sammy lasting the whole night without falling sick or missing out at all.

Shoes

Here is a poem I just read on a cancer website:
SHOES
I am wearing a pair of shoes.
They are ugly shoes.Uncomfortable shoes.I
hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author Unknown

Amazing!

Today was the best day since diagnosis. Brian had messaged me during the day to tell me Sammy was eating and more lively. I was delighted to hear he had eaten a waffle and then asked for another one! When Jack and I came home, it was like seeing my old Sam back again, just with much thinner hair :)

Sam was initially asleep when we arrive back but it was late due to a staff meeting so Brian woke him up to have his medicine. Brian was concerned that Sam's mood would be bad after the long nap, but was very surprised when Sam , covering his face with his blanket, threw it off to reveal he was pulling a funny face and waving his hands at his ears! He was having fun!

The rest of the evening consisted of Sam, (Jack played at M's (best friend)), getting down to some time with Mummy, putting more thank you cards in envelopes, looking online for his Christmas wish list, walking back and forth around the house doing various 'clean ups' and helping Mummy, and even eating a FULL bowel of pasta and tomato sauce followed by a big dollop of icecream!!!!! I was the happiest I have been in ages.

Sam helped to clear the table, then showed me his sticker book he created with Spongebob stickers. Each page had the Spongebob characters doing something that told a story...it was very clever. Sam then retold his story as his brother came and sat with us to listen.

Teeth brushing was fairly easy, but Sam did mention sores in his mouth, so we were extra careful. Then we had to clean up all the food that was left from diner on his cheeks and chin...good to see again. Jack, during the toothbrushing, was reading his book from the library aloud to us...it was all very "family together"!

Upstairs, I had snuggle time with Sam! The first in over a week. Although I have been too sick to go close, I always offered to stay in the other bed and talk, but Sam always said he was too tired and wanted to be left alone. Tonight, he was a veritable chatterbox, as I lay beside him soaking in every moment. He told me all about the game he invented, "Ghost Numbers", where he draws a number, folds the paper and I have to try to guess the number and draw it exactly the same as he did. The challenge goes up to one million!!! This conversation went on a long time with an animated Sammy telling me all the rules. It then turned into a whole role playing game where I had to find the trophy hidden in treasure chest in the cave. His imagination was running wild.

Snuggling with Jack, who still sleeps in our bed so Sammy does not wake him or catch anything, we played a game of Guess the Number and I lost 3 to 0. Many snuggles later, I kissed both boys goodnight and went downstairs. Within about fifteen minutes, Sam was down, asking for a drink of apple juice...he hasn't wanted that for weeks. I obliged willingly, panicking a little about the teeth, but feeling I could justify it totally. We then snuggled on the couch, ostensibly for a few minutes, when Sam asked if he could draw. He was wide awake, hyper almost compared to two days ago, and I knew he wasn't about to fall asleep upstairs. We settled down to drawing at the dinning room table and I felt transported back in time. There was Sam, drawing a picture with his usual intent look and his tongue poking out as it did when he was concentrating. The photos are the results of the drawing activity...I just had to capture this moment. The Spongebob was the one he saw online earlier that evening; he even drew the back of him on the back of the paper.

Finally I said it was time for bed...I didn't want to push it even though I could have been there all night. Sam asked if he could write a list of things he wanted to do the next day..procrastinator! I spelled out the letters for him as he wrote his list. It is included in the pictures. He was very good at writing considering he's only had 3 days of Kindergarten!

By 10:03, Sammy was heading up the stairs to bed...I was in a state of bliss, knowing that I need to cherish these moments. We lay in bed together briefly as I gave him time to finish asking questions and end the night without rush. I then kissed his forehead, whispered Ti amo, our usual goodnight , and went down stars with a smile. I know this is not going to last, but I know know it can happen...something I thought I would never see again just the other night. It has given me more confidence and hope.

A Better Day

So I guess I was feeling a little sorry for myself yesterday! I don't blame me, I also don't doubt it will happen many more times too. But today is a better day; Sammy was smiling and even playing games in the bath..giving me HUGE doses of pretend medicine...WITHOUT the chocolate syrup...yuck! I smiled a lot today.

First of all, being off with bronchitis gave me the chance to keep Jack off too and take him to be checked out. We had a great time, despite him also having bronchitis, and I found myself marveling at how handsome and grown up he was becoming. I reveled in having a chance just to stare at my oldest child and soak him in. We also purchased some silver ballet shoes and green glitter for his Halloween costume...he's going to be Tinkerbell: tutu, wings, tiara and all! We had a great time gluing the glitter all over the shoes. I personally think his choice of costume is an attempt to steal back the limelight a little. I don't blame him, and we are all very excited for him to make his grand entrance on Friday in his class. Now we are both on antibiotics and returning to school tomorrow.

Sammy had a great visit to the clinic with Brian. The latter had written down all the answers to my endless list of questions I sent in with them. Everything was 'normal' for this early stage. It has only been 6 weeks!!!!! He is neutropenic for sure, but his counts are within the 'good' range of low. The good news really picked me up and I felt back to the regular state of 'automatic' mode that has developed in recent weeks.

Sammy was more lively today, meaning he was willing to do more while sitting on the couch. He was very excited to help me, or rather, to independently put the 'thank you' cards together, add the address labels, and write his name in big red marker on the back of every envelope. He got though about 15 cards in all. Quite remarkable as he did all the work himself. I was so happy to be sitting with him, actually nearer than I had dared in the last few days.

Bath time was hilarious. Sam had to soak off the sticky dressing that sealed his unused Num Num cream over his port (he didn't need transfusions so he wasn't accessed). He asked for toys so I brought in some of the things we use for medicine: syringe, measuring cups, larger cups in which we give him his 12 mls of meds 2x per day, and a spoon just like the ones he uses to s-l-o-w-l-e-y sip the liquid concoction (sometimes taking 2 hours). I did not know how it was going to pan out, but Sam immediately announced that I was to get lots of medicine...as you already know!

Sam then announced that he wanted a family dinner and I suggested some ideas...he went for corn, rice and hotdogs. (Brian and I had lamb chops instead.) I needed to go to the local store - Mrs. Greens for organic (I wanted to get back to that) and pick up sundries. While Jack and I were at the store, no longer than 20 minutes, Sam took ALL his medicine!!!!! I hope the bath experience helped him somewhat. I made sure to show him how jealous I was that he got to have chocolate syrup with his medicine :)

Dinner was great, Sam left the couch, and we tucked in. Immediately Sam was upset that he didn't like any of the foods, things he normally enjoys. The only answer was that the medicine was turning his tastebuds and that things would get better soon. Once again, Sammy was eating yogurt..his only food for the last week. I did get him to eat some icecream with a cone, but I ended up eating most of it..yummy!

So Sammy is okay...still afraid of missing Halloween, but we are working hard to keep him from getting another fever. I feel more able to cope again, Brian is glad to have my help back after doing almost everything for two days, and Jack is feeling a bit more like he has our attention. Today is a good day!

Odds

I know people are trying to cheer me up when they talk about the future. Things are going well...always look forward...more chance of being run over by a bus. But right now I feel as though Sammy is standing in front of the bus, and we are all just hoping he is not hit! Leukemia can kill...there, I've said it..and my Sammy has something that could kill him!

Why am I feeling this way? I am angry and sad about how he is closing up. He never ventures from the couch, doesn't eat and can't find the motivation to do much at all. I have just put a whole list of questions together for Brian to take to the clinic tomorrow; I'd go myself but have Bronchitis so can't go near cancer patients. I want this lethargy, loss of appetite and lack of will to be addressed. This I now fear more than the cancer. I see none of the Sammy I know, instead a little old man with skinny legs who shakes as he tries to haul himself up a step.

But he's in remission! Yes, but that means he can start the more intense therapy...the one that will blast every last inch of his being away...leaving nothing for the cancer to come back to. I just feel like it's taking my Sammy away too!

Fun Times - Some Light Relief!