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

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27-Nov

3-Dec

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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.