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.