Saturday, October 31, 2009


Here is a poem I just read on a cancer website:
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

Wednesday, October 28, 2009


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 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 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.

Tuesday, October 27, 2009

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 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 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!

Monday, October 26, 2009


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!

Sunday, October 25, 2009

Fun Times - Some Light Relief!


Neutropenia occurs when the neutrophil count falls below 1,000 cells per microliter of blood, the risk of infection increases somewhat; when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, people have problems controlling infections. In other words, Sam can get really sick when he's neutropenic!

Given that we have already experienced more low-grade fevers and two unscheduled trips to hospital, I get very jumpy when Sam's blood counts drop. Researching (as I tend to do), I have discovered that the neutropenic diet is not all that it is cracked up to be. Studies ahve shown there is not a need to be ultra-concervative with the diet when neutropenic.

Sam cannot eat raw fruit and veg when neutropenic but we have yet to get him to eat anything! My little tough guy, the one who could climb up my body with his amazing strength, now has the thinnest arms and legs and cannot stand for more than a few minutes.

The problem is, do I give him things that are not particularly healthy (mac and cheese, pizza, etc) which he will eat a little, or force the healthy stuff and hope? Sam was always a great eater and juggling this issue is hard. Today he ate three yogurts, the Spongebob type, not my preferred organic ones; some mac and cheese, again not organic as he only wants the fun ones with shapes; and a cup of water! He loves to eat out but that is impossible with low counts.

Once again I find myself having to go with the 'what works for now' mentality...get ANY food into him and hope we can go back to more healthy stuff soon. I am all geared for cancer fighting veg and organic, toxic free fare, I just have to wait a while.

Friday, October 23, 2009

ER !

So things can cause little hiccups! Being that it is flu season, I should not have been so surprised to find out Sammy needs Tamiflu and a little extra TLC as he has the symptoms...but no actual flu yet! Here's how we found out:
Due to the rash, Sammy had visited the clinic at CHAM on Wednesday instead of waiting for Thursday. I love how they don't wait around :) No issues with the rash and blood counts were good. Wednesday night we had fever but it was very low grade. The doctor on call (Dr. Moody) who I feel very comfortable with, felt we could stay home but needed to keep checking Sam's temperature and call if it increased.

Thursday was low key and no fever...until about 4pm when Brian, being the amazing daddy he is, noticed a change in Sam and took his temp. He had spiked a fever which could not be ignored and we called CHAM...time to go to the ER! I had just arrived back from work, so changed into 'civies' and packed for admission, computer and video games included.

Sam and I walked into the was like being in a scene from a movie...a sea of people, all sick and desperate to be seen, the room was filled to overflowing. Panicking due to Sam's weakened immune system, my eyes only saw germs...EVERYWHERE! I had to get him away from this deadly place. A nurse cam out of the triage booth and I explained who Sam was and that he was a Hemonc (hematology and oncology)patient...he was whizzed through the door faster than I could blink!

Sam was very scared of the ER. It was dark, being in the basement of the hospital, and there was a sense of unrest and almost a coldness to it. The staff were okay, but very rushed and we both really missed our 'friends' on the ninth floor. We were very much just faces in the crowd, no kind words or even comments on how well Sam was doing..considering. Just basic coverage to ensure he was treated medically.

Sometimes you really want to punch someone when you are feeling totally fed-up with the lot you are given...I met that person in the ER. One of the nurses was curt in his manner and did not inspire confidence in his ability due to minor things such as dropping equipment. He was the 'chosen one' putting Sam's line into his port and although I had quite clearly stated how important it was that this be handled carefully so Sam was not any more scared than he needed to be, the nurse proceeded to hover the (large) needle right in front of Sam's eyes for an eternity. I had to think quickly and managed to divert Sam's attention by discussing games to buy for the DS...two new games were owed before the line was attached.

The relationship between us and the nurse worsened as the hours went on. I had been very pleased to see Dr. Roth drop by and he assured us that the line could stay attached, as Sam needed to visit the clinic the next day (antibiotics were administered and a nose-swap came back clear so he did not have to be admitted). The nurse, however, was ranting around the floor saying his name was on the line too and he wanted the policy of removing it to be upheld. The ER doctor and our good ol' Dr. Roth both agreed it could stay in, but we were forced to wait an additional two hours while the debate was resolved (including a phone call to Dr. Roth - which I insisted on). His attitude was awful each time I approached him for information, basically treating me like a major pain in the butt! I really wanted to take my anger out on this guy!

Five O'clock am rolled by and we finally made our way out of the ER. In seven hours Sam would be back in CHAM but this time,thankfully, in the caring arms of the clinic nurses. Brian let me sleep while he ferried Jack to school and Sam to the clinic that afternoon. Sam had flu-like symptoms and was put on Tamiflu as a precaution. I need Valium at the very least!

Thursday, October 22, 2009

The Rash

The rash continues to get worse but the doctors saw it in the clinic and continue to monitor by phone. Apparently it is not usual and they don't really know what it is. I am getting tired of Sammy having to go through unusual things with this treatment. We were up again all night with itching and discomfort. He is bright red and now has small white heads on some of the red spots around his neck.

Tuesday, October 20, 2009

Normal..Kind Of!

Sam completed his big dose of chemo at the hospital. He tolerated the high dose Methotrexate well and also started oral 6 mercaptopurine. Saturday night was a disaster as he had bad pains in his belly...enough for him to ask to see the doctor (this is a big flag as he always asks that the doctors go away)! Sammy also had vomiting and the pain grew so bad and X ray was ordered. Finally, after being up all night, the blood work could not be collected as his line was blocked!!! What fun :)

Sunday, Brian came in to take over so I could take Jack home. Jack and I went out to dinner at the local diner and had fun just begin together. We really did have a good conversation about the stuff kids like. Sam was also much more upbeat when I left so I relaxed and let myself indulge in some Jack time.

Monday...good news. Sam's body had got rid of enough Methotrexate for him to come off the Leucovorine, (the antidote for the methotrexate) and come home. Nana Susie took Jack home after school so he could watch the 4:00 Yankee game (they lost) and I could go to CHAM to help get Sam home. The port had not been de-accessed so I walked in the room to a screaming Sam, terrified of the sticky coming off then the needle being taken out. (Reasonable fears if you ask me!) I persuaded him to let me soak it with the magic oil and then asked the nurses to pretend to cover it in the numbing cream to stop it the needle removal being painful. Sammy ended up being the main person gently unsticking the HUGE dressing with the magic un-sticky wipes. Finally the nurse, Lindsey, who had been very patient, leaped in and out it all came. Sam announced he had been REALLY scared but it actually didn't hurt. I wish he would remember that next time.

The evening consisted of the four of us and Nana Susie at home eating Chinese and Japanese while watching the defeat of the Yankees. Sam looked good, just an itchy head and mild rash on his neck, Jack had a stinky cold, Brian was exhausted and I was in need of sleep but loving having everyone home.

Today the rash developed to all over Sam's torso and he has red raised spots on his lower legs. Dr. Moody, on call, suggested we give Benadryl and go to the clinic Wednesday morning instead of Thursday. Feeling that things were not completely crazy, I actually headed out to dance class for the first time since diagnosis. It was great!!!!!

Sunday, October 18, 2009


While this blog is about Sammy's journey through leukemia, and you get to know my inner-voice (typos and all), there are a few major players in this who are crucial to the story. Brian AKA Daddy, is the 'doer' of the family. He actually gets Sam to be more upbeat than I do and has created a wonderful schedule of rest, play and schoolwork each day. Brian is taking time off work until December and has become the main caretaker. I love how strong he is with it all, especially dealing with my overbearing determination to be in charge of everything even though I'm not there.

Jack is the big brother. He has experienced life-changes through this and has been so strong. I know he misses the time we usually spend together and has had such a disrupted schedule in order to keep Sam as comfortable as possible. It is very hard to meet the needs of both children at this time and we are determined Jack will stay as normal as possible.

Yet bedtimes are now much later (I was a fanatic about getting them enough sleep each night), and Jack even sleeps in my bed so I can be by Sam's bedside all night (they share a room). I am still debating the fairness of this but feel Jack would be worse off being woken up all through the night. Nighttime routines are structured around the meds schedule. Sam insists I give them to him at night so Brian reads to Jack. I then have snuggle time with both boys separately. This gives me time to chat and catch up. Of course it also delays sleep but it is so essential to connect.

Homework is less challenging now - well for us, Jack hates it! Again, Brian tends to do this with him as I am back from work and tending to Sam who plays the sympathy card no end with his need to see Mummy. Activities for both boys have stopped but we want to get Jack back to a sport and to playing his guitar. The leukemia cannot be totally blamed for this as the guitar teacher was unable to come at an early enough time so we need to find a new one. Jack was also torn between football and soccer so we couldn't book him in. It is essential to get these things back in action, however. Sam will go back to golf when the next camp starts in the spring.

"Supersibs" is a wonderful resource for siblings of cancer patients. In fact, signing Jack up for it was the first thing I did after diagnosis. Jack received a letter (mass produced) from Mia Hamm telling him all about how she felt being a sibling of someone with cancer. It really seemed to help him at the time. Periodically, Sipersibs will send Jack a goody bag to help remind him he is special too.

There is also therapy. We are never in the hospital for the Tuesday therapy - one for Sam with other patients, one for Jack with siblings and one for the parents...for me as Brian does not want to go. Although the thought of therapy using up some time we can actually be together worries me, I know it may help us all get through. The commute is too far to CHAM when we are home so we are looking into the Guilda's Club in Westchester.

The biggest help for Jack is his best friend, "M". Even when I haven't seen Jack for a while, he would rather go to M's house to play...a good sign he is doing well. The two boys play so well together and the independent stage Jack has reached will also help.

Being from England has posed problems with staying connected to family from day one, but now it is harder than ever. Because we are twixed and between hospital, neutropenic states, and small windows of 'somewhat normal', we have not been able to have my mum, Nana Haze come over. This is so painful for both of us as she wants, more than anything, to come and look after us, and I need a hug from my mummy! Nana Haze has Lupus which prevents her from being able to leap on a plane and drive herself around, so we are waiting for a time when we are more able to have her stay....fingers crossed for Christmas. I can't imagine how hard it must be to be three thousand miles away when her grandson is so sick...I do know how grateful I am that she has allowed me to take my anger out on her over the phone, snap and moan, and cry when needed. My mummy has been looking after me so well!

Nana Susie and Poppa are the 'on-call' grandparents. They have been woken up at three in the morning to come to Stamford to be with Jack as we rush off to the hospital. They collect, feed and add support as needed and even back-off when required...that sound so harsh but anyone who has faced traumatic times will know that sometimes you just need space to breathe. They do that with love and understanding. Nana Haze also did this when I was so down I told her to stop calling everyday! Parents are amazing at really getting what their children mean from their words...we love our parents so much.

Da family and friends - so many wonderful people who have cooked for us, looked after our pets, helped out with Jack, passed on news so we didn't have to, and supported us though this. Prayers have been said across the world, they are really working. They say it takes a village to raise a child, and we have a network of friends, family, and parents of the children we teach, helping us through this time. Most special of all is the way the children have helped..sending cards, making gifts, our neighborhood kids pooled their own money together to buy Sam some games...their own idea.

So many special people...Sammy is a lucky little boy.

Saturday, October 17, 2009

Consolidation I

"Houston, we have landed!" Remission has been achieved. Phew! Thursday went well medically. Sammy's blood counts, platelets and ANC were all fine for the procedure (spinal tap, bone marrow biopsy and intrathecal Methotrexate)and it went by without a glitch. Sam was even much calmer about being put to sleep this time which was a relief. He was scared of the nightmares he had experience last time, so I whispered gently ideas for his next birthday party...Spongebob cake, balloons and fun at "Dino-dig". He later told me he had good dreams.

Having the finger prick was a different story. It is amazing how we humans accept varying degrees of suffering. Sam was mortified to learn his finger had to be pricked to draw blood, and even more upset after watching Mummy demonstrate with her own finger (ouch)! Major histrionics later, we had squeezed a pin-head sized drop of blood from his numbed finger. The look on his face when we told him this was a weekly event was enough to turn me to stone. We quickly changed the subject to things he's more comfortable with such as having meds pushed through his port..see, accepting varying degrees of 'yucky'!

We left the clinic before getting the results back, but later that afternoon we got a call to tell us the bloodwork indicated remission, and that Sam would be admitted Friday for the next phase of treatment. I went into school Friday Morning with the strangest feeling. I dissolved into tears as I told everyone about the remission, and it was partly relief...but also fear of the next was going to be happening that day. In hindsight, I am now very pleased as the alternative would be a new treatment plan to get to remission, but I am still shocked at how sad I was as I told everyone the wonderful news.

I am now sitting in room 906 in CHAM. Sam is over half way through his 24 hour High Dose Methotrexate (HDM). This is the big gun! I am still a little afraid, yet calmer now it is happening. Effects won't present for a day or two so I am bracing for those: mouth sores, nausea, vision problems, sore gastro name a few probable ones. Others we will deal with IF they happen. We are here for about 4 days so the HDM can be administered safely and the rescue med, Leucovorine, given at the right time. Then we will be home and waiting for neutropenia to set in (lack of immune system). We will play it extra safe, avoiding too much contact with others and staying home. This phase lasts for three weeks. Neutropenia is expected to hit around day 14. Once it is over, we can get out a party once more!

Wednesday, October 14, 2009

Thursday, Friday and Beyond

Thursday is approaching and Sam is being prepared mentally for it. He has been discussing how we should wrap his port when we put the numbing cream on...his preference is cellophane but I think it needs more stick to guarantee effectiveness (he said it still hurt last time). He is very afraid of the needle which inserts the line to the port so I think we are going to have to work hard to convince him to let stick the cellophane down with something. A wonderful neighbor brought us some dressings that her son "D" uses...he has diabetes. Sam talked about how brave he was but was very afraid of the shots "D" has. I had to reassure him that his disease was different while developing an amazing respect got the young man down the street. This does beg the question...why? Why do so many children have to endure so much?

Sam will be admitted on Friday...this I am surprised about as I was under the impression he would get a break before the next blasting of chemo. Over the past few days I have really swotted up on the next phase and am pretty sure it part of the chemo should not be given until in remission. I have a long list of questions for the doctor tomorrow:

Induction –Day 32 Questions:

  1. When do we know the MRD (Minimal Residual Disease)?

  1. Does the 5 year timing start from the day Sam is in remission?

  1. If MRD is good – is the protocol changed to reduce side affects especially HDM?

Consolidation 1 Questions:

  1. Will Sam be admitted for the full 3 weeks?

  1. High Dose Methotrexate – is Leucovorin being administered as per the Study protocol? It is not on Sam’s roadmap.

  1. Can Sam take Kidzime?

  1. If admitted for long time, Sam will not eat. Can there be supplements in IV or other ways. He lost so much weight before.

I will keep you all posted on the answers to these and the thousand more we will have as we go though the next couple of days.

Last night we were talking about various things and I asked Sam what he wanted to be when he grew up. His reply was, "normal'!

Yet life is not 'normal' for anyone....we all have our battles, joys and experiences what shape us into remarkable (and sometimes not so remarkable) people. Being normal is going though stuff and learning how to cope with it. While I would do anything to take this experience away from Sam, I know he will grow so much from it and be an amazing young man when he's older.

Tuesday, October 13, 2009

Prophase and Induction

Prophase and Induction are the beginning phases of treatment for ALL (Acute Lymphoblastic Leukemia). As soon as Sam was admitted to CHAM, he began the Prednisone Prophase which is a three day phase which immediately begins to reduce the amount of Leukemia in his body. Two drugs are given: Prednisone and Cytarabine, the latter is given in the spinal fluid to begin attacking any CNS leukemia. We heaved a huge sigh of relief when we were told Sammy did not have ALL presenting in his spinal fluid. Although we were scared out our wits..this phase was relatively easy. All we had to do was come to grips with the diagnosis!

Remission Induction lasts 4 weeks and Thursday, October 15th marks the last day of it. The purpose of this phase is to kill all detectable leukemia cells. The protocol consists of seven drugs, all of which are toxic and cause varying degrees of side effects. Sam, I am happy to report, did very well with the side affects...give or take a couple of vomits and a night of excruciating agony with leg, neck and back pain. Believe me...that is getting off lightly :)

Prednisone continues throughout Induction orally twice a day. This has been a challenge as Sammy developed an immediate aversion to medicine-by-mouth after being pinned down by six nurses (a seventh was needed as he threw them off)! We managed eventually to have him take about 12ml of liquids by adding chocolate idea of Heather's, one of the clinic nurse practitioners. During the first 3 weeks, Sam took about 1.5 hours to sip down the concoction. This week he can do it in about 15 minutes, lying down, with plenty of breaks. He knows what works for him. He announced yesterday that he is no longer afraid of the medicine so long as it is chocolate.

The rest of the drug-fest includes Vincrisine...the one that makes the hair fall out and constipation; Doxorubicin, more hair loss, nausea, mouth sores; Asparaginase, which could have led to the pain on previously mentioned night of horrors, Hydrocortisone, another steroid; Methotrexate, one I fear; and Cytarabine which severely lowers blood counts (as they all do really).

The hospital provides a road map of when these drugs are taken and possible side effects. Sometimes I truly believe ignorance is bliss as agreeing to these poisons goes against all that parents believe in....I was ORGANIC for goodness sake! As I said, we have been lucky so far with the effects as I have read about much worse.

Sammy has come so far in this life-changing month. He fears sticky tape and bandages more than chemo, knows he has a tube in his chest (central line), and is fine with that now. He cannot stand the idea of long waits in the clinic and hates the nurses, but likes Kim, the Child Life Specialist who befriended him and helped him face so much early on. Most amazing is his ability to ask about his fears. We are still working on answering him in the best way, but we promised to be as honest as we could...leaving out gory details or procedures is not lying, and helping him become aware that this is long-term.

Next we face Thursday...the final Induction Phase spinal and bone-marrow to see if he has reached remission. The next phase scares me so much, but we will take it a day at a time.

Monday, October 12, 2009

Questions for Today

Today Sammy asked me the following questions or made comments:
  • Why did Jack have a nurse at home for his treatment (Meningitis) but he has to go to the clinic every week?
  • Why can he see a needle in the port clip when he had it attached to his chest at the clinic? It hurts when it goes in!
  • He might try paper tape and cellophane to cover the port when we put the numbing cream on it before the clinic. He hates the tape because it hurts so much but I told him I read about a child who felt the same way but didn't mind the paper tape so much.
  • When will his hair grow back? Will it fall out more?
  • Will he still be going to the hospital next year? If so, why?
  • Is taking the grape medicine the same as the chocolate medicine or will one make him better faster? (They are the same...just chocolate syrup hides the bad taste).
  • Is it okay to want chicken fingers so much? Why does he want them so badly especially when he thinks about them and then gets cranky because he gets so hungry?
  • Will all the Thursdays at clinic be a short as last Thursday? Why can't they do the same thing?
  • Can all the doctors except one and Mummy leave the room as they scare him when there are too many?

The First Night

While I wish this night was more of a blur, I am exceedingly grateful Sam remembers very little about it. Sam and I traveled to Children's Hospital at Montefiore (CHAM) by ambulance. We tried to make a big deal of the thrill of this mode of transportation and Sam really seemed to like it. He was even more pleased to discover Jack had not been in an ambulance before (score 1 for Sam)!

Upon entering the ER, I was struck by how dark and scary it looked. Here we were in the basement of a strange hospital in the Bronx, miles from home, waiting for a bed to save our son's life! Brian still had to drive down and meet us. There was a baby who had fallen down and was having so much trouble...I do remember thinking how much I hoped she would be okay.

Finally we were told to make our way to the PCCU - what??!! That meant critical care...the older kid version of the NICU!!!! We were done with that with Jack..surely? Now my heart sank yet again.

Nicole was an angel. She saw us in the ER hallway and immediately took charge. She was a member of the Child Life team in the ER but felt we needed her more that moment so she adopted us and took us to CHAM 10 -top floor-place for very sick kids! How clearly I remember Nicole talking me though the initial procedure and how she could help. She would explain things to Sam in a way he would understand and be there to advocate for us. For the second time that day, I realized we were very lucky. She just happened to be there as we walked by.

A million doctors and nurses tapped into Sam's arms and drew blood, checked vitals, hooked him to monitors, and created a symphony of electronic beeping sounds. This later became a concerto as Sam's screams took center stage.

Kindness was around us, care and reassurance. They had handled this many times and knew the procedures. We were struggling to wake up from the nightmare, but trying to stay focused on all we were being told.

Then came the worst. This part will haunt me forever...but remember, Sam does not know it happened. In order for the drugs to be administered safely, Sam need a port through a main artery. The Xrays were back and we were told there was a strange mass in his chest...he could not be put to sleep for the procedure as it was too dangerous. So they numbed the right side of his groin and 6 doctors and nurses attempted the impossible...getting a needle the side of a cigar into his vein so they could insert a tube the length of my middle finger. Brian and I were asked to help sooth him...we became the ones who held him down as he screamed. All I could say was "relax, if you stay calm it won't huts so much." "Breath Sammy, I love you."

The doctors could not fit the line. The 'happy juice' designed to leave Sam disoriented and not as aware had been administered at full safe dose..yet he still knew all that was happening. Seven tries later they went to the other leg. This had not been numbed. Brian and I pinned him down and whispered words of love to the child we were torturing. I could not have inflicted that much pain on my worst enemy...yet I kept smiling down at my child. My smiles did not extend to the doctors!

Eventually the line was in...we were a mess and the doctors were also in shock. They had never experienced that before. Yet still there was such kindness. The Fellow on the ER went out to get Sam something he would like to eat. The burger King she had in mind was closed, so she drove 13 miles to the nearest open KFC and brought him back some chicken. My little fighter was asleep and never did eat it, but again, we saw how people were there for us. People can be so kind. Best of all, sam does not remember the whole thing. He still asks how he got the marks and bruises (still there from a month ago) but he will never know about that night...again, we are so lucky.

It's Leukemia

September 13th, 2009 started out strangely. Sam, my 5 year old son, had been upset all night and was now hitting his fist against the couch in pain and frustration. The past couple of weeks had been spent visiting doctors for a variety of reasons, including the possibility that he had heart problems.

Sam had been complaining of headaches for several months but they were generally infrequent. Recently, he had been troubled by a pain in his chest..he said it felt like his heart was 'pushing him". This led to my first visit to the local doctor who agreed to do a EKG but thought there was nothing to worry about.

The results came back as abnormal! I was terrified as the doctor said it looked like Sam had an enlarged heart...but not to fear as it could be an error by the technician. Not one to let things rest, I plagued the recommended pediatric cardiologist (including a phone call from my neighbor who knows the secretary well). One echocargiogram later we were told Sam was fine with a very slight heart murmur but nothing to worry about.

Thursday, Sept 10th, both boys had their annual physical. For this we took them to our pediatrician in White Plains. Clean bill of health all round but some concern over the headaches and I was asked to keep a headache diary and an Xray was ordered to check out the chest pains. This doctor was not settling for the results we had.

Saturday night I called our pediatrician as Sam was so uncomfortable. She recommended seeing if a fever started and then taking him to the ER. I did get up and dressed that night but Sam fell back to sleep without a fever and so I left it.

Sunday morning I knew I should not wait for a fever and we marched off to the Tully Center. Once again they felt there was not much to be concerned about but they did want blood tests so sent us to the ER. I almost left as Sam was feeling better but something told me to stay.

The first diagnoses was constipation. This made sense as Sam had not eaten or passed anything for a couple of days. Then the blood work came back. Doctors mean well and I cannot imagine having to break bad news to a mother, but he rubbed my arm as he entered and I know something was life-threateningly wrong. The ER doctor asked the technician waiting to take Sam for more Xrays to mind was racing.

I stood face to face with a man who would have done anything but tell me my son had white blood cell counts that went through the roof. The room started to close in... I looked at Sam and knew our life was changing. I asked what that indicated...Leukemia. I asked if there could be anything else...ANYTHING!. No...the white blood cell count was too high to doubt it...but Sam need to have new tests to formally diagnose it.

Nothing seemed real! Surely the tests would prove he was wrong...the doctor's head Sam had Leukemia.


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