Tuesday, January 26, 2010

Trying to Look on the Bright Side of Life and Failing

The past few weeks have been tough, what with hospitals, chemo cancellations and the sudden drop in Sammy's counts again.  (There is also the usual list of reactions Sam has to the first day of each cycle: neuropathy; headaches; shakes; reflux; constipation; food cravings; mood swings; and the constant, never ending fear of the pain).  What has made this time most unbearable, however, is the conversation I had with the doctor (Dr. Gill) at the clinic last Thursday.

The clinic visit was already changed due to the usual weekly injection of Asparaginase being canceled due to a shortage and Sam was not getting his two shots (one in each leg) of the PEG Asparaginase until next week.  In addition, the social worker from CHAM 3 had put in my request for Sam to see a psychologist so he was meeting her for the first time.  I had let them sit together while I talked to the doctor in the hallway..I really wanted Sam to be able to bond without Mummy hovering. 

So I covered my usual questions and found out that once the Doxorubicin is over, Sam will have to have his port accessed every week for more Methotrexate.  I then asked Dr. Gill about how different Maintenance (the last phase) will be once Sam gets through the battery of chemos during this phase which ends about June.  Upon hearing the only difference will be the end of the Asparaginase shots,  ALL the other chemos AND the steroids will continue at the SAME DOSES,  I was devastated.  Sam can hardly function during the first week and the second week he has been reaching Nadir (the lowest point of his blood counts) and has either been kept off chemo or hospitalized with a fever.  I asked why we were told it gets easier...this phase certainly has not been, and yet we have been told time after time it gets better... and the kids should all go to school... and the magic unicorn will protect them from catching anything even if their counts are zero...blah blah blah!!!!!

Basically, Sam 'could' get used to the meds and be a little better over time.  OR, he could just be one of the kids who suffers through treatment and has to deal!  I actually saw the doctors eyes tear up as he told me this...and then he added, "Sorry Dr. Cole, but Sam should NOT go to school when he is neutropenic!"  So we are keeping him home. 

BUT....my sick days are done so I had to go back to work and Brian has used his FMLA leave up.  So, as we had been told many times to do, we asked the district to allow the teachers who had volunteered over the past few months to donate a sick day to me so I can be out if Sam becomes hospitalized or needs me due to pain.  The Board of Ed decided NO!!!!  They would not allow me to have donated sick days to look after my son.  Apparently, had it been me with the cancer, I may have got them.  Poppa has become Sammy's caretaker...we love him for doing it but I am dying inside.  We cannot afford to just take an unpaid leave so we will have to do as we have been doing...taking one day at a time...face the mounting medical bills....and keep moving forward...although if anything else hits us, I am not sure I will make it.  Can't wait for the landlord to tell us to move out as he wants to sell the house :(

Wednesday, January 20, 2010

Forgotten Blog

Below is part of a blog I started a long time ago on the March of Dimes site, Share Your Story.  It is not very long but I had completely forgotten about it until accidentally finding it quite by accident. I guess, reading though it, I didn't have much to complain about, especially compared to many of the other stories on the site.  Reading it served two purposes however:

1. I began to feel justified in my anger about having to go through so much...right from the pregnancy with Jack.
2. It also made me realize how much I can get through if I have to.

I am sure the emotions of these two ways of thinking will fluctuate with my hormones and the changing of the wind!  But at least there will be times when I will remember I can get through anything:)


Feb 23, 2007 05:56pm (EST)

I have never really considered sharing my story until recently. My friends and family know how lucky I am to be the proud mother of two healthy children; many also know how painful the road to this point has been.

We were so delighted when our sonogram gave us the news we were expecting a boy. All the measurements were normal, all the toes and fingers were there, and he definitely was a boy! 9/11 had just happened and I began to feel dread about bringing a child into the world, but I was still optimistic and cherished the feelings of being a mother.

Then, on November 11th, I walked into the bathroom to discover severe bleeding. I was just 24 weeks pregnant and had been feeling slight butterflies that 'rolled' in my stomach...perhaps the beginning of the wonderful movements my baby was making? No. Those were the first contractions. These feelings would continue throughout my pregnancy, getting more severe as time went on. "But I'm only 24 weeks!" I kept
telling my husband as I lay in the triage room at the hospital. I was being pumped with magnesium and terbutaline...not at the same time... and my doctor was trying her best to reassure me. I was admitted...not the reassurance I was looking for.

I was numb. I had been told what might happen if I delivered. Some babies could survive but usually faced many problems. I felt like every inch of me was crawling as the magnesium worked hard to keep my son in the right place. I was angry. Why me? I had been so careful. Then I remembered walking my in-laws' dog and being pulled so sharply by that I felt a pain in my side. Now I blamed me. I should not have walked that dog knowing how he could pull on the leash so much.

I managed to put all those thoughts to the back of my mind; I had to pay attention to what was going to happen next. I had to stay in the hospital for two weeks while steroids were given to strengthen Jack’s lungs. (We had chosen the name and he became even more real and even harder to consider losing). The contractions were strong; my monitor looked like the Rocky Mountains. Thankfully, they did not hurt; they were, however, constant reminders of what was happening to my baby.

When I was sent home, I was put onto a Terbutaline pump and monitor. I was on total bed rest; no getting up except for the bathroom. Now I began planning again. If I went this far, maybe I could hold out and make it all the way with my Jack? I imagined holding him and putting him in the new crib we had ordered just days before my contractions began. My mind began to refuse to think about the bad stuff. Everything was going to be okay.

I sent my monitor readings into Matria twice a day. Sometimes my contractions needed an extra bolus of medication to bring them down to a safer level. All in all, the time went by fairly well. I kept busy doing online courses, reading books and attempting crosswords. My in-laws brought lunch or Brian, my lovely husband, left a cooler of food and drinks by my bedside. I developed a craving for milk, drinking liters each day. I was certainly settling into a routine. Jack was still safe inside.

New Years Eve. Of course we didn’t go out…until exactly twelve midnight! As the fireworks began and the ball dropped, Brian and I had to make our way back to the hospital. My contractions were not being controlled by the medicine. I had 3 boluses and still they were coming fast and strong. I was not even 30 weeks yet, Jack was still too early. I was placed into a delivery room but hooked up to the magnesium again. Doctors returned to explain how life might be if I delivered. They even showed us video of breathing and relaxation techniques as I had not been able to go to classes. I guess they felt I may not hold out.

Three days later, I was back home with my” pump and bump”. I had managed to come through the New Years ‘celebration’. Jack was safe and I was shaken but still determined. We had a couple more scares but nothing that required hospital. Friends and family were supportive from a distance. My family was in England as I moved to America to be with Brian. His family was working and did what they could. We felt okay, but a little alone.

It was February. I was still pregnant. My doctor couldn’t believe I had come this far. “Just a few more days will help…” She had being saying from the beginning, way back in November. I felt so proud; I had managed a few more months. I was about to reach 36 weeks and, while not full term, this had been the major goal. After this point, I was going to be taken off the pump and allowed to let nature take its course. My placenta previa had gone…perhaps all those contractions had moved it? “Something good then,” I thought. I was so excited that I would be able to have a natural birth, my son would be safe and my life would be back to normal. I even sat on the couch instead of in bed!

February was not a long month for my pregnancy. On February 5th, I called my mother-in-law. I needed a ride to the hospital. Brian had left for work and I was bleeding heavily. This time I knew nothing was going to happen except the baby, my Jack, was going to be delivered.

Brian reached the hospital in record time. I think my call helped, “Brian, I’m hemorrhaging, please meet me at the hospital!” In retrospect, not the words I should have used. I was in the operating room within an hour. The idea of giving birth was gone, an emergency C-section was needed. Things began to whirl around yet stay still at the same time. Slow motion, warp-speed, crazy thoughts. I was scared.

I kept holding onto the fact that Jack was okay now. He had gotten another dose of steroids for his lungs as the results from his test showed a need…not good! Yet he was 36 weeks so it would be okay?

The operation was strange and surreal. The baby was out but we heard nothing. The doctors were talking but we felt that they were uneasy. What was going on? Still nothing. I saw Jack being carried to the table where the doctors from the NICU were gathered “just in case”. They were busy. Why was this taking so long? He had been in me for 36 weeks, not 24! It should be okay. But his chord had been caught up and there had been a great amount of bruising and complications as he was delivered from my stomach. He had gone through all that fighting inside me, only to have a birth that left him fighting for life.

Jack cried. I cried. We saw him for a moment, a quick kiss, them he was whisked away to the NICU. He would spend five days in there. My enormous preemie. He was 7lbs 1oz!!!!

Life for my Jack was not easy for him during his time in the NICU, but he was okay. He was strong and his damaged lungs were quickly working on their own. I struggled to breastfeed, didn’t do too well but in the scheme of things, that was nothing. I also struggled to bond. That took much more of a toll. Yet looking at my lovely strong (slightly asthmatic) five year old now makes we jump for joy. He is fine, truly fine. My contractions were no match for him and neither was the umbilical chord that had a good try at getting him. I consider myself to be very lucky indeed.

Tuesday, January 19, 2010

Hospital Stay and Home Nursing

Staying in the hospital this time was rough.  We shared a room with E, the little boy who started treatment at the same time as Sammy.  He has standard risk T-Cell ALL which may sound better than Sammy's high risk category, but really he was in for something more scary than a fever.  His counts had not been high enough for treatment in over a month so a biopsy is scheduled to check for relapse.  I cannot imagine being his mother. (Later edit: Everything turned out okay!)

Sammy, on the other hand, looked a lot sicker; being frail and bedridden most of the time with a definite lack of interest in anything.  Nana came to help, and Sam did come out of his shell with E in the playroom and actually had fun playing with another child on the Wii.  Once I returned, however, he went back into his normal funk and generally stayed in it.  I am not sure the mummy thing helps him much at all!  I know children tend to let their inner feelings show more with mummys...it is a compliment that we are the ones they feel most comfortable with, but it stinks!  I so want to see him happy and active again.

I am also very angry this time.  We were admitted due to a growth of bacterial on a culture taken on the 10th and then remained due to another positive culture on the 13th.  This bacteria (Staph) was picked up in the hospital when he was admitted for the fever...which turned out to be due to no more than a cold.  Now we were waiting to hear if this potentially fatal infection could be controlled and cured, or if Sam had to endure his port being taken out and replaced by a temporary IV line before replacing the port later on...all of which added to the risk of complications.  The bacteria was from the skin, so the hospital was the culprit...I won't stoop to blaming anyone in particular but I do have my doubts.  So we endured a week of misery (believe me, Sam is MISERABLE in CHAM), and nothing we could have done wold have prevented it. 

I decided to take things into my own hands and approached Dr. Cole (via email and phone as I still have not seen him)  to look into home care.  Sam had been put on Vencomycin, the big kahuna of antibiotics, and initially reacted to it with Red Man Syndrome - turning BRIGHT red all over his face and scalp!!!  Benadryl helped control it and, over the next few days, he began to be more tolerant of it.  I felt that this could be done at home...Sam had no fevers and I knew I would be ultra careful with his port and line.  Once the cultures were negative for forty-eight hours, we were a go.  I have to admit I was very relieved about home care, but more so that the infection was gone: I was petrified that it would be extremely serious. 

Sam came home on Saturday, and the visiting nurse came out in the evening to teach me how to administer the Vencomycin.  The medicine came in small 'baby bottles' which pumped the meds through the line.  They only come in one hour doses so I was instructed to clip the line shut at regular intervals so the Vencomycin could run over two hours.  I was to flush with saline before and after treatment and end with a flush of heparin.  Sadly, I was already fairly comfortable with it due to dealing with Jack a few years ago.

Being at home did not really lift Sam's spirits.   Of course he is at the beginning of his next cycle so his body had been hit with several strong chemotherapy meds and steroids.  Most of the time he sleeps or gets angry about food.  New strategy: load up a plate with small samplings of multiple types of foods so he can select the ones he feels comfortable with! 

Jack felt this hospitalization more than ever...he is growing up, turning eight in  a couple of weeks so I am not sure how much is natural, "I'm a big boy with issues," and how much is, "I'm desperately in need of a hug and normalcy!"  I am sure it is a bit of both.  Never-the-less, he does want more time playing sports with daddy, more hugs from Mummy and less bossing from Sammy!

Tuesday, January 12, 2010


So they let us out on Monday:)  Sam was so happy and enjoyed a family meal with Daddy, Mummy, Jack,  Nana and Poppa.  He was a happy bunny.  Poppa came up to the house Tuesday morning so Sammy could stay home and relax while I went back to reality with a bang and started work again.  All went smoothly until....Brian barged into my room, phone in hand, to announce that the clinic had called and Sam's culture had grown bacteria...he had to be readmitted!!!

Once at the clinic waiting to go up to CHAM 9, Sam was administered a new antibiotic,Vancomycin. Within seconds he was red all over his head and face and complained of severe itching. He was having an allergic reaction to it.  After Benadryl and a change in how long the antibiotic was to be given (over 2 hours instead of one),  Sam started to look more normal again...a little scary, I can tell you.  

So here I now sit, listening to E and his mom in the bed next to us, feeling thoroughly shell shocked by the turn of events.  Ironically. E is the little boy who started treatment at the same time as Sam, back in September, but their paths are very different.  It is amazing how fine tuned the treatment is to each patient.  E has been off chemo for a month but has only just spiked his first fever this week.  He did not get radiation as Sam did, and he is due an LP within the next few days; Sam is not due his next one for weeks.  Both boys have the round faces and eat very little.  E has also been told he can't go to school, Sam had been told he can go even in his ANC is zero...both children are under  Dr. Cole.

I actually saw Dr. Roth at the clinic before we were admitted today.  I explained my frustration about theories A and B and he explained that the doctors see the big picture and while the chemo can knock out the bone marrow and cause fevers etc, overall, the treatment gets easier...on Maintenance...in June!!  I politely explained that that is a long time away for our little boy.  But to the doctors it is a mere blink of an eye and they just see this phase as one that has its bumps but all gets better soon.  SO - in the scheme of things, both theories are right...time is the key.  Sitting here looking at my poor child facing more days in the hospital, I feel like time is deliberately slowing down.

Monday, January 11, 2010


As you can see, I have included a reference guide for the blood counts at normal range in the Cancer Information tab. That will help me avoid having to explain things too much each time I comment on them. Today we were hoping to get good news. The news we got was that Sam's ANC (Gran Count) is down to 476 from 518 yesterday, the other numbers are up: hemoglobin 11.5, platelets 182 (actually this is down from 185), WBC is 1.7 and ANC 476. So, much of it is still below normal but the magic number is an ANC of 5oo which pulls Sam out of the "severely neutropenic" range. They have no idea why he keeps getting fevers, the cultures still only show the rhino virus (cold)! The counts were exceedingly low all week as shown below:

                    6-Jan  7-Jan   8-Jan  9-Jan 10-Jan

Hemoglobin   8        7.6    10.5    10.9     10.8
Platelets         170    181    191    189      185
WBC              1.4     1.1        ?      1.2      1.4
ANC              56       30      176    312      518

The bummer is that Sam will have to have his port changed today if he stays. That means pulling out the needle and reinserting a new one...ouch!!!! He is not going to be happy and it is going to be a very traumatic time. The worst part will be getting the sticky off...he still hates it.

Hopefully someone who can make a decision will come by soon and let us know. For now, we are playing the waiting game.


I am not really sure what the purpose of this blog really is.  Sometimes it is my therapist, a way for me to vent;  other times it is a way for me to tell my friends and family what is going on; it is also a record of events for us to look back on one day and realize we 'survived'!  Today I needed it to be a record of procedures with dates and times so I could relay information expertly to the doctors as needed...it failed miserably :( 

Sam continues to be in the hospital and has spiked two fevers today, despite reaching the 500 mark for his ANC.  I came back after weekend relief to the news that he might stay longer.  After the fever spiked with me, I asked to speak personally with a doctor.  One came remarkably promptly (finally) and she was very open to working with me to come up with good answers to my questions.  I needed to know why Sammy is still having fevers even though he is on hard core antibiotics and only has a cold.  The doctor recognized this as a fair question, albeit one which I have been asking for a week now, and she asked about his body in general.  I commented that his pee was particularly stinky, just as it always is in hospital - I put it down to the junk they were pumping into him.  She felt that it might be wise to do a urine sample...can you believe this is the first one they are taking?  So Sam dutifully peed into a cup, and it sat there for about three hours before being collected...not unusual...they had better not say it is not usable now!

About an hour or two later, two doctors came by to examine Sam and listen to his chest again.  His cough and cold are worse and they asked when he had last had a chest X-ray.  Oh my goodness, I froze...I remembered the stroller, him shaking as he stood there having the X-ray taken, the "all clear" results; but I couldn't for the life of me remember when or why he was having an X-Ray.  As I talked with Brian on the phone, who also was not sure, I realized I could check this blog...surely I wrote about something like that.  Then, during the conversation over the phone, things started to come back to be in a hazy mist of blurriness (yes, I meant to over exaggerate)!  Needless to say, I checked the blog and it is definitely sans this event.  Not helpful at this point.

So here is what I do remember...
There was a Monday in December (how's that for accuracy) when I took Sammy to the clinic for an  extra visit due to chest pains and small pinprick spots. We headed to the clinic, saw Dr. Gorlick and he sent us up to X-ray to check for pneumonia.  I remember taking Sam down to the Ped X-Ray department in the push chair (stroller to my American friends), coercing him to stay still, try to stand (he sat in the end), and worried sick they could see the growth back in his chest.  All was fine.  It is strange how that escaped blogging priority.

So you see, I was not able to tell the doctors when Sam had last had an X-ray or why... really not me at all.  He's what I think:

I am blogging more for my own sake at this time...sharing things and expressing thoughts and emotions.  I am not  recording all the events and details as I had planned to do.  Why?  Because I often feel that I am unable to relive it again to blog it...just as I am not very forthcoming with phone calls or friends inquiries as to what is going on.  I feel too wrung out and need to not repeat for the twelfth time what has just happened that day.   I am afraid of losing the wonderful support we have had, but reality is such that I don't have it in me anymore...my smile is faded as I reply that we are doing as expected.  I hope to get it back.  But I also know people deserve more...especially my mummy who I usually snap at and hardly communicate with at all...not because I don't love her, I just can't cope with the additional issue of her illness and distance and my guilt at that etc.  I am closing into myself out of sheer exhaustion...only on month 4 of almost 3 years!!!!

So this blog might take a different route and become more a narrative of what is happening, logging counts and procedures and trying to avoid the 'me, me,me' of it all.  Sam, Jack, Brian, the Nanas and Poppa and other friends and family are all hit by this and my little self indulgent sanctuary is not providing the details I need for instant recall.

By the way, you know I will feel differently tomorrow so remember to take each blog entry as an entity in itself! ;)

Friday, January 8, 2010

Theories A and B

I recently discovered that the effects of the chemo are cumulative.  That means Sam will experience more severe reactions to the chemo as the cycles go on. (Theory A).  Of course, I do keep receiving mixed messages and most doctors say his body will actually get more used to it and be able to tolerate it more. (Theory B). Which it will turn out to be remains a mystery...only time will tell.  HOWEVER...Sam is certainly feeling the effects more this cycle that the last.  It was proposed by Dr. Gorlick that his fever was due to the Mercaptapurine (6MP) which can severely lower the blood counts as it builds up in the body...evidence for theory A.  Meanwhile, we are constantly told, mostly by our dear Dr. Roth, that it gets easier now and even more easy when we reach LTM (Long Term Maintenance), which is in June or July.  Well, I have to say, being in the hospital all week and possibly next week, receiving blood transfusions and crying myself to sleep over the fear of infection defeating my son is certainly not "easier"!

Aside from the initial absolutely indescribable feeling when we were first diagnosed, and the ways we helped to torture our little boy in the first week, I have to say it has not gotten any easier at all.  In fact, now reality has set in, I cry more, feel down more and often become less optimistic than I used to be.  We are seeing how much cancer is robbing each  family  member of their lives...Jack can no longer celebrate his birthday at Nodas (Japanese Hibachi) as Sammy really won't be able to go there with him and he announced with absolute childhood innocence..."I really hate cancer!!!" 

I really hate: cancer, the way my family is torn apart as we juggle the hospital, the sorrow in my son's eyes as he sits in his hospital bed for days, the fact that Sam says he 'broken', the multitude of versions we hear about the way Sam's treatment and experience will play out... no two doctors generally give me the same information, the fact that Jack has not had a guitar lesson or played a sport since diagnoses, ....the list goes on.  I HATE it.  I am going to hate it more if theory A is true.

Back to the Hospital

Sammy spiked a fever over 102 degrees on Sunday night, just as he was settling in for an early night ready to go back to school after the break.  The moment he heard the reading from the thermometer, he dove under the covers and cried out that he "didn't want to go back to the hospital".  He must live in fear of that every evening! 

The doctor was called and he confirmed that we needed to go to the ER.  Sam and I packed and left all bundled up to protect us from the bitterly cold night air.  Sam was not talking to anyone, he was too upset.  I had a knot in my stomach the size of a melon, and Brian was consoling Jack who was upset Mummy was leaving. 

We had the usual night in the ER...lots of waiting around and bloodwork.  Finally we were told that we needed to be admitted to CHAM 9 to get antibiotics and to be monitored.  He had a high fever and very low counts; his ANC was less than 100 (normal is over 1500).  By 4:30am we were in a corner room up on the ninth floor and Sam had been put into isolation.  My head was spinning as his counts had been good on Thursday, just three days prior, and now we were in isolation on the Hem/Onc ward. 

Sam had continued to have fevers up until Thursday and remains in isolation (now in his own private room - 915).  He has been so brave, having extra doses of oral meds to take and having to be accessed and prodded and poked.  It is impossible to rest in a hospital!!  Naturally, I have been trying to get to the bottom of things and have spoken to Dr. Gorlick, head of the division as he has been on rounds this week.   My main concern has been this: why is Sammy in isolation, with everyone wearing masks and treating him like he's made out of china if he is expected to go to school even with very low counts.  Dr. Gorlick explained to me that the fear is of bacterial infection, not viruses.  He may get a bacterial infection form food or just from his own stomach bacteria.  These are the issues which can cause problems.  If he gets a virus, which is can do at school, he may feel yucky but it is just like being another ordinary kid without cancer...stinks but it's not dangerous!  Brian and I are rethinking all the food habits we have picked up and feel a more conservative approach would be best.  Not that we haven't been careful when we knew Sam was neutropenic, but we did tend to order in or eat out when we thought his counts were up!  Not any more!!!

Thursday, Sam's counts were so low he needed a blood transfusion.  This was a very hard day for me as I began to get seriously concerned about the fevers and low counts meaning the infection was more serious than just a common rhino virus (cold).  I always dread watching someone's blood get pumped into my little boy, waiting and hoping for no reaction.  Sam was also very low in spirits and energy today (I am not surprised, he had no cells in his blood)!!  We watched a lot of Spongebob and completed most of a Hidden Picture book - he loves doing these and is very good at them.  Judy was our day nurse and I really like the way she is on top of things.

Wednesday, January 6, 2010


 One of the toughest aspects of dealing with cancer is knowing how to be a good parent while feeling like you are crumbling inside.  I stumbles across this article and it helped a little.  I posted all of it as links tend to stop working after a while and I may want to revisit it often as our journey along this rock road continues. 


The parent of the child with cancer: coping strategies

John J. Spinetta

San Diego State University

Paper presented at the 30th Meeting of the International Society of Pediatric Oncology (SIOP)
Yokohama, Japan (4 Oct 98), ICCCPO Meeting

It is a pleasure to be here speaking with you today.  I know that there are some physicians, nurses, social workers and other health care professonals in the audience today.  Please forgive me if I ignore you.  I am going to speak directly to the parents.
The first thing I want to say to the parents is that you are the experts. You are the individuals who know your child best;  you are the ones who know what your family is suffering;  you are the ones who are carrying the burden of the illness and its treatment.   I hope that you won't just sit there and listen as I talk;  I hope today to initiate a discussion.  My wish is that you will share your own experiences with one another later this morning, this afternoon, and during the next two days of meetings.
One of the basic assumptions in psychology is that it is much better to talk with someone about a problem than it is to keep it inside.  This is something that human beings have done for centuries.  When you have a burden and you share that burden with someone else, somehow the burden becomes lighter.  This, of course, is why parents of children with cancer meet with one another, so that they can share their burdens with other parents who are going through a similar experience. 
What I am going to talk about with you today is why it is beneficial for your children also to have someone to talk to about the illness.  If you are accustomed to protecting your child from awareness of the illness, this will not be a comfortable topic.  
One very interesting thing about children is how difficult it is to fool them.  We cannot try to hide the truth and have children not find out anyway.  When the diagnosis is made, children see their mother crying, they  see their father crying, they hear sad whispers, they overhear a telephone conversation with aunt or uncle or grandparents, they hear other children talking in the hospital. And when the child asks you, the mother or father, "Am I okay?"  you say "Sure, everything is fine." At that moment, you have broken a trust, a sacred trust, with your child.   Children not only have a right to know the truth, that have a right to hear the truth from you, their parents.
Now, what do you mean by truth?  We adults are strange creatures.  We live in the future and we live in the past.  We worry about things that may never happen, and we continue to bring with us painful memories of things that have happened in the past.   Children on the other hand live in the present. It is only when children are about ten or eleven years of age that they are really able to communicate with their parents at an adult level using adult language.  Before then, children have a very difficult time with words.  But the children still feel hurt and pain, just as much as do the adults.   Children look at their mother's face, children look at their father's face, and they know that something serious is happening.  In this way, the children sense the severity of the illness, even when they are only 2 or 3 or 4 years of age. And so the difficulty in talking to your younger children is for you to figure out how to share with them enough truth to make sure they understand what is happening, but not so much that you overwhelm them.  You don't need to share with your child the adult kind of truth, the one that contains the past and the future.  You do need to share what the child can understand.  For child of 3 or 4 or 5, for example, just knowing that he or she is going to the hospital that day for treatment is very important and quite sufficient.  The child does not have to know that this treatment will last for at least two years, nor does the child have to know of the potential fatality of the illness. Above all, the child does not need to pick up a parent's sense of pessimism.  The children are living in the present. For an adult, 2 years is a short time; for a child, 2 years is an eternity. 
Something else about children:  when they are young, children like to hear stories.  They like to hear fables.  That way the children can remain at a safe distance from the truths in the story.   In a similar manner, if I ask a child directly "How are you?" the child will answer, "I'm fine."  If I ask the same child  the question "How is your friend who is in the hospital room with you?" the child will typically tell me all sorts of things about this friend in the hospital room, things the child feels about himself but can more safely express about a friend.  Children are very aware of what's happening around them.  By using parables and stories with children, you can share with them at a safe psychological distance your own feelings about what's happening without all of the intensity of your own burdens. 
When as an adult you try to communicate with another adult, you say "Let's talk" and then you sit down and you talk.  That style of communication does not work very well with children.  With children, you must open the door to communication slowly, and let them know you are willing to talk.  But it is they who have to enter your door, and they will do so only when they are ready.  Communication with a child does not mean talking;  communication with a child means listening.   Communication with a child means listening carefully to what the child's needs are at the moment.  If an adult feels that telling the truth means burdening the child with all of the adult's fears, than the adult will say nothing.  But if the adult appreciates that the child does not want all of the adults' fears, but wants the truth at a level the child can comprehend and tolerate, than the adult can slowly begin to open the door to communication with the child.  
Now, if in some cultures the word "cancer" for the general public means death, then one might hesitate to use that word with the child.  However the child will hear the word anyway.  You should use cancer-specific words like "leukemia" or "solid tumor."  For your younger children, you might say something like "blood disease."  But always tell the truth.   You should never lie with the words you are using with your children.  Why?   Because they will find out anyway.  Eventually they will know.  If your child finds out from you that he or she has leukemia, for example, you can share with your child your own hope that he or she will be one of the cured.  You can share your optimism with them.  If, however,  your child finds out from someone else, the child may conclude with the common misunderstanding: "Leukemia means cancer, and cancer means death."  You will have placed a much heavier burden on your child by not talking about the cancer than you would have by talking about it.  You can't fool children. They sense that something serious is happening, no matter how clever you think you are in keeping the truth from them.
Not only can you not fool children, but there comes a time when it is no longer possible to keep up the pretense.  Increasingly, physicians are asking that long-term survivors of childhood cancer come back for follow-up clinic visits. That means that you will have to bring your children who were then 4 or 5 years old back to the hospital when they are 9 or 11 or 14.  If you didn't tell them at the beginning that they had a form of cancer, when do you tell them?  Will you wait until they find out for sure by themselves what they had always suspected?   The longer you wait, the more difficult it becomes to tell them the truth, and by then they will have lost confidence and trust in you.  Part of the total cure in pediatric hematology and oncology comes from a very active participation by the child who has then become a cured young adult. It's critical that they understand what their physical limitations might be, if any, and what the causes were.  It makes it much easier later if you are honest with your child from the very beginning.  
Another strange thing about us adults:  we think that our role as parents is to protect our children from harm. That's a false notion.  Protecting our children from harm is not our job as parents. Our job as parents is to hold our children's hands and walk them through the harm.  It's our job to teach them how to face the harm. And if we can do this for our children with little things when they are young, then they can learn how to face bigger things as they get older.  Then when they are adults, they will be more adequately prepared for adult life.  If, on the other hand,  when they ask us honest questions about the illness, we lie to them and say "It's nothing," they won't believe us anyway.  Instead, they will internalize, they will push it all inside.  If they learn when they are young to solve problems by pushing it all inside, then when they get to be adults, they will continue doing the same thing.  That's not a very good way to cope with life.  We owe it to our children not to try to protect them from inevitable harm but instead to teach them how to overcome that harm.  And if we can be there by their side from the point of diagnosis as they move into long-term survival and as they come back to the clinic for follow-up visits, they will not only continue to love and trust us as parents, they will have learned some of the most valuable lessons we can teach them. That is true love of our children, very true love.  
One of the errors we made in the medical treatment of children with cancer years ago was to think that if we cured the children of the cancer, we cured the child.  We have come over the years to appreciate the fact that the child is not the cancer, the child is a child who happens to have cancer.  The child has to be treated as a full human being.  If the cancer causes stress in a child, the child has to learn how to handle that stress. The child has to be cured psychologically and as a human being as well as medically.  And this is the thrust of pediatric medicine increasingly throughout the world:  treating the child as a full human being, explaining what is happening, and inviting his active participation in the medical treatments.   Sometimes we parents don't appreciate in our own children when they are young how truly strong and resilient children can be.  One thing I have noted in my 30 years of listening to parents with a child with cancer is how often the parents will say:  "I have learned patience from my child," or "I have learned hope and optimism," or "I have learned how to live the moment."  Children respond positively and optimistically because they live in the present. We can learn a lot from our own children. If we protect them from knowledge of their illness, then they won't have the opportunity to teach us how to focus on the present with hope and optimism.  Remember:   children can be strong.  Children can be resilient. We just have to give them the chance to become strong and resilient.
As parents, we often make the mistake of sacrificing too many of our own needs and the needs of the other family members for the sake of the sick child.  We modify family life and center it too much on the child who is ill.  That's a big mistake.  We find that the families who do best are the families who are able to keep their lives as normal as possible, keep the childhood cancer in perspective, and keep everything else as much as possible the way it was before the diagnosis. It's important not to spoil the child and ruin a marriage at the same time. Your child with cancer is still a child. Send the child with cancer back to school as soon as medically possible. Discipline the child in the same way you would have disciplined the child if the child did not have cancer.   If you say to your child with cancer, "You don't have to help me with the dishes tonight;  you don't have to clean your room;  you don't have to study,"  then you deceive yourself into thinking that you are being a kind and sensitive parent. Because when you do that, what the child says to himself is: "Mom is letting me get away with not doing my tasks. I must be sicker that they're telling me.   Maybe I'm dying and they won't tell me."  On the contrary, if you say to your child "You must continue with your studies;  you must help me clean the house," then what the child hears in his heart is: "Mom is treating me the same as before; I must be alright; I'm going to be getting well." 
If you have other children, remember that they too are still children. Because the mother and father find the burden heavy does not mean that they have to pass that heaviness on to the other children.  It is especially tempting to have adolescent siblings share the parents' burden.  Brothers and sisters have the same needs as other normal children; they should be allowed to live as a normal child or adolescent.   If parents are not attentive, they will often inadvertedly allow the presence of childhood cancer in the family to turn brothers and sisters into overly serious young children or adolescents; we can so easily and unintentionally rob them of their childhood.
It is also critical for the health of the family that the mother and father keep their own personal and intimate life alive as husband and wife.  I cannot tell you how many times fathers have come to me quietly after a family interview and said: "You know, when my son first got cancer, he wanted to sleep in bed with his mother; that was fine the first night or two, but after 6 or 7 months, it is getting very frustrating."   The basic advice that the well adapted families give as a recommendation to the families with a new diagnosis is to keep the family as normal as it was before the diagnosis, as much as medically possible, especially the parents' own life.  By keeping your own life normal and functional, you remain in the best position to help your child.  If you live your family life this way, then the childhood cancer will be placed into proper perspective.  And then, when the cure comes, the child can continue growing into his future. You cannot put your family on hold, freeze the family for two or more years, and then start again when the cancer is cured. 
I'm sure there are some mothers and fathers in the audience today whose child has died.   Even though we now have high cure rates,   a percentage of children will eventually die of their disease.  I can't imagine a worse pain than to spend the rest of your life living with a hole in your heart because your child has died.  As I listen to parents who have lost their child in the various groups I have spoken with, one conclusion becomes increasingly clear:  as these parents share their grief with other parents, their own grief diminishes.  Don't keep that kind of grief inside;   share with other parents who have gone through it.  Many of the parents I have met who have started parents' groups in their own local areas have been parents whose children have died.  It is their way of giving back. Giving back something in their children's memory makes some sense out of the pain that they and their children have suffered.
In the title of my presentation is the word "coping,"  how a parent deals with the difficult issues surrounding childhood cancer.  As we move toward a conclusion, it is clear that keeping the disease secret from your child does not help the parents cope and does not help the child cope.  As difficult as it is, you must learn within your own family to share the diagnosis with your child, to communicate with your child, to listen to your child.  That does not mean burdening the child with your fears for the future. It means living in the present with the child and when sharing remembering that the child is still a child.
Over the years of listening to families, I have found that there are five characteristics of the best adapted families, present at the point of diagnosis, that helped the families function very well throughout the course of treatment and afterwards.   One characteristic that well adapted families shared in common was that they had a basic philosophy of life, a philosophy that they brought into the diagnosis with them that helped them place the diagnosis in perspective.  The families that did not do well were those who kept asking: "Why?  Why did this happen to my child?" The answer to that question is that there is no answer;  no one can tell you why your particular child got cancer.  If you keep asking "why" you are going to distract yourself from the task of focusing on the treatment, and end up hurting yourself and hurting your child. The families who were able to somehow incorporate the diagnosis into an ongoing life-philosophy and thus free themselves to concentrate on the treatment phase adapted well.  
The second characteristic that well adapted families share  in common is a very strong social support system.  That typically  means husband and wife speaking to and listening to one another, and having a network of supportive family, friends, and other parents to talk to.  Now keep in mind that there is a difference between men and women in the way they communicate and the way they wish to communicate.  Not all men, but the majority of men prefer to talk just a little and then to go out somewhere and think about an issue rather than continue talking and talking.  Not all women, but the majority of women prefer to talk to another person for an hour or two or more about the issue, covering all of the details over and over in depth.  Both ways of communicating are good ways of coping. One is not better than the other.  The difficulty comes when the wife tries to insist on using her approach with her husband, wanting him to talk more,  or when the husband tells the wife she is talking too much and to leave him alone.  Each must give the other space.  The wife must be given the time and space by her husband to go out with her woman friends and talk; the husband must be given the time and space by his wife to go out alone and think things through, if that is what he prefers to do.  In addition, the husband and wife should continue communicating with one another on the key issues regarding their child's cancer.  It is important to have friends and social support systems outside the marriage, such as the kind of group that you are having here today and the kind of group Mr. Iwata has started.   Remember one of the key points of our talk today:  share with others;   get your pain out, don't keep it in.
The third characteristic of well adapted families, not only during the course of the life of the child but even for those whose child died, was communicating as much as possible at the child's own level, listening to the child.  We have never once had a single family after the death of a child who regretted saying too much;  the regret comes from families who felt that they said too little.  It's so important to talk to the children, in the manner we have described earlier.  
The fourth characteristic of the well adapted families was making certain the brothers and sisters became part of the family discussions about the illness, listening to their problems and issues as well.
The fifth and final characteristic is that the well adapted families tried to function as normally as possible, within the medical limitations of the treatment.  Remember what we said earlier, if you treat your child normally, he will not only pick up a sense that he is going to get well, but he will be better prepared for continuing his growth into adulthood.
These five characteristics help us predict which families are going to do well, and serve as guidelines for the help we can give all newly diagnosed families.
I want to leave a few minutes for discussion.  I want to thank you for listening to my words.  Keep in mind that what I have shared with you has very little to do with any level of expertise on my part.  I am not an expert;  all I have done is listen to families.  I share with you what other mothers and fathers have said to me.   You are the experts.  It is you as parents who must decide the level of talking and listening that will take place in you own specific family.  You must decide how much to share and how much not to share.  It is, after all, your child.   I'm just hoping that some of my words and some of the thoughts I have shared with you from other families can help you to talk a little more openly with your child, and can help you to look to other people not only for them to listen to you but for you to listen to them.  What you will find is that by listening to others your own burden will have been lightened.

Thank you for your attention.


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