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 :(

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:)

JACK

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.

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!

Yoyo!

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

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.

Forgetful

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! ;)

Some Christmas Pictures to Lighten the Mood