It's been a long time..

It's been a long time since I've sat down and actually published a blog.  I have one that I started, then walked away from a week ago.  I've been finding it hard to write without sounding like a robot going through the motions trying to get to maintenance with my sanity in tack.  So lets rewind to last week...

Looking out the window, wanting out.

Monday we were released from the hospital, it felt more like a jail break, Brinley was giddy to go home.  Being stuck in a 14x14 room with nothing to do...and with a very demanding, bored, impatient 4 year old is no holiday.  Although I don't blame her for being grouchy most of the time, and I'd like to say she actually took isolation better than I had expected.  However near the end we were both getting on each others nerves, it was very clear that we don't make very good roommates.  Over the weekend Blake came in and rescued me, but only after driving 10 hours to drop Carter off with my parents for the week.  Did I mention my husband is a saint? That's right, he drove 10 hours, then volunteered himself to be an inmate of 4E3 room 12 for 24 hours.  I was happy to go home, but found that there wasn't a thing for me to do.  Blake had taken care of the laundry, dishes, vacuuming, etc etc etc...So I had to sit in an empty, quiet house, by myself.  Normally I love moments like this, but this time I felt overwhelmed and sad.  My daughter was in the hospital, her body trying to recover from an infection that most of us get and can fight off before we even notice or get sick.  My son was 10 hours away because we didn't know what the next week held for us, and simply because we couldn't take care of him, see him off to school, welcome him home, etc.  That in itself was a huge hurdle for me.  I just wanted my family together again.

The weekend came and the doctors had hope Brinley would be released early because the infection only turned out to be strep.  They did another blood culture that came back negative which was great, but we still had the neutropenic factor staring us in the face.  Her counts were recovering, but she didn't have an immune system.  So instead to being home for Sunday, which I had hoped, Blake and I were able to slip away for a few hours (with the help of our friends)  and have our 6 year anniversary dinner.  How things can change in a year...Last year we were beach side, drinks in hand, celebrating 5 years of marriage in Mexico.  This year we've exchanged that for the Stollery Children`s Hospital.  But one thing has stayed the same, I`m still sitting beside this wonderful guy who is keeping my sanity intact with his jokes and easy manner when dealing with this challenging time.

During last week Brin and I stayed home, other than our daily trips to the hospital to have IV antibiotics.  Her blood counts have been picking up  by themselves which was a relief.  For a while her hemoglobin was sitting around 72, and then jumped to 89 so there was no need to transfuse.  My parents returned with Carter Saturday evening and I was thrilled to see that smiling face again.  I missed him so much. 

Tomorrow Brinley will start maintenance.  Of course this is based on her blood results, and something tells me she will be delayed a week, but nonetheless maintenance is on the horizon.  I'm a bit anxious because she will have another lumbar puncture with chemo, and as you know, she doesn't have much luck with anesthetic.  So on top of being witness to watching her get put out, I`m constantly wondering, "what if she stops breathing?", "what if they use a bigger needle again and she has migraines for the week?", "what if she wakes up again in the middle of it?"

I'll be glad when the dust settles.

friday the 13th

I should have updated this yesterday, but I was too busy running around preparing for what I was told would me  10+ days in the hospital.

Wednesday the doctors came in and informed us that Brinley's blood cultures came back positive. There is an infection gr owning in her central line leading to her heart.  So they switched up the antibiotics to two different kinds, one is very 6 hours, the other is every 8 hours.  The type of infection is gram positive cocci in chains, which could be a number of different infections.  We were told yesterday that nothing had come back from the labs, so my mind was in over drive on how I was going to manage the next 10 days in the hospital.
 I ran home and packed a bag for Carter because he is now being shipped off to Gramma and Papa's house.  Unfortunately, Blake has meetings, and I'm stuck in the hospital with Brinley, so Carter is going to have some good one on one time for grandparents.  He's really excited for it.  I did get to spend sometime with him Wednesday which was important to both of us, I miss him like crazy when I'm here.

Thursday was a hard day, the whole agony of being away from home and locked in this 14X14 room was getting to me.  I missed my husband like crazy, and knowing that he was only minutes away was driving me nuts. Brin had another platelet transfusion because she dropped from 23 to 9.  Her WBC was at .6.  She also received many her daily doses of antibiotics throughout the day, and refused to eat or drink anything.  She was lethargic, and moody to boot.  After 24 hours of her not eating, the doctor came in and suggested they insert an NG tube so she could be tube fed.  This morning she was eating.  Thank goodness no nose tubes!  She's not eat much, but at least she's eating, even if its only yogurt, peas, and a few crackers. 

Also the news came back that the virus was indeed strep, which means we should be going home this weekend! Carter will still be going to my parents house, because Brinley will still need IV antibiotics everyday for 10 days, but it's a lot better than having to stay here. Her counts have picked back up, platelets are 93, WBC .9, Hemoglobin 87.  She may need a blood transfusion before we head home, but that will just give her an extra push to feel better.

All you need is love



This was written on the whiteboard
in Brinley's private room.

Well...we're in the big house again.  Big house as in the hospital, not jail, although we're in isolation so it's kind of like jail, but nicer.  Yesterday Brinley was having issues regarding her temperature, nothing that was considered a "fever" but more or less elevations.  Her pattern was 99.9, 97.5, 100.7, 98.3, I called the oncology unit to let them know and they told me to keep her hydrated and keep an eye on her, which I did, so when she spiked to 101.3 I called them to let them know I was bringing her in.  When we first arrived  the ER was packed, I've never seen it that full in my life, they must have had at least 5 ambulances all at once, plus a full room.  The triage nurse told Brin to go find a seat in the waiting room, which is a HUGE no no when dealing with compromised immune systems.  I informed her that we were told in the beginning that that we're never to wait in the ER due to high risk infection, she gave me her biggest "I don't give a crap" look and told me "tough".  Well tough for you missy because I called Brinley's oncologist and told him that we're sitting in the waiting room, in a matter of seconds after hanging up, the phone behind triage rang, there was a "yes...yes...I'm sorry" and we were called back.

The nightmare didn't end there.  We got into a room in the ER and they did a vital check, and a temp read, which was at 104.  They then decided to go ahead with antibiotics right away, and then draw blood for labs.  The nurse came in and held out two different IVAD needles and said, "which one do you want to access her with".  Excuse me?  I'm not doing your job...I've never accessed Brin, and I've never wanted to.  It's not bad enough that I have to drag her into the hospital kicking and screaming, now you want me to poke her?  She then said, "ok well...which needle do they use on her?"  I have no idea! I assume it's the small 3/4" needle because of her size, so she preps the 1" needle.  As another nurse comes in, she gets the IVAD half way in and says, "there we got it" and I tell her, "no it's still half way out of her chest"  so she bares down on the needle to jam it through....Brinley is screaming at this point and I tell her to stop and I want another nurse and a smaller needle.  So smart nurse #3 comes in, accesses Brinley without an issue WITH the smaller needle and we're done. 

Labs come back 30 mins later, Brinley's hemoglobin is 130 (great) white blood cells are 4 (bad bad bad) and platelets are 9 (super bad).  All defenses are down, and she has no immune system.  This was something we had kind of emotionally prepared for, and it was a huge possibility that this could happen during the last part of standard delayed intensification.  But it's a whole new feeling in itself when you find out you're being admitted, especially since we haven't had to be admitted since we left back in November.  For that we're lucky, and the fact that this is her first time being neutropenic is lucky as well.  But I did get a little anxious about having to stay here again, it just brings up old feelings, and memories of walking the hallway late at night trying to hold myself together. 

Getting platelets

Today so far, Brinley has been remarkable.  She's full of energy, happy and fever free.  We have to wait for her cultures to come back which takes 48 hours, and she also has to have a good run of antibiotics for 3 days.  We'll be here until at least Thursday they say, possibly longer depending on blood tests, cultures, and we need to be fever free for 48 hours.  So there is a lot riding on discharge, but there's not much I can do except enjoy the sun from the 4th floor window.





Happy

One Hundred and Sixty Nine

Friday was the last day of hard core chemotherapy for Brinley.  I've never felt so many emotions all at once.  I was happy, relieved, frustrated, angry, and sad.  Of course being happy and relieved stems from finally being able to see the light at the end of the tunnel involving this disease.  I'm thrilled that we're "getting there" we're getting to a beautiful place of healing, and we're now steps closer to being cancer free, or "cured". This is a milestone in a long race, and something I have learned in the last 7 months is that there is no small milestone when dealing with cancer.

However my frustration, anger, and sadness stems from the one hundred and sixty nine days my daughter has spent in pain and distress fighting this evil disease that threatened her life.  I'm angry because she's 4, and has had to endure a lifetime of medications, surgeries, procedures, and needle pokes that most people have to endure during a full lifetime.  I'm frustrated because cancer isn't prejudice, his victims are chosen at random. I'm sad because Brinley had her first soccer game, it was the first time she refused to take her hat off, she was worried people would laugh at her, or ask her why she doesn't have hair.  Even at 4 she has an idea of self image that cancer has tarnished to an extent.  There are days that she does amazing and could careless that she doesn't have a strand of hair on her head, and there are days that thinks she's ugly.  The other days I asked her, "what am I going to do if I can't kiss your beautiful head?" and she said, "you'll just have to learn to like kissing my hair"  fair enough.

The next 2 weeks we have blood draws, we have one on the 12th, and another on 19, and everything is good on the 19th, she will, get another dose of chemo. Then long term maintenance.   I do expect her to be delayed the week of the 19th, it seems that it's pretty common, so if that means more relaxing, then so be it.  Brinley and I both seem to be battling a cold, and I'm fingers crossed that it doesn't amount into something serious for her. Her immune system has been taking an ass kicking due to drugs, so hopefully it'll pass quickly.


So here it goes, 169 days down, 603 left until off treatment...4840 until she's cured.

Unphased

Beaded Journey, 19/11/2010 to 03/05/2011

It's Tuesday, that means Brinley has 3 more days left of ara-c and then we have a 3-4 week breather from all of the chemo.  I keep telling myself it's 3 more days, and then we can let her rest.  A few more weeks then we're in long term maintenance, and with a sigh of relief there is also a tinge of fear.  You mean I won't be getting blood results every week?  You mean every sniffle, cough, fever, complaint of pain will set me off?  And then what after that?  When she's off treatment, it feels like a nail biting game of "wait and see"  Don't you wish you could just get a break from yourself sometimes? I tell ya, I'm getting very sick of myself.



Pushing around Steve and her new blood.



Last week Brinley did awesome, despite the chemo everyday she is truly a remarkable little human.  To top it all off Brinley's hemoglobin was 60 today...yeah 60! She was full of energy and happiness and she was sitting at 60 the whole time.  The doctors were blown away on how lively she was for being so low in counts.  Needless to say she had a transfusion, she had to be given 2 full units of blood to bounce back and also give her a little booster for this weeks chemo.  She sat for the whole 4 hour transfusion and didn't say a word, she watched 2 movies, we played a few games, read a few books, but she was absolutely perfect. She did ask why she needed new blood again and I told her because her old blood needed help, and she said, "why because my bones are making sick blood?"  Something like that Brin.  Tomorrow we're back at it, but only for a quick little chemo push, and back home to send Carter off to school.  She also starts soccer again tomorrow evening *gulp* she's looking forward to it, even if that means she wears a jersey and sits on the side lines cheering.