Perspective

Well week one is over and Brinley's is kind of unraveling a little.  Today was her second dose of doxo and she didn't tolerate it quite as well, she lasted an hour before she was feeling sick, and had a bit of a vomiting fit. Despite the zofran she still has moments where she is just so sick to her stomach.  Yesterday she was very withdrawn and quiet, I asked her if she felt sick and she said, "no I just don't feel good today" when asked what that meant she said "I just feel far away from my body", I think that best describes what she's feeling internally.  Even though today was a short appointment, and by short I mean 45 mins from go, to stop, she was unusually cranky, and moody (rightfully so) but we've never had an issue with Brinley being a difficult patient until today.  It could have been the dex, or the foreign feeling she has right now, but she was a bit of a challenge.

In the midst of all of this I'm starting to learn more about myself and how I deal with the challenge of being a parent to a sick child, also a parent to a child who has a sibling that is sick. For one, I have way more patients that I ever gave myself credit for.  The constant "I want __" and "no I changed my mind" has made me realize this even more. I also have more emotional moments in the car when I'm alone, and I am able to deal with much more stress than I had ever imagined.  Something I have learned is that cancer has put my life in perspective, it forces you to prioritize in life and become focused on the simple things in life rather than the frugal, monetary garbage some people are fixated on.  I suppose it's a bit of an upside because your life no longer revolves around the nonsense that use to consume you, instead you take nothing for granted, no goal or step is too ordinary or too small  It's too bad it took my daughter getting cancer for me to see the bigger picture in life. But I'm glad I see it now.

1, 2, 3, GO

Today was the dreaded PEG shots, dreaded because Brinley doesn't handle needles oh so great.  She did however handle this better than I had expected, sure she got nervous and then she tried making deals, and as much as I would have loved to cut a deal with my 4 year old, it had to be done.  To say I'm completely exhausted is an understatement.  I feel as if I haven't slept in weeks, I'm worn out and drained, so tonight I'll be hitting the bed early.  Over all Brin has been handling the new protocol better than I had thought (seems to be a pattern here, maybe I need to give her more credit?)  She's very tired, and groggy, but the nausea has subsided for now.  I also expected her to eat tons and tons of food again, being that she's back on steroids, but that doesn't seem to be the case.  She says she's hungry, then the moment she sees food, she won't eat. Basically two drugs having two very opposite side effects at the same time, looks like chemo wins. Today they left her IVAD accessed because we'll be back in Thursday for chemo and blood work, no point making her have another poke.  On that note, today Brin was accessed for the first time without magic cream (numbing cream) she handled it like a champ, she cried a bit, but the pain was dismissed the moment they wheeled the treasure chest in. Thats my girl, keeping her eye on the prize.  Anywho, here are some pictures from today! 





I know the pictures may offend some people, and that is not my intention, but cancer is offensive and invasive.  I'm not trying to scare anyone, I'm just showing the most honest view of this disease that I can.

4 down

Last Thursday I faced my anxiety and fear of the unknown as Brinley had her first go at s-DI (standard delayed intensification).  I was nervous the night before, and on the morning of, once we got there we went through the typical mundane task of having her accessed, blood drawn, doctor appointment etc.  I told the doctor how nervous I was about this next phase and he did tell me that it's a bit tough on some kids because of the steroids and the amount of chemo they have.  The steroids make them consume a large amount of food, and the chemo makes them nauseated....so best described as temporary bulimia? In any case, her blood work as good enough that she didn't need any platelets, or RBC, so she received her vinecristine and doxo before her lumbar puncture, and that went well for the time being.





Before she was about to head into surgery, the nurse had come up to me in the waiting room and said that the doctor wanted to speak to me alone in his office and that they would keep an eye on Brinley. The first thing that crosses my mind is "oh no, bad news" it's a feeling that is best described as revisited raw emotion.  I've felt this once before and it was after Carter was born and he had his first shot.  The way he cried was exactly like the first cry right after he was born, and without warning you're flooded with this raw emotion, the same emotions you had the first time. Anyways, while I was sitting alone in the doctors office I had that same feeling the day she was diagnosed, the fight or flight feeling, the absolutely terror and agony that the worst it around the corner. I felt like i was going to be sick, or pass out. The doctor came in after about 5 mins, or what had seemed like a lifetime to ask me if I wanted to take part in treatment research for leukemia....yes that was it.  If I didn't like our doctor I would have stormed out...but I do like him, he's amazing, so of course I sighed up.

                                                                                                                                                                                                                        The next day how Once I got Brinley home she was ok, not great, but ok.  She was a bit sluggish and eventually fell asleep ever she was in full blown effects, she threw up a few times and was very sleepy and groggy and just out of sorts.  We didn't venture out and after the 3rd time of being sick I decided to give her a bath and maybe that would help to bring her around.  I know when I feel not so hot, a shower makes me feel human again.  It seemed to have worked with Brinley too, she of course fought the idea, but once I got her into the warm water she was much happier. I even got to sneak a picture of her dancing after her bath! All of that dancing must have caught up to her  though because she was pretty sick Friday night and most of Saturday.

Saturday was an exciting day for Brinley as well because she got to meet with her wish team from the "make a wish foundation"  They brought her wings, a necklace, a barbie, a backpack, quilt, crown, and a special teddy bear. Fortunately she was a good burst of energy for the first 10 mins they were there, then she slowly crashed and ended up napping for a few hours.

Brinley and her "make a wish" barbie

Tomorrow Brinley will receive two PEG shots in her legs, one in each thigh. Basically all cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot.  Asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die.  Pegaspargase is a modified version of the enzyme asparaginase. Then on Thursday she will have more vincristine and doxo.  It looks like a very fun week is ahead of us.  To top it off it's spring break for Carter and unfortunately due to Brinley's counts being jeopardy we have to stay in, I did buy a few games, and crafts to do with Carter since Brin will be more than likely asleep this week.

4 down, 56 to go

"no more meds mom"

Armed and Ready

This week has been brutal, sadly my concerns, thoughts and anxiety have gotten the best of me.  It started out with me shuffling and switching out Brinley's protocol sheets.  If I haven't explained this before, I will now, if I have forgive me and skip ahead.  Brinley has a protocol sheet given to me at the term of every treatment cycle, each treatment cycle is different, some are 30 days, some are 60, the next one is 90.  We're are currently facing standard delayed intensification, which is a 57 day stretch.  After thumbing through what appears to be the next 57 days of what can best be described as hell, I started googling.  I've been really good about not going "web MD" on this disease, basically because of the fear, it's the whole "don't ask the question if you can't handle the answer" theory. But this time left brain won. 

So I researched further into Doxorubicin a.k.a. Red Devil, aka Red Death.  Then I moved on to Cyclophosphamide, and Thioguanin, these are the 3 new drugs Brinley will be having this stretch of the race, all of their side effects will cause her blood counts to bottom out making her very prone in infection.  Never mind the vincristine, cytarabine, methotrexate, and the PEG shot she will have, yes that is 7 drugs, AND steroids...again. After my web MD session and an ativan I started to settle down.

The truth is that I can't barter with cancer.  It is what it is, and I have to dig deep and push through.  I often catch myself wondering how much more I can grin and bare it, and then I remind myself that I have no other choice.  If I can't help her fight this, then who?  So to say I'm prepared for the next 60 days, I'm not so sure that I am, but I can try.  I've learned to expect the worse and hope for the best. I've tried (the best that I can) to emotionally prepare myself for a changed little girl, both physically and spiritually, I've told myself that she will be sick, and tired. I've told myself that she will now wear the look of the "sick little cancer girl". I have stocked up on hand sanitizer, Clorox wipes, tissues, zofran, and a variety of steroid munchies.  In a way I feel like I have armored myself against what is to come.  I am fully aware that Brinley may not experience any of the common hardships that go with this part of her treatment.  She may fly through this unscathed, and pass with flying colors...and nobody wishes for that more than I do...but I refuse to be blind sided by this disease again.  I want to...no, I NEED to know exactly what could or could not happen, I need to know the good, the bad and the ugly and as much anxiety I have given myself over this, I'm ready for battle.

A letter to my son

Carter,

I want to tell you how much I love you.  You have been the most outstanding, sympathetic, sensitive little boy I have ever come across.  I want to tell you how sorry I am that you are hurting so much, and that dad and I have not forgotten about you.  I know there are times that you are angry and you tell us how fed up you are that Brinley never gets in trouble, and that everyone talks about Brinley and nobody cares about Carter.  That couldn't be further from the truth. You are a gift, you are my impossible dream of never being able to have a baby.  You have been through so much in the last 5 months, and have witnessed so many changes to not just Brinley, but to mom and dad; I'm sure you feel like a stranger in your own life.  I know you miss the "old Brinley" and that you long for a day where you will be able to play with your sister where she is free from pain and fatigue.  I wish I could tell you that day will be soon, but I can't.  What I can tell you is that you are an amazing big brother, and one day your sister will understand how lucky she is to have you in her corner.  I can tell  you that I love you more than I can ever show you or tell you, and that you are not forgotten.  I am grateful to have such an amazing little boy like you, you are a light of hope for me, you make me smile through my tears, and you give mommy strength to push back. Your bravery and compassion will never go unnoticed or unrewarded. 

Love Mom

Beware of the monster blood cells

Well it's been awhile dear ol' blog, and I'm afraid I've been a neglectful blogger, but I will make it up to you starting now.

The last weekend has been a whirlwind to say the least.  Almost like getting married, and preparing for a wedding.  You spend so much time preparing, and combing over details, then the big day comes and it goes by so quickly that you're left standing there with tears in your eyes and a box full of cash in your hands.  Well maybe not everyone has that happen to them in that way, but that was my experience. 

Brinley's fund raiser was a HUGE success, and by HUGE I mean it totally blew my mind.  I cannot say enough how wonderful it is that so many people have rallied around us to raise money for our little family.  When it comes to my 8 hard working extraordinary friends, I don't have enough good things to say about them, they literally render me speechless.  I really hope they all understand how thankful I truly am to everything they have done, the time they have taken away from their own families and lives, and all of the effort them have put forth.  If only everyone had friends like mine...

I must say, part of me feels a bit bad.  Sometimes I feel that I try so hard to control my emotions that I come off like a cold stone wall.  I put so much effort into keeping my tears on lock down that I come across unemotional, or even ungrateful?  Here's my theory, and this is just the way I see it: I have control over so very little in my life right now, that I have to dig deep and control my feelings because I'm so afraid that if I don't I will fall the hell apart.  Yes I have my moments, where I sit down and cry my eyes out, but it's when I'm alone, whether it be in the car, or alone in our room.  I will sit down, face in hands and cry until I can't anymore.  I cry about the love and strength people have given me over the course of  months.  I cry about my son telling me that he misses the "old Brinley", and how he just wishes she would play with him again.  I cry about my daughters pain, and her attempt to over come the chemotherapy aftermath. I cry because I am terrified everyday.  So it's hugely important that I don't come across as a bitch when I don't cry in public because believe me, there are a lot of tears behind closed doors.

Speaking of my son, I had a very in depth conversation with him tonight, it all started off about how he misses Brinley. He says he misses his sister, and that he wants her to get better.  He said, "when Brinley is all better, it will be my turn to be sick" I told him I hope that never happens, and he says, "oh I don't want cancer, just a cold or something". We also discussed cancer, Carter wanted to know what it was, when I told him it was a disease, he wanted to know what that was! So we have a very long descriptive conversation about diseases, and how the body works together as a team, and sometimes a part of the team doesn't want to work properly, and it's a disease.  We talked about how Brinley's blood was sick, and how some of her blood cells are red and white, and the cancer cells are not good cells.  He said the cancer cells are green with teeth...right, ok green with teeth..."sharp teeth!" he says.  So Brin has green cells that are really monsters with sharp teeth and they hurt the red cells, which makes her body not play on the same team very well, and the chemo is the teacher and comes into her body and stomps on the green monster cells.  GOT IT.

OH and then we got into discussing air molecules...how did I ever get so lucky to have that conversation?

We also chatted about aviation, and how "dad's daddy" knew all about air planes, and how Carter would like to know about air planes too. We talked about how grandpa Cary passed away "it wasn't cancer right?" and why "dad's mom" doesn't want to be in our family.  Here is where it gets very tricky.  I have a 5 year old boy who is insanely smart for his age, and he's getting family dynamic, and now I have to explain the crap shoot that it is.  I will not lie to him about it, I haven't lied about it yet, and I won't start now to spare anyone reputation.  But it's hard to explain such a thing to a 5 year old without them turning it into their fault, or having their feelings hurt. 

In other news, Brinley starts delayed intensification on the 24th of this month.  First she will have an echo cardiogram done on the 22nd, to they can get an image of what her heart looks like, then on the 24th she will start a new drug, doxorubicin, which effects the heart and causes several different problems with it.  She will also have another surgery on the 24th, and a RBC transfusion and will be given platelets too.  YIKES.  On the 28th she will have her PEG shots into her thighs, and then on the 30th she will have chemo again. It also appears that mid April she'll be hospitalized for 10 days to have her cytarabine everyday...and then...MAINTENANCE! ...at least I hope!  We will also be meeting with Brinley's wish coordinator on the 26th so they can start on her wish.  It is the ONE thing she is excited about!

Brinley's beaded journey to date. Bome of the people that went
to the fund raiser brought her a bead. The big green bead
marks off the start of all the donated beads.
Awesome.

Well thats all for now, it's late and I need to get some sleep. Until next time.