We did it! (enter Dora the explorer song) Brinley's counts were good enough for day 29 dose of chemo. I'm glad we got to wait a bit now, even though I was upset about it, I realize it was for the best. The bounce back she had was lovely, especially over Easter break. Blake had Thursday-Sunday off which was nice, we didn't get much done around the house, but we got to spend some good quality time together and with the kids. We've also been going to nice looooong walks in the evening together, it gives us time to talk, unwind and take a moments breather. However my parents will be leaving next week, so we'll have to adjust and take the kids with us...oh and probably cut the walk down to an hour instead of two.
On to Brin, today was day 29, she started off with the usual blood counts, and an 8 hour IV drip for hydration. The cyclo can cause kidney problems, so hydration is a must. Once she was good to go with the cyclo, they did an ara-c push, then hooked the cyclo up for an hour drip. After that she went down for her LP. This is where my sanity takes a time out. I always go into the O.R. with Brin, it's not easy, as I've previously stated, but it has to be done. This time as her eyes closed she started coughing. It's a side effect, but its the first time it's happened to me. I told the anesthesiologist that Brin was a bit congested and he made note of that. Skip ahead to 40 mins later. Brinley arrives from recovery, dopey...happy, but super dopey. We get her settled and let her have a snack and a resident comes over to chat. Apparently Brinley stopped breathing during the procedure. Um excuse me? "yes we need to draw more blood to see if her oxygen levels are ok, we'll send them down to respiratory and go from there" Turns out her oxygen levels are just fine, but her little congested nose got in the way somehow. Scary stuff, especially since I felt really sick walking out of the O.R. after leaving her. Never ignore your intuition, sometimes you don't realize what it's trying to tell you, and then later you have your "ah ha!" moment. But this time everything about me wanted to run back into that O.R. This happens, I understand that, and I'm not going to beat myself up about it, because it can't be avoided....but holy crap Brinley, stop scaring your mom!!!
Going to the beach with Papa
Moving on, she's in much better spirits now, she still has her IVAD accessed and will for the rest of the week. She had her nabilone and should be off to bed in a few minutes. Then it's WALK TIME!
Today was the dreaded day 29...or so we thought. I've had my own anxiety about this day for a week, mainly because I just got my little monkey back. We had such a horrible week before last with Brin being lethargic and sickly, that I was worried that we would be thrown back into that mess today. However Brinley did not pass her blood counts today, so we are delayed a week. Everything from Thursday has dropped quite a bit, most importantly her ANC has dropped a lot, and she don't want her to bottom out with today's doses of chemo.
That being said I'm kind of frustrated with the situation. I told the nurses on Thursday how she had been acting the prior week, and they never mentioned that if she was showing signs up fatigue that they would transfuse until today. So had I known that I could have gotten a CBC, and we could have given her blood products, and we would probably be able to go ahead with day 29 today. I blame myself because I'm usually neurotic about these things, and knowing very detail and what to do. Part of me thought I should call if when she was acting so sick, but she didn't have a fever, pain, cough, runny nose, constipation, diarrhea, any of those "must call in" signs. She was just very very tired, and "out of it". So now I face the anxiety of day 29 all over again, hoping her counts go up enough to have her weeks dose. I know this was to be expected, but it's one thing to try and mentally prepare, and another thing to actually have it happen to you.
Reading a book with Dad.
We're very lucky to have daddy
with us today. And lucky him, because
he gets to come back next week too!
Anyways, this week we'll have a mellow week, let Brin re-coop and attack day 29 next week. At least she'll be ok for the Easter bunny...
I'm a pleased to say after having over a week of sick little girl, Brin did a 180 on Wednesday. She woke up in a happy mood, excited for her spa day with grandma. Mom and I took her shopping wondering when and if she would flake out on us, but she didn't. Brin did great, she got her nails done, bought her hello kitty hat with Monday great gramma gave her, and then I got her a new pair of sneakers for Disney world.
Which brings me to another topic, yesterday we received our flight info from Make A Wish!! Excited!
I'm so grateful to my mom being here right now, I seriously don't know what I would do without her. She's been helping out in so many ways, weather it's keeping Brinley occupied, helping Carter with his spelling test, or just being here simple to get Carter on and off the bus. I'm also so thrilled that both of my parents are coming to Disney with us. Blake and I knew long ago when the kids were young that we wanted my parents to come, not just because they are family, but because the kids are so close to them, that having them NOT there would be almost weird for them. It now we'll all be traveling together for a lovely week in Florida. Very exciting!!!
Moving on to yesterdays events. We went to the hospital yesterday to get Brin's counts, her Hgb was 104, which is low, WBC - 7.7, PLT 587, her neutrophil was 0.7% which is also low. However everything is high enough to start her 2 week chemo regime on Monday. Blake has taken the day off of work because it'll be a long stressful day, and I'm so relieved for that.
***The last few days I have really personally struggled with this blog. I considered stopping writing because I've had a person(s) that are unwelcome in my life pop up once again and this time they are offended. I had a hard time debating whether I close this tiny window into my life, or keep writing because so many other read it and give me strength and courage through their comments and emails. I've decided to keep my blog going (yay!) This isMY outlet, this is how I keep people I care about up to speed on Brinley. No one is forcing you to read this, you do it on your own accord, if you don't like what you read, then please, hit the tiny "x" in the top right hand corner of your web browser. But if you feel the urge to comment, or email my family with anything pertaining to this blog, other than words of encouragement, or asking how Brinley is, I strong advise you to keep it to yourself.***
Today my little light lost her hair. It started to fall out little by little this week, and by today it was by the handfuls. She would lay on the couch and within minutes of laying there, watching tv a bald spot would form. I would run my hands through her hair and nearly pulled out all of the hair in the front. I thought I was ready for this.
After debating, blowing the fallen hair out of her eyes, picking the hair out of her mouth we decided to shave it off. I took her into the bathroom and let her see her hair, we had been telling her it was falling out, but she really had no idea the extent. She took one look and completely crumbled. I watched her put her hands on the glass and turn her head from side to side, investigating each bald spot that had formed over the course of the day. She started to cry and was frantically rubbing the tears away as if to "toughen up" so they came silently. My heart just broke for her. She sat down on the counter and cried when I took the clippers to her, I asked her if she wanted me to stop, and she shook her head. Now she won't even look at herself in the mirror.
Brinley later came downstairs and sat on the couch. Carter being the awesome big brother, sat by her, and then I heard him whisper, "you're still beautiful Brinley" And then I lost it. Pent up anger, frustration, sadness, heartbreak. I hate this disease, I hate cancer. I hate every second of this. I hate the bad days, and I hate that the "good days" can't compare to the "good days" she had when she wasn't sick. I hate that my baby's blood has this vile monster floating around inside, and if I could somehow, put her back inside me to heal her, I would.
I get that it's only "hair loss" but it's so symbolic and in your face. It throws you back into the brutal reality of what you're really dealing with. Sure you have good days that aren't met with puking, bone pain, hair loss, no appetite, too much appetite, bruises, irritability...but this has become "normal" for us and it's mind boggling. How did we get here?!
I'm done, I'm a train wreck tonight and I need some sleep.
Tomorrow I'm off to take Brinley to her promised mani and pedi...
Today is day 19 out of 57, which means she have a little over a month of this crap. Brinley has been pretty sick this week. I mean technically she's been "sick" for 6 months, but we rarely get a peek at how sick she can be. Sure she throws up, and has bone pain, but other than that she has been a trooper. She's been very happy-go-lucky through treatments, and even when she's not well, she's still laughing and smiling.
That came to a halt a week ago. I notice her complexion is grayish, her eyes are dark and tired, she's sluggish and dealing with a lot of fatigue. We went for breakfast Sunday morning and she climbed on my lap and snuggled in and tried to sleep for the duration for breakfast. She's always cold and requires no less than 3 blankets to lay down with. It's weeks like this when it the realization that your child has cancer slams into you like a ton of bricks. We've had "happy Brinley" for so long that we kind of forget the disease she is battling, a few weeks ago her color was good, she was laughing and playing, running around like a normal kid, and now she wears the look of a "sick kid". I can tell her body is worn out, her energy is drained, she tries to nap and re coop but she's struggling this week. It's safe to say this is when my anxiety is at its highest. Every time I hear her on the monitor, whether she's whimpering in her sleep, calling for me, or letting out a sigh, I notice my heart is about to jump out of my chest. It makes sleeping very difficult because I'm usually woken up by the smallest noise she makes, and it takes me a while to get back to sleep because my nerves are so on edge.
Thursday she will have blood counts done, first time in 3 weeks, and we'll see where she's at and if she can start her chemo on the 18th. I'm hoping it'll be high enough, but I have my doubts, and then again every time I have my doubts, it turns out fine. I guess it's better than thinking everything is fine and being crushed by the reality that it's not?
Oh a lighter happier note, I went out this weekend for a girls night out. Man did I need it! Nine of my wonderful lady friends and myself went out for drinks and dancing, and we had so many drinks that even the "not dancers" were dancing at the end of the night. It was great fun filled night of dancing, laughing, pushing through the dance floor to get to the washroom only to realize that someone on the dance floor had very very bad gas?! Needless to say I definitely needed a night out like that, I paid for it in the morning, but every second was worth it.
This may be brief, but it may not, I never know until I start typing.
Yesterday was Brinley's last doxorubicin dose (yay another last to add to my list) and she is handling it very well. Of course there is a new drug on board to help with that, and I will write about that in a bit. We haven't had any blood counts done for 3 weeks, but she will go in on the 14th for counts, and if she is where she needs to be they will start her ara-c (cytarabine) cyclo (cyclophosphamide),TG (thioguanine), and the IT MTX. So hopefully she will be ready to go.
I had a discussion with the Dr. yesterday about Brinley nausea, turns out the zofran isn't working, even when I stick in a dose of gravol in between the zofran, hours after it's been in her system she's back to the toilet vomitting up a storm. So Brinley's Dr perscribed nabilone or cesamet (same thing). Nabilone is chemically related to marijuana and belongs to the class of medications called cannabinoids. It is used to treat severe nausea and vomiting in people undergoing chemotherapy for cancer treatment. It works on centres in the brain to reduce nausea and cause sedation. So I gave Brinley her first dose at 5pm (it's suppose to be give before bed, but I don't give her any new medication without a chance to observe in case of reaction) Oh boy did I get a observation, Brinley was dizzy, and giddy, and talking a mile a minute with the odd giggle fest break. But once the high wore off she could barely keep her eyes open, she still has a bit of the effect this morning, but she is not throwing up and that's all I care about.
Maybe I should be more upset about this, but I can't really say that I am. At this point I'm willing to give her whatever the doctor says that will make her comfortable, being upset about it won't change the outcome or help Brinley feel better. I just have to roll with it and try and find something funny or happy in every situation.
Yesterday was a tough one. I woke up with high anxiety and my nerves jumping all over the place. My plan was to clean the house, but because my nerves were jumping all over the place I just paced around the house.
At noon I took Brinley to get her brother a new pair of rain boots and some groceries and while we were doing that she decided she wanted to cut her hair off. I asked her why and she said it was getting into her food and mouth and it "taste yuck". Plus the back is all broken off and it looks silly she said. So I had her call her dad on the phone and ask him if she could cut her hair, Blake told her he wasn't sure if it was a good idea, and then she started crying. Clearly she wanted this. So I sat her down on the chair and the lady clipped away, Brinley was thrilled.
I of course had a hard time with it, and I understand that it's "just hair" but it's the significance behind it. I wouldn't have to cut her hair off if it wasn't falling out in her food and on her face. Her hair wouldn't be falling out if she didn't have chemo every week, and she wouldn't need chemotherapy if she didn't have cancer. So when I hear "big deal, it's just hair" I hear "big deal it's just cancer".
My mom is coming on Saturday, and I am so relieved. She just had a 5 year check up on her kidney which included a biopsy so there won't be any heavy lifting for mom. However she will be here to send Carter to school and welcome him home which is exactly what I need in the up coming weeks. I'm definitely looking forward to her visit.
Tomorrow Brinley will have the last of her doxo drip and she will have vincristine as well.The following week she will go in and have blood work done, and then if everything is good we will start ara-c, IV cylco, TTA, IT MTX on the 14th. I'm hoping after this doxo dose her counts will recover enough so there is no set back, but I'm also aware that it possible to have several set backs in DI due to bad counts. Guess we'll have to wait and see.