Sunday, February 11, 2018

Love...And the Flu...

Happy love month! I am sludging out of the trenches because my beloved Ryder caught...THE FLU. Flu B to be exact. Sent me over to the dark side quick with that one. I mean. I literally scrubbed until my hands cracked. I know you can't outsmart a germ, but I sure did try. After a few days of Tamiflu, lots of popsicles, separate quarters for the kids, we broke the fever. The cough slowed down and playtime was back in full force. Now, the nights were the seventh circle of hell because all in the meantime, he was teething his back two molars. SO. There is that. Sweet baby Jesus, it just about broke me. I balled my eyes out to Jeff and he swooped in to take over the madness and over the last few days I have gone to bed at 9 and slept straight to 7. Ryder is now past the tooth cutting part, so I sent Jeff back to nap this fine Sunday afternoon to catch him up. I am telling you what. Teamwork is no joke. Whoop. Team Brown is a well oiled machine, but it won't hurt my feelings to be benched for a while because there is nothing going on!


We have a fancy dinner tonight put on by Heros for Children. It is a fantastic organization that gives a nice dinner to parents and takes care of and spoils the kids with fun and food. I AM SO EXCITED to dress up and drink champagne and know my babies are in the next room having a blast. EG's hair, eyelashes, and eyebrows have started coming back in and she is SO gorgeous. I mean, she has always been...but the tones coming in are what people pay for. I too am growing my funky haircut out. I am dreading the awkward grow out phase, but am SO excited for what it represents. Movement on our treatment. I am not afraid of some bobby pins, so watch out world. I may be looking cray for a while!

I hope you are staying healthy out there and avoiding the blasted flu outbreak. If you catch it, call me and we can cry together. The flu made me cry a lot, but we made it and you will too! Let me look for the sunshine so I can get all fancy tonight to celebrate the art of LOVE! What are you guys doing to celebrate?

Until Next Time

-Jenn

Monday, January 29, 2018

We Made it Over the Hump...

Holy Mother of Delayed Intensification. We made it, y'all. I knew that we would hit a trip or two to the hospital based on what EVERYONE said. So, it was hard to sit by and watch on the sidelines as I knew something would hit my girl. And, it did. We had a night from 102 fever, which turned out to be a cold and one night. A few weeks later we hit a bad cough that I was insistent that we come in to check in to the hospital. The doctors were not as concerned, but I just asked if we could and it worked out because she needed fluid and a blood transfusion from RSV. So, I am glad to hit it head on and took care of it. I swear when we came home from our second night, it was like we walked in as new people. Her numbers had hit zero the week before and so we were trending UP. EG's white blood cells were kicked down and her body was taking over to do their thing. Praise the Lord. I HATED this phase and I now feel like a weight has been lifted. Kind of like we tipped the top of a roller coaster peak and we can start heading down. Now, I realize this ride is not over, but boy that first big loop to loop is always the scariest. We have been excited to see her hair to start coming in and setting up to start our last phase this Thursday. Then, we hit maintenance. This is a huge point where we then just get into a monthly routine and we get to go back to school and dance and anything else we were doing before August 4th. So, I am starting to relax a little. A little, mind you. I am not finding myself so confused about how we got here in the first place. Perhaps I am at peace with it. Not so shocked. And just that took a solid six months. Bad things can happen to anyone and our card was pulled. It was. So, we fight on. Day by day, we try to find our happiness again. Slowly, I am seeing the light. Praise the Lord.

Now, tell me this? Do you ever go out and feel like a wet rag? For years, I have dug deep to make it. You guys all know this because you are here. When you make it, you aren't exactly a happy, go lucky kind of gal. I used to be (I think!). Even after Ryder I found that silly part of my brain for the most part. But, geez. The whole cancer diagnosis has taken the leftover section of my brain. I went to the movies with a few good friends. Friends that are my sisters. Sisters that I trust and admire as people with good hearts and loving arms. Do you get the point? People that I can be myself around. I felt quiet. I felt like I had nothing else to talk about besides my end of things. Ellie's health, Ryder's head, Nolan having a hard time with all of our ups and downs (Which he starts play therapy this week:). And, I feel like people don't like to complain/talk to me because it is always prefaced with, "This doesn't compare with what you are going through."

Moral of my story.

What if I have lost my fun side? Even with my besties, I almost felt awkward around myself. What if people don't ever offer what is going on in their lives because they don't feel like it compares. In my eyes, it totally compares. Because that is what matters to them and what is going on. So, complain or ask advice dear friends. I will pay you a hundred dollars to do it often. It makes it feel like life is moving on as it should.

OK. I am rambling. All over the place. But, oye...that is my brain! Ha. That makes me smile. Just little glimpses of me come out, so yippee! I realize that I will be a little different, but I can't handle being quiet and not much fun. I can not. So, I will plan a damn movie date for as many weeks as it takes to make jokes and giggle at the man bun in the row ahead of us. I will make that vow to you all.

Love you guys.

Go find the sunshine, y'all.

-Jenn




Thursday, December 21, 2017

Chugga Chugga Chugga...

We are trucking along this dreaded phase. We are creeping up on halfway of our second week of steroids. We are done with the M,T,W dreaded Bactrim. That is in place to avoid pneumonia, but it is big and our arch enemy at this point. She is not yet STARVING and not sleeping. Since we are on one week on and one off pulses, the side effects are delayed (Thank God). But, we are literally on the downward slide of the first part of this phase and I am feeling better already.

HOWEVER, we are in the bubble phase of things. Her ANC is at 200, which is LOW. Under 500 is very open to infection. SO, we are home. Crafts, games, cooking. You name it. All while keeping the boys from wrestling to a disaster. I am just making it and when Jeff comes home, I am outta here on a good day. Some days I need to be here, but it takes a toll on me. But, I figured I can handle me after this phase, because it is time.

 I had coffee with a new friend the other day and it was SO good for my soul. Adult talk, open air, fresh things to gab about. I needed it. She is wonderful and I love when you meet someone that makes it click. With no effort. It just does. It was a gentle reminder to take care of myself. I know that is easier said than done, but it does matter. I have ordered and received Young Living Oils and had a friend come over to teach me the ways. I am in square one, so I took notes for my journey with them in depth down the road. But for now, I sleep with lavender and made some rollers to help with my TMJ and calming and peace blend. I ingested a drop of Frankincense today and that was a step too much. Atleast under the tongue. Nope, yuck, blah. I am on my 3rd cup of applesauce to wipe that flavor right away. Running is a come and go with me. I really enjoy loud music classes at the gym, but yeah. Enough said. Jeff ordered a treadmill for himself because he had started his new job which is a lot of driving and eating out with clients which shifted his eating habits in a bigger pants size way. We just decided to bite the bullet and sure enough he is back on his new normal saddle in a healthy way. Which I am using the treadmill as well and it is no lake run, but it will do.

So, needless to say I am trying to find my balance again. My me. I think as moms we struggle with this as is. But, my life shifted so hard and fast that I will be a better support system if I can make sense of my core happiness. Do you guys feel this way? Like a tune up on your car. Sometimes you have to add and change different things to keep it up and running like a fancy car with a smooth ride (with seat warmers). I love a good seat warmer. Anyways. I had a five year old begging that I find buttons for his art project. SO, duty calls! Pray or me that this oil taste leaves my mouth and I can stop ingested applesauce. Small goals, right?! I will check back in when we hit our second mini phase. But until then, Merry Christmas and sending my love to you all.

I am thankful for you.

-Jenn

Friday, December 1, 2017

Christmas is Here...

Well. Shit. The second I said November was flying by, it stopped and moved at a snail's pace. I guess that is what I get for being all vocal about such a thing! Anywho. We made it. December is here. My kids are beaming because of Elf on the Shelf and we officially get the show on the road around here. I usually don't decorate until then, but our new neighborhood is blowing up with some lights and inflatable Christmas characters. I mean, the day after Thanksgiving followed with decorated stop signs all done by volunteers in the neighborhood. I LOVE IT! Anyways, my kid looked at me like I had a third eye with my delayed decorating rule. The inflatable turkey came down and the inflatable Santa came up (Shout out to Sarah and Amy for gifting these things to us). I am not a spirited decorator by any means for holidays. Don't get me wrong. I like a really pretty set up, but the whole house does not turn into a winter wonderland. Fast forward to my children. They are made with elves blood. They want to sit on candy cane chairs and insert a jolly bit of cheer to every square inch of this house. Some of my teacher friends share this spirit and understand my predicament. So, they always add to my collection to hold my children over with glee and spirit. I am trying to please their needs, but I guess their spirit counterparts can see I need help. Ahhh.....what friends are for!

EG has absolutely nailed this last phase of meds. And I don't like to use the word chemo. I don't know why. I almost don't want to give them my attention and it is such a packed word, with so much story behind it. So, around here we say meds. Whatever helps, right?! She is starting her next phase on Monday and I have come to a good place to get it on the road. No more panicking..no more assuming the worst. The nurses just hold my hand and say take it one day at a time. I have a doctor on call 24/7 and I will just monitor a fever, which is what we have to look out for. Then we go from there. We can handle this. She has not had any issues this far (big ones by any means), so I will hold tight to that bit of glorious news and march into this with a spirit of confidence. My friends and family are in this with us and I feel like we can make the home stretch of this treatment, get to maintenance and then get into a settled routine that starts to look like a little normalcy!

I suppose that is it around here. I am feeling pretty stretched thin with EVERYONE (except me of course!) having a cold, including Jeff who had it the worst. I am drained down. So, he scheduled me a message for the morning to get my kink out of my neck. Rub hard sister friend. Rub hard!

I am finding the sunshine these days in spurts and my Lordy, it is good to see her again.

Until Next Time

-Jenn


Wednesday, November 15, 2017

Keep a Truckin' November...

November, November, November...you are flying by and I LOVE it. I normally am a "enjoy the ride" kind of gal, but damn...go, go, go days. With every day, we get a little closer to finishing these phases of treatment. We are almost done with our 3rd phase and then we have 2 more before we start maintenance, which is where things s.l.o.w down and we get EG back in school. Then we do that until October 11, 2019. That is when we finish up and put this journey behind us. Well. Not that easily and simply, but you know what I mean. The treatments and chemo, etc.

On November 30th (if her numbers keep up) we started delayed Intensification, which is going to be where we hit up the steroids again for 7 day pulses. Nobody is excited about that raising its ugly head again. However, opposed to 30 days straight, we do 7 day pulses, two times over 4 weeks. So, hopefully, all the nasty side effects won't join us. I have heard it is short enough to hold them off and I praying that is the case for EG. Plus, just a hodge podge of other meds. So, I have decided to take it as we come and she has proven my medicine fear wrong all this time, so we will keep that going. :) Smile...blink...breath.....repeat:)

Jessica. Girl. That boy Ryder is exploding with his language. His teachers are even saying that is literally talking for all his friends at school. Just hooking everyone up. Ha. He is the old man of the group, so he is just showing his muscles, I guess. My happy heart loves it so much because I would never thought I could trust another person to watch him, but I have. I LOVE that he has found a loving spot and I see him feel safe, loved, and having SO much fun. He needs this and I need to be able to focus on my gal pal, so I will forever be thankful for this little spot! On that note, we will have some closure to his case in January. Let's all hope justice prevails. And I will leave it at that;)

You guys and gals have a good day and don't work too hard! Enjoy the sunshine and do it early because if you too long, that sky will be dark and cold. Not ok.

Until Next Time

- Jenn

Monday, November 6, 2017

I Promised to Come Back...

Hi all. Well. I just reread that last entry and I poured my heart out on the screen, which is almost nice. I got to see such a vulnerable state I was in. Just a bad day. A sad day. However, as I went to bed I told Jeff that there is only one way to go and that is up. And sure enough, my swollen eyeballs came back down, my makeup was put back on the next morning, and this girl has come back to the bright side of things. I silenced all my mom groups that I had been added to and I peek in when I feel like it, on my own terms. That control is nice.

My conclusion in all this is that I literally thrive with a day by day philosophy and I have a hard time feeling too down when my girl is walking me to a local joint to eat lunch, shopping for winter clothes for her brothers, playing connect 4 on the couch and low and behold watching her play soccer with her brother and daddy. I mean. What else can I ask of her while on some added chemo every ten days? Her numbers are "As beautiful as Ellie", which is what her doctor said last week. So, today I choose to celebrate the good parts. I know there are days to be sad, which is part of being human, but I realized after every one of "those days", I am a wee bit stronger. A tiny, little bit.

SOOOOO, there is my better day post. I knew I had to because I feel more centered with a little of every emotion! Let's change the subject...please!!?! My middle son is busy at being five. He just wrapped up soccer and has picked karate. He is always punching pillows and flying through the air to roll, so I decided to channel his actions. My baby boy loves chapel and they all ride on the little buggy that holds six kids at a time. Oh my Lordy, it is precious. But, he is loving school and asks to go, go, go every morning. My sweety is settling into his new job and even made his bonus on this first round, which he was SURE he would not. I think that helped him feel like his hard work may seem trudging along as he learns the biz, but he will come out on the other side with a smile on his face and a love for what he does. The art of a challenge as a career is suiting him well:) I, on the other hand, have something up my sleeve for next year, but I am not going there just yet. We have a few mountains to climb with treatment and I want to focus on that first, but options are there!

OK guys. How are you? Are you still there? Give me a shout out so I can see life on this blog. I love to see you guys on the other side! Find the sunshine today and take a deep breath, and focus on the now. It is working for me and hopefully it will for you too!

Until Next Time-

Jenn

Friday, November 3, 2017

Spiraling...

Hey guys. I am not going to lie. I am down today, completely overwhelmed and really just trying to keep it together. I feel like my cancer mom world in crashing down on me. I have people from all over the realm of this process reaching out and being SO kind to offer programs and support groups and, and, and. I woke up today to a full inbox of moms from all walks of cancer life welcoming me to a group and it is SO nice. I really appreciate the willingness of these strangers to connect and offer any advice and comfort in a heartbeat. But, I am thinking that I don't move this fast. I am an observer by nature. I watch and listen to new worlds that I am thrown into. Well. Apparently going head first is a trigger for me to freak the @beep@ out. I am spiraling, worrying about relapse, not getting a healthy enough diet in her, long term effects. I mean, I can't even get a focal point on my freak out.

I have got to put my phone down and step away from the support. I hate this more that anything on this Earth. I HATE it. Not the support, but the fact that we are here. Sometimes I get a sudden shock in my stomach that my first born, who has been my healthiest of all my kids, was hit. I almost feel in denial, and this is like the flu that will eventually go away. And, I am in full belief that it will, but do I wake up every day wondering if it will hit again?

And this is where I tell myself, in a very stern voice, that I can't live this way. what a waste of time and energy. I could also think this about a car wreck, really. I don't do that. I mean, the PTSD kicks my ass in a big way. So, for now I know those brave and strong cancer moms are out there with open arms, but I can't right now. Maybe never dive in to be a discussion with so much going on. I need to regain my focus on my situation, my baby girl, my family and figure out how to do that. I have caught myself have more better days than bad (which is a good step for me!), so this is just the process. But, I know a trigger is to get ahead of myself. I know this and have to know where my boundaries lie. God help me.

On a totally different note, Ryder had his yearly MRI and check up with Dr. Weprin. He is doing great. He has an arachnoid cyst, which he says in small and is like a birthmark. I know they lie in bigger heads and most people only find them with  an MRI for something else. Anyways, he is doing AWESOME. SO, that is wonderful news and much needed. Ha. My life makes me roll my eyes and wonder who I pissed off. If you are reading this, "I am sorry. Very, very sorry."

Well, for those of you that are checking in, thank you. I am making it a goal to write on a better day to brag about who well Ellie is doing and what a brave and strong girl I have on my hands. But, for today, I will cry and feel sad. Let it get out of my soul. It is the process, from which I know and it too shall pass. I will find some sunshine today because...I need to.:)

Until Next Time

-Jenn