WELLLLL.......hello there friends. How are you doing? I am sorry I have been quiet on here, but this time it is a sign of my lil' family being super busy! In a GREAT way! We are able to go out and do things, eat dinners, play on playgrounds, enjoy friends at any given moment. It may seem simple, but boy does it become special when it is taken away from you. EG has been back to school since March 2, and she has missed one day from being really tired. She wakes up before us now, gets herself dressed and just relaxes while the rest of us sludge out of bed. She is enjoying her schedule and seeing her buddies and teacher daily. It makes me smile from ear to ear.
We have had E and N in play therapy to work out the kinks of this rollercoaster and I felt SO happy that they were each moved to an every other week schedule. Whew. Progress is a beautiful thing. Our bank account, miles in the car, and overall schedules are happy about this and both counselors have seen the corner turned from both kids. We still have some anxiety issues to iron out, but that is a long term focus and I am right there with them. We are a work in progress, but I suppose that is the way it is supposed to be. Right?!
My newest challenge that I feel weighing heavy on my heart is day to day living. Let me explain. Nobody can tell me why E got this horrid disease in the first place and I find myself to be a level headed gal. I seek balance from everything in diet, electronics vs. outside play, spending on fun vs. practical purchases. It's just the Libra way. I find myself stressing over soaps, germs, diet, water, etc. You name it and I am challenging myself to find the purist possible option for the kids. I have researched and made changes where I can to improve to clean living, but I worry about it ALL the time. I just want to sleep at night knowing I am giving them the best chance to a healthy life.
But, she is a kid. A kid with a sweet tooth. I live by moderation and watch sugar like a hawk, but I am at a loss of what is "right". Should I tell her no, or continue to cringe if she has a cookie (in moderation)? I don't know. I do not know.
I will continue to stick with my gut and trust my sense of balance. I believe that living in a balance finds a sense of comfort and a system that can be a lifelong lifestyle. However, this is my challenge at the moment. I just tell myself that if I do as much as I can, where I can, then I can let it go some. I haven't made it there yet, but I am trying to tackle this latest hurdle. I just can't read the newest research...ever. Because it seems like it changes daily! Lord, give me strength!
Well, no doubt my sunshine needs will be met today. With a bonus 20 or 30 degrees added. Texas, you are so hot. And, I don't mean that as a compliment!
Until next time.
-Jenn
Tuesday, May 29, 2018
Thursday, April 19, 2018
School is Back in Session....
Dear readers, how are you? Are you starting to smell the mercy of spring? The warm breeze and noises that come along with changing seasons have been not lost on me these last fews weeks. My life is in a seasonal change and I am cautiously just watching it with a hot toddy and cheese pizza. I mean, I am ready for anything with that kind of back up, am I right?
So, my fearless fighter is back at school full time and I can NOT express how wonderful her teacher is. I have a pocket full of people over these last few years that I would give angel wings to if I could and she is one of those people. Everything you can imagine a caring, warm teacher to be, she is. She is fighting her own health battle similar to E's and boy has that helped my girl feel secure. Needless to say, I tried to freak out about her return to school (which I did for about six hours), and then we just all fell into place. Just a normal pace and routine and she is just a ray of sunshine. I knew she needed her 3rd grade community, but boy is she happy to be back. Her counts of being on maintenance are being watched and so far, they are right on point. She takes most of her meds at home and we do it early. Before any exhaustion sets in. That is key and we have a handful of food that we can grind the meds up in and we are good right now. This is an up and down process. We hit walls of, "I WANT A BREAK", but we make it. I totally get it, but baby girl you have come so far. Keep going. Just keep going.
So, as I went through the hell months of August -January, I promised I would take care of myself/other stuff. I have a plan of sections and bits, because who can even start on that bit of excitement?
Phase One:
I gave myself a week to get her settled and then...BAM. I went crazy. I scheduled 5 doctors appointments in 5 days. That week made me cray. I went to my PCP and said I need every lab work section done to ease my brain that I am okay. I am a ball of nerves and I need to start unwinding this mess. I was more than excited to see my labs looked great and I am set for the year. Praise Jesus. I also discovered I have pearly whites and no cavities. N and R had a cleaning, R had a 2.5 year check up and E had her numbers checked. I can not with that many appointments, never again. But, we made it and for the most part it was all a great success and they are over. Whew.
Phase Two is a'comin:
I am getting my myself straight in the head. I need to get my behind to counseling. I have my favorite gal, but she doesn't take our new insurance. I need to just get it figured out and go while I have some much needed time off. I start my new gig in June, so this is a sweet spot on my calendar. I also am starting to get back into workout classes that are high paced, high energy, sweat it out kind of things. This is my real therapy, but the two combined are a powerhouse.
Phase Three:
This is yet to be determined, but it will involved getting my love and I back on focusing on us a little. We were pushed to all kid mode, but we need to reset ourselves and we both know this phase is coming, so we are excited to go there after I get myself together. I am no good to anyone if I can't find my peace first. :)
My boys are doing great and getting bigger by the day. N has a loose tooth and that is the coolest thing ever and R climbs to the top of the jungle gym thing at school by himself and it is all he can talk about. I am a lucky gal. That is all.
I am going to find the sunshine before these April showers take it away.Hmmm.
Until Next Time.
-Jenn
So, my fearless fighter is back at school full time and I can NOT express how wonderful her teacher is. I have a pocket full of people over these last few years that I would give angel wings to if I could and she is one of those people. Everything you can imagine a caring, warm teacher to be, she is. She is fighting her own health battle similar to E's and boy has that helped my girl feel secure. Needless to say, I tried to freak out about her return to school (which I did for about six hours), and then we just all fell into place. Just a normal pace and routine and she is just a ray of sunshine. I knew she needed her 3rd grade community, but boy is she happy to be back. Her counts of being on maintenance are being watched and so far, they are right on point. She takes most of her meds at home and we do it early. Before any exhaustion sets in. That is key and we have a handful of food that we can grind the meds up in and we are good right now. This is an up and down process. We hit walls of, "I WANT A BREAK", but we make it. I totally get it, but baby girl you have come so far. Keep going. Just keep going.
So, as I went through the hell months of August -January, I promised I would take care of myself/other stuff. I have a plan of sections and bits, because who can even start on that bit of excitement?
Phase One:
I gave myself a week to get her settled and then...BAM. I went crazy. I scheduled 5 doctors appointments in 5 days. That week made me cray. I went to my PCP and said I need every lab work section done to ease my brain that I am okay. I am a ball of nerves and I need to start unwinding this mess. I was more than excited to see my labs looked great and I am set for the year. Praise Jesus. I also discovered I have pearly whites and no cavities. N and R had a cleaning, R had a 2.5 year check up and E had her numbers checked. I can not with that many appointments, never again. But, we made it and for the most part it was all a great success and they are over. Whew.
Phase Two is a'comin:
I am getting my myself straight in the head. I need to get my behind to counseling. I have my favorite gal, but she doesn't take our new insurance. I need to just get it figured out and go while I have some much needed time off. I start my new gig in June, so this is a sweet spot on my calendar. I also am starting to get back into workout classes that are high paced, high energy, sweat it out kind of things. This is my real therapy, but the two combined are a powerhouse.
Phase Three:
This is yet to be determined, but it will involved getting my love and I back on focusing on us a little. We were pushed to all kid mode, but we need to reset ourselves and we both know this phase is coming, so we are excited to go there after I get myself together. I am no good to anyone if I can't find my peace first. :)
My boys are doing great and getting bigger by the day. N has a loose tooth and that is the coolest thing ever and R climbs to the top of the jungle gym thing at school by himself and it is all he can talk about. I am a lucky gal. That is all.
I am going to find the sunshine before these April showers take it away.Hmmm.
Until Next Time.
-Jenn
Monday, March 26, 2018
Drum Roll Please...
Well, dedicated people of the world that are actually checking back in to this little puppy. I salute you for being here. It makes my little heart happy! I will back track my story to November or so, maybe December. Painting a picture here: I am a walking zombie. This is around the time I am proud of myself for getting up out of bed and showering was on a good day. You catch my drift? I was in survival mode and I was on this Earth to care for my kids and assure EG got the best care, the end. Poor Jeff and poor me because we were not even in my tunnel vision. Not the healthy way to carry on, but it is part of the process. So, you get the picture?
As I drop my buddy R off at Mother's Day Out on his specific days, I am chatting with the ladies I interviewed with over the past summer to get a part time job for this coming year (present year). I had a job as an aide (I just wanted to get over my anxiety of leaving Ryder, so we were going to do it together as my journey to healing). I never got to it because of E's August diagnosis and called them first hand to tell them that I had to back out and fight this battle. They were SO kind and loving and wrapped their arms around me to help take care of my baby boy while I tended to this other thing going on. Forever grateful on that one.
Skipping back to November again, there is this awesome lady who saw me at my lowest and really "saw" me. We slowly began to know each other with my daily drop off trips and such. She approached me and said she wanted to meet and the ball got rolling. We clicked and had visions and meshed to a perfect unison. Starting in the summer, I will be working as an assistant director at the Mother's Day Out. EKKKKKK. It is a part time gig and I will be back with my dude and I will be available to take in E when needed and get the bigs from school. I hate to say it in fear of throwing it off kilter...but I am SO excited!
So there you have it. A pretty dang good post on us and I am soaking it in. Just like this weather and sunshine. Soaking it in every inch of my being. I will update on how maintenance and school is going soon. Big things going on! How about you? What's new?
Until Next Time
-Jenn
As I drop my buddy R off at Mother's Day Out on his specific days, I am chatting with the ladies I interviewed with over the past summer to get a part time job for this coming year (present year). I had a job as an aide (I just wanted to get over my anxiety of leaving Ryder, so we were going to do it together as my journey to healing). I never got to it because of E's August diagnosis and called them first hand to tell them that I had to back out and fight this battle. They were SO kind and loving and wrapped their arms around me to help take care of my baby boy while I tended to this other thing going on. Forever grateful on that one.
Skipping back to November again, there is this awesome lady who saw me at my lowest and really "saw" me. We slowly began to know each other with my daily drop off trips and such. She approached me and said she wanted to meet and the ball got rolling. We clicked and had visions and meshed to a perfect unison. Starting in the summer, I will be working as an assistant director at the Mother's Day Out. EKKKKKK. It is a part time gig and I will be back with my dude and I will be available to take in E when needed and get the bigs from school. I hate to say it in fear of throwing it off kilter...but I am SO excited!
So there you have it. A pretty dang good post on us and I am soaking it in. Just like this weather and sunshine. Soaking it in every inch of my being. I will update on how maintenance and school is going soon. Big things going on! How about you? What's new?
Until Next Time
-Jenn
Wednesday, March 21, 2018
New Normal...
OK! I am back and I am free of anger towards the very being of technology. So, I figured that this is a good time write! Since I have thoughts overflowing from my head on what I need to tell you, I will just add bullets and make a beautiful list of what is going on with us. Lists make me happy, so let's do it, shall we?
* We are in rest time between phases, but the next phase is maintenance. This is what EVERYONE says to make it to. The doses lighten and become a regular routine. So, her body is not in constant shock of high dose meds kicking the cells and killing the cells and kicking them some more. But, I can't say enough how tough EG is. She really tolerated it all with such grace and strength. She doesn't know how strong she is, not by a little. I tell her daily that she is a warrior. A bad a$$ warrior that can tackle anything. I don't know if she is hearing me, but I will be an echo in her mind for her entire life because I say it often. Or atleast that is my goal.
* EG is a pre-B, low risk case of ALL. This is fortunate for us because it is based off age and her genes. She has the "good" ones that respond the best to this cocktail of meds. I have only met one other kiddo that is low risk, so we feel lucky that she was a fit for this. What does it mean? Well, she has 60% less meds during maintenance than a standard risk. That is HUGE. She will be on a 3 month cycle. She will start the first day with a lumbar puncture (spinal). This is where they inject meds (methotrexate) into her spine and she has one other chemo (Vincristine) *all way lighter than what we are used to. She will kick off the 3 months with 5 days of steroids, as well as taking one pill a night (MP-6) for the rest of maintenance. This will go on until October of 2019. But, this could be WAY worse, so we are happy with this course of treatment.
* Her hair is coming in SO fast. She is about ready for a shaping of her do. I am so excited to see my crazy hair growing out too. I know it is just hair, but we are ready to apply spring fever and see it as a rebirth of life and health.
* School begins in April and dance starts TONIGHT! She is so excited and I am too. Normalcy is making me a nervous wreck. I spent so long keeping her safe and in my nest of cleanliness and now she is to go be a real person and thrive in the world around us. My momma heart is being challenged. But, I try to keep it hidden from her because I want nothing but confidence to ooze off of me for her to vibe on. Reentry to the world is a little more tricky that you would think. Life is not worth living being afraid. We will push through and give it our all. I know we will shine through over the next few weeks. Ugh. There is a twist at every turn isn't there?
Coming up is my new job opportunity. For real guys. I get to join the world too. My heart pitter patters for so many reasons. I can't wait to share my new journey. :))))))))
This weather is my everything.
-Until next time.
Jenn
* We are in rest time between phases, but the next phase is maintenance. This is what EVERYONE says to make it to. The doses lighten and become a regular routine. So, her body is not in constant shock of high dose meds kicking the cells and killing the cells and kicking them some more. But, I can't say enough how tough EG is. She really tolerated it all with such grace and strength. She doesn't know how strong she is, not by a little. I tell her daily that she is a warrior. A bad a$$ warrior that can tackle anything. I don't know if she is hearing me, but I will be an echo in her mind for her entire life because I say it often. Or atleast that is my goal.
* EG is a pre-B, low risk case of ALL. This is fortunate for us because it is based off age and her genes. She has the "good" ones that respond the best to this cocktail of meds. I have only met one other kiddo that is low risk, so we feel lucky that she was a fit for this. What does it mean? Well, she has 60% less meds during maintenance than a standard risk. That is HUGE. She will be on a 3 month cycle. She will start the first day with a lumbar puncture (spinal). This is where they inject meds (methotrexate) into her spine and she has one other chemo (Vincristine) *all way lighter than what we are used to. She will kick off the 3 months with 5 days of steroids, as well as taking one pill a night (MP-6) for the rest of maintenance. This will go on until October of 2019. But, this could be WAY worse, so we are happy with this course of treatment.
* Her hair is coming in SO fast. She is about ready for a shaping of her do. I am so excited to see my crazy hair growing out too. I know it is just hair, but we are ready to apply spring fever and see it as a rebirth of life and health.
* School begins in April and dance starts TONIGHT! She is so excited and I am too. Normalcy is making me a nervous wreck. I spent so long keeping her safe and in my nest of cleanliness and now she is to go be a real person and thrive in the world around us. My momma heart is being challenged. But, I try to keep it hidden from her because I want nothing but confidence to ooze off of me for her to vibe on. Reentry to the world is a little more tricky that you would think. Life is not worth living being afraid. We will push through and give it our all. I know we will shine through over the next few weeks. Ugh. There is a twist at every turn isn't there?
Coming up is my new job opportunity. For real guys. I get to join the world too. My heart pitter patters for so many reasons. I can't wait to share my new journey. :))))))))
This weather is my everything.
-Until next time.
Jenn
Tuesday, March 20, 2018
Praise the Lord...
I HAVE just spent the last 30 minutes trying to undo the connection that my blogger account has to "Jeff's Action Research" blog done in his graduate years. I have NO clue how we got wrapped up, but I finally found a device that let me write on MY blog. Steam....is oozing out of my ears. But, now I can breathe and lo and behold, I have to pick up N from talent show practice. SO. My long lost, not action research blog, I must retire to go get my child. I have so much to tell you. I have been holding my breath for this LAST round of heavy duty, kick yo' booty meds, but we made it.
MAINTENANCE BOUND FOLKS! This is huge and I will be back to explain it all and give the lowdown on what our new normal looks like. I can't leave y'all here after this far into it. I will be back with fresh fingers and a lot less steam!!!
Off to be in the beautiful sunshine. Join me:)
-Jenn
MAINTENANCE BOUND FOLKS! This is huge and I will be back to explain it all and give the lowdown on what our new normal looks like. I can't leave y'all here after this far into it. I will be back with fresh fingers and a lot less steam!!!
Off to be in the beautiful sunshine. Join me:)
-Jenn
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
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
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
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