One Man

Well today was another day in our new found life.  We got the much expected grin from ear to ear as Brylee shoved chocolate in her mouth.  Thank you to the Easter Bunny for making her happy!  She also had a nose bleed today that took 7 minutes to get it to stop bleeding.  I called the doctor and they said that she probable had the bleed due to a low platelet count and that if she had another nose bleed today we needed to take her straight to the ER.  Also, we need to get a CBC test done tomorrow to see where her blood counts are.  Luckily we have not had to make an ER trip yet.  The doctor said that if her counts are too low she'll most likely have to get a blood transfusion or some platelets depending on what her numbers look like.  I'm super freaked out!  It's one more thing that my little girl has to endure that normally she shouldn't have to.  It makes me so sad that she has to once again go through something that normal people never have to experience.

We were talking about Easter today and what the day signified.  We were discussing that Friday was a horrible day.  It was the day our Savior was crucified on the cross and beaten.  It was a day full of earth quakes and storms.  It was a day full of sadness and sorrow.  But Sunday came and it was the day our Savior was risen.  It was a day full of glory and thanks.  We are currently having many Fridays with this trial of Brylee's. We are baring such heart ache and sorrow.  Such sadness and grieving.  But there will soon be a Sunday when she gets to rise again and be reunited with us.  We will once again be a whole family.

My testimony has grown so much over the past 3 and a half weeks.  I've had many mom's private message me about how they have read my story and are now doing everything they can do make the moments count.  There are some that have quit their jobs so they can spend more quality time with their children.  There have been some that have signed their child up for that extra sport and have made the sacrifice to drive an extra hour to get them there.  There have been many that have told me it's been years since they have prayed or thought of our Heavenly Father but they are hitting their knees for my Brylee.  There has been so much good come from so much bad already.  I can only imagine what the next few months will bring.  There has been a scripture coming to my mind all day today.  It's 1 Nephi 4:13 "It is better that one man should perish than that a nation should dwindle and perish in unbelief."  I know it's not completely in the correct context about Brylee but it makes me have hope that even though she may be suffering right now, that we are all suffering right now, that her life will cause a difference in this world.  Her sweet life will bring people to the Lord and cause for them to change their lives and realize what is important.  It is better for one little girl to pass than for hundreds of people to pass with no faith.  She is bringing faith to this world.

The World in Focus

Today has been a really hard day for me and because of that it has been a really hard day for Brylee.  I've been really upset and stressed out.  Bree can pick that up and she's been really testy today.  Any little thing has set her off and she has done nothing but yell and hit.  This is completely my fault because my thoughts are else where.  So I've come to the conclusion that my thoughts will no longer be else where.  I don't care what is going on in the world right now.  I am going to put all my focus on my little Brylee because she is the only one that matters right now.  It is selfish of me to take myself away from her if only for a few seconds.  It saddens me that there are people out there that are so caught up on themselves that they can't spend time with sweet Brylee.  I've been thinking all day about how I hurt for those that are going to miss out on Brylee and have so much regret in the years to come because they aren't willing to make those memories with her.  But after Brylee's hard day today because I was distracted I've decided that's not my place to worry about that right now.  So I'm not going to worry about it.  My time is Brylee's time and it will always be about Brylee.  She is the one and only in my life right now.

I'm really excited for tomorrow!  It's Easter and I'm hoping we'll see another Brylee smile.  She is completely obsessed with chocolate and even though the doctor said technically she can't have it because it's a solid food I'm totally planning on breaking the rules and giving her some!  I can't wait to see the twinkle in her eyes and that huge grin on her face that I haven't seen in a year.

For those that don't know the week before her MRI we took her to the eye doctor because her eyes were crossing, which was due to the tumor but we had no knowledge of the tumor.  The eye doctor told us that she had really horrible eye sight on top of the crossing.  He even said that the sight has dropped out of her left eye.  He said that she needed glasses.  The day before her MRI we finally found an optical place that carried glasses small enough for her tiny little figure and ordered her a cute pair.  We finally got them in the mail this week.  Today was day number 2 of her wearing them.  She keeps crying and saying she is scared when she is wearing them.  Can you imagine what it would be like?  Having your entire world so blurry and out of focus and thinking that is normal and then putting on these things that make the world completely in focus and everything is so clear and right in your face.  I'd be scared too!  Although I think she's starting to enjoy it because she didn't fight them today and didn't try to take them off.  Progress!

SMILE!

I was so excited today!  I love ice cream it is my biggest weakness.  When I walked into the room this afternoon with a pint of Ben and Jerry's in my hand Brylee got the biggest freakin smile on her face!  I have not seen her smile that big since she was about a year old!  I saw teeth and everything!  She smiled and said "I want some ice cream!"  How can you turn that down?  We ate the entire pint of ice cream the whole time she was laughing and smiling.  If that's the reaction I get over ice cream 300lbs here I come!  I would honestly eat ice cream all day with her just to see that sweet smile that I've been missing so much.  I remember last summer calling my mom almost everyday crying because Brylee never smiled.  I did crazy amounts of research on toddler depression and mental disorders.  I was so desperate to see that smile and I never did.  I thought she was miserable!  It's almost a relief to know that she truly has been happy all these years.  And the even more positive about the smile is that means radiation is shrinking the tumor.  The reason she couldn't smile is that the tumor was so big it was putting pressure on specific nerves that control certain parts of the body such as her smile, facial expression muscles in the forehead, chewing muscles, swallow muscles, eye muscles, arm and leg muscles.  So now that she is smiling again means that the tumor is shrinking and taking pressure off those specific nerves.  I also noticed that she is raising her eyebrows a lot and her right eye now closes all the way.  Her eyes aren't crossing in anymore either and her arm is not jerky when she tries to reach for things.  She is slowly coming back to me.  Hopefully I can get some awesome family pictures in May that show her real smile.  I haven't been able to have her smiling in a family picture for a very long time.  I would love something that will remind me of that beautiful smile forever.

Temper Tantrum

So I know I had a temper tantrum yesterday and I just have to say that I don't feel guilty about it.  I have every right to feel and say what I want to say during this traumatic trial.  I have every right to be hurt, angry, sad, fearful, happy, impatient, and loving.  I'm hurt that my family is once again going through another trial.  I'm angry at Heavenly Father for allowing us to go through this.  I'm sad that I'm losing my baby girl.  I'm fearful of the future.  I'm happy that I know she is leaving so I can make every minute count and get my head around it.  I'm impatient because I don't enjoy going through the heartache everyday and I just want this 'cup to pass.'  I'm loving for the precious moments I get to have with her and my family.  Loving for the support, prayers, help and love from family and friends.  Love for my Heavenly Father, that I'm still angry at, for giving me this beautiful girl for a small moment.  I'm not the only one who has thrown a temper tantrum.  Joseph Smith threw one in D&C 121.  When he was in jail he had a moment when he was very angry with Heavenly Father and asked where he was and why he was allowing his saints to go through the nightmare they were in.  Jesus Christ threw a very minor temper tantrum in the garden of Gethsemane when he asked Heavenly Father to let this cup pass from him.  But just as he did I told Heavenly Father that it wasn't about what I wanted it was about what he wanted for me.

I know that I have offended some people with this blog and with other things I have said and done the past few weeks.  My feelings are valid and normal feelings.  I have every right to feel how I want and need to.  And I have every right to voice them however and where ever I want to.  I'm not sorry that I'm a blunt, straight forward kind of person.  I've been this way my whole life and I carry my emotions on my sleeve for the whole world to see.  I'm not ashamed or embarrassed to share or show how I feel.  I hope that in some way it may be able to eventually help someone else down the road.  I guarantee that there will be a mom out there that finds herself in my shoes.  With all that I'm going through I will be able to help her and tell her that what she is feeling is normal.  I don't need rude comments right now telling me that I need to keep certain things to myself.  If this blog offends you then stop reading it because it's not changing.  This is who I am take it or leave it.

Just take her

I can't do this anymore!  Every day is torture when I have to wake up and see my beautiful little girl and know that her time is going to get cut short.  I wish he would just take her and get it over with so I could have closure and move on!  I feel like I'm constantly walking on egg shells, never knowing when it'll be over.  I try to handle it and be strong but I'm failing miserably!  I screamed at the top of my lungs on the way home from school today and started punching my steering wheel.  I can't do this.  I'm weak and numb.  I hate those moments of solitude while I'm driving to and from school because that's when it becomes real again.  I scream at god and the world, I tell him to take her away and stop putting me through hell.  But then when I get home and see my baby I realize I'm not ready for her to go.  I just want the pain to leave.  Brylee don't leave me.

Today

It was one of those days today where I just kept crying over and over again. I noticed that Brylee is having some anxiety issues the other day. I talked to the doctor about it today while we were in clinic. The doctor said that is why she is picking her lips till they bleed. It's because her world has been turned upside down and she doesn't understand it anymore. She's been picking her lips, won't go potty in the toilet, won't talk, won't let anyone hold her but me, and only watches one movie. The doctor said that she is regressing back to a time when she felt comfortable. She said to just let her do her thing and she would eventually come back. So I cried the whole time we were talking about that because I feel horrible that she is under that much stress. I cried again when my dear friend told me what her sweet little boy said today. He has Type 1 Diabetes like Bryker and they are friends. My friend was telling her little guy about Brylee and how she is sick in her brain. He got all excited and said she needs to go to the doctor and get a shot in her head and then she'll be better. My friend explained to him that that wouldn't work. He then said I'll sell all my toys and give Brylee the money so she can get better. He then proceeded to pack up all his toys and get ready for a yard sale. As my friend was telling me this story I started crying! It is so sweet that even the littlest person is on Bree's team and is praying for her. I was listening to my Hilary Weeks CD on the way home from school today and once again started crying. I love the first three songs on it. The first song talks about only having today with the one you love and what you would do to cherish today. I'd hold you and listen and I'd let the dishes sit in the sink. I'd tell you I loved you over and over. And for once I"d just let the phone ring. Then I'd remind you of forever and how our love would never change. I'd memorize every detail of your face. I wouldn't let excuses get in the way. If I only had today. This is how I feel about Brylee. I haven't been keeping up on laundry or really doing anything around the house. I've been doing nothing but sitting with her and I'm okay with that. I want to memorize everything about her so I'll never forget it. The next song on the CD talks about making mistakes. I made mistakes today and I'll probably make mistakes tomorrow. I couldn't save myself no matter how I beg or borrow I'm gonna need his grace. I think out of this entire trial this is what I'm most scared about. I'm not okay losing her and have the heart ache right now but I'm so worried I'm going to mess up and never see her again. I know that when she does die she is going to go straight to heaven and live with our Heavenly Father for all eternity. I'm so frightened that, since I'll still be here, I'm going to do something stupid and I won't go to heaven and I'll never get to hold my baby girl again. This is what bothers me most. How am I going to be able to do the rest of my life with that burden on my shoulders? I feel so unworthy. The last and finally song is exactly how I feel today. I believe that everything happens for a reason. We're not just tossed by the wind or left in the hands of fate. But sometimes life sends a storm that's unexpected. And we're forced to face our deepest pain. When I feel the heartache begin to pull me under. I dig my heels in deep and I fight to keep my ground. Still at times the hurt inside grows stronger and there's nothing I can do but let it out. Just let me cry. I know it's hard to see but the pain I feel isn't going away today. Just let me cry Till every tear has fallen. Don't ask when and don't ask why. Just let me cry. Today has been so hard. I do really good for about a week. I can keep it in and be strong for a while but then it just comes pouring out. There are days that I just need to cry.

The Atonement

I was going to be done typing tonight but I just needed to say more. I know that even though Brylee will be leaving us in the near future I know that I will see her again. She will be whole again and perfect because of our Savior. We are celebrating Easter this upcoming Sunday. Easter signifies the death and resurrection of our Savior Jesus Christ. He bled for not only our sins but our sorrows. I know that he feels everything I am feeling right now. He is there to help guide me through this time in my life. He's also there for Brylee. I know she is struggling. I can see that she is unhappy and full of anxiety. She's started picking her lips and every time she cries I ask what's wrong. Her answer is always that she's scared of the doctors. I know that our Savior suffered what we are going through. He knows how she is feeling. He knows how I'm feeling. He also died for us that we might be resurrected. Brylee will be able to come back and live again and be whole, this means no stupid brain tumor!!!! She'll be able to have her chance at a normal childhood. I'll be able to raise her and have a second chance at being her mommy. I have such a testimony in the Lord Jesus Christ. I have felt his atoning blood in so many parts of my life and I get to feel it again right now. I think that's the only thing that is keeping me sane. I know it is true with all my heart. In the name of Jesus Christ. Amen.

Grateful

So a little in sight on something that might be to private but whatever. Cory, my husband, and I have really been struggling with our relationship lately. Like really really bad to the point where I almost walked away around Christmas. We have started marriage counseling and it's helping. But today really opened my eyes to him and I am very thankful that he is still in my life. I take him for granted sometimes, especially the last few weeks. It seems like all we do is argue but I'm am madly in love with him. Sometimes I'm just too prideful to say thank you or sorry. So this is both of those. Today I made him drive the 3 hours back to our house to get a lot of stuff that we needed. We had only packed enough crap for 2 days when we were scheduled for the MRI. We were not expecting to be up in Salt Lake for 2 months. On his way out the door I said take one of the kids. So of course he took the easy one of the three kids, Bryker. He left me at my mom's house with Byrklee, a very needy 1 year old, and Brylee, my very clingy needy angel. Oh my word talk about a stressful day for me. No matter what I did there was one daughter that was screaming. Brylee wanted me to hold her or sit by her all day long. Byrklee, newly walking, was getting into all kinds of trouble so I was constantly chasing her and taking things away, causing the screaming. Screaming 24/7! Byrklee when I took things away and Brylee when I left her side! Talk about being in two places at once! This is why I'm so thankful for Cory today. He's been doing Byrklee while I do Brylee and it's been a life saver. I have no idea what I'd be doing right now if he wasn't here. I have also decided that him getting laid off in November has been a very odd blessing. It has been such a blessing that he can be here with me and helping and that he doesn't have to miss out on memories with Brylee. I desperately need this kind of support right now. Thanks Babe! Love you!

Roller Coaster

I'm happy to announce that the day got better! I took a break and ate a piece of cheese cake while my mom listened to Brylee scream. I went back with a much better attitude. And although Bree's attitude did not change I could handle it because mine did. I'm trying to be as positive about this situation as I possibly can be. I don't want my last memories to be awful ones about her being a beast and me constantly yelling. I jut keep remembering that it's her meds that are making her act like this because this is not my normal girl. We will be getting a break from these meds at the end of April and all of May (if the tumor reacts like the doctors want it to). So I just keep telling myself to hang in there. It's only a short while till she's back. I can do this. However, I do need to just stop tubbing her and combing her hair! She is completely bald on the under part of her neck now. I did have a weak moment of tears. But I finally cut one of her little ringlets to put in a memory book just in case it doesn't come back in perfect little ringlets. Today was definitely a roller coaster of emotions. Usually I can pick out what emotion is more pronounced during the day but today was all over the map!

Worst Mom Ever

Ugh!! I'm going to lose it! Brylee has done nothing but whine and yell at me all day long. I'm trying so hard to stay calm and be nice because I know she is most likely miserable right now. But it is taking all my power not to yell back at her. I can't walk into the other room without her yelling at me "Come sit by me right now!" Or yelling at her brother to get out! If she's not yelling at someone she's either crying or whimpering. I ask her what is wrong so maybe I could fix it and all she does is stare at me! She won't even say yes or no when I ask her a question! I just want to punch the wall or go outside and scream at the top of my lungs. I have no idea why I'm losing my patience so much today but really!? I swear if one more person yells at me I'm going to punch them right in the face!!! I'm trying to be compassionate and understanding. And I get it that she is uncomfortable and miserable and is probably frustrated because she doesn't understand what is going on but honestly...Does she have to be this rude?

Moments

Will the days get any easier? I feel like I'm constantly crying. Whether it's because of Brylee or something sweet someone said or wrote I feel like I'm always on the verge of tears. It started this morning when I read a very sweet letter from a friend of mine this morning on the way to radiation. Let me be the first one to say that water proof mascara does not work! I was a mess by the time we got to the Huntsman Cancer Center! But the tears did not stop. When we got home from radiation I took the opportunity to put Brylee in the tub since she was already unhooked from all her tubes and wires. I cleaned the tub before I put her in so she didn't get sick or anything. When I got her out there was so much hair in the tub it made my stomach lurch! The tears started flowing again. I took her upstairs all blurry eyed to brush her hair and get her dressed. Gobs and gobs of hair fell out! I started to cry again. I feel like I'm constantly walking a thin line and any small breeze pushes me over the edge. I'm so frustrated with it. I don't want to be weepy but I can't help it. I just love this girl so much and it kills me to see her have to go through this. She is such a miracle though. Every second she is here she teaches me more and more about the love of people on this world. I get so caught up in the awfulness of the world due to my profession that I forget to see the good. She is teaching me so much about faith, endurance, generosity, friendship, and most of all love. I have been so blessed to be this perfect little girl's mother. I feel so inadequate to be her mommy. I'm so prone to just go about my life and not look at the little things. I get lost in the motion of the day and forget to take part in it. I'm learning how to live for the moment. I'm not overlooking the small moments anymore. I'm so blessed to have this little girl in my life even if it is only for a small moment in time.

Cry with me

I had a really hard day today. I guess it started with a weird thought I had this morning. For whatever reason, while I was driving to school, the thought that Brylee wasn't going to be here for Christmas crossed my mind. I'm trying to have faith and hope that she'll last longer than that but for whatever reason I keep having that thought. Of course, me being the teary mom, started bawling my eyes out. It was the start to a very hard day. When I got home from school I noticed that Brylee had pulled her NJ tube out (her feeding tube). This was really horrible because an NJ tube is different from an NG tube. An NG tube goes to the stomach whereas an NJ tube goes to the intestines. In order to place an NJ tube Brylee had to have a serious of xrays to make sure that it goes into the right area. While we were in the xray room Brylee started crying and burrowing her head into my shoulder. I asked her what was wrong. She looked up at me with big round eyes and said she was scared. Of course I started crying again! It's really hard watching her go through all these awful procedures. It hurts my heart that someone so young has to be poked and prodded all the time. She is constantly terrified and clinging to me. I can only imagine having your perfect little world turned upside down and not understanding any of it. My whole heart goes out to her. As I was crying on my way home from school I was listening to Hunter Hayes and his song Cry With You came on. It explains my feelings perfectly! When you try not to look at me Scared that I'll see you hurting You're not hiding anything, no And frankly it's got me worried Nobody knows you better than I do I keep my promises, I'm fighting for you You're not alone I'll listen till your tears give out You're safe and sound, I swear that I won't let you down What's hurting you I, I feel it too I mean it when I say When you cry, I cry with you, with you I'm not going any place I just hate to see you like this No, I can't make it go away Oh, but keeping it inside won't fix it I can't give you every answer that you need But I wanna hear everything you wanna tell me You're not alone I'll listen till your tears give out You're safe and sound, I swear that I won't let you down What's hurting you I, I feel it too I mean it when I say When you cry, I cry with you, oh Yeah, I cry with you You need love tough enough to count on So here I am You're not alone I'll listen till your tears give out You're safe and sound, I swear that I won't let you down What's hurting you I, I feel it too I mean it when I say When you cry, I cry I mean it when I say When you cry, I cry with you I'll cry with Brylee till her tears give out. I'm fighting for her with all my strength. When she cries, I cry. When she is scared, I'm scared. When she is hurting, I hurt. I want to take this away from her but I can't. I feel so helpless.

Thank you

We have had two really long days. I was going to write a post last night but I fell asleep before I was able to get on the computer. Tuesday was truly an amazing day! Brylee was visited by three amazing women, Miss Utah, Snow White, and Cinderella. These women were willing to take time out of their day to come meet my amazing little girl. Brylee was super shy while they were here. She was excited when I told her they were coming but then when confronted with them she was nervous. She even fell asleep while Miss Utah was here hahaha. But Miss Utah was understanding and very patient with my little Brylee. Snow White and Cinderella brought her presents and were very patient as well. Brylee's favorite present was a pair of princess pajamas that they brought her. She changed into them the second the beautiful princesses left. Even though she was shy and sleepy, she didn't stop smirking the rest of the night after the three of them left. Thank you so much girls for taking time to come visit my princess. Today we had our first clinic visit after radiation. Her blood counts were great! Her immune system hasn't crashed yet which is good. They said that when her blood counts get too low they will have to do a blood transfusion before they can continue radiation. I hope we never get to that point. The part I don't understand though is that they added a whole extra 7 days to her radiation schedule today. Does that mean that they are not seeing the results they want? Or does that mean that they forgot to put us on the schedule earlier? I have no idea and trying to get straight answers out of her doctors is like pulling finger nails out with pliers. I feel like I never get a straight answer from anyone!! So frustrated! I just want to say a universal thank you to everyone who has been so willing to give so much of their time to and for Brylee. We truly are a very blessed family and we appreciate everyone in our lives. I've been trying to send out thank you cards and I can not keep up with the generosity! So if I, for whatever reason, forget to write you a card know that I really do appreciate you. We've been so overwhelmed with loving, caring friends and family. Thank you so much everyone! If you want to help out but don't know how make sure you email at bryleein5@gmail.com! Love you all!

Come back

I've decided that I hate radiation.  The doctors said that it is suppose to help alleviate her symptoms.  I have yet to see my baby girl come back.  She still can't stand on her own.  She still is slurring her words.  She still can't smile.  She still can't swallow.  And she sleeps all the time and is constantly saying her head hurts.  The only time she does talk is when she's coming out of sedation after the radiation.  And this isn't even nice talking!  She's mean.  She scratches, bites, kicks, and spits.  She yells for us to all go away and leave her alone.  I don't know if I can do this for 6 horrible weeks!  I miss my cute, bubbly, talkative little girl.  I want the sweet giggles back.  And the hundred "Mama"s in a row followed by the ummmms after I ask what.  I miss the smile that lite up her eyes.  I miss how she would squeal when I chased her down the hall.  I miss the eskimo kisses followed by butterfly kisses at bedtime.  I miss the none stop chatter about her baby sister.  I miss her telling her brother that he needed to obey the rules.  I miss her so much and all I have right now is a ghost of what use to be.  I had the most horrible thought today while I was watching her sleep, I thought that she's always going to be a vegetable and she's never going to be my little girl again.  The doctors promised that she would come back and they better be right.  I do not want these next few weeks to be how I remember my princess.

Bricks

I cried again today.  It seems like there's always something new to cry about.  I try hard not to cry.  I try really hard to hold my cool and be strong for my little girl.  Yesterday will be a week of chemo and a week and a half of radiation.  She is finally starting to lose her hair.  I had her in the tub and I washed her face and 7 eye lashes fell out at once!  I couldn't help myself...I just started crying.  I know that she is going to be beautiful no matter what she looks like but it finally felt real today.  She's going to lose her long lashes and her beautiful ringlets!  I knew it was coming and I expected it but I was not prepared for the emotions involved with it.  I don't want this horrible nightmare to be real and I've done really good about ignoring it.  The feeding tube and meds I can glaze over but the hair lost hit me like a ton of bricks.  I don't want to lose her.  Once again I'm clinging to her saying "Don't leave me."

Reality

I need to clear some things up so I stop getting my feelings hurt and I stop wondering why people don't get it.  I must not have been clear enough when I talked to people or wrote on this blog or facebook.  Brylee's tumor is 100% fatal.  95% of people die within 9-11 months after diagnosis.  5% survive 2-3 years after diagnosis.  I need that 2-3 years that's why I keep saying Brylee is going to make the 5%.  And when I talk about her dying it's a for real thing.  I am going to lose my baby.  And I know everyone is trying to be uplifting and helpful, and I appreciate it, but I'm not being depressing or unbelieving when I talk about her passing.  I'm being honest and blunt.  I need everyone to understand that in order for her remaining time on this earth to be the most wonderful time possible.  I love her so much and I don't want to lose her.  But I am going to.  When I say pray for a miracle I'm being serious.  That is the only way she is going to remain on this earth is by a miracle sent straight from God himself.  But in all reality she'll be gone as early as Christmas or as late as her 6th birthday.  That's why my life is on pause.  I need every last remaining second with her before she goes on to greater things.  She is the most amazing, special little girl I've ever met.  She is loved by so many people and I know everyone is going to miss her.  But you all need to know that her time is limited so make whatever memories you possibly can before she is gone because she will be leaving us...it's just a matter of when.

Home away from home

We got discharged from the hospital today.  It's both exciting and nerve racking.  I'm excited to get out of that awful hospital room but I'm nervous that I'm going to mess up her care.  She is still on the feeding tube so I have to learn that.  And she's taking the entire pharmacy!  I hope I can keep all the meds straight and times that they need to be given.  We don't get to go all the way home so we're staying at my mom's.  It would be pointless to drive the 2-3 hours home just to drive back up every day for her radiation.  Mom's house is a huge savior for our budget.  Now that I'm reunited with my other kids I'm scared that I'm still not going to be able to sleep.  Bryker, my 4 year old, was diagnosed with Type 1 Diabetes 3 years ago.  So I get up in the middle of the night and check his blood sugar at 11pm, 2am, 5am, 8am.  On top of that now I have to give Brylee her meds at 10pm, turn her feeding tube off at 11:30pm, another med at 1am, and turn her feeding tube back on at 7:30am.  Geez, it's going to be a long night.
I just want to recognize my mom in all this.  I know she is really struggling with the thought of losing Brylee but yet she still can find it in herself to do so much for my family.  She had my other children while we were at the hospital while making time to come visit Brylee.  She also bought a brand new bed for my family while we stay here until the middle of April.  She has been more than willing to serve us in anyway possible.  I truly am grateful for her and I hope that one day my children will think the same way about me.

Miracle

I have come to realize today that Brylee is a blessing to this world and a miracle to more people's lives than I will ever know!  I knew she was an amazingly special girl the first time I held her in my arms.  I knew she would accomplish great things on this world.  I never knew the extent of that though until today.  She has brought together this amazing community.  She has brought people back to the Lord our god in frantic pray for a miracle to save her life.  Even if the miracle is not her staying with us she is still a miracle in our lives.  The miracle might be that I was the blessed one to be this sweet little angel's mother.  She has taught me so much in her short life.  The prophet Joseph Smith said, “The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again.”  I truly believe this with my whole heart.  If my sweet Brylee leaves this earth before we think her time should be it is because she is too pure of a spirit to have to go through the trials that I, and everyone else on this earth, have to go through.  I'm almost jealous that I have to endure the hard ships.  I also know that I will still get a chance to raise her in the here after.  My heart is full.

Sorry

I'm so overwhelmed with guilt the past few days.  As I learn more and more about the symptoms of this stupid brain tumor the more I realize how horrible of a mother I've been.  I've been so impatient with my sweet little angel.  I hated the fact that she refused to do the stairs I would constantly tell her to hurry up or no I'm not going to carry you up the stairs.  And now I realize she had no depth perception due to the tumor.  And the tumor makes her muscles weak so she literally could not do the stairs.  I feel so bad about all the times we would be walking through the store and I would tell her to hurry up and that she needed to hold my hand tighter.  I feel bad that while she was on the ground groaning because she most likely had a head ache I would just ignore her.  Out of all my children she is the one that I have had the hardest time with when it comes to patience.
Looking back I realize how lucky and blessed I am to even know this sweet daughter of our Heavenly Father.  He trusted me enough to give me one of his most cherished spirits.  I will forever cherish the moments that she has climbed into my lap just to be near me, the moments that all she wanted to do was sleep next to me during the night because she was scared of the dark.  I will also cherish the moments that she loves me enough to never want to part with me.  I will always cherish the moments when I would take her to school or dance or nursery and she would cling to my leg and say "Don't leave me mama!"  I will never understand how she has such the capacity to love me so unconditionally.  And now the tables have turned.  I'm the one now clinging to her and saying "Don't leave me."

Never

I went to go see my other kids for an hour today.  On the way back to the hospital all I did was cry.  It's so painful to think about my precious little angel and the misery she is in right now.  She can't chew or swallow, she is having issues breathing, she hasn't been able to smile in a year, and she hasn't walked since Wednesday.  It pains me to know that this little girl will never ride a bike or go sledding.  She'll never meet Cinderella or go to the beach.  She'll never play soccer or have a dance recital.  She'll never go to prom or get married.  I hurt so much for my baby.  I'm going to miss her climbing in my lap and her telling me not to leave her.  I'll miss the quiet way she whispers "I love you" in my ear every day.  Or the moments when she says Mama four times in a row and when I finally say what she goes ummmm I love you!  She's so sweet and innocent.  Why does she have to go through this horrible trial?

Our Journey

I will forever remember the date of Wednesday March 6, 2013 as the devastating day that turned my life upside down.

It started about 18 months ago when I realized that my daughter was way more clumsy than she ought to be.  She would literally fall over thin air.  She also starting having night terrors every single night.  And during the day she would just lie on the ground moaning.  I finally called my pediatrician and told him something was off.  He sent us to a sleep specialist to get a sleep study.  She was then diagnosed with sleep apnea.  I was satisfied with the answer and went about my life.

A month later around Halloween 2012 she became extremely terrified of heights and refused to do the stairs.  Her clumsiness increased as well.  She ended up falling down our deck stairs all the way to the cement because she couldn't do the stairs.  I again became suspicious that something was off.  But I again blew off the feeling.

Thanksgiving quickly approached and I thought I started to notice her left eye crossing in.  It wouldn't cross all the time and it was not a drastic cross so I thought my mind was playing tricks on me.  I ignored it and went on with my life.

Come New Years Eve her left eye was crossing dramatically.  I also noticed that her right eye was crossing now too.  I procrastinated calling my pediatrician because we had no insurance.  My husband was laid off in November so our insurance was void.

By February we were able to get on medicaid for the children.  I was finally able to call me pediatrician and made an appointment.  At our appointment he decided that we needed an appointment with the opthamologist for her eyes and he wanted to do a base MRI scan of her brain.  He even said he didn't think it was a brain tumor but maybe there was something that would tell us why she was so clumsy and was now having problems with her eyes.

We went to the opthamologist the last week of February and found out that she has completely dropped sight from her left eye and that she needed glasses.  The following week is the most devastating week of my life.

The morning on March 6, 2013 we came to Primary Children's for Brylee's MRI.  It was only supposed to be a 30 minute MRI.  After an hour passed a doctor came a got me and my husband from the waiting room and said he needed to talk to us.  He took us into a conference room where they had a picture of her MRI on the wall with a big projector.  Dr. Carol Bruggers was sitting at the table.  Cory and I sat down and she said that they had devastating news for us.  She then informed us that Brylee had an infiltrating brain stem glioma, a brain tumor also known as a DIPG.  She said that since it is so interwoven into her brain stem it is inoperable.  I started bawling and don't remember anything else that was said.  It is one of the most devastating feelings I've ever had in my life.  I finally calmed down enough to ask Dr. Bruggers how much time was daughter had or if it was fixable.  She wouldn't tell me a time frame but kept emphasizing that a few of her patients with this particular tumor are still alive.  I once again asked how long my sweet little 2 year old had.  Dr. Bruggers then said that the pattern for this brain tumor is once it is diagnosed and the patient starts radiation and chemotherapy the tumor shrinks and goes into remission for about 6-9 months.  Once the tumor starts growing the second time it doesn't respond to treatment and the patient passes away within a few months.  So from diagnosis to death is about 1 year.  I started crying all over again.  The doctors left to go finish Brylee's MRI.  They took another hour and a half to scan her entire body to make sure there wasn't anymore cancer anywhere.

After the MRI it was a whirlwind of doctors and getting us admitted into Primary Children's hospital.  They didn't even let us go home.  When she woke up from the MRI they had her put on a feeding tube because the tumor has caused her swallow reflex to go away.  She also needed to be put on oxygen because she was having a hard time breathing.  Thursday morning she officially failed her swallow test.  Thursday night they did surgery on her to place a port in her chest, a permanent IV, that accesses a vein in her neck.  She was still on oxygen all day on Thursday.  Thursday they also took xrays of her chest because she was having weird breathing sounds.  Friday morning they took more xrays of her chest and we had our first radiation treatment.  She again was on oxygen all day Friday.  She started to reflux on her feeding tube so they had to advance it into her small intestine.  They did this by strapping her to a board and taking several series of xrays of her stomach while they were threading the cord into her.  Saturday she had her 2nd radiation treatment.  The hospital did a viral test and found out all her breathing issues were due to the fact that she has RSV.  She was still on oxygen but had a pretty lazy day.  Sunday we did another round of radiation and were able to get off the oxygen.  Monday brought more radiation and had to start oxygen again.  She was actually awake most of Monday playing with play dough.  Monday night brought on a bought of roid rage due to a steroid they have her on.  My arms are very bloody and scratched because every time I got near her she freaked out.  Tuesday, today, she had more radiation and more oxygen.

This has been a trial and a blessing so far.  I have learned about so many people that love my daughter and my family.  We are so blessed to have so many amazing people in our lives.  Thank you for all the prayers and love.  We need a miracle!

Brylee in 5

A blog about Brylee and how she beat the odds and survive her DIPG brain stem glioma, brain tumor. 95% pass within the first 11 months. The last 5% pass within 3-4 years. We need her to at least be in that 5%.