Today we got the results of Brylee's most recent blood labs (yesterday they were drawn). Her counts still aren't the best but they have improved. Her platelets are still extremely low. I'm worried that she'll be getting another infusion on Wednesday at clinic. However, her white blood and red blood counts were high enough that she was able to go outside. She said she wanted to ride her bike! Cory walked her up and down the street for almost an hour. When they finally came in the house for dinner she wanted to sit on my lap. As I was holding her she fell asleep. She was so pooped out for playing so hard after almost two months of not playing. She slept for almost two hours. Within the first ten minutes my legs fell asleep but I didn't move or adjust her for fear of her waking up. I didn't want to lose out on such a precious moment and the opportunity to cuddle my baby. I even cried as I watched her peaceful face as she slept, wondering how much time I have left with her. Years? Months? Weeks? Days? No one knows. There are many nights that I pray to God that he will tell me how long we have. I pray that he'll take this from me and tell me well done. I pray that he gives me the strength to keep going on because most days I feel weak. I pray that I will be the inspiration everyone tells me that I am. I pray that he sees and catches every tear I spill and that he will lessen my pain and heart ache. I pray that this is just a nightmare only to open my eyes and it's still raining. I yell into the storm and wonder if he even hears me at all.
Slow Down
Friday, April 26, 2013
Yesterday was a day without Brylee for me. Byrklee (my 1 year old) had
a well baby check up north with my pediatrician that I will never part with no
matter how far away I move. He is one of the most amazing doctors and has
been with us through Bryker's diabetes diagnosis and now Brylee's. I also
had my last final up at Weber
State. Needless to
say Byrklee and I got some much needed mommy daughter time. I had a
totally different attitude than I normally do on these occasions. Usually
its hurry into our appointment and run to the car carrying the kids to get to
the next commitment. However, on this day, it was walk slowly into the
doctor office and enjoy the warm spring air. We sat and chit chatted with
our favorite nurse, Jetta, and with our Dr. Owen. We laughed at Byrklee
as she danced around the appointment room. Then instead of scooping her
up and running out the door I let her walk. It probably took us ten
minutes to get back to the car. Her little legs working vigorously to
climb every chair in the waiting room. She then proceeded to squat down next to
each pin wheel in the garden and blow on them each in turn. She explored
the rocks and the cement. She even tried to pick at some gum on the
ground (mama intervened on this one!) After my final we went to the mall
to get me a much needed belated birthday present. This too was a
different experience as we sat on the bench and watched everyone hussle bussle
past us. Moms were hurrying their children and yelling don't touch this
or that. I know that everyone has their own story and their own wounds
that need healing, but mine has taught me to not just live life but to
experience life. You never know what will be thrown in your
direction. It saddens me to watch the world let all the important moments
slip by.
Today we got the results of Brylee's most recent blood labs (yesterday they were drawn). Her counts still aren't the best but they have improved. Her platelets are still extremely low. I'm worried that she'll be getting another infusion on Wednesday at clinic. However, her white blood and red blood counts were high enough that she was able to go outside. She said she wanted to ride her bike! Cory walked her up and down the street for almost an hour. When they finally came in the house for dinner she wanted to sit on my lap. As I was holding her she fell asleep. She was so pooped out for playing so hard after almost two months of not playing. She slept for almost two hours. Within the first ten minutes my legs fell asleep but I didn't move or adjust her for fear of her waking up. I didn't want to lose out on such a precious moment and the opportunity to cuddle my baby. I even cried as I watched her peaceful face as she slept, wondering how much time I have left with her. Years? Months? Weeks? Days? No one knows. There are many nights that I pray to God that he will tell me how long we have. I pray that he'll take this from me and tell me well done. I pray that he gives me the strength to keep going on because most days I feel weak. I pray that I will be the inspiration everyone tells me that I am. I pray that he sees and catches every tear I spill and that he will lessen my pain and heart ache. I pray that this is just a nightmare only to open my eyes and it's still raining. I yell into the storm and wonder if he even hears me at all.
Today we got the results of Brylee's most recent blood labs (yesterday they were drawn). Her counts still aren't the best but they have improved. Her platelets are still extremely low. I'm worried that she'll be getting another infusion on Wednesday at clinic. However, her white blood and red blood counts were high enough that she was able to go outside. She said she wanted to ride her bike! Cory walked her up and down the street for almost an hour. When they finally came in the house for dinner she wanted to sit on my lap. As I was holding her she fell asleep. She was so pooped out for playing so hard after almost two months of not playing. She slept for almost two hours. Within the first ten minutes my legs fell asleep but I didn't move or adjust her for fear of her waking up. I didn't want to lose out on such a precious moment and the opportunity to cuddle my baby. I even cried as I watched her peaceful face as she slept, wondering how much time I have left with her. Years? Months? Weeks? Days? No one knows. There are many nights that I pray to God that he will tell me how long we have. I pray that he'll take this from me and tell me well done. I pray that he gives me the strength to keep going on because most days I feel weak. I pray that I will be the inspiration everyone tells me that I am. I pray that he sees and catches every tear I spill and that he will lessen my pain and heart ache. I pray that this is just a nightmare only to open my eyes and it's still raining. I yell into the storm and wonder if he even hears me at all.
Does she know?
Tuesday, April 23, 2013
Today has been...well a day. It's been a very emotional day for me today. It all started last night when I decided to open a book that I bought last week. It's called Notes Left Behind. It's about Elena, a little 6 year old girl, who died from a DIPG (Brylee's same tumor). It's her parents journal as they were traveling down the exact same road we are now. I got three pages in and immediately started sobbing! I don't know what I was thinking when I picked up that book. I guess I'm longing for someone who gets why I feel the way I do. I'm angry and bitter, sad and lonely, humbled and spiritual. But most of all I'm lost. I don't get it. I don't understand why my sweet little girl and family have to go through this awful trial. I like to think that I get it and I often say wise words about why this is happening. Something along the lines of she is here to teach people how to serve and care. Teach how to take each day a second at a time and actually live life to the fullest. But in all reality I don't understand. I feel like my heart is getting ripped out of my chest daily. I get so wrapped up in the pain that sometimes I get offended too easily by something someone said out of innocence. Or I get offended by something no one said at all! I know there are many people that have offered their shoulder and I've taken some up on it, but sometimes it doesn't help. I need someone that knows what it feels like. I need someone that knows what it is like to watch your own daughter go from bouncy, and chattery to almost nothing at all. Yes, radiation and chemo helped her symptoms like swallowing and being able to smile, but it also took away her innocence. She has no drive to be here on this Earth at all. If she's hungry I'll put food in front of her and, even though she can feed herself, she'll just stare at it. There is no drive to meet her own needs. She would literally starve to death staring at a plate of food. It's absolutely crushes my whole soul! Twice today she picked her lips till they were pouring blood because she was having anxiety about the nurses at the house. I thought coming back home would be good for her and make her come back to me. It completely failed. This book talks about how Elena hide notes everywhere for her family to find after she had left this world. The notes always had a heart on the front that said how much she loved them. Brylee won't even look at me when I tell her I love her. Does she know that I will always love her? Does she know she's dying? Does she know how much I hurt? Does she know I long for her even when she's sitting right next to me? Does she know?
Almost gone
Monday, April 22, 2013
Brylee had a very long week this past week. It all started with her last day of radiation! We were celebrating and getting ready to come back home to our house in Price. That's when the fever of 102 hit on Tuesday night around 9PM. I called the on-call oncologist and they said to immediately take her to the ER. So off we went. (I was smart this time and packed a few days worth of stuff in a duffel bag.) When we got to the ER I told them who we were and why we were there. The doctor had already pre-registered us. So they took us back to one of the triage rooms. They put us in the isolation one because she has cancer and has a higher chance of getting germs and infections. We were then taken to a room where they drew some labs to try and figure out what was causing the fever. They then put us on some precautionary antibiotics to get a jump start on whatever bug she has. We were in the ER for what felt like an eternity when the ER doctor finally came in and told me her blood counts were extremely low. Her platelet count was 17! A normal person is 100-150! They said that once we got up to the cancer floor (ICS) they would most likely give her some platelets and watch her fever for a few days. We then were taken up to ICS. We got there around 3AM. Brylee and I tucked into bed and fell asleep. An hour later at 4AM I woke up because I felt Brylee moving a lot. When I opened my eyes there was 20 people starring at me! The doctor proceeded to tell me (as they were running the bed containing Brylee and I in it down the hall) that Brylee had a rare reaction to one of the antibiotics and that her blood pressure had crashed. She told me that they were giving her lots and lots of fluids to try and keep her blood pressure up and that they were taking us to the Pediatric Intensive Care Unit (PICU). The EMT in me asked what her blood pressure was at. When the doctor told me that it was 50 over 20 I about peed my pants! I didn't really have any concerned emotions though because I was still in the waking up fog from having only an hours worth of sleep. When we finally got to the PICU they gave her a special med that forced her blood pressure back up. We were in the PICU from 4AM Wednesday morning till Friday afternoon. While we were in the PICU they kept her on the antibiotics and slowly weened her off her blood pressure med. There was only one time that she started to drop again and they bumped the dose back up. We were in the PICU for her first transfusion of platelets ever in her entire life.
Now let me explain the platelet transfusion because I have had many people ask me what the difference is between that and a blood transfusion. Platelets are part of the blood. The lab separates them from the rest of the blood for people like Brylee who might need just platelets and not red and white blood cells as well. Platelets are a weird yellow color (they reminded me of nasty snot). They also started her on a special shot of meds that was suppose to help her blood counts to come up.
On Friday they transferred us back up to ICS. Friday was Brylee's first blood transfusion in her entire life. Despite the platelets on Wednesday and the special shot of meds in her thigh her blood counts continued to drop to scary levels. Her ANC (don't ask me what it stands for because I'm not sure but I know it has to do with her red and white blood cell numbers) was a 0.1. A normal person is 1.5-8.5. So they decided to help her out a little bit and give her a unit of blood. Before the blood she was so pale and exhausted! But within 10 minutes of the blood transfusion she was playing with puzzles and had rosy cheeks! It was incredible to see the change in her little body.
Saturday morning the doctor came in and said that we were going home today and that her platelet count was still dropping and they were going to do one more platelet infusion before we were discharged. They platelets came up to the room at about 2PM. The protocol is for the nurse to stay in your room for the first 15 minutes of the infusion. So while our nurse was in our room while the platelets started she took Brylee's feeding tube out! It was so happy that I was trying to get Brylee to smile and take a picture. All Brylee could do though was grab at her throat. We all thought that she was probably feeling weird that the feeding tube was gone. The nurse left our room after 15 minutes. Right when the nurse left Brylee started throwing a temper tantrum. Cory and I were the awesome parents telling her to knock it off. At the same time Cory and I both stopped and starred at her. I then turned to him and asked if he saw her swelling up too. He said yes and we immediately called the nurse. Within 1 minute I swear the entire hospital was in our room! Brylee had gone into anaphylactic shock. She was so red and swelled up so much she reminded me of the girl from Willy Wonka that turned into a blue berry. It was the scariest thing. I was standing in the corner of the room watching all these nurses and doctors breath for my daughter and pump her full of meds trying to get her back. They finally had to stab an eppy pen into her thigh to get her to come back to normal. They almost took her back to the PICU because the eppy pen was taking so long to effect the anaphylaxis. She finally started to be able to breath again and finally stopped swelling. They kindly told us we were not being discharged anymore and that she was now on a 24 hour watch. They put her on a strict Benadryl regimen to try and keep it from not happening again. Sunday morning came and they told us we could go home. They said her platelet count was still low but they weren't going to risk another infusion.
We came home on IV antibiotics with no reason for her fever and a very hectic week where we almost lost her twice. I'm officially pooped out! But I'm happy to be back in my own home. It was so surreal when we walked in the house though. The calendar was still on March 5th. The second car has a layer of dirt on it. My bamboo is dead. I'm thankful to my sister in-law that my cat and fish are still alive. It feels like we haven't been here in a million years. I'm excited to be home, but I'm scared to death to be so far away from her medical team.
Now let me explain the platelet transfusion because I have had many people ask me what the difference is between that and a blood transfusion. Platelets are part of the blood. The lab separates them from the rest of the blood for people like Brylee who might need just platelets and not red and white blood cells as well. Platelets are a weird yellow color (they reminded me of nasty snot). They also started her on a special shot of meds that was suppose to help her blood counts to come up.
On Friday they transferred us back up to ICS. Friday was Brylee's first blood transfusion in her entire life. Despite the platelets on Wednesday and the special shot of meds in her thigh her blood counts continued to drop to scary levels. Her ANC (don't ask me what it stands for because I'm not sure but I know it has to do with her red and white blood cell numbers) was a 0.1. A normal person is 1.5-8.5. So they decided to help her out a little bit and give her a unit of blood. Before the blood she was so pale and exhausted! But within 10 minutes of the blood transfusion she was playing with puzzles and had rosy cheeks! It was incredible to see the change in her little body.
Saturday morning the doctor came in and said that we were going home today and that her platelet count was still dropping and they were going to do one more platelet infusion before we were discharged. They platelets came up to the room at about 2PM. The protocol is for the nurse to stay in your room for the first 15 minutes of the infusion. So while our nurse was in our room while the platelets started she took Brylee's feeding tube out! It was so happy that I was trying to get Brylee to smile and take a picture. All Brylee could do though was grab at her throat. We all thought that she was probably feeling weird that the feeding tube was gone. The nurse left our room after 15 minutes. Right when the nurse left Brylee started throwing a temper tantrum. Cory and I were the awesome parents telling her to knock it off. At the same time Cory and I both stopped and starred at her. I then turned to him and asked if he saw her swelling up too. He said yes and we immediately called the nurse. Within 1 minute I swear the entire hospital was in our room! Brylee had gone into anaphylactic shock. She was so red and swelled up so much she reminded me of the girl from Willy Wonka that turned into a blue berry. It was the scariest thing. I was standing in the corner of the room watching all these nurses and doctors breath for my daughter and pump her full of meds trying to get her back. They finally had to stab an eppy pen into her thigh to get her to come back to normal. They almost took her back to the PICU because the eppy pen was taking so long to effect the anaphylaxis. She finally started to be able to breath again and finally stopped swelling. They kindly told us we were not being discharged anymore and that she was now on a 24 hour watch. They put her on a strict Benadryl regimen to try and keep it from not happening again. Sunday morning came and they told us we could go home. They said her platelet count was still low but they weren't going to risk another infusion.
We came home on IV antibiotics with no reason for her fever and a very hectic week where we almost lost her twice. I'm officially pooped out! But I'm happy to be back in my own home. It was so surreal when we walked in the house though. The calendar was still on March 5th. The second car has a layer of dirt on it. My bamboo is dead. I'm thankful to my sister in-law that my cat and fish are still alive. It feels like we haven't been here in a million years. I'm excited to be home, but I'm scared to death to be so far away from her medical team.
Never Again
Tuesday, April 16, 2013
Brylee finished radiation today! We are so excited to finally be done and on our way home soon. She had her first outing on Sunday that was not to the doctor's. When went to my dad and step mom's house for my birthday dinner! She actually played with a car while sitting on the ground! It was funny to get out of the house. She thought we were going to the doctor and cried the majority of the way. She didn't smile when we arrived but at least she stopped crying when we pulled into the drive way.
We just wanted to say thank you the the Huntsman Cancer Institute. They are an amazing group of people. They made radiation fun and not scary. They were great listeners and very understanding of my many tears. We have all become great friends and they have been a huge part in trying to save my daughter's life. Even though it is just their every day job, it was much more to us. They literally held our daughter's life in their hands. They were willing to fight for her and that gave us courage and hope. They have truly made an impact on our lives. And even though, on the way out the door this morning, I told them all I hope I never see them again I will forever cherish them in my heart. I hope that one day our paths cross again on happier notes. (I might even stop in and say hi!) We will forever remember them as our super heroes!
This is really scary for Cory and I to be done with radiation. Radiation gave us the opportunity to look forward to something. It gave us something to do in fighting this horrible tumor. It gave us comfort to know that a doctor was seeing her everyday and would be able to catch the tinniest change or challenge. No that we will be sitting for four weeks, waiting, it is going to be very hard and full of anxiety not knowing if it truly worked. And, according to statistics, this is the only time she will ever do radiation for this tumor. When it starts growing again the doctors will have to resort to something else, such as chemo or drugs. I hope and pray that it is in remission and we will have a solid 6 months of our healthy daughter back before we have to do it all over.
We just wanted to say thank you the the Huntsman Cancer Institute. They are an amazing group of people. They made radiation fun and not scary. They were great listeners and very understanding of my many tears. We have all become great friends and they have been a huge part in trying to save my daughter's life. Even though it is just their every day job, it was much more to us. They literally held our daughter's life in their hands. They were willing to fight for her and that gave us courage and hope. They have truly made an impact on our lives. And even though, on the way out the door this morning, I told them all I hope I never see them again I will forever cherish them in my heart. I hope that one day our paths cross again on happier notes. (I might even stop in and say hi!) We will forever remember them as our super heroes!
This is really scary for Cory and I to be done with radiation. Radiation gave us the opportunity to look forward to something. It gave us something to do in fighting this horrible tumor. It gave us comfort to know that a doctor was seeing her everyday and would be able to catch the tinniest change or challenge. No that we will be sitting for four weeks, waiting, it is going to be very hard and full of anxiety not knowing if it truly worked. And, according to statistics, this is the only time she will ever do radiation for this tumor. When it starts growing again the doctors will have to resort to something else, such as chemo or drugs. I hope and pray that it is in remission and we will have a solid 6 months of our healthy daughter back before we have to do it all over.
The Fundraiser
Saturday, April 13, 2013
I just wanted to universally say thank you to everyone for the fundraiser last night! When Cory, Bryker, Byrklee and I got there it was so much larger than I was anticipating! I heard Mallery advertise it on the radio right when we pulled in and I saw the full parking lot. I immediately started crying! When we got out of the car we were welcomed with a crowd of amazing people. Hugs, hellos, sorrys, and tears were all around. I have never felt such overwhelming love. I then received a tour of all the events. I was welcomed with looks of awe and the question "Is this the mother?" So many people hugged me and said they look up to my strength and that I've been an inspiration. When in truth you have all been an inspiration to me. I have never met or lived in a community that is so willing to run and help at the drop of a hat! I was embraced by so many young girls that told me they love my daughter and they hope she makes it. I even had a few had me pictures that they had drawn for sweet Brylee. I met so many amazing people last night that were so willing to help such a complete stranger. One in particular was Tatum. She put together an amazing yard sale and had never met me until last night. She raised over $1,800 for someone she has never met. I am so humbled by the amount of grace and love she has. She told me that she looks up to me when the role is completely opposite, I look up to her more than she'll ever know! I hope we will become fast friends as I have so much to learn from her. A very special thanks to Moira, Keri, Jamill, April, Misha, and Nikki (especially Moira because she was the mast mind behind the whole event) for putting this event together. I am so blessed and lucky to have such amazing women in my life! I know I didn't just meet them by chance. God never makes a mistake. God will always determine who walks into our lives. It is up to us to decide who we let walk away, who you let stay and who you refuse to let go! I am so grateful that God has let all of you walk into my life, and Brylee's. And I will never let any of you go. I cried all night long and the entire drive home and all day today. Every time I think about what our amazing community is so willing to do I shed tears. Thank you so much for all your love and support. And just know it does not go unnoticed but I'm not capable of all the thank you cards that are called for in this case LOL! Thank you from the bottom of my heart!
Bitter Sweet
Thursday, April 11, 2013
So I was getting ready to hop in bed when I remembered I hadn't written anything yet for today. And I was about ready to say forget it when I realized that if it were a bad day I would have already written something on here. But since today was a good day I was so willing to brush it off. That made me get out of bed and sign on to write today! This is a time when it is so easy to focus on the sad moments and depressing feelings that we need to celebrate when there is a good day, a laugh, a smile, and good news!
Brylee took her last dose of chemo today and Tuesday is her last radiation therapy! Then we play the wait game until her next MRI in...June I think? I thought we had radiation until the 19th but her radiation doctor told me today that my schedule is wrong and she graduates on Tuesday! It's bitter sweet for me. I'm so ready to be done and go back home and try to be normal again for as long as we can be. But it also makes me kinda nervous to not have a doctor look at her everyday! But I'm ready to sleep in my own bed and give my kitty a hug!
Over all it was a really good day today. Brylee talked more than I've heard her talk in over a month! Instead of just crying until I guessed what she needed she would actually say "Mama I need blah." So happy!!!! I don't have to play the guessing game anymore! She has smiled so much today and laughed over everything! I feel like she's coming back a little bit at a time.
Cory gave me the best birthday present today (although my birthday is technically tomorrow). He made me a DVD slide show of every picture of Brylee that we have! I cried for the entire 22 minutes of slides. I was the best and most horrible present ever! Kinda like in Madagascar 3 when Alex the lion says "You both made and ruined my day!" It was so sweet and it will totally be my best, most cherished present I'll ever get. Love you Bree!
Brylee took her last dose of chemo today and Tuesday is her last radiation therapy! Then we play the wait game until her next MRI in...June I think? I thought we had radiation until the 19th but her radiation doctor told me today that my schedule is wrong and she graduates on Tuesday! It's bitter sweet for me. I'm so ready to be done and go back home and try to be normal again for as long as we can be. But it also makes me kinda nervous to not have a doctor look at her everyday! But I'm ready to sleep in my own bed and give my kitty a hug!
Over all it was a really good day today. Brylee talked more than I've heard her talk in over a month! Instead of just crying until I guessed what she needed she would actually say "Mama I need blah." So happy!!!! I don't have to play the guessing game anymore! She has smiled so much today and laughed over everything! I feel like she's coming back a little bit at a time.
Cory gave me the best birthday present today (although my birthday is technically tomorrow). He made me a DVD slide show of every picture of Brylee that we have! I cried for the entire 22 minutes of slides. I was the best and most horrible present ever! Kinda like in Madagascar 3 when Alex the lion says "You both made and ruined my day!" It was so sweet and it will totally be my best, most cherished present I'll ever get. Love you Bree!
Crushed
Wednesday, April 10, 2013
Today was a horrible day! I was trying really hard to be positive but it just wasn't working. We went to Brylee's radiation, which went great, then to clinic. I swear I had a million questions for her doctor. Each question she answered was negative. My worst fears were confirmed. Her tumor is called a DIPG tumor. The abbreviation is a diffuse intrinsic potine glioma. Basically, in english, a tumor in the pons, or middle of the brain at the top of the brain stem. This specific tumor is not just a ball it is intertwined into the tissue of the brain stem. Brylee also can not come off the steroids or her feeding tube. She can eat whatever she wants but we need the tube to administer her medications to her. I guess that part makes sense because she is literally getting around eight meds at one time and there is no way I would be happy taking them, let alone a two year old. Her steroids are not tapered off enough to just stop them cold turkey. So a little while long on them. She also has to start physical therapy tomorrow because she is not using her arms or legs. This is not because of the tumor. The day before we went in for her MRI and she was diagnosed she was running around like a crazy, wild child and talking up a storm. The minute they admitted us into the hospital all of that stopped. The doctor and I were talking and decided that it is most likely anxiety that is casing her to shut down and withdraw into herself. But now that she is feeling better and would maybe want to walk she literally can't now. She has gained so much weight because of the steroid and she hasn't been walking to keep up the muscle mass. So we're starting to learn how to walk again. We have no reasoning as to why she won't use her arms. But I guess the steroid takes away muscle mass as well. So she hasn't been walking in a month, steroid taking muscle mass, and gained a lot of weight. I can see why she is having issues. Her blood counts came back today and most of them are good. The only low number are her platelets. A normal person is between 100,000-150,000 and she came back at 71,000. The doctor said that they normally do a platelet infusion when they get to 35,000. Hopefully we never reach that point! Brylee also is starting to have some issues related to the radiation. She is getting sores in her nose, thus the nose bleeds for the past week or so, and sores behind her ears where her glasses sit. The doctor told us not to let her wear her glasses and we need to start putting hydrocortizone cream on her ears. On a hopefully happy note her doctor is going to look into that study at Johns Hopkins and Cornell for us. I hope that we are eligible for it. Her doctor seemed really excited about the idea behind the study which gives me warm fuzzies. Even if it can't save my little girl hopefully one day it will save someone else's.
We met with Make-A-Wish last night! We are all really excited for it. We asked them to send us to Disney World and Give Kids The World. I really hope it gets approved by her doctor. It will be our first family vacation and most likely our last.
While we were at the clinic with Brylee my mom called us in regards to our son Bryker. Bryker is four and was diagnosed with Type 1 Diabetes when he was 15 months old. I guess Bryker had been peeing a lot and throwing up at my friend's house. So my mom went and got him. Well his blood sugar was 497 and his blood ketones were 3.7!! He was totally fine at 8:30 AM and my mom picked him up at 11 AM! GEEZ! His insulin pump informed us that it had a delivery failure. So it was a frantic afternoon trying to get his numbers under control so we didn't have to make a trip to the ER.
With all that said this makes me truly frightened for our youngest daughter Byrklee. She is 15 months old this month and I'm scared she's going to end up with some incurable disease like her siblings! Our track record isn't the best. Cory and I had planned on having four kids and we were planning on trying for our last this summer. After Brylee got diagnosed Cory asked if I still wanted another one. I said no I can't handle another heart break! Obviously our gene pole isn't too grand and I'm not about ready to bring another innocent child into this world to just go through H E double hockey sticks!
We met with Make-A-Wish last night! We are all really excited for it. We asked them to send us to Disney World and Give Kids The World. I really hope it gets approved by her doctor. It will be our first family vacation and most likely our last.
While we were at the clinic with Brylee my mom called us in regards to our son Bryker. Bryker is four and was diagnosed with Type 1 Diabetes when he was 15 months old. I guess Bryker had been peeing a lot and throwing up at my friend's house. So my mom went and got him. Well his blood sugar was 497 and his blood ketones were 3.7!! He was totally fine at 8:30 AM and my mom picked him up at 11 AM! GEEZ! His insulin pump informed us that it had a delivery failure. So it was a frantic afternoon trying to get his numbers under control so we didn't have to make a trip to the ER.
With all that said this makes me truly frightened for our youngest daughter Byrklee. She is 15 months old this month and I'm scared she's going to end up with some incurable disease like her siblings! Our track record isn't the best. Cory and I had planned on having four kids and we were planning on trying for our last this summer. After Brylee got diagnosed Cory asked if I still wanted another one. I said no I can't handle another heart break! Obviously our gene pole isn't too grand and I'm not about ready to bring another innocent child into this world to just go through H E double hockey sticks!
Research
Sunday, April 7, 2013
Brylee had an interesting day today. It was such a mixture of emotions. She's been really grouchy and yelling a lot but at the same time it's the most I've seen her smile today! She actually wanted to go outside so we went on a walk. She was so excited because she saw her first plane today! It's amazing what glasses can do for someone! She was so happy to be outside. I've been trying to get her to got out almost every day but she keeps saying no. I was so excited when she said yes today. Thank you for everyone involved in the yard sale yesterday! We are so humbled at the out poor of support.
We're meeting with her wish granters from make a wish on Tuesday night. I'm really excited! I'm thinking we'll do Disney World. Unless they can get something different out of her hahaha. How do you get a 2 year old that has stopped talking tell you what her deepest wish is? I was thinking Disney World because she is in love with Cinderella and the other princesses.
We've been looking into a clinic study for her. I've researched a lot of them at St. Jude's and other places. Everyone is doing exactly what we're doing a Primary Children's. The only one that is different and stands out to me was one a Johns Hopkins in New York. This study does a surgery to put a canula into the tumor. This way they can administer medications and chemo straight into the tumor and completely by pass the blood brain barrier. This is the first time they've ever used a canula on a DIPG tumor. I know they use them on other brain tumors but a DIPG is in such a fragile place in the brain that they've avoided surgeries. I'm pretty positive that this is the same tumor Brylee has. Her doctor has always called it an infiltrating brain stem glioma but every time I put that into google to read up on it all the information of a DIPG comes up. DIPG stands for diffused intrinsic pontine glioma (the I also sometimes stands for infiltrating). Her tumor and a DIPG have the same symptoms and survival statistics. I'm going to confirm on Wednesday when we see her doctor again. So don't quote me on it! I feel kinda stupid that I don't even know 100% on what her tumor is called. I guess I was pretty hysterical and didn't retain the information. Who could blame me right?
Anyway this is just an update on Brylee. I personally had a rough two days. I've been doing a lot of research this weekend trying to come up with a way to save my daughters life. Every time I read another article I start crying. Every article says the same thing "There have not been any advances toward a cure in 30 years." or "Prognosis for a DIPG is not good and new diagnosis only survive 9-11 months." It almost seems hopeless. But I'm willing to try anything. I've even been looking into changing her diet. But who knows if any of it will work at all. I feel like I'm grasping at thin air.
We're meeting with her wish granters from make a wish on Tuesday night. I'm really excited! I'm thinking we'll do Disney World. Unless they can get something different out of her hahaha. How do you get a 2 year old that has stopped talking tell you what her deepest wish is? I was thinking Disney World because she is in love with Cinderella and the other princesses.
We've been looking into a clinic study for her. I've researched a lot of them at St. Jude's and other places. Everyone is doing exactly what we're doing a Primary Children's. The only one that is different and stands out to me was one a Johns Hopkins in New York. This study does a surgery to put a canula into the tumor. This way they can administer medications and chemo straight into the tumor and completely by pass the blood brain barrier. This is the first time they've ever used a canula on a DIPG tumor. I know they use them on other brain tumors but a DIPG is in such a fragile place in the brain that they've avoided surgeries. I'm pretty positive that this is the same tumor Brylee has. Her doctor has always called it an infiltrating brain stem glioma but every time I put that into google to read up on it all the information of a DIPG comes up. DIPG stands for diffused intrinsic pontine glioma (the I also sometimes stands for infiltrating). Her tumor and a DIPG have the same symptoms and survival statistics. I'm going to confirm on Wednesday when we see her doctor again. So don't quote me on it! I feel kinda stupid that I don't even know 100% on what her tumor is called. I guess I was pretty hysterical and didn't retain the information. Who could blame me right?
Anyway this is just an update on Brylee. I personally had a rough two days. I've been doing a lot of research this weekend trying to come up with a way to save my daughters life. Every time I read another article I start crying. Every article says the same thing "There have not been any advances toward a cure in 30 years." or "Prognosis for a DIPG is not good and new diagnosis only survive 9-11 months." It almost seems hopeless. But I'm willing to try anything. I've even been looking into changing her diet. But who knows if any of it will work at all. I feel like I'm grasping at thin air.
Pain
Saturday, April 6, 2013
I called the on call doctor today. Brylee has been having nose bleeds all week. It's almost like a leaky faucet. It's not gushing blood out like it did on Sunday but almost like a slow leak. The on call doctor said she doesn't think it is her platelet count, which is good. She thinks that due to the radiation Brylee has developed sores in her nose. She explained that sometimes kids will get sores in their mouths and nose. If the bleeding gets worse we need to take her to the ER. Today was really hard slightly from that news but also because of Brylee herself. She's been rotten today and just down right mean. She full on yelled all through conference that she didn't want to watch this stupid show and that she wanted to watch her show! It was really hard to pay attention and hear anything. So no spiritual uplift today and I was really looking forward to it. My life needs all the spiritual uplifting it can get right now. I've been trying really hard to be optimistic but I just can't be today. I've been noticing somethings that have me worried and scared. Last week I remember noticing that Brylee could close her eyes all the way while she slept and that her drooling had stopped. I noticed that she could smile completely and raise her eyebrows and many other happy things. Today I noticed that her eyes don't close all the way anymore and that she started drooling again. I'm worried that the tumor has started to fight the radiation and chemo and has started to progress again. The awful part is that the doctors aren't doing another MRI until June. Radiation is suppose to be effective for four weeks after the last treatment. Our last treatment is April 19th. Put the four weeks after that will land us right around Brylee's 3rd birthday for her next MRI. I was reading this blog about a little girl that has Brylee's exact same tumor. She passed away in 2009. She fought her tumor for around 16 months. Just reading that mom's emotions and pain brought tears to my eyes. That mom finally let go of her little girl, who was 6, when that little girl said mom I don't want to do this anymore. They stopped treatments and just took her home. I don't know if I can do this that long. And I don't know if I'll be ready to ever make that decision to just stop. I'm so heart broken right now. Every story I have read has come to that end. The decision to stop treatment has always been the final act. Then you just have to take them home and watch them deteriorate before your eyes. I don't want to do this. I don't want this to be my trial and pain. I can't do this.
Eat like an elephant
Friday, April 5, 2013
Over all I think today was a really good day. Brylee started actually playing. She hasn't done that in awhile. She played puzzles all afternoon with my mom. She looks really uncomfortable though. The steroids that she is on are causing her to retain a lot of water weight and gain actual weight. This is making her feet really swollen. They look like they hurt...poor thing. She's been eating like crazy! Holy cow manure this girl can put away food like no ones business! Who woulda thought that a month of not eating would do this to a person? For lunch she ate like 20 chicken nuggets and 2 pieces of pizza! I'm seriously thinking about taking her feeding tube out myself because she is doing fine chewing and swallowing. She hasn't choked once all day long! It's so amazing watching her improve and do better on tasks that she hasn't been able to do for a year. She's smiling, moving her eyebrows, closing her eyes all the way and chewing and swallowing. It's hard to be optimistic though because I keep thinking about how she is doing exactly what the doctors predicted. I don't want them to be correct in how this tumor reacts to treatments. I really hope they are wrong...
Tender Mercies
Thursday, April 4, 2013
I get to add another blessing to my ever lengthening list. We've been blessed in many odd and numerous ways lately. It all started when my husband lost his job in November. Losing a job doesn't seem like a blessing when it happens but it is. He is now able to be here with me and the kids during this time of hardship. We've been blessed with numerous out pourings of help from everyone. We've been blessed with Medicaid, another plus from losing his job. Medicaid is covering all Brylee's medical a hundred percent so we have no out of pocket for her therapy and medications. We lost unemployment right when the first bracelet fundraisers started coming in. It's truly amazing how things worked out (I won't go into all our financial details). Today was just one more testimony builder about how we've been blessed. When our life insurance policy found out about Brylee they said they needed to re-evaluate it. That was two weeks ago and it has been non-stop stress worrying about if they drop her how are we going to pay for a funeral when the time comes. They finally got back to us today and told us that they are not dropping her from our life insurance policy! God works in mysterious ways.
A day in the life of a Cancer Cutie
Tuesday, April 2, 2013
Geez what a day!! It was great and long. It started at 6 this morning with getting up, getting dressed, and Brylee crying that she wanted chocolate. Out the door by 7 for radiation. More crying from Brylee about not wanting to go to the doctors. When they brought her back to us she didn't fight today. She was actually very nice and peaceful (maybe it was the m&m's I was sneaking her! lol). On the way home I sat in the back of the car and gave her m&m after m&m. It's amazing how much she smiles when there is chocolate involved!! A girl after my own heart. When we got home I went to give her all her meds and start her feeds through her feeding tube. Well it was clogged!! We tried for over an hour to unclog the stupid thing. I ended up giving her the meds through her mouth and calling the clinic at Primary Childrens. They told me to bring her in. I took her in and they did our entire clinic visit. They drew labs and refilled meds and talked to me. I then had to take her downstairs to the radiation people to get the NJ feeding tube replaced. They had to strap her down to a papoose board and shoved that sucker in her little nostril. Oh the screaming!!! She has a miserable life. I do not envy her at all. She's my super hero. When they were all done placing the tube I got to take her home. We finally left Primarys at 4PM. I then dropped her off with my husband and I went and took a test up on campus. When I got back I got to see her grinning again when I walked into the room. I love that smile and I'm so excited that it is coming back! Also, Make A Wish called me today so we're going to start planning her wish! Super excited! Although today was exhausting we had a very good day. Smiling from ear to ear.
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