Hi Everyone! Its been a little before I have updated as we have been settling in at home and trying to find our new "way". I updated on my Instagram (@Michelebell21) when we came home, so hopefully you can follow me there, as sometimes its easier and faster for me to post updates. Addie is doing so great at home! The only time she is upset or crabby is when she has to stop eating, LOL. Seriously though - steroids are NO JOKE! They have turned my picky eater into a ravenous little girl who just wants to eat all.day.long. She wakes up in the middle of the night to go potty a lot (she is drinking a ton of water - which is awesome!) and always asks what we are having for dinner and tells me what she wants for breakfast and what she wants me to get at the store. I'm always half asleep at 3am and laughing hysterically at our food conversations in the middle of the night! Thankfully she took her last dose of steroids last night, but it will be a few days before they are out of her system. The doctors also warned me that coming off of them may cause her to be moody. The steroids have also made her legs pretty weak and she is having trouble going up and down stairs, which is heart-breaking. I think seeing her struggle with the steps has to be the hardest for me yet. The steroids have also made her face all puffy and belly crazy big. The doctors have assured us that this is all normal and will all go away and she will return to her normal self after the steroids are gone-thank God. I know they are necessary for her treatment, but I hate them even more than chemo. So far (knock on wood) she has been handling the chemo like a champ! Her hair is starting to thin in places and come out in strands when we brush or wash it and I have been dreading this the most. I tried having a little talk with her about it last night and the nurses even gave her a barbie named Ella who is bald and comes with different wigs. I don't know if she has grasped it yet nor do I know if she will completely lose it or if it will just thin out and get patchy. Her hair will grow back and if that is the worse thing that happens, I'll take it. My fear as her Mom is just how she will be perceived or treated by her friends and other little ones who can't quite understand or are use to seeing their friend without any hair =(. I just don't want it to effect Addie, though the nurses have assured us that most kids her age aren't usually phased by it. Her hair is so long and she's never had it cut, so we are starting to talk about it more and even hinting at the possibility of cutting it a little shorter so it is a little easier to manage. Thankfully she hasn't had any other side-effects from the chemo, so we are counting our blessings about that. Day by day, one conversation at a time, one step at a time. Thats how we will make it through.
Today is Day 29 - the BIG day that we have been waiting for since we were given her diagnosis. She had her spinal tap and bone marrow biopsy yesterday and did so great! They also gave her another Intrathecal dose of chemo. Funny sidenote- I actually woke her up at 1:30am the night before to let her eat some pasta because she wasn't allowed to eat or drink past 2am. Her procedure wasn't until 10:30am and needless to say my child was the definition of HANGRY all morning! Her doctor called me tonight to share that - wait for it....ADDIE IS IN REMISSION!! Her bone marrow came back showing 0 leukemia cells!! We won't know the results of her MRD results until Monday or Tuesday when we will also be given her next 28 day treatment plan for the consolidation phase - based on her risk, determined by the MRD test.
Thank you for all of your prayers, I am so happy to share that they have been answered! Please keep praying for my little girl and I will keep fighting this battle alongside her and keeping you all updated along the way!
With Love,
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Friday, September 15, 2017
Tuesday, September 5, 2017
Day 19
Addie's ANC is up to 50 FINALLY! This is the highest its been since it fell from 60 about a week ago. She has 3 different oncologists on her case and her doctor today said he would feel most comfortable with keeping her here until we saw her ANC at 100. Her doctor yesterday (I think) would have let us go home today since she had 2 consecutive days of it increasing. Of course we all want to go home, however we don't want to go home to return back the next day, so I am ok with her doctor leaning on the side of caution. Other then her ANC, all of her other {big} numbers are also going up! Her platelets doubled from yesterday which her doc said is a great sign that her bone marrow is producing new and healthy cells! Her Monocytes are also in the double digits and holding steady which is another relief (they were at 0 up until 3 days ago). The Monocytes are what create Neutrophils and the Neutrophils are what make up the ANC - along with the White Blood Cells. I keep joking that I will be an Oncologist when this is all said and done, being that we are receiving a crash course everyday on blood and how cancer affects it! I will never look at another CBC test the same again!
Other than that, not much to report (always a good thing). I am itching for us to get home and return to some sort of normalcy. I am excited to throw myself back into work - I truly miss it and connecting with everyone so much! As most know, Fall is my absolute FAVORITE time of the year and being that is is finally September, there is so much to look forward to! The smells, the cozy sweaters, the boots - I want it all! The amount of "retail therapy" that I have been doing is kind of insane. Shame on you online shopping for being way too easy to do from a hospital room! I can't wait for Addie and I to decorate when we get home as we do every year, and fill our home with leaves and Pumpkin Spice EVERYTHING! I miss Jakers LIKE CRAZY and have only been able to see him twice over the last 3 weeks. He is currently staying with Nick's parents and I am grateful to them for giving him a loving home and lots of attention while we are away. I think I may try and film a little update video to my YT channel tomorrow when I am home for a little with Bentley - keep you posted on that. I miss you guys so much!
As Dan and I have been saying from Day 2 (Day 1 we were still in shock/numb), things can be SO much worse for us. We have heard such sad stories from some of the nurses here about other kiddos on her floor and their sad circumstances. I just saw on the news about the beautiful 22 year old girl who was murdered on Temple University's campus (my alma mater). And of course Hurricane Harvey and all that it has left behind (not to mention the fear of Irma hitting the US next). To even be safe in a hospital that isn't being evacuated is a wonderful thing that we are not taking for granted. It makes me so sad that others haven't been as fortunate. All of these sad things happening to others and around the country / world really keep everything into perspective for us. Addie's friends all started school today without her, and the constant photos on FB and IG of everyone's kids on their first day of school definitely puts a knot in my stomach. I know that if I really stopped to dwell on it, I would end up on the floor and it would be hard to pick myself up. But I am staying hopeful that she will be rejoining her friends at school before she knows it, and really won't remember ever missing out. She needs to get healthy and that is what matters right now. There will always more"first days of school" to come.
As hard as this time is on us and incredibly tough at times - things can always be worse. So in a sort of weird way, we are grateful to at least be in the position we are in with this. The fact that the this disease is so well researched and her doctors know exactly what they are doing and how to beat ALL. We are so thankful that Addie is already responding so well to treatment and handling it all like the little Warrior Princess that she is (she still doesn't want to go home!). In tough times we always have a choice. We can let it defeat us and define us, or we can push through the mud and overcome, only to come out stronger than ever. I'll always choose the 2nd option because the alternative doesn't help anyone (and really, who wants to be defined by cancer?!). I say this all with ease thanks to the incredible support we are constantly surrounded with. I always say that in these tough times, you truly see who your friends are, and I could not be more proud of the friendships we have and the families that we come from. It wouldn't be easy to stay so positive and continue pushing past the sadness without them - and of course all of you ;). Thank you again, for all of your prayers, good vibes and love. You will never know how much you all mean and how much it has helped. I love that one day our girl will be able to look back at the "army" of people and prayers she had behind her helping her fight this fight. I wish she could comprehend just how loved she truly is - even by people she has never even met.
With Gratitude <3
Other than that, not much to report (always a good thing). I am itching for us to get home and return to some sort of normalcy. I am excited to throw myself back into work - I truly miss it and connecting with everyone so much! As most know, Fall is my absolute FAVORITE time of the year and being that is is finally September, there is so much to look forward to! The smells, the cozy sweaters, the boots - I want it all! The amount of "retail therapy" that I have been doing is kind of insane. Shame on you online shopping for being way too easy to do from a hospital room! I can't wait for Addie and I to decorate when we get home as we do every year, and fill our home with leaves and Pumpkin Spice EVERYTHING! I miss Jakers LIKE CRAZY and have only been able to see him twice over the last 3 weeks. He is currently staying with Nick's parents and I am grateful to them for giving him a loving home and lots of attention while we are away. I think I may try and film a little update video to my YT channel tomorrow when I am home for a little with Bentley - keep you posted on that. I miss you guys so much!
As Dan and I have been saying from Day 2 (Day 1 we were still in shock/numb), things can be SO much worse for us. We have heard such sad stories from some of the nurses here about other kiddos on her floor and their sad circumstances. I just saw on the news about the beautiful 22 year old girl who was murdered on Temple University's campus (my alma mater). And of course Hurricane Harvey and all that it has left behind (not to mention the fear of Irma hitting the US next). To even be safe in a hospital that isn't being evacuated is a wonderful thing that we are not taking for granted. It makes me so sad that others haven't been as fortunate. All of these sad things happening to others and around the country / world really keep everything into perspective for us. Addie's friends all started school today without her, and the constant photos on FB and IG of everyone's kids on their first day of school definitely puts a knot in my stomach. I know that if I really stopped to dwell on it, I would end up on the floor and it would be hard to pick myself up. But I am staying hopeful that she will be rejoining her friends at school before she knows it, and really won't remember ever missing out. She needs to get healthy and that is what matters right now. There will always more"first days of school" to come.
As hard as this time is on us and incredibly tough at times - things can always be worse. So in a sort of weird way, we are grateful to at least be in the position we are in with this. The fact that the this disease is so well researched and her doctors know exactly what they are doing and how to beat ALL. We are so thankful that Addie is already responding so well to treatment and handling it all like the little Warrior Princess that she is (she still doesn't want to go home!). In tough times we always have a choice. We can let it defeat us and define us, or we can push through the mud and overcome, only to come out stronger than ever. I'll always choose the 2nd option because the alternative doesn't help anyone (and really, who wants to be defined by cancer?!). I say this all with ease thanks to the incredible support we are constantly surrounded with. I always say that in these tough times, you truly see who your friends are, and I could not be more proud of the friendships we have and the families that we come from. It wouldn't be easy to stay so positive and continue pushing past the sadness without them - and of course all of you ;). Thank you again, for all of your prayers, good vibes and love. You will never know how much you all mean and how much it has helped. I love that one day our girl will be able to look back at the "army" of people and prayers she had behind her helping her fight this fight. I wish she could comprehend just how loved she truly is - even by people she has never even met.
With Gratitude <3
Saturday, September 2, 2017
Day 16 & Catch-Up!
We've been in a "holding pattern" here the last few days just waiting for her ANC to go up, so I apologize for the lack of updates! We played all morning on Thursday while she was out of bed and went from one activity to the next. She was super energetic and happy and it was a nice change to see her acting "herself". Normally she does one thing and then wants to get back in bed, so I had a feeling she was feeling better. Sure enough we finally had our prayers answered yesterday morning when they told us that Addie's ANC came up to 60! Its been at 0 the last several days, so it was a welcomed relief. She had some special visitors one day, though she was having a "shy" moment, LOL.
She received her weekly dose of Chemotherapy on Friday and her doctor said it should not affect her ANC levels, but it unfortunately did drop to 40 today. Although it didn't go up, I am relieved it didn't fall all the way back to 0. We are still hoping and praying to be discharged over this long weekend. COME ON ANC! She has been doing great with taking her steroids crushed up in applesauce and thanks to them has had a pretty crazy appetite and is always craving things with salt. The downside to the steroids (in addition to her poor face becoming puffy) is her mood swings and overall attitude towards people, especially her parents & family. That has been the most frustrating thing as her Mom- to see her go from extreme highs to extreme lows in a matter of seconds. In those moments of her being so moody and bossy and blah, I miss my baby girl so much. I know its just the medicine and I feel bad for even getting upset or frustrated with her because she has no control over what they are doing to her. I just have to keep reminding myself that this is all temporary.
💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛
If you follow me on Instagram (@Michelebell21), you would have seen that Addie and I both got a pretty amazing surprise on Wednesday when my Sister-in-law, Julie and Addie's 5 month old cousin Penelope busted into her hospital room! They flew here from Louisiana and it put a huge smile on both of our faces. It was also special because it was the first time Penelope got to meet her little cousin Bentley for the first time. Seeing them together is too stinkin cute! They are basically the same size, however 17 weeks apart! Penelope is such a little peanut!
Everyday in the hospital they play a little tune every time a patient receives his or her last chemo treatment. And every time we hear the music we cheer that their Beast is dead! I can't wait for them to play the music for Addie.
With Love,
She received her weekly dose of Chemotherapy on Friday and her doctor said it should not affect her ANC levels, but it unfortunately did drop to 40 today. Although it didn't go up, I am relieved it didn't fall all the way back to 0. We are still hoping and praying to be discharged over this long weekend. COME ON ANC! She has been doing great with taking her steroids crushed up in applesauce and thanks to them has had a pretty crazy appetite and is always craving things with salt. The downside to the steroids (in addition to her poor face becoming puffy) is her mood swings and overall attitude towards people, especially her parents & family. That has been the most frustrating thing as her Mom- to see her go from extreme highs to extreme lows in a matter of seconds. In those moments of her being so moody and bossy and blah, I miss my baby girl so much. I know its just the medicine and I feel bad for even getting upset or frustrated with her because she has no control over what they are doing to her. I just have to keep reminding myself that this is all temporary.
💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛
If you follow me on Instagram (@Michelebell21), you would have seen that Addie and I both got a pretty amazing surprise on Wednesday when my Sister-in-law, Julie and Addie's 5 month old cousin Penelope busted into her hospital room! They flew here from Louisiana and it put a huge smile on both of our faces. It was also special because it was the first time Penelope got to meet her little cousin Bentley for the first time. Seeing them together is too stinkin cute! They are basically the same size, however 17 weeks apart! Penelope is such a little peanut!
Everyday in the hospital they play a little tune every time a patient receives his or her last chemo treatment. And every time we hear the music we cheer that their Beast is dead! I can't wait for them to play the music for Addie.
With Love,
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