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Friday, September 15, 2017

Addie is in REMISSION!

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,

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

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,

Tuesday, August 29, 2017

Days 10, 11 & 12

Not much to report, other than Addie's ANC (Absolute Neutrophil Count) went up to 20 yesterday (Day 11) which was really nice to see - its been holding steady at 0.  We finally got her to take a shower tonight - she has been terribly afraid and unwilling to do so.  I'm not sure what scared her about it, she takes them at home and even prefers them over baths.  I just think she isn't use to the shower here and given all that she has been through she just isn't comfortable.  It was a bit of a challenge because they instructed us to do our best to keep her dressing dry (they covered it with plastic and tape), so that was a bit of a challenge.

Taking her steroids orally is getting better.  Thank you for all of your suggestions, I can assure you that we will be trying every.single.one, LOL.  We tried it in Applesauce last night and so far that seems like its been the best for her.  She was excited that she could barely taste it.  Next up - Strawberry Jam, Whipped Cream, Cool Whip and hopefully I can get her to be a fan of chocolate pudding.  Once we are home I'm definitely going to try and dilute it as so many of you have suggested.  It seems Grape is the best flavor to mask the nasty powdery, pill taste.  Really excited to try White Grape Juice, or hell even Grape soda.....whatever it takes for her to get the medication down and doing its job.

I had a little talk with Addie about "The Beast" in side of her.  We really haven't addressed what she has or called it by its official horrible name, but we haven't shielded any of our conversations with the nurses or doctors either.  She is too young to understand what Leukemia is, so she just thinks she is in the hospital because she is sick and they have her here to make her better.  I explained to her that the scary Beast (from Beauty and the Beast) is inside her making her sick, and we need to take her medicine to kill him.  That was the best analogy I could come up with, but she totally understands, so mission accomplished!  I'm hoping spinning in this way will help when she pushes us back about taking her medicine.  Once the Beast is dead, just like Belle gets her Prince in the end, Addie will get to be healthy again!

Day 12 - (8/29) - Addie's ANC dropped back down to 4 today which is quite a bummer, since it starts us all over again in the countdown to go home.  After speaking with the doctors, while they expect it to fluctuate up and down, they need to see her ANC at at least 200 due to the infection, and they also need her ANC trending upwards for 2 consecutive days before we are cleared to leave.  Her doctor said he is still hopeful that she can be discharged on Friday after she receives her weekly dose of Chemo.  Prayers to bring up her ANC would be greatly appreciated!  For some good news, we received the results of her MRD (blood) test that was done last week during her Spinal Tap.   It showed that she only has 0.06% of Leukemia cells left in her bone marrow.  The goal is obviously to be 0 (which they will check for certain on Day 29), but her doctors were very happy with this number and have high hopes that we will see them all gone by then.  At least we know the medicine is doing its job! God is good!

In other news, Louie started 8th grade on Monday (cue the tears) and I don't know if its just that we haven't gotten to see him all that much lately, or just knowing that he is in his last year of Middle School, but he just seems so big and grown up to Dan and I 😩.  Bentley is doing great, and somehow I've been pumping more milk than I ever have before, which is at least one positive to when I can't be with him.  Daddy already has him ready for Football season!

With Love,

Sunday, August 27, 2017

Day 9

(8/26) - Today was pretty uneventful - and I am happy about that! A lot of family came to visit, Addie did a lot of coloring and had an awesome appetite again!  Her levels are still low (which is to be expected) and her fevers are staying away.  The only stress we endured was trying to get her to take her steroids orally.  She was receiving them through her IV, but being that we are going to have to administer them at home twice a day (until Day 28), her doctors wanted us to start getting her use to taking them herself.  Addie has never been great at taking medicine - Grape Tylenol is about the only thing she will take and even that is a challenge sometimes.  The steroids themselves are teeny tiny (she needs to take 2 for each dose).  She has never had to swallow pills, so we are practicing with Mini M&Ms and Nerds.  I hope she learns how because the alternative is liquid (which the docs actually said tastes horrible) or crushing her pills into something.  This is what we have been doing, but she is not an idiot and still complains of the taste and fights us to take it.  I welcome any suggestions on teaching a child to swallow a pill or something we can crush it in to mask the taste.  So far we've tried a smoothie and a slushee.  She doesn't like applesauce or pudding =(.

Today was the first day I started to feel all the going back and forth between Addie and Bentley catch up with me. I feel like I've hit a wall and I am just so mentally drained.  The guilt I have when I'm with Addie over not being with or being able to nurse my 6 week old.  And then the guilt I feel when I am with Bentley that I am not at Addie's side 24/7.  The constant guilt I feel that Louie isn't here, or that Dan and I aren't getting to spend very much time alone either...its all just a lot to handle.  Dan and I make a great team and like I have said, I am just so grateful to have him through everything.  He takes care of so much for all of us without me even asking and I'm secretly jealous of how much times he's getting to bond with Bentley.  I just miss the crap out of him and I can't wait for us all to get home.

With Love,

Saturday, August 26, 2017

Day 7 & 8

Day 7 (8/24) - Today was amazing! Addie had an excellent day and the antibiotics finally started kicking in.  Her blood culture came back showing she did in fact have a bacterial infection called Streptococcus Pneumonia.  This is very common - something we all have, except her body doesn't have the means to fight it as a healthy person's would.  Its the same bacteria that causes Strep Throat, Ear Infections and Pneumonia.  Its great that they started the medication yesterday just in case, because that is what they would have given her when they saw this.  Therefore the medication had a chance to start working and today her culture was negative showing no more bacteria in her blood.  The best part for me was to see her up and about, happy and herself.  No more fevers and no more complaints about her throat hurting her!  Her appetite came back too which I was so relieved about!  Dan even brought Bentley to see his big sis since she was in such good spirits, and we knew how happy it would make her to see him. Oh - and Uncle Eric surprised all of us at night, which was a much needed surprise!  We thought he was coming in on Friday!

Day 8 (8/25) - Everyone warned us that this would be a big day for Addie so I woke up with my stomach in knots.  Spoiler Alert - despite them doing a Spinal Tap we had another great day!  Her blood cultures came back negative again (great sign!), but Addie will still need to be antibiotics for 14 days due to the infection.  The good news is that we can administer them at home, so its not something we would need to stay in the hospital for, although her infection did push back our "check-out" date.  Thankfully Addie isn't ready to leave yet.  When I asked her if she wanted to go home, she said "No, I want to stay".  After all she has been through, its amazing to me that she wouldn't want to get the F out of here!   The only part that stunk about today was that she wasn't allowed to eat since midnight the night before and her procedure wasn't until 1:30pm.  Addie was starving and became very "hangry".  All she wanted was Baby Corn (so random!!) and she literally was crying "I WANT BABY CORN NOW"....you have to find the humor these days!  Uncle Jamie and Uncle Eric promised to go get her baby corn to have as soon as she woke up from her procedure - so off they went on a mission! She was pretty upset going into her procedure because she was so hungry but once they gave her some of the medicine to sedate her she calmed down.  The medication they gave her makes her eyes kind of flutter, not completely close - which was so weird to see.  Although we were allowed to be in there with her for the procedure, her Dad and I stepped out.  It is unimaginably hard seeing your baby like that, nor did I want to watch them stick a needle in her back.  Thankfully Dan was OK staying in with her.  It was comforting to us for him to be there for both Addie when she woke up, and also to just know what was going on.  The procedure went well, the fluid was clear and the lab later confirmed that there is no leukemia cells in her Spinal Fluid (Yay!).  They also gave her chemo intrathecally during the procedure, and they drew some blood which they can check as an indicator of how the bone marrow is reacting to the medications.  We won't know those results for another week, and we won't officially know what the bone marrow shows until Day 29.  She woke up totally silly and asking when she could eat her baby corn, LOL.  They told us to have her start slow with drinking and then eating but Addie tore into her chicken nuggets and baby corn as soon as she was back in her room...I couldn't believe my eyes, haha.  I can't reiterate how nice it is to see my girl eat and have such an appetite (thank you steroids), as this is not usually the case - even before all of this.  She also got another dose of Chemo through her IV which she handled well.  The rest of the day Addie had a room full of family and more toys to open, another visit from both of her brothers and a whole lot of smiles!  Nick and I sometimes swap throughout the day being with Addie, so that we each can run home if we have to to take care of things, I can nurse Bentley, or just go get some air.  Dan and I went out for a nice dinner and got to sit outside (hello Fall weather, so nice to see you peaking in!).  It was really nice to just feel normal for a little and do normal things we are so use to doing.  Please continue to send your prayers and love and I will continue to say Thank You, thank you, THANK YOU!

With Love,

Thursday, August 24, 2017

Day 6

8/23 - Addie's temperature was up and down throughout the night, never exceeding 100.8, but to lean on the side of caution the doctor decided to give her a broad spectrum antibiotic to kill anything if it is in fact a bacterial infection.  They also took blood cultures to ensure the infection is not in her bloodstream.  If it is not an infection and just a virus, like any other virus, it has to run its course. This could be our explanation as to why she has been so out of it and sleeping / not eating the past couple days.  In other GREAT news, part of her bone marrow biopsy came back showing the doctors exactly what her genetic mutation cells are made up of.  I am happy to report that those specific cells are cells in which they know exactly what their makeup is and how to treat them.  The doctor shared that this now puts her at a low risk and also attributes even more to a wonderful and curable prognosis for her! God is so good!

Some of you have expressed concern and are curious about how I am doing and coping with all of this and a newborn, too.  I am trying to take each day a step at a time and process the information a little bit at a time.  Its hard, but I am trying to not get too ahead of myself with questions and things to worry about.  It has helped tremendously to constantly be surrounded by our loved ones, and when they go home at night to turn to my social media and receive hundreds and hundreds of warm and uplifting messages.  I never feel alone and its all making this a tiny bit easier on me.  Its true what they say and does take an army and we are incredibly blessed and grateful to have the people in our lives that we do.  Without them, I would not be able to be at my little girl's bedside as much as I am.  Dan's boss has been amazing to us and basically told him to not even worry about work at the moment. The nice thing is, is that he works in this hospital. Therefore he has still been able to take some calls and have meetings against his bosses instructions.  I'm glad he at least gets to feel a little normal and get his mind out of this hospital room for a little, too.  We keep saying how crazy it is that things work out the way that they do and how ironic that he can still be here with Addie and at work at the same time.

There is a family stay / small hotel across from the hospital for families who need to stay long term. We have been keeping Bentley there pretty much the entire time and between Dany, my Mom, and our family and friends, he is being well taken care of and smothered in love.  Its nice for me to have him so close, because I pop over there once or twice a day to nurse him and spend a little time with him, too. The hospital also gave me a pump, so when I am not with him I am pumping. The last thing I want is for my supply to go down so I have been doing everything I can to keep it up and not let the stress effect it either.  **Shoutout and admiration to exclusively pumping Mommys or those who work full-time...being attached to a breast-pump, washing and sterilizing parts and bottles - rinse and repeat is a little job of its own!  Louie is staying with Dan's parents while we are at the hospital and I can't express more the relief that we have that our other children are being so well taken care of. Louie is up to visit Addie a lot and he always puts a smile on her face or is able to get her to talk on the phone when she won't talk to anyone else.  I love how much she loves her big brother. With Bentley, we keep saying that God couldn't give us a better baby to be in this situation. Its like he knows what is going on and is being incredible for us.  He just eats and sleeps and is quiet most of the day.  Unfortunately there are just too many germs in the hospital for him to catch, so we really haven't had him up to visit with Addie. She misses her brothers and asks about them constantly, which is always a kick to the stomach.  We can't wait until we are all back home and under one roof again, soon.

Dan has been my ROCK and I do not know how I could possibly be enduring all that I am without him AND his family by my side.  I tell him everyday how grateful I am and thanked his Mom for giving me such an incredible man.  And if he weren't wonderful and enough of a support, I feel so lucky to be a part of his family.  They have always treated Addie like their own, but more than ever, every single one of them has stepped up to offer their help, share their worry, and wrap their arms around us and her.  Dan's 2 cousins and their families (4 of Addie's favorite cousins) drove up from NY over the weekend and basically spent the entire day in the waiting room because Addie was having such a rough day. They refused to leave even though we told them she wasn't up for visitors and had lunch and dinner in the waiting room waiting out for when she would be feeling better (which she did!). One of his cousins is fighting his own battle with Stage 4 Esophageal cancer and actually had his surgery scheduled 2 days after their visit to Addie (which was a success, btw!).  We insisted that he should stay home but he insisted that he wanted to come be with Addie.  I am in tears even just writing about how wonderful and selfless they all have been.  It goes without saying how incredible my family has been too.  Between my Mom helping out with Bentley and being at Addie's bedside whenever she can, cooking us meals and bringing them to the hospital and my Dad leaving work early from NYC everyday to be by his favorite girl's side with whatever she asks for.  We keep joking how we hope Addie doesn't ask Papou for a Unicorn because he will probably go find one! My older brother spent the entire last weekend with us - again even though she wasn't up for visitors and he is coming back up this weekend.  And my little brother is flying up from NC this weekend to be here for her Spinal Tap on Friday and then coming back again next week . How did we ever get so lucky?

You all will get tired of hearing me say it, but I am going to keep telling you all how grateful we are for your prayers and positivity.  God is answering our prayers and we have all of you in his ear to thank for it.  I wish I could personally respond and thank each and every single message we receive - it touches my heart more than you know.  I cannot wait to be able to share with Addie how many prayer warriors she had fighting for her and how loved she is around the world, from complete strangers.  I will never be able to express how humbled I am by all of you.

With Love,

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