Another Fever + Goodbye Consolidation Phase!

As I mentioned in my last post - we had a repeat of Round 1 of the Consolidation Phase and a repeat of the same nasty Chemotherapy that destroys her counts.  We were expecting for the fever to hit us (if she were going to get one) around Thanksgiving, but thankfully we dodged that bullet and had a wonderful Thanksgiving with our family!  The fever did come though!  She got a cold a few days after Thanksgiving and a week later, she spiked a temperature on Sunday evening (12/3).  Numbing cream on the port and off to the Hospital we went - rinse and repeat!  We expected her counts to be low given the cold she had and sure enough her ANC was at 0 so to the pediatric unit we went to stay for the next several days!  They administered the standard antibiotic that pretty much covers any kind of infection, took blood cultures to see if anything is in her bloodstream, and a swab up the nose to rule out any kind of respiratory infection.  The blood cultures take 24 hours while they wait to see if anything grows on them - confirming or denying an infection.  The following night one of the cultures was positive and the other was negative.  The doctors seemed to think that it was most likely a contaminate that caused the positive (something as simple as her coughing or sneezing while they drew her blood).  Addie didn't have any other symptoms other than her fever and her Respiratory panel came back negative. She only had one dose of Tylenol in the ER and was able to fight the fever on her own the remaining time we were in the hospital.  To be able to leave the hospital her doctor wanted to have her be fever free for 24 hours AND her ANC on the rise.  The fevers were gone but her ANC was holding low and steady, which caused us to remain in the hospital for the next 5 days.  It was so frustrating because Addie felt great, looked great, was eating and drinking just fine. The even stopped her fluids after 3 days because she was eating and drinking and wasn't at risk for dehydrating.  They disconnected her from the obnoxious pole we had to move around with and she could move up and about her fancy (not) hospital room.  I compare waiting for her ANC to come up to "watching paint dry".  They only ever check her counts every morning, so when we would get her numbers in the morning, even if she had a wonderful day - we had to wait until the next morning to see what they would do.  We even had one of her little friends come visit her, which absolutely made her day!  Santa came to visit Addie too and brought her a bunch of goodies AND we had some visits from a few furry friends!! Child Life kept her busy with Christmas crafts and Strawberry, her Elf even showed up to watch over her at the Hospital!  Finally on Friday her ANC came up to 100 (still not great, but better than where it was all week) and her doctor felt confident enough to let us go home.  He wanted to send her home with an antibiotic just in case what the blood culture picked up was anything - better to play it safe than sorry.  A home health nurse came on Saturday to teach me how to administer the antibiotic through her port and I gave it to her each day for the next 6 days.  Her school has been sending home the crafts they do each day so Addie doesn't miss out - which is so sweet!

 

I say GOOD RIDDANCE to the Consolidation Phase as it wreaked havoc on my girl's immune system and her numbers / counts overall. I am so proud of how well she handled it all - and always with a smile on her face.  We were set to start our next phase (Interim-Maintenance) this past Wednesday (12/13), but in order to start that phase her ANC has to be above 750 and her platelets above 75.  They did a CBC on Tuesday which revealed her ANC back down to 60 (basically 0) and platelets at 59....SO FRUSTRATING!  They will be checking her numbers again on Tuesday and if she makes her counts we will begin the next phase on Wednesday.  On Day 1 of Interim Maintenance (I/M), Addie is going to have a spinal tap and bone marrow biopsy done before they can begin her chemo.  These are to ensure that the Consolidation phase with the intense chemo due to her being High Risk - worked.  I/M requires us to be admitted for about 4 days during which she will be given a high dose Methotrexate which will infuse over 24 hours as well as a subsequent drug and lots of fluids to help flush it out.  Methotrexate can be very damaging to the liver and kidneys, hence the need for flushing.  After 24 hours they will begin checking her levels and once they get to a safe level we can be discharged.  There will be 2 weeks in between each hospital admittance (assuming we will not be delayed due to low counts prior to each admission) and we will be admitted 4 times.  I/M is typically a 2 month phase give or take any delays we may encounter.

So that is where we stand today.  Addie is continuing to fight this beast with a great attitude and she is handling it all so so well.  I still can't believe she has this disease given how she looks/acts/feels everyday.  If you follow me on Instagram you have hopefully gotten to see my girl dancing non-stop - its all she wants to do!  We are enjoying the Holidays, and though we didn't get to go to some of our favorite places during Christmas (so not worth the risk of her getting sick), we are doing our best to enjoy the Holidays at home this year with decorating, Christmas cookies, Elf on the Shelf, hot cocoa and lots of Christmas movies - with a few trips around town to look at Christmas lights, of course! It makes me so happy to see that she has just as much excitement and love for the Christmas season as her Mama. 

I ask for continued prayers that she will continue to feel good through all of her treatment, and that she makes her counts so that we can start I/M next week.  Thank you all for reading and following along on our journey, and I hope the Holiday season has been good to you all!  How is Christmas in 10 days already! I don't want it to end!! 

With Love,

Back in the Hospital + Wedding Roller Coaster!

I came on to share an update and realized I never hit publish on my draft of the entry below-woops!  I have been sharing updates and photos on Instagram so to some of you this post is way old news ;).  Even though this was 2 months ago - I want to have it documented here for us to look back on.  Stay tuned for a current update later today ;). xo
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October 18, 2017

The last 5 days have been CRAZY!  I guess we will start with some back information we were told a few weeks ago.  Due to a couple of the Chemo drugs (one specifically, but when mixed with another its a worse effect), the docs told us to expect Addie's counts (ANC, Hemoglobin, Platelets, etc.) to drop 10 days from when she received the chemo.  That put us right around our Wedding weekend (10/13/17).  Dan and I asked all 3 doctors if they recommended we postpone the wedding due to this and all 3 of her doctors encouraged us to move on with it, especially for Addie's sake as she was so excited and looking forward to it - non-stop talking about the Chocolate Fountain and the songs she wanted to dance to!  Addie, as I said in my last post has been feeling and acting amazing, has been in great spirits and we have just been living "normal life", so it was crazy to think her counts would even be effected.  On Thursday she was great all day, having more dance parties and playing non-stop.  While we were at the Rehearsal dinner she started to get tired, she felt a little warm but we took her temperature and she didn't have a fever.  A couple hours later she felt warmer and sure enough spiked a fever.  We put some numbing cream on her port (so it doesn't hurt when they access it to take blood and give antibiotics) and headed off to the hospital (standard protocol).  Her doctor called me on the way and explained that if her ANC was below 500 she would have to be admitted, but if it was above 500 they would just give her an antibiotic and send us on our way.  Her ANC turned out to be 1100 (God and prayers, I'm telling you!), so they gave her an antibiotic that lasts in her system for 24 hours and some Tylenol which immediately took her fever away (they do not want us giving her Tylenol at home to mask a fever if its going to happen).  Her platelets were a little low so they gave her some more of those, too.  It was all standard protocol, but in typical ER fashion, we sat around and waited 2 hours just for them to send up the Platelets from the Pharmacy.  We walked out of the ER at 4:30am on the day of our Wedding.  I honestly didn't think the wedding was going to happen...and I really didn't want to put Addie through it if she wasn't feeling well.  As soon as we got to the ER, my mind was pretty much made up that we would be postponing our day and we were OK with that.  As soon as we got in the car she started asking if we could still have the wedding, how many minutes before it happens and explained where she put the lollipops she had for all her cousins when we saw them.  I breathed a sigh of relief and kept asking over and over if she was sure she still wanted to go and not stay home and rest, but she insisted!  The Wedding went off without a hitch and Addie had a BLAST.  She was on the dance floor the ENTIRE time and running around with her cousins as if we didn't just get discharged from the ER hours prior! She thoroughly enjoyed the chocolate fountain and the make your own sundae bar, too - Oh and the Shirley Temples were flowing all night!  I fully expected to be back in the hospital after midnight when the Antibiotic wore off but to our surprise she didn't have a temperature!  The next morning though when she woke up she was warm and sure enough had a fever again...so it was back to the Hospital we went-only this time we got admitted because her ANC was now at 56 (down from 1100 the night before), like I said, God & prayers.

They haven't been able to explain what caused the fevers (blood and urine cultures, as well as her respiratory panel, all came back negative) but it was definitely due to her counts being low and her being Neutropenic.  It could have been any spec of germ that got on her, or piece of bacteria.  When her immune system is at 0 her body has no way of fighting any kind of infection - scary stuff, none-the-less.  They warned us well in advance (from Day 1) that this would happen and to expect it - not often, but once in a while, so we weren't in panic mode, we were all actually quite calm.  Unfortunately, this is just all part of it and now that we have a better understanding of ALL and what all comes with it, it definitely makes for much less scary situations.  The only frustrating thing is just spending our days in the hospital waiting on her counts to go back up - especially when she looks great and is acting her crazy self.  We would obviously much rather be at home where its comfortable.  She will receive her last Spinal this week for an entire month as well as Chemo, before we start Part 2 of the Consolidation phase.  Because we repeat the same chemo treatment as Part 1 of this phase, we fully expect to be here again when her counts drop in the middle of this next phase.  Its very reassuring to hear from everyone, docs, nurses, child life, etc. that this is all "standard".  Not normal per say, but normal for someone fighting ALL.   So here we wait in the hospital just waiting for her counts to go back up so we can go home.  As of today she has been fever free for 48 hours which is awesome!  She's acting herself, wanting to wear clothes and PJs and not the hospital gown, is hungry and she keeps complaining that she is still hooked up to her IV (fluids) because she wants to get up and dance, LOL. 

Prayers please that we will be able to get out of here by the weekend so we can have some fun with Fall festivities!  Thanks for reading and for all the wedding well-wishes!  I'm just so happy that Addie enjoyed herself so much and our families and friends all got to celebrate something some good and positive for a change!

With Love,

My Bald Beauty!

A week ago I witnessed by 4 year old turn into a Young Adult right before my eyes.  Lets back-up....When Addie first started losing her hair, I cut it to about a bob length to make it more manageable and less tangly.  She didn't want me to cut it (she never had a haircut before), but I explained to her how the medicine they give to her to kill the beast, also makes her hair fall out.  We started having daily conversations about her hair and the staff at the clinic also helped with the conversations too.  She is still pretty young to have something like hair affect her, but she has never had a hair cut and always loved her long hair, so I was prepared that while most kids aren't phased by hair, I knew Addie would be.  She was really upset at first, but understood.  I also explained how when it does grow back, it may be even different than it use to be!  We keep saying how exciting it will be to see if her hair grows back the same or totally different - she wants it to grow back pink, lol.  Once it was shorter, I was brushing it once a day to avoid it from tangling and getting matted...but we had been keeping it up and out of the way for the most part.  She didn't like seeing how much came out in her Tubby or her hair brush.  If I'm being honest, I was looking forward to the day when we could shave it because it was just getting everywhere and making her upset to see.  I asked her early on if she just wanted to shave it off completely but she didn't want any part of it and I wasn't pushing.  We asked her if she wanted to wear a wig that looked just like her normal hair and she was really excited about it!  We discovered an incredible organization called Children with Hair Loss who gifts kids a real-human hair wig every year until they turn 21.  The wig was gorgeous, but looked very "adult", so I had my sweet friend who is a hair stylist come over and make it more like Addie's original hair.  It was hard for her to put the wig on with the hair she still had left and her little top knot, so as much as she loved it, she wasn't crazy about wearing it - which was totally fine with me.  I started planting seeds again, about shaving the rest of her hair off but it wasn't well received.  The clinic gifted her the Ella barbie who is bald and comes with 2 wigs.  They also let Addie play with their bald American Girl Doll each time we were there, and sent us home with books to help her come around to the idea.  Last Tuesday night I was brushing her hair before bed and Addie caught a glimpse of herself in her mirrored dresser.  She broke down and was very upset seeing her scalp in some areas.  I kept it together for her and told her how it wasn't a big deal at all, wouldn't be for too long and it will grow back.  Most importantly I reassured her that she will be just as beautiful whether she has hair or not.  I was secretly dying inside watching her be so effected by it.  I said, "Addie, lets just shave it off and get it over with, it will be easier for you to wear your wig if you want, too".  I also had been buying her really cute hats and headbands that I showed her as well.  Louie came in when he heard her crying and as always Addie's face lit up.  He was encouraging her to just do it, and Addie would do anything Louie tells her to do.  So she said, "I want Louie to shave my head?" We ran with it!  We let her use her own scissors to trim off some more of her hair and make it fun, before Louie (Dan) started shaving off the remaining strands on her beautiful head.  Call it a family affair, but it was a moment that I will never forget and one that brought all of us so much closer.  She jumped in the shower afterwards to get off all the small itchy hairs and said it felt funny and started laughing!  It was all smiles from there and honestly I breathed a huge sigh of relief.  We then Face Timed everyone to show off Addie's new do' and everyone's excitement and reaction definitely helped to make it much less of a "no big deal".  Her wig slipped on super easy after that, though Addie didn't have much interest in wearing it.  She said she just wanted to wear it for the wedding.  We told her she didn't have to if she didn't want to but she was excited about it, so again we went with it.  I doubt the wig will ever go back on her head and I would actually prefer it that way if I am being honest.  The wig is beautiful, but its obvious that its a wig and she just looks so much more herself without it.  She looks adorable and she is comfortable and thats all I could ever want.  After the ceremony, we encouraged her to take the wig off and just have fun and dance without having it itching her or being too hot.  This day was one I was dreading ever since we got her diagnosis, but it honestly went so much better than I could have imagined.  She is happy and comfortable, which is all I could ever ask for.

Here are a few photos from the wedding - though they aren't the best quality...I didn't have my phone on me at all during the wedding, so they are photos sent by friends/family.  I can't wait to share more once I get them from our Photographer!

I plan on booking an appointment as soon as I have a second, to chop off my hair and donate it to Children with Hair Loss to be made into a wig for another little girl who has a beast living inside her.  Addie wants to come with me and cut my hair the same way she cut hers, so it will be a fun day ahead!

Truthfully, I wish we had done it sooner, but regardless I'm just happy its over with.  The anxiety leading up to it was terrible!  It went so much better than I expected and I am grateful for all of the support, barbie dolls, books, etc. that helped Addie feel more comfortable with losing her hair.  We can't wait for the day that it grows back so we can see how different (if at all) it will look!

With Love,

Consolidation Phase + Update!

I didn't mean to leave you all hanging, I promise!  We have settled in so nicely at home and returned to our normal activities!  We've been having playdates and seeing our friends, started Physical Therapy (which she LOVES), enjoying her new swing set outside and still being the best big sister and helper to her baby brother!   I haven't had a chance to get on here and share an update, but its all for good reason, I promise!  A lot has happened since my last update, with the biggest thing being that just 3 hours after I posted about Addie's remission, we received a call from the vet that Jake had taken a turn for the worse (we brought him in earlier because he was just acting "off").  He ended up going in for Emergency Surgery after they thought he was internally bleeding and found he was loaded with masses all over his spleen and liver =(.  They euthanized him on the table and once again my heart broke into a million tiny little pieces.  Talk about extreme highs and low lows...all in the matter of hours.  Jake had hemangiosarcoma which is a vicious and fast-moving cancer.  His doctor didn't think he had it for more than a few weeks.  Him being sad, not wanting to eat his food unless we put cheese in it, and just not acting himself while we were in the hospital, we chalked up to him having a sense of what was going on with Addie.  He wasn't home for 3 weeks, was getting passed around from house to house and wasn't seeing myself, Dan, the kids or Nick very often.  Once we returned home, he was back to his happy, crazy self, eating, drinking and pooping....no vomiting- NOTHING.  The only thing that prompted a phone call into his vet earlier that day, was that he wouldn't get off the bottom step to go for his morning walk-Dan had to pick him up. So I immediately knew something was wrong.  Jake loved his walks and I know he looked forward to them each morning.  The vet had initially thought he had ingested a "foreign object" like a toy or a paper towel that was causing a blockage, which showed up on his chest X-ray.  Now we know it was actually a mass.  Several people have reached out sharing how in their culture they believe that animals take on the sickness of their loved ones, so it has brought me a little bit of peace and comfort thinking that maybe Jake took Addie's cancer on himself, so she didn't have to suffer.  Dogs have a sixth sense and I believe he waited for us to be home and settled to make sure we were all ok before he had to leave us.  It sounds crazy-I am well aware...but I do believe in things like this and I also believe that God had a reason for taking our boy at just 8 years young AND at this time when all of this is happening.  There is an incredible void in our home and there moments every day, where I still catch myself thinking subconsciously that I have to feed him, close the pantry door so he doesn't raid it, and take him for a walk, or run home to let him out....the normal thoughts that would always be in my head everyday.  If there is a Pet Medium I can find, I will.  I would love to connect with Jake.  I always joked that he was my first born and who made me a Mommy.   To most they would laugh, but to those who are "dog moms", they got it.  Dogs are the definition of unconditional love and I am beyond grateful for the 8 beautiful years I had with my little boy.  He was there first...before anyone else and he was at my side for every single twist and turn, up and down and dark time life threw my way.  I was never alone and he ALWAYS managed to give me comfort.  My heart is broken, and though time will heal it, there is a piece of it that died with Jake that day.  It all jsut happened so fast. Its good and its bad, I guess.  He didn't suffer at all and was never in pain up until the end, but it was so sudden and I wish we had more time.  I know dogs don't live forever and I knew this day would come, I just didn't think it would be coming anytime soon.  He had the soul of a puppy....so playful and happy all the time - literally the night before when I came home from my appointment he greeted me at the door, toy in mouth barking and banging his tail up against the wall.  I never took him for granted, EVER.  Kissed him goodnight every single night before I went to bed and hugged on him every morning when I got up.  He slept outside the kid's rooms at night and kept us all feeling safe by barking whenever there was someone on our property...even the UPS man, who is literally at our house everyday!   I am confident that we gave him a great life, filled with so much love and people who loved the hell out of him.   I'd like to think that Lucy was waiting for him at the Rainbow Bridge and they are both healed from any pain and are enjoying an new life together.  I know I will see him again one day and it will be the most joyful reunion EVER <3.

Switching Gears to Addison....so the Monday after we got the call that she was in remission, her doctor called again to say that her MRD (minimal residual disease) test results came back showing a residual of 0.04% leukemia cells. He was dumbfounded and I was shocked.  He explained that when he did the biopsy- 0 cells were detected and she is in fact still in remission.  In the 90s when the biopsys would show this, they would proceed with the normal treatment for a Standard Risk patient with ALL.  However, the leukemia would almost always come back.  They developed the MRD test to detect even the slightest trace of immature cells still lingering in her bone marrow, which would then determine the risk of it coming back and adjust treatment as needed.  It is a super, super sensitive test that looks at the nittiest of grittiest cells to detect any possible tiny bit of leukemia that could potentially cause a patient to relapse.  Because .04% was detected and not 0, they put her in the High Risk category.  What this means is that during the Consolidation Phase (what we are in now), her chemo is a little bit more intense than it would be if she was "Standard Risk".  The Consolidation phase is standard in all treatments for ALL, however they add a few more drugs and adjust the doses for higher risk patients.  The only difference in her entire treatment plan is THIS phase.  I had to give her 4 days of shots at home which she handled like a champ and also an oral Chemo at night.  If there is one thing that I am still amazed about it, it is that she has become so good at taking her medicine.  She takes it every time, without any problem or hesitation and I can't express enough how much easier it makes everything.  At the end of this phase (end of November) they will recheck her bone marrow again and we will go from there.  Hopefully it will be at 0 and we will resume her treatment. If it is still above 0 we will have to look at some alternate ways to kick this cancer's ass!

After we found out that her risk changed, we decided to go for a second opinion down at Children's Hospital of Philadelphia.  We met with a leukemia specialist who mainly sees and treats patients with ALL and has been for the last 16 years.  I have never doubted her current doctors at Lehigh Valley Children's.  They have been spot on with everything they have told us from Day 1 and we love all 3 of them very much.  If I'm being honest, I actually felt a little bad for wanting to go for a second opinion....but a Mom's gotta do what a Mom's gotta do!  Her 3 docs are General Pediatric Oncologists and I guess I just wanted to hear from the guy who knows this disease the best that we were crossing all of our Ts and dotting all of our Is for our girl.  It was a great meeting and went very well, he spent over an hour with us going over her case, answering our questions and reassuring us that if Addie was treated down at CHOP he would be doing the exact same thing as her docs up at Lehigh Valley.  This was a relief to all of us, though a surprise to none of us because as I've said, we really LOVE her docs and we have always felt like we were in wonderful hands.  It surely gave me some peace of mind which is exactly what I was hoping for!

So that is where we stand today!  Still receiving weekly spinal taps and chemo at the clinic and PT every Friday.  Outside of that, our days are always fun with a side of crazy while I still try to figure out how to juggle day to day life with a newborn and 2 other kiddos!  She is in wonderful spirits and if you didn't know about the Beast, you would never know anything was wrong or different with Addie.  Now that the steroids are done, her belly has gone down, her face has and is still continuing to de-puff.  Her legs and core have gotten stronger with the help of PT and she is finally able to do the stairs all by herself again!  She loves climbing up her ladder to her swing set and attempts the Rock Wall each time, too!  She still drives me crazy as every typical 4 year old does, is moody at times (or should I say a DIVA) and her and her friends still fight over wanting to dress-up as the same damn Princess at the same time!   But now more than ever I welcome the days where she drives me to my brink.  It means she is having a great day, feeling like herself, and not letting any of this effect her.  And quite frankly, I will take that over Cancer any day!  She is my hero and I still cannot believe how effortlessly she is enduring all that she is. Every good day for her is a freaking great day for me, and I look forward to more good days, her starting up Dance class and eventually re-joining her friends back at school.  Thank you for all of your continued prayers, love and support, it means more than you know!
xo,
Michele

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,

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

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.

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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,

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,

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,

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,

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,

Days 4 & 5

*I just need to take a moment to say thank you to everyone who has reached out to lend strength, support and prayers as well as offers to connect us to those who have walked this path before.  We are totally overwhelmed (in a good way!) and just trying to sort through all the information given to us by the doctors/ nurses as well as the foundations, families and support systems.  It is so beyond comforting to know we are not alone in this fight and have so many resources and people who are able to help us know what to expect.  As I said, I don't know it yet, but I know that God chose Addie specifically for this fight and I trust that we will all one day know exactly why, and be grateful for all of this - even the bad and scary stuff.

8/21 - Today has been Addie's best one yet!  She did have a dose of Chemo through her IV and handled it flawlessly and showed no side effects.  She seemed "herself" all day today and it was so nice to see. She did complain that her throat was hurting periodically throughout the day and the doctor said it could be either a side effect of the steroids she is on (they can cause mouth sores) or possibly a small infection given the fact that she essentially has no immune system at the moment. They gave her Tylenol and that seemed to help.  She didn't want to be in bed much either with the exception of when she took a 2 hour nap in the late afternoon.  It was so nice to see her resting without any pain.  At night she became a ravenous little beast!  She requested chicken fingers for dinner and finished all of them (if you know Addie, you know its rare for her to ever finish her meal, lol).  She then requested cucumbers with salt, more chicken fingers and finished off her cravings with a bagel!  It was a relief to see her with such an appetite since that hasn't been the case since we got here.



8/22 - Today was a hard day on Addie - we aren't sure if it is because of the Chemo yesterday or the fact that her WBC (white blood cells) are almost at 0 giving her body the inability to fight infection. She basically slept the whole day and barely ate or drank anything - quite the opposite from the night before. She was up for a short time and painted a picture that we hung on her wall.  In the evening she started complaining that her head hurt so we checked her temperature and it was at 100.3 - the highest its been since we got to the hospital.  I of course panicked but the nurses assured me that fevers are to be expected and they have protocols in place on how to handle them.  The good news is that my strong little girl was able to fight it off on her own without medication and within 2 hours her temperature went back down to 98.7.  At around 9:00pm Dan ran out to get Starbucks and Addie requested a S'mores frappuccino (happy to see she still loves these!).  He came back and she told us that they made it wrong. LOL.  She explained how it was supposed to have graham crackers on the top and chocolate on the bottom (this one looked like it was all chocolate). So then she said, "I think I'll try a Strawberry one instead".  I told her they were probably closed now, but Dan of course flew back out and drove back to Starbucks to get our girl what she wanted.  I didn't think she would end up drinking it - she was asking for things all day, would take a bite and not want it anymore), but to my surprise she drank about half and I had a little sigh of relief.  Not the healthiest option, but it was great to see her actually eat something today.  Hoping for a better day tomorrow.

My Sleeping Beauty

If there is one thing we have come to learn, between the steroids, pain and her emotion of being in the hospital, things can change on a dime for her and her mood.  She could be whining one second and complaining about something hurting her, not even wanting to speak a word- and then burst out something off the wall hysterical!  I miss her sassy little personality and when we see glimmers of it, I hold on so tight to those moments.  I can't wait for her to be "out of the woods" here in the hospital and somewhat back to herself-at least for more than a few moments.

With Love,

Lives Forever Changed

Lets start from the beginning.  On Wednesday, August 15th I brought Bentley in for his 1 month well-check (he is doing great, btw - 11lbs 14oz and thriving!) While we were there I asked the doctor to check Addie out because she had looked a little yellow / pale to us the past couple of days. Furthermore, she seemed tired and a little weak (I just chalked it up to her skipping her naps (she still naps each day for 2.5 hours!) the last few days because we have been soaking up the last month of Summer)).  I guess the most concerning thing was that she had fallen 2 nights prior and told me her legs felt shakey.  Again, chalked it up to my clumsy girl who like most 4 year olds trips and falls quite often. Her doctor agreed that she looked a little pale but assured me not to worry, that it was probably just a virus or maybe her iron was low. He sent us for blood work and told me he would call me that night with the results.  I never got a call so felt relieved that it was obviously nothing, or he would have called.  The next morning started off like every other Summer morning.  We stayed in bed watching cartoons, I nursed Bentley and then we headed downstairs to have breakfast.  As I was preparing her breakfast she fell again and told me it was because her legs were shaking.  I knew right then and there that something was not right.  I called the doctor's, asked for the results from the blood work and the nurse said the doctor would call back since there was nothing in her chart (don't get me started on the lack of communication with her doctor's office).  They immediately called back and said that Addie's hemoglobin was very low and I needed to take her to the ER right away.  That was the exact moment-the line in the sand that separated my once very normal, carefree and fun family life to challenging, terrifying and completely unknown.  I rushed to get the kids dressed, put them in the car, called her Dad and we sped to the hospital.  They immediately checked us in and took us back, took all her vitals (which were all normal and totally fine).  They then wanted to do more bloodwork (They told us it could totally change just from the prior day).  Honestly, having them try and find a good vein as been the most painful thing (as her Mom) to watch yet.  They stuck my baby twice before using an ultrasound to find her vein and got it on the 3rd try.  It was traumatizing to say the least, for both Addie and us.  The ER doctor came in to talk to us and find out what was going on shortly after, and though she wasn't volunteering the scary info, I started asking the scary questions.  I dreaded the worst, and knew in the back of my mind the possibility of it being what it was...but kept praying it was just that she was Anemic.  The doctor explained that if she was anemic her blood work wouldn't have presented as it did and that it was definitely not the case.  I then asked what else it could possibly be if it wasn't that (again, I knew the answer, I just wanted to hear if she would actually say the word - and she did).  She hesitantly and quietly explained that the most obvious would be Cancer (the pain to even type that disgusting word is unbearable) but whatever it was, we should plan to be here for a little while as she would need some kind of treatment.    Time stood still in that moment - like a bad dream I wanted to wake up so bad from.  How quickly things changed for us that morning, I still can't wrap my head around it.  Not long after the ER doctor was with us one of the Pediatric Hematologists came in and explained that she did a blood smear and from what she could see, it did in fact look like Leukemia, but that should would need to run further tests to confirm the exact type.  You always hear about families who have little ones battling this horrible disease, you see the gut-wrenching commercials for St. Jude on your TV, Fundraising posts on Facebook, etc. You NEVER think you will soon be a part of that world.  You never think it can happen to your child.  As I sit here and type this 5 days later, I still cannot believe its Addie, my little girl - a new and proud big sister, my sweet girl full of sass, who loves life, loves her family even more and who is so full of life and happy each and every day.

Tests confirmed that Addison did in fact have Acute Lymphoblastic Leukemia (ALL), which is the most common type of childhood cancer.  The good news (seriously?!) is that it is extremely treatable, heavily researched and has amazing outcomes.  She told us that we can expect this journey to be a total of 2 years and 3 months, but the treatment will space out depending on how Addie is doing and responding to the medication.  She could technically go into remission in a few weeks.  The doctor is going to give us her treatment plan on a month to month basis.  From the minute our doctor confirmed her diagnosis she assured us that IF Addie were to get sick with this disease - THIS is the one we would want for her to have.  She has yet to answer one single question with any bit of hesitation or doubt.  She has been extremely confident from Day 1 about what we can expect, how treatment would go and when she would be rid of this horrible disease.  We are extremely confident and grateful for the team of doctors and nurses we have helping Addie fight this battle.  The way they made it sound to us is that it is a very black and white disease.  Sadly enough (but also extremely comforting) we all know several people whose children have been diagnosed with ALL and they have all kicked its ass!  Its comforting to have other parents be able to tell us exactly what to expect during this journey.

8-18-17 Addie had a successful surgery 2 days after we got the diagnosis.  They placed a central line (port) which she now receives all of her infusions and medications through.  They also did a spinal tap and bone marrow biopsy.  She came out of anesthesia and was back to herself within the hour.  I would have been out of it the rest of the day, but Addie acted as if that day was no different - this little girl continues to amaze me and I am just so proud to be her Mommy.  The spinal tap showed no leukemia cells in her spinal fluid, which was a huge sigh of relief.  She received one dose of Chemo intrathecally and her 2 doses of steroids.  They did give her Zofran (anti-nausea meds) and she handled everything like a champ, showing no side effects.


8-19-17 Today was a rough one.  We went from having a fun and happy day full of visitors and lots of presents for our girl, to it all going downhill after Addie had several meltdowns complaining that her legs and head hurt.  She has never been one to complain, so to see her in pain and crying about how bad her head hurt was excruciating - to say the least.  They gave her some pain medicine to ease the pain and she was in and out of sleep after she calmed down.  Then it all changed again and she was back to her happy, cheerful self, as if the last 5 hours of hysterical crying and distress never happened.  The doctors said it could have been a number of things - post spinal headache, the emotion of everything setting in, the constant rounds of visitors with literally no downtime to rest other than sleep, or the steroids (one of the side effects is mood swings). The doctor explained that the pain in her legs was most likely caused by the leukemia - as the cancer is in her bones.  Today was the first glimpse of what we can expect as far as how quickly things can take a turn.  I imagine it will get easier for us as her parents to see, but the pain to see her be in pain is something I will never get use to.

We will most likely be in the hospital for the next 2 weeks (possibly less) but it all depends on what the medication is doing and how her blood counts are looking.  They need to continue to monitor her vitals and make sure she isn't spiking any fevers.  After the 2 weeks of inpatient treatment we can go home, continue the steroids and come back to their outpatient clinic once a week for her chemo.  Day 8 (8/25) is going to be a big day for us.  Day 8 they will be able to tell us what the medication is doing if anything after another spinal tap and bone marrow biopsy as well as another dose of chemo intrathecally.  Day 29 (9/15) is the other big day, as this is the day they will be able to determine her risk (right now she is Standard).  Again she will have a spinal, biopsy and dose of chemo intrathecally.  Those are the 2 key days for us at the moment, and we will continue to hope and pray for good news and outcomes.  Addison loves being in the hospital (thank God) and literally told us yesterday that she never wants to leave.  We are hoping she still feels like that in the next week or so. Her room is constantly filled with her favorite people, the staff is incredible with her (she has her first boyfriend at 4 years old named Mike....he is her nightshift nurse and wow does our girl have quite the crush!), and her room looks worse than our living room on Christmas morning....so I guess I can't blame a girl for loving it here!

This blog has been very un-loved for a long time, but I am wiping the dust off as it is going to be very useful to us for quite some time to come.  I plan to blog / journal our entire journey for several reasons.  Number 1 being that I want to have a central place for our family and friends to receive updates on Addison.  We have all been inundated with texts and calls from our loved ones asking for updates and wanting to know how we are all doing.  Not that we don't 1000% appreciate how much support and love from everyone, but we could literally be on our phones all day updating / texting / calling if we wanted to, but we just want to be by our girl's side helping her fight and also trying to keep her world as normal feeling as possible.  I also want to have this for Addison to look back on and read one day.  Being that she is 4 years old, I'm not sure what she will and won't remember.  This is going to be a huge (if not the hugest) thing in her life to go through and I want her to be able to look back on her journey. And finally, I am hoping it works as some kind of therapy for me - an outlook or escape from our scary unknown day to day.  I know my blog reaches a lot of people and I'm hoping it provides some comfort to anyone else going through this battle, or vice verse...provides support to our family from anyone who has gone through this who cares to share their experience.   My goal is to post very frequently...whether that is a short post at the end of the night recapping our day, or each week - I want to remember all the details and record them.  Some of you are probably thinking that its odd that I would want to remember everything and not just push through each day to get it over with...but as I've always said and believed...God makes no mistakes.  There is a reason for everything and there is a reason he chose Addie and our family to go through this.  He never gives us more than we can handle and I am confident that our little girl is going to be just fine.  Its a part of her now and has changed our entire world.  We have to go through this and we have to feel everything.  It only makes the happy days feel that much better.

As far as how I am holding up - I think I can speak for her dad and I both that it comes in waves.  We can be laughing and smiling with her one second and then completely break down the next, with the reality of being in a hospital bed rather than being at the pool or at home playing outside with friends.  I expect there to be ups and downs, as I expect our emotions to go up and down throughout this journey, too. We are all just trying to take one day at a time, process the information as best we can and stay as strong as we can for our girl.  I will be forever grateful for all of the outpouring of love, prayers and support from our families, friends, co-workers, neighbors and even complete strangers who have reached out to share their stories with us.  We are being held up by it all and consistently feel everyone's arms wrapped around us.  Everyone has offered to be here for us at the drop of a hat and I just hope that one day we will be able to repay all of the favors.

Thank you for reading and I hope this new journey provides support if you need it, support for all of us and comfort to anyone else going through a similar journey - to just know that you are not alone and we are all in this together.  If there has been one glimmer of light through all of the darkness, it is each story we hear, conversations we have had with nurses or phone numbers given to us of other Mom's wanting us to call so they can share their stories with us...if you are someone who has any experience with this and feels comfortable, please reach out.  Advice, positive stories, things you wish you knew, things the doctors don't warn you about, etc.  We welcome it all!  Its comforting each and every time we speak to someone familiar with this and I know it will never get old hearing from those who have walked this path before.  If you are someone who prays, I ask that you please send them our way.  We could use all the prayers, positive thoughts and hope you have to share.

 With Love,