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Tuesday, April 10, 2018

SHOP MY INSTAGRAM!

With all the changes lately, I wanted to create an easy way for you guys to shop my Instagram Feed WITHOUT needing to download the LIKEtoKNOW.it app.  I realize not everyone has it or wants to download it and I completely understand.   Anytime you see something you would like to shop from my Instagram, simply click on the photo for the shoppable links!  If you click on the items they will take you directly to the online retailer making it super easy for you to find and shop!

**If you DO have the LIKEtoKNOW.it app, all you have to do is SCREENSHOT any of my Instagram posts featuring the @liketoknow.it logo or #liketkit and all of the details will be emailed directly to your inbox!


________________________________________ SHOP THE FEED _______________________________________

Friday, April 6, 2018

Delayed Intensification Part 1 DONE!

We are currently in the hospital (more on that later), so I have a little downtime to update and give a recap of the last 29 days.  They warned us this phase would be rough - and man they weren't joking!  Delayed Intensification is essentially a combination of the very first phase and second phase of treatment COMBINED.  That means intense chemo and the comeback of steroids - my favorite (NOT). This phase has been hard on Addie to say the least.  It was definitely weird to see her so "down" during her weeks of treatment.  We are use to her being high energy, non-stop and dancing every second of the day and that hasn't been the case lately.  Overall she was her happy self, and she definitely had a lot of days where her energy level was where it has been - through the damn roof!  But overall, all the chemo definitely weakened her, made her vomit a few times and more sleepy than she's been in months.  She would ask to go to bed at night, lay on the couch throughout the day and was nauseous quite often.  She would be dancing one minute, then want to lay on the couch the next, run to the bathroom to vomit, and then want to go back to dancing, all within 10 minutes - no joke.  I feel like she's grown up so much in the last few weeks...and has this new maturity about her.  I both love it and hate it at the same time.  I love it because she's getting "easier" to handle...meaning, less talk back and challenging me and more understanding and cooperative.  She lets me know when she's nauseous and when she's about to be sick, and there have been some nights that we just sit at the toilet and she's crying that she just wants to get sick so she will feel better so she can sleep.  Those are the moments I hate it because I feel like I'm sitting there with my teenage daughter, not my 4 year old.  She shouldn't have to grow up more quickly than other 4 year olds.  She shouldn't have to know at this age that if she just vomits all the poison out, she will feel better.  She shouldn't have to say "Mom, I wish I could go to Target with you, but I know my counts are down so I will stay home".  Its just not fair.  The doctors warned us that through Delayed Intensification, all the chemo she would be getting would wipe out her immune system making her susceptible for fevers and the possible need for blood / platelets.  The crazy thing is, it usually takes about 7-10 days for the chemo to take affect on her system and drop her counts.  Needless to say, I basically have been holding my breath this entire last month just waiting for the day she would spike a fever.  We haven't gone anywhere with the exception of Easter when she was with family all day-I didn't have it in me to keep her home on a day she knew everyone would be together and having Easter Egg hunt - and it turned out to be a beautiful day!
 Her first week started out with a Spinal Tap, followed by 2 IV chemos and Day 1 of 7 of steroids- ALL ON THE SAME DAY.  I am always in awe of how such a little body could endure so damn much.  And while Spinal Taps have become pretty "routine" at this point, I will never get use to or be comfortable with her being put under anesthesia.  She is actually to the point now too where she doesn't like it either.  She hates the feeling of being "loopy" and actually cries as soon as she feels it.  Its heartbreaking to say the least.  Though she always wakes up happy, and silly and hungry!  That was all on a Wednesday.  That Saturday we had to start another chemo and this was is to be given via shot in her leg every other day for a total of 6 shots.  This is actually an alternative chemo that she has to get due to the fact that she had an allergic reaction to the typical IV chemo that is normally given.  We actually had to be admitted to the hospital for the day to get her first one, since she had to start on the weekend when the clinic was closed.  We put numbing cream on her thigh, the same one that we use to numb her port before accessing her - but she still hates the shot and I don't blame her.  Regardless if she can feel it or not, to watch a needle go in your leg is scary.  Thankfully, up to this point she hasn't needed any platelets or blood transfusions, and the steroids haven't been as bad as I was expecting.  The first week she only had one I'll say "moody" day, but other than that was a total angel.  The second time she was on them after a week break, they took on more of an effect.  Her face and belly are a little puffy at the moment and she has been ravenous!  The funny thing is, the things she craves are all pretty decent nutrition-wise.  She makes up for always wanting junk when she isn't on them - haha.

This past Wednesday was just a check-up and break from chemo for a week so her counts can recover to be ready for the 2nd Half of the phase to start next week.  They took her temperature as they always do when we get there and it was at 99.7 and the doctor said her heart rate was a little elevated, which told her that her body was trying to fight a fever.  They gave her some fluids to help her heart rate come down, but as her heart rate came down, her temperature went up =(.  She got up to 101, so they immediately took blood cultures and admitted us to the pediatric floor to start the antibiotics - all typical protocol anytime she gets a fever.  The blood cultures are watched for 24 hours to see if anything grows-but luckily those came back negative.  They also swabbed her for the flu and while she tested negative for the flu, she tested positive for the Rhinovirus and Enterovirus...both are usually seen together and are basically the common cold.  No antibiotics are used to treat it - it just has to run its course.  On Wednesday her ANC was 160.  She never spiked a fever again, though her ANC fell to 140.  The doctors want to see it coming up a good amount before we can be discharged.  Her Platelets and Hemoglobin are both holding steady and are high, so we are praying they stick.  Today(Friday) Addie's ANC shot up to 462!!  We are waiting for her doctor to let us know if we can leave as I type this so fingers crossed!

The second part of Delayed Intensification begins on Wednesday so long as her counts are where they need to be.  If they are lower than they need to be, then they will delay her by a week.  We were told that most kids are delayed in-between this phase and to expect it.  But being that her Hemoglobin and Platelets are holding steady and her ANC is coming up, I am hopeful we can start on time!  Maintenance is SO close, I can taste it haha.  I am praying she makes counts so we can start the 2nd half and be on our way to smooth sailing (fingers crossed) in Maintenance.  The next few weeks will be rough like the last, so I just want to get it over with!

Thank you for reading and for the prayers....we love you guys!

xo

Tuesday, February 27, 2018

Interim - Maintenance COMPLETE | A RECAP!

Woohooo!! 3 Phases Down, 2 to go!!  I wanted to recap this last phase of Interim-Maintenance before we head into Delayed Intensification, which is the the second to last phase of Addie's treatment!   During this phase, Addison had 4 rounds of High-Dose Methotrexate with 2 spinal taps + 1 bone marrow biopsy.  The great news is that they all went as planned and Addie stayed fairly healthy throughout (2 short-lived fevers, but we'll get to that) and her ANC remained pretty high throughout this phase with the exception of a week or 2 in between! She didn't need any Platelets or Blood Transfusions which is always a nice welcomed relief.  I thought I would break down each "stay" at the hospital.

Round 1 (Checked in 12/20, Released 12/23 at 1am) - This first day of Interim-Maintenance was pretty intense.  Addie had to have a Spinal Tap (they check her fluid to make sure it is clear and give her intrathecal chemotherapy), as well as a Bone Marrow Biopsy BEFORE they hung a massive bag of Methotrexate (chemo) to run for 24 hours.  Her procedure went great - it was pretty quick once she was fully sedated.  Her Dad had to be out of town for work and Dan was home with Bentley so I decided to sit in for the first time because I just didn't want to leave her alone - God forbid.  In the past I am always there while they are putting her under anesthesia and then when she is out I step out.  I don't like seeing any of it.  Her eyes flutter sometimes and sometimes they aren't completely closed and it just isn't a nice sight to see your innocent child like that.  On top of that, no one wants to watch a giant fing needle go into their child's back.  Dan or Nick have always been in there for this part, but since they both couldn't be, I stayed.  I looked down for most of it and made the mistake of looking up thinking they were done and I"m sorry I did. Like I said - giant fing needle in her back. I wish I could un-see that.  As per usual, Addie wakes up from Anesthesia giggly and woozy and wanting to sit up the minute she comes to.  She has to lay flat for about 20 minutes to avoid getting a spinal headache and this is always the hardest part.  She came out of the anesthesia just fine and wanted to eat the second we were back in her room.  They hung Sodium Bicarbonate to flush her kidneys and make sure they are at a safe level before starting the Methotrexate.  This nasty drug can do a number on the liver and kidneys if left in the body too long, so they are always monitoring them closely. Once her urine levels were good, they hung the Methotrexate.  She thought she felt a little nauseous as soon as it started but quickly felt better and it was smooth sailing after that.  We kept encouraging her to eat and drink as much as she could because the more she does that the more she pees and poops the nasty sh*t out.  They check her kidney and liver levels at 24, 42 and 48 hours to make sure the chemo is getting out of her system fast enough.  At 42 hours they started a drug called Lequovorin which is a rescue drug to help her cells recover and prevent any damage to them.  She cleared everything beautifully and we were able to be released at 1am.  Nick and I told the doctors that as soon as she cleared we wanted to be discharged regardless of what time it is.  No sense in staying in the hospital more than we need to be.  I'm very grateful that Addie's Dad is always willing and able to stay with her at the hospital overnight because it allows me to be home at night with Bentley since he isn't sleeping through the night yet and still nursing.  We were so relieved to be out in time for Christmas!

 

ABOUT A WEEK AFTER HER BIOPSY, WE RECEIVED A CALL FROM HER DOCTOR WHO SHARED THE WONDERFUL NEWS THAT HER BONE MARROW WAS COMPLETELY CLEAR!  MEANING, ABSOLUTELY NO RESIDUAL IMMATURE (LEUKEMIA) CELLS WERE LEFT (THIS WAS THE GOAL OF THE INTENSE CHEMO DURING CONSOLIDATION) - WE ALL BREATHED A HUGE SIGH OF RELIEF!!  If her biopsy didn't come back clear we would have had to either repeat the Consolidation phase again, or start to consider a bone marrow transplant - neither of which we were excited about.

***We were delayed 3 weeks before we could start her next round due to her counts not being high enough.  Though she was Neutropenic at one point, she wasn't the entire time she was delayed.  The other 2 weeks they just weren't as high as they needed to be.They have to be a certain number for her to receive the chemo.  I was very frustrated because I just wanted to get this phase over with!  Its a lot to coordinate schedules and babysitters for our other 2 kids when I am at the hospital with Addie. As you can see by the photo, though we were delayed, Addie was feeling good!

Round 2 (Checked in 1/24, Released 1/27 at 3pm) - Same process as last, only this time she didn't need any procedures.  They hung the Chemo once her urine levels were good and away we went! Addie wasn't as cooperative this time with eating / drinking as she was the first time.  We gave her a free pass for being a little moody and hard to handle at times since they were pumping her little body with straight poison.  She had some 4 legged friends to visit her as well as Spiderman!  The Child Life group at the hospital is so wonderful with keeping her busy with crafts, toys and games and just their presence....we love our friends at Child Life and Addie has really taken to them and is very comfortable and happy when they are around.  We decided to keep her in her hospital room instead of letting her walk the halls and visit the play room since we had heard that the Pediatric Floor was over-crowded and full of Flu and Respiratory illnesses going on.  Better to be safe than sorry.  Addie didn't clear as quickly as last time, but it was still faster than the average so no complaints here.  I will say that it is very frustrating waiting and hoping for her levels to clear...its kind of like watching paint dry - especially since they are only checking at certain times.


We were gifted Frozen on Ice tickets from the Clinic and were so happy we were able to make the show in between her hospital stays.  Addie had a great time and although I was paranoid of all the germs and people around us and hand-sanitizing every 2 seconds - it was nice to have a "normal" family outing and just enjoy ourselves.  Although we begged Louie to join - he preferred to stay back - can't blame him haha.
**On 2/1 Addie had a low-grade temperature that continued to go up and down throughout the night and was gone by the morning.  However that night it went up to 101 and we had to bring her in per protocol given her diagnosis.  Nick picked her up from me and was able to bring her so that I didn't have to bring Bentley into the hospital.  Thankfully her ANC was high (a whopping 10,000-which we still don't believe), so they gave her Ceftriaxone and some Tylenol and sent her home.  Thankfully she was able to fight it off completely through the night and it never returned!

Round 3 (Checked in 2/7, Released 2/9 at 11:30pm) - This round started with another spinal tap procedure but thankfully no biopsy.  I stayed in there with her again - Nick was on a business trip and Dan stayed home with Louie (no school due to snow) and Bentley.  Her sedation went well and her doc was in and out with the spinal in under 10 minutes.  Addie came out of sedation as she always does - silly and hungry!  Though we laugh about it when she wakes up at how Mommy has 2 heads and everything I say is hysterical to her - I will NEVER, I repeat NEVER get use to having to watch her be put under anesthesia.  No parent should ever have to witness this - let along as much as we have had to and will continue to have to for the next year and a half.  Totally sucks.  Addie spiked a fever about 24 hours after being in the hospital - right around the time her infusion was finishing up.  They gave her the normal antibiotic (Ceftriaxone) that they do when we go through the ER.  Her ANC was very high (2,700) and we never ended up giving her Tylenol before her fever came down on its own a few hour after it started....her blood and urine cultures didn't show anything, so the docs think it was just something viral.  Its crazy how different fevers and treatment of them go when she is Neutropenic (low ANC), and we were just thankful her counts were so high.  Other than a little fever scare, The only "excitement" came after her chemo  infusion was complete.  They told me that there was a part missing or broken on the machine they use to check the Methotrexate levels and they weren't sure when it would be fixed.  So for a full 24 hours we had no idea where she stood with the levels, even though they continued to draw blood as per protocol.  We grew frustrated as we neared the time in which we COULD potentially go home if her levels were where they needed to be.  Crazy enough, they ended up driving her blood samples down to Philadelphia to CHOP to have them check them.  Still blows my mind that THIS was their Plan B. We could have been discharged at 10pm but were told we wouldn't hear back from CHOP until 2am.  You can imagine the frustration, especially given the fact that the hospital was crawling with flu and germs...we just wanted to get the heck out of there.  Nick came at 11pm to stay with her that night so I could head home and just as I was getting to my car he called and said we were getting discharged.  Thank God!

 
Round 4 (Checked in 2/21, Released 2/24 at 9am) - This round was easily the roughest on Addie - most likely because it was the 4th time of having that nasty stuff put into her body.   She vomited once while her Dad was with her and she barely ate or drank anything the whole time she was there.  She peed a lot thanks to the Sodium Bicarbonate but had trouble pooping (sorry for the TMI) - resulting in her levels not decreasing as quickly as in the past.  Its always frustrating on Nick and I because we can't push her too hard to eat or drink especially when she is feeling so sick - but we just want to get her the heck out of there and home as fast as possible.  As I said in the past, protocol only calls for them to take blood to test her levels every 6 hours...so even after she finally poo'd Friday around 6pm, we had to wait until early the next morning for her next blood draw - even though we were confident it was enough to finally be low enough to clear and safe to go home.  She was FINALLY discharged early Saturday morning and we said PEACE OUT to Interim-Maintenance and the Hospital (hopefully) for scheduled in-patient treatments! We now have a nice 3 week break from Chemo and a good opportunity for her numbers to skyrocket and be ready for our next phase in Delayed Intensification - and her body will need the rest.  Its going to be a rough one on her (the treatment is a combo of Phase 1+2) between weekly spinal taps, intense chemo, steroids (UGH), and low counts equaling more blood transfusions and high-risk for fevers. Thank you for continuing to keep my girl in your prayers.  Please pray that the next 3 weeks she stays healthy and enjoys a nice break so she can continue to dance everyday!
XO,

All In to help Addison WIN Event!



Last month, Addison was honored during our local school's wrestling match.  Addie's Dad's 2 best friends are the head coaches at each of the schools and it was their idea and them that pulled such an incredible and feel-good night together.  Weeks leading up to the event T-shirts were made in support of Addie and went on sale, in which all the profits were given back to us to help with any unpaid medical bills.  The match completely sold out as both teams are local rivalries.  They also held raffles throughout the event thanks to local companies and people who donated some amazing things to raffle off! It gave me chills to see all of the players and Cheerleaders wearing the T-shirts, too.  Addie hung out with the cheerleaders for most of the night and was even given her own little Cheer uniform and pom poms to cheer the boys on!

The event was covered by both of our local newspaper's so I am linking both articles here -

*http://highschoolsports.lehighvalleylive.com/news/article/-809860631502774822/easton-wrestlers-step-up-in-key-spots-to-beat-rival-wilson-in-entertaining-dual/

*http://www.mcall.com/sports/varsity/95599179-132.html

**It can be a very large burden on a family financially to go through a cancer diagnosis - pediatric or adult. The average cost of a stay in a hospital for a child with cancer is about $40,000 PER STAY.  This is just ONE hospital stay - not counting all of the infusions, medications, biopsies, spinal taps, anesthesia, oncologist exams, physical therapy, etc. Bottom line - its expensive as all hell.  That is why I am sure I can speak for Addie's Dad and myself when I say how grateful, appreciative and blessed that Nick has the wonderful health insurance he has through his job, which covers most of Addie's medical bills.  Combine that with living in the state of Pennsylvania and the assistance that comes from the state, we are incredibly fortunate that we have yet to incur any out of pocket medical expenses.  That is not to assume that there won't be expenses that come up in the future, which is what we will use any fundraising money for.  If after her 2 years of treatment there is any money in Addie's account, Nick and I decided that we will be giving it back to help others fight their beasts.  I just wanted to put this out there since the newspaper articles weren't clear in their message, and I don't want people to have the wrong impression of fundraising events for Addison. I am beyond humbled by all of the efforts in fundraising for our girl, and whether it goes to help Addison's fight, or another little warrior's- the money that has been raised in her name will not be wasted.

 xo,

Thursday, February 8, 2018

Our Little Calendar Girl!

I'm so sorry this post is a little late!  I post and update regularly on my Instagram in real-time, and I always forget to update here, too!  Addie had the honor of being invited to be "April" in this year's Angels of Hope Calendar by Angel 34!  Angel 34 is an amazing local organization that helps children and their families fight cancer.  When they had asked us to include Addie, it was a proud Mommy moment for sure!  Nick and I brought her for her little photo shoot the weekend after Thanksgiving and we were in and out in 10 minutes thanks to little Miss cooperative! I don't know how they were able to choose between all of the photos of her because there wasn't a bad one in the bunch - I promise I'm not just saying that because I'm her Mom!  The calendar features 12 cuties of all ages who have fought and/or are currently fighting their own Beasts.  All the proceeds of the calendar sales will be used for their annual Derek's Camp Flip Flop this Summer! You can purchase your 2018 Angel 34 Calendar by clicking here.


xo,

Friday, December 15, 2017

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
******************************************************************************

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,

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