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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!

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 -



**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.


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.


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,

Wednesday, October 18, 2017

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,

Wednesday, October 11, 2017

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!

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