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