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