Delayed Intensification COMPLETE!!

Man, I never thought this day would come!  This last phase has been brutal.  Not only has it made Addie physically ill - more than any other phase, but it has wiped out her counts and immune system a few times, leaving us in a permanent state of paranoia.  Because she had an allergic reaction to one of the drugs in this phase last time - they had to switch her to a different one.  The original one that gave her a reaction would have been a one time infusion through her tubey.  The alternative is a shot in the leg - every other day times 6.  This is the one that makes her so sick.  We had to basically keep up her anti nausea medication every 7-8 hours for an entire week and a half while she was getting these shots.  Its crazy how the nausea would hit her right at the minute she was due for her medicine. Thankfully the anti-nausea does work and she had some relief.  She has needed 1 blood transfusion and 2 platelet transfusions, along with one more blood transfusion expected this week.  Her Hemoglobin and Platelets are still coming down, but her doctors said they have seen signs of her marrow recovering based on her blood work.  Her ANC has been below 500 for most of this phase and we have been stuck at 0 for the last week and a half.

During her Clinic visit this past Wednesday, she spiked a fever.  I immediately knew we would be admitted because her counts weren't high enough to give her the antibiotic and send us home.  They immediately took blood cultures, swabbed her nose to check for respiratory stuff, and I also requested a stool sample because she had had diarrhea since the weekend.  Her stool tested positive for CDIFF.  The doctors told us this is very common in kids with cancer, but unfortunately extremely contagious.  For any healthy person, it would cause a few days of diarrhea and an antibiotic is not always needed.  But for Addie, they had to put her on an antibiotic immediately. She has been taking it 4 times a day and is on it for a total of 10 days.  It tastes nasty....and the alternative tastes even worse.  Its not something that can be given through her tubey, nor in pill form which stinks.  She threw it up a few times in the beginning, but here we are day 6 and she's taking it like a champ!  All the doctors and nurses have to fully garb up when they come in to check her, and I also have to wear gloves in the bathroom with her and then wipe everything down with bleach after she's finished.  It seems to have gone away thanks to the antibiotic, but they told me it could come back.  Fingers crossed that doesn't happen.  She also tested positive for Rhinovirus & Enterovirus, which is essentially a cold, with no treatment needed - just has to run its course.

So here we are in the hospital, just waiting for her ANC to come back up.  We get her blood results early every morning and then all day she is her normal, happy, energetic self as we try to pass the time.  She isn't allowed in the play room because of the CDIFF, so its a struggle to keep her busy and not bored.  As for some GREAT NEWS - She had her last shot yesterday and I couldn't be more excited to say Adios to Delayed Intensification! I was warned it would be rough, but looking back on it as a whole, I suppose it could have been worse.  Her doc told me today that a lot of kids need transfusions every other day at this point, so we are counting our lucky stars that that hasn't been the case for us.  I'm also grateful that we were able to have a small birthday party with our family to celebrate her turning 5, and she had a ton of fun in the pool last weekend for Memorial Day.   Now, we are setting our sights on MAINTENANCE, where we will stay until the end of treatment.  From what I have been told, we can expect a smooth sail for the most part through this phase.  Only once a month visits to the clinic, 5 days a month of steroids and an oral chemo given at home.  Her counts should maintain high and her hair should start to grow back with a vengeance!  We have Disney World next month and Addison asks me almost every day if we are going tomorrow, haha.  While it totally stinks being stuck in the hospital with low counts-because there is literally nothing we can do about it to bring them up, I'm just glad to be out of the woods with all the nasty chemo. My hope is that once her counts are high enough to start Maintenance, they will stay there for the most part and we can enjoy a fun-filled "normal" Summer!  Theres so much to look forward to, including a camp that she has been gifted by the Angel 34 Foundation, Disney and lots of fun outside and in the pool, followed by KINDERGARTEN come Fall!  I will keep everyone posted via my Instagram on when we get discharged from the Hospital and I will update on here throughout Maintenance.  I can't believe its been almost an entire year already.  Some days it seems like it flew by, and other days it feels like it was an entire century ago that we started on this journey.  Its just nice to finally see some light at the end of the tunnel.  Addie is so strong - not just physically, but emotionally, too.  She has endured so much these last 10 months and matured so quickly.  She has never stopped dancing and she continues to always have a smile on her face.   Thank you for keeping up with us and for always sending so much positivity and prayers our way - we truly appreciate it!

xo