Hello everyone! It has been a busy few weeks but time to jump back into things.  We went to Baltimore for a mini trip for our family to regroup and then a consult at John Hopkins with the pediatric leukemia specialist.  We rented an AirBnB (which is sooo much better than packing everyone into hotel rooms) for two nights. We spent a whole day out in Baltimore along with exploring the Baltimore National Aquarium. We did a extra tour about the dolphins because Gia adores them 🐬We did eat our way around Baltimore including a ton of seafood 😋 . That evening we played board games and laughed and just regrouped as a family. It was definitely much needed for all of us.
The next afternoon we headed to John Hopkins and met with the specialist. We learned alot about her type of cancer and that having Down Syndrome plays a huge part. That extra chromosome plays a part in the increased risk for leukemia. The doctor did a thorough exam and we talked about what we have experienced thus far in her treatment. She did not receive everything she needed from our current facility but would obtain them and give us a recommendation by our next appointment with current Hem/Onc doctor. The visit gave us comfort knowing we now have a well known cancer center in our pocket for anything we needed moving forward. We also discussed if Gia fails this current protocol we will definitely be going to John Hopkins for the next step which would be Car-T therapy.  
2/16 we met with her doctor at Geisinger to discuss the next phase after she finishes the Blincyto (Immunotherapy) she is currently wearing for a 28 day continuous cycle. When this is completed she will have about a two week break for her blood counts to rebound before getting admitted for chemotherapy.  It will be a 4 week cycle. It will consist of three different chemo meds Vincristine,Doxorubicin and Pegaspargase. I am nervous because she has had difficulty with the Vincristine and the Pegaspargase especially affecting her liver and neuropathy issues. Thankfully they resolved over time but anyone would be nervous going into it again. On top of that we will be introducing Doxorubicin. It's referred to as "The Red Devil" because it's red in color and comes along with potentially scary side effects. Those include losing her hair again, increased risk of infections, nausea and vomiting. She will also need an echocardiogram to make sure her heart is great before this medication because it could affect the heart as well. She will be taking many medications to hopefully keep a lot of issues at pay and to hopefully protect the liver from what it went thru the first time. I will attach a picture of her during the liver failure and o encourage prayers that we do NOT encounter anything like that again.  

The past week I have been spending some extra time with my sons knowing we will be away again and I just want them to know and feel my love. I probably worry more than they are feeling but I worry that my attention towards her is felt by them as neglect in some way. I know they will see things differently as they mature but what momma wouldn't worry. 

Anyway, I could keep writing my thoughts and feelings for days but I will save this space for more updates as we move on in her journey!

love to you all,

Gia, Laura, Daniel, Carmine & Vincent 💕