A couple milestones today: Bye bye PBMT, Hello again Hem/Onc!
They have transitioned us back to Duke hematology/Oncology for Charlotte's care. Today, she had her first check up clinic appointment with them since August of 2016! Bye bye Duke PBMT! With every advancement, we see the light at the end of this tunnel. Although it really hasn't been a tunnel as much as a path. And now her path is coming to an intersection where we will hang a right onto Post Treatment lane very very soon!
Today, we had a small milestone worth mentioning. She had a site reaction to the little catheter in the back of her arm where we were administering these shots at home from time to time during this 6 month course of immunotherapy. So, I ended up having to remove it and give her her final 2 shots in her arm. Today, was her last shot! Today, was hoping the last time Brian or I are the cause of the look in her sweet face when we have to come at her with a needle. She often asks why a nurse can't do it. Or just tears behind "why mommy why?" But this at home medication piece is finished! In addition, she had a perfect check up! We are earning off a medication she takes for any neuropathy (nerve pain) and will finish up this round of her oral chemo pill (Retinoic Acid)! Her labs and chemistries looked great so we won't need to be seen until just prior to the 6th and FINAL round of this immunotherapy, which is just 2 weeks of the Retinoic Acid at home! So no clinic until Aug 17 if all keeps going as we hope. Then she'll finish her final round on September 3. That will signal the end of her treatment! Scans will follow early September. We are so close we can actually taste it.
On the elevator ride at her appointment today, she remarked about a little boy who had a bald head and also an NG tube in his nose. She smiled and told them see had a bald head once and also a nose tubby too. They smiled back at her and all I could think of was yes you did baby. And the good check up, the final shot from mommy/daddy, the head of hair growing, the pink in her cheeks, the bounce in her step, the smile on her face...it washed over me and I felt like I could take a deep cleansing breath. Once we see her scans and bone marrow biopsy results in September, Brian and I will actually be able to take that breath. There will be many many months over several years where we will feel the anxiety that will come while we await clear scans as we monitor her. But we need to see what we believe so she can keep going, keep moving❤️🌈
Today, we had a small milestone worth mentioning. She had a site reaction to the little catheter in the back of her arm where we were administering these shots at home from time to time during this 6 month course of immunotherapy. So, I ended up having to remove it and give her her final 2 shots in her arm. Today, was her last shot! Today, was hoping the last time Brian or I are the cause of the look in her sweet face when we have to come at her with a needle. She often asks why a nurse can't do it. Or just tears behind "why mommy why?" But this at home medication piece is finished! In addition, she had a perfect check up! We are earning off a medication she takes for any neuropathy (nerve pain) and will finish up this round of her oral chemo pill (Retinoic Acid)! Her labs and chemistries looked great so we won't need to be seen until just prior to the 6th and FINAL round of this immunotherapy, which is just 2 weeks of the Retinoic Acid at home! So no clinic until Aug 17 if all keeps going as we hope. Then she'll finish her final round on September 3. That will signal the end of her treatment! Scans will follow early September. We are so close we can actually taste it.
On the elevator ride at her appointment today, she remarked about a little boy who had a bald head and also an NG tube in his nose. She smiled and told them see had a bald head once and also a nose tubby too. They smiled back at her and all I could think of was yes you did baby. And the good check up, the final shot from mommy/daddy, the head of hair growing, the pink in her cheeks, the bounce in her step, the smile on her face...it washed over me and I felt like I could take a deep cleansing breath. Once we see her scans and bone marrow biopsy results in September, Brian and I will actually be able to take that breath. There will be many many months over several years where we will feel the anxiety that will come while we await clear scans as we monitor her. But we need to see what we believe so she can keep going, keep moving❤️🌈
Playing out front, making a potion and splashing in a sprinkler
Even Lucy got involved 😆
Really first time she's been able to play outside for a prolonged period of time this summer!
A cloud rainbow near our town sent by one of our amazing village members, Abby. Incredible❤️
This is all great news! Love seeing her smiling face and having so much fun! God continues to Bless our dear little Charlotte, and always will.
ReplyDeleteLove, Hugs, & Prayers, Aunt Debbie