Check Mark

Radiation is DONE, hallelujah!!  Another check off of the list!!  Addie breezed right through the treatments and the last 5 she actually did without any sedation :). She seriously is the bravest girl I know... If she sets her mind to it she can do anything!!  To set the scene... Addie was in an enormous room by herself, no windows, with a huge machine (we called the camera) that moved around her, and her only contact with me was through an intercom system!  Her treatments took about 10 minutes and her hands were strapped above her head, her chin was taped up, she laid on a very rigid pillow, and her feet and hips were belted.  She passed the time listening to me read books or tell her mommy's made up stories through the intercom... Thank goodness I had the world's greatest Mom who told the best stories, I am able to dig deep and remember that once vast imagination I had... My Mom to this day can still tell the best stories!!  I am sure the radiation and sedation teams got a kick out of Addie's requests for naughty monkey stories and stories of dragons with tooth aches!!  I was able to watch her through a camera and did my best to read her lips and understand her demands :). 

I don't know why I doubted her, I really thought she would need sedation for all of the treatments because of her intense separation anxiety but she rocked it!! She said she was going to do it and she DID, without a tear or hesitation, that is my girl!! 

Other than the driving, which Addie tolerated far better than me, radiation was definitely the easiest part of this whole process!! Praise God that she was able to get the lower amount of radiation required and only a few treatments!  The effects of radiation are long term and it can really do some nasty stuff but we are hopeful that because she had a lower dosage that she will not be affected... Please Jesus let that be so!!  Our radiation oncologist, Dr. Buatti, is a very nice man, so knowledgable and extremely calm and reassuring.... Once again the Lord provided us with a wonderful medical team.  The entire radiation and anesthesia crew were a delight to work with and did such a nice job making us all feel comfortable!  Addie graduated with honors :).  Praying hard that the radiation knocked out any lurking Neuroblastoma cells... 

Home continues to be great.  It is so nice to just be...be a family in our own home with our daughter who minus her adorable bald head and a few extra tubes is PERFECT!!  I continue to struggle with anxiety and fear in what lies ahead... But it has been far less than what it was at my last post!  At night when it is just her and I, (I don't think she is ever giving Daddy his spot back in bed) she always wants me to rub her back and as I rub her back, where the awful tumor was that started this nightmare, I can't help but worry and doubt... But of course the devil would try and rob me of these perfect moments.  Two months ago we found ourselves in a spot where we didn't know if Addie would survive the day and now here she is, lying next to me, telling me she loves me to the heavens, in no pain and perfectly "healthy" and I am going to worry... No, no... I am going to REJOICE and be glad in this moment and give so many THANKS!!  Thank you Jesus for these moments and for this precious time you have given Addie to heal and for us to reconnect and refuel!!  Please fill this time with peace, hope and LOVE and continue to block out the worry and doubt... I read in my devotional to give thanks for what lies ahead, even before it happens and even if what lies ahead appears to be rough!  By always giving thanks it allows us to see the blessings that He is continuously pouring out upon us!!  This is another page out of my devotional that spoke directly to my heart... So encouraging!! 

Thank you Jesus for always giving me what I need to keep going, for the constant encouragement and strength!! Thank you Jesus for my precious baby girl... I love her to the heavens!!  

We are currently enjoying a little time off... Addie will visit the clinic every two weeks and she remains on her heart medicine and diuretics.  She was able to get the feeding tube out on Weds... Yay, praise Jesus!!  Her blood pressure is still on the high end of normal and we will be meeting with the cardiologists to re-evaluate her heart health at her next clinic appointment.  Our main squeeze and my number one girl, Mary, thinks it is best to give Addie as much time as possible to heal before we start the next step (antibody therapy).  The protocol allows 200 days post transplant to start antibody therapy, we will likely begin evaluating Addie around day 100.  Antibody therapy is a BEAST and extremely intense, it is done in the PICU because of the possible adverse side effects.  Due to Addie's reaction with transplant, our team is a little more anxious about her going through antibody therapy!  Antibody therapy is a must... It drastically improves Addie's long term survival rate!  I will be sitting down soon with Mary to discuss all of the details of antibody therapy.  One thing I need your help with over this next month is praying for clarity for Reed and I on the upcoming decisions we will be making for Addie's treatment needs.... Also pray for total healing for her sweet body (heart and kidneys) so that she is ready for the next step!  Thank you for your amazing support and love!! As always we appreciate you all so much!!  Please keep the prayers coming for my sweet girl!!  

Breaking a few rules here... But sister baths are the best!!

Celebrating sister's pinkk... She loves to ask Grace as soon as she comes home from school what color she got on and then insist on seeing it... Just to make sure she is telling the truth :)

Our little Moonchild... One of her faves, Neverending Story! 

What we would do to pass the time... Shooting baskets!

I so missed that other cheek :) I love seeing her without that feeding tube!! Not a tear was shed when that baby came out, and she has been taking all of her medicines like a champ!

Nothing like a big sister massage!!

And as you may have noticed... The paci is back in full force!!  Definitely my fault, but I swear it was an accident!