Part 1:
It has been two weeks since Addie finished her last round of antibody therapy. Praise God for another successful round! I feel so awful, I was in the world's worst mood... I should have been the happiest Mother on the unit and instead I was negative Nancy. Completing treatment has been very hard and scary for me and sometimes my stress just gets the better of me! Poor Addie was stuck with her crabby Mom for her last round of therapy, I did my best but I did hear a few times, "Mom, you're in a bad mood!" Addie did remarkably well, she was definitely rage against the machine (her normal on morphine) but from a medical stand point she was very boring :), thank you Jesus! We played about 1000 games of CandyLand, had some visits with Art and Music Therapy, a visit from Aunt Sherri and Aunt Ashley and finished the week off with Daddy.
Thank you again to the wonderful PICU staff, we just adore you! You were so wonderful to us, you always made us feel at home! We will miss you and not miss you all at the same time :) we love you PICU.
Addie will continue her Retin-A until the middle of November. Upon completion of that, she will have her end of therapy scans and praying that all remains clear she will officially have completed her protocol!
What a blessing art and music therapy were for Addie! Thank you so much for this adorable ukalele and for all the time spent with our girl. You ladies are great and we appreciate you so so much!!!
A little over a week ago had her tubes removed by our beloved surgeon, Dr. Potter!! Tuesday, October 6, Reed, Addie and I woke up bright and early and drove to Rochester to have the procedure done by Dr. Potter. There was no way anyone else was doing it, he placed them and he was going to remove them! He is the best for reasons far beyond being an amazing and competent surgeon. He was an absolute Godsend for me, he brought me comfort when I was feeling sad, strength when I was feeling weak and hope when I was feeling hopeless (and I'm positive he did the same for Reed). He always knew exactly what to say and was so incredibly hopeful! He was the man that removed that awful tumor that was threatening my baby's life. I am beyond thankful for Dr. Potter and everything he has done for us, he is the most compassionate, caring surgeon and I can't say enough positive things about him. We were incredibly blessed he was on call the week Addie was diagnosed, thank you God for placing him in our lives and for helping him to save Addie's! We love you Dr. Potter!
The surgery was very straightforward and took less than 15 minutes with sedation. Addie came out of the OR with a simple bandaid. She had very little discomfort and the area was only sightly bruised and bled very little! She will have a tiny scar there and it will serve as a reminder of what she went through. Her tubes were very good to us. They delivered the medicines that killed her cancer, they gave her blood products when her body couldn't make them, brought her new stem cells when she was on the verge of death, and provided medicines that kept her alive! Thank you Jesus for that Broviak, aka the tubes, because of those tubes Addie didn't have to suffer painful blood draws and IVs. Addie was so fortunate to never have a central line infection. As great as they were however, we were happy to be rid of them... No more: weekly dressing changes, red and irritated skin, cling wrap for showering and ouchie tape removal, water restrictions, and mandatory 3 day hospital stays for fevers!
So much to be thankful for, I really am in awe of it all... Like was this just a really bad dream that has the happiest ending ever?! Or is this bad dream just taking a small intermission?! Despite all of the happiness and thankfulness, I still find myself scared out of my mind that we are finishing treatment! A year and a half ago I couldn't wait for this day to come, I saw us rejoicing with fearless hoorays and here the day is and I continue to be scared. That is life, our lives with a child with cancer, there are victories surrounded with fear but praise God for those victories! I get so upset at myself when I get sad or scared because how dare I not be jumping for joy, there are thousands of little angels that never make it to the point Addie has. Please help me pray that no more of our sweet children have to suffer from cancer. Pray for a miracle that would erase childhood cancer deaths or better yet childhood cancer altogether! We can hope can't we!!! Big hopes give way for Big outcomes! God let a cure come!!
Cancer treatment gives a sense of control because during that time you are playing offense, and praise God our offense was victorious! Being done with treatment means that Addie now has to play defense, her body must fight every day of her life to not let even a single cell divide unnoticed! Her immune system has to be strong enough to fight a cancer that doesn't often leave survivors! With neuroblastoma you have one really good shot and our shot is done, so please pray team that it was perfect! Please pray that every single Neuroblastoma cell and every immature nerve cell has been killed or made to be what it was intended to be... If nothing exists at this time then it can never return! Please pray that Addie will be a survivor and will never have to fight cancer again. The relapse percentage of Neuroblastoma is 50% and if it reoccurs with the amplification that Addie has it would be a very, very bad thing! Stage 4 Neuroblastoma has a poor prognosis but my girl has rocked the socks off of her protocol and lets pray it sent Naughty Randall straight to Hell!!
How can one show their thankfulness for something of this magnitude, my daughter is ALIVE, she is here today and she is perfect! Praise God!!! Be thankful for this day Mandie Brenden because she is here!!!! I will forever pray my fears away and have to redirect my mind to the place it belongs, with Jesus!! There is no need to fear for He is in control!
Thank you for all of your support Team Addie. I can't thank you enough for all of the encouragement, love, prayers, gifts, and commitment to my girl!! I will continue to update if the desire is still there! I don't know what I would do without this wonderful Team praying Addie through... She still needs you all as the next three years are still very bumpy. Please help me pray that she will remain cancer free for an eternity! We love you Team Addie!! Please keep the prayers coming for Leilani and Avery as well!!
Thank you God for being with Addie, the medical staff and her family throughout this long road. Continue to give them strength, comfort and guidance through the coming months and years.
ReplyDeleteMandie, as a parent myself, I can only imagine the fear you have lived with and continue to live with. You know that God is in control but we feel we have to be the ones to protect our children. I want you to know that I admire you and Reed for the strength you have shown through this long road and I know that you have relied on God to get you through.
He is still with you as is Team Addie. Prayers continue for all of you.
Love to all of you and God Speed.
Thank you God for being with Addie, the medical staff and her family throughout this long road. Continue to give them strength, comfort and guidance through the coming months and years.
ReplyDeleteMandie, as a parent myself, I can only imagine the fear you have lived with and continue to live with. You know that God is in control but we feel we have to be the ones to protect our children. I want you to know that I admire you and Reed for the strength you have shown through this long road and I know that you have relied on God to get you through.
He is still with you as is Team Addie. Prayers continue for all of you.
Love to all of you and God Speed.