Wednesday, March 17, 2010

Complete Remission

Starting last Friday after Jordan's MIBG scan and bone marrow biopsies, we began receiving small pieces of good news. The CT scan was clear...the MIBG scan preliminarily looked good but we needed the final results... Today all the pieces of the puzzle came together and we found out Jordan is in complete remission. The absolute best news that we could have received. I feel joyful and grateful...so thankful to God for this wonderful, fantastic news...so thankful to all our friends and family who have been praying on Jordan's behalf. I also feel humbled. I know that there are parents of children with neuroblastoma who will never get this news and never get to experience this joy. While I celebrate Jordan's health, I am going to keep praying for all those children who are not in remission.


In addition to all the happy emotions, I'm also feeling scared...honestly, more scared than I thought I would be at this point. Jordan starts the next phase of treatment, immunotherapy, on Monday. Jordan will be receiving IV infusions of 3F8, an investigational monoclonal antibody, at MSKCC. 3F8 is investigational because it is not FDA approved, but it is one of the standards of care for neuroblastoma. The idea behind 3F8 is that it will find any residual neuroblastoma disease too small to show up on scans and destroy it to prevent relapse. The main side effect of 3F8 is pain...serious, intense nerve pain that isn't even relieved by morphine or Dilaudid. Patients also have allergic reactions to 3F8...hives and rashes, some even have difficulty breathing. Jordan had the typical issues with chemotherapy....vomiting, diarrhea, fever...but mostly she tolerated it very well. I am really nervous about how Jordan will tolerate this new treatment.


I am also scared about relapse. I know, I know...Jordan's first day in remission and I'm already worried about relapse. It's just that even with the best treatment, the relapse rate is still around 60% and getting into a second remission is much, much harder than getting into the first. Jordan will continue to get scans every three months to closely monitor for relapse. I just hope that relapse is the fear that Craig and I will live with every day but never a reality that Jordan has to face.


So thank you again for all your kind words and thoughts and prayers. They mean so much to us and provide us so much strength. And I ask that you continue to keep Jordan in your prayers as she moves into the next phase of treatment.

14 comments:

Kale said...

Best news of the week! We'll keep praying for you guys.

Allena said...

I want to cry I'm so happy!!!!!

Shelly said...

Tears of joy! Still praying for you guys. What amazing news! Hugs!

Donna Ludwinski said...

YESSSS!!!! So happy for you! Prayers will continue--and yes, for good reason. Praying so hard that Jordan enjoys at least 8 decades of remission!!!! Love, Donna

Maria Parlapiano RN IBCLC said...

Awesome!!! I am so happy for all of you. How mighty is the power of prayer?! Onward to the next phase: may God protect Jordan from harm and enable the immunotherapy to kick this cancer's butt once and for all!!!

jbmcguire said...

WOW - The ESI PNJ team is overjoyed with this news.

The prayers will continue.

Beth said...

I'm not going to lie.... I cried at this news trying to repeat it to my bf!! What wonderful, wonderful news. We will continue to pray. Big big big hugs.

JLS said...

I'm so glad to hear this news! I've been praying for your adorable, precious little girl. :) More prayers that she stays this way!

Mae Flower and Gene Bug said...

Great news!! Praise God! We will continue to pray for you and your family through this next stage of treatment. I am happy for you guys!

Ron said...

So glad to hear the good news!
We'll continue to be with you in prayer as you travel this road.

Ken Wong said...

So wonderful to hear about Jordan's good progress. Our prayers and thoughts are with her and you all.

She sure loves the dishwasher!

Michelle said...

Wow! Wow! So overjoyed at the incredible news! Congratulations and Praise God! We will continue to pray. But I am so happy for you, Craig and Jordan!! I hope yall's lives will now and forever be full of good health and peace of mind. Love to you!

homa said...

YEAH!!! I am so happy. Thank you God! I love the picture! Thank you very much for providing these timely updates on the blog. Our prayers and best wishes!

Liz said...

I am so slow in catching up on the blog and in hearing updates from Craig. This is incredible news!! Indeed, tears of joy. I knew God could help Jordan. And I will continue to pray for her and you and Craig. This is just so great.