Getting into everything during diaper change
Hanging out with mommy in hospital room
Practicing walking post-surgery
Taking a break from Elmo to smile for picture
On Thanksgiving, Jordan snapped out of the post-surgery fog and was mostly back to her normal self…eating, drinking, playing. It was a little difficult spending the holiday in the hospital, but my friend Jenn brought us a delicious Thanksgiving dinner which definitely made the day feel more normal. We have been very fortunate to have several friends provide us meals (Thank you Alex, Heather, Michele, Uncle Paul, Aunt Cheryl, Aunt Sue, Joyce & Milli!), but I have to give an extra thanks to Jenn as she left not only her own Thanksgiving meal but also her daughter Maddie’s first birthday celebration to bring us a meal.
On Friday, Craig and I visited Memorial Sloan-Kettering (SK) in New York City. We were fortunate to have Uncle Paul join us to have an extra set of ears. After talking with Dr. Modak, we decided to go with the SK approach that includes five rounds of chemotherapy as well as a stem cell harvest (but no stem cell transplant initially) and possibly another surgery. SK sees about 65-75% of children go into remission after this initial treatment. Once in remission, Jordan will have antibody therapy, radiation, and Accutane to help maintain remission. It seems like the SK approach achieves the same remission rates as other regimens but with less chemotherapy/harsh treatment. Overall, Craig and I left SK feeling very hopeful.
SK advised we could have the five rounds of chemotherapy at Morristown, and Dr. Miller was eager to start therapy so her first round began on Friday. This first round includes three drugs, two of which are infused continuously over 72 hours. So far, Jordan is experiencing a fair amount of vomiting but Dr. Miller is going to adjust her nausea/vomiting medications today to try to address.
A funny story from overnight….the resident comes in after the second time Jordan vomited and asks if she usually vomits…as if it’s normal for children to vomit multiple times each night…I calmly reply that I think the vomiting is from the chemotherapy. Jordan then begins to fuss and he asks why…hmmm, let me start a list. The best was when he held the stethoscope a couple of inches in front of her face?!? Gotta love residents!
11 comments:
Hello, Kristen and Craig! I'm a friend of Nancy's. I wanted to you to know that I am praying for your sweet angel everyday. May God bless you all, keep you strong, and guide you through this difficult journey with faith, hope and love.
Hi Kristen and Greg
Just wanted to let you know that Neal and I are thinking of you and praying for Jordan's recovery.
Marilyn Gordon
I am so thankful that your visit with SK was helpful for your "hope tanks." Those certainly need to be full to maintain the positivity that will help little miss J. Praying for a relief to the side effects for her...and trusting that God is giving her strength and comfort to help her through.
What a precious baby! I am still praying for you guys everyday.
We feel so good about the decision for Jordan to do this treatment plan. Thank you for the frequent updates. Jordan is so very lucky to have such loving and capable parents!
Love and prayers from Texas -
Paula and John Wilhite
Kristen, Craig and Jordan,
You are all in our thoughts and prayers. Praying for a speedy recovery. She is a beautiful brave little girl.
Stacey Fusco (and family)
Hello Kristen and Craig,
Paola and I are with you and Jordan in spirit. We pray that all goes well for Jordan.
John McGuire
Kristen, Greg and Jordan - Our hopes and prayers are with you as Jordan recovers from surgery and goes through chemo. We'll check this post for updates. Good luck and best wishes for a speedy and complete recovery!
So glad to hear that yall were pleased with the hospital/doctors in NY. I hate that her little body is having to endure the chemo, and I pray that her side effects will be as mild as possible.
p.s. I LOVE her cute outfit in these pictures! She is a beautiful girl!!
I talked with Craig today and was so thankful to hear that the SK treatment was the best option and that the plan is already underway. I have immense faith and hope that she will overcome this disease. That was reinforced when I saw her pictures with that beautiful smile again. I know angels are by her side and she is so blessed to have you and Craig as her parents. I hope you both are able to find comfort knowing that so many people are praying on Jordan's behalf and love and support you all.
Craig and Kristen,
A beautiful baby only matched by her incredible parent's love and support. She is so lucky to have you both. Looking forward to a full and complete recovery from baby Jordan.
Our prayers are with all of you.
With warmest regards from CA,
Ken Wong and Family
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