Who does Harper look like? We are not sure yet. Jordan was so obviously a mini version of Craig, but we are still trying to figure out Harper. In the interim, I have been telling people she looks like me. :)
I think Jordan and Harper have distinct looks, but I do notice some similarities. I see it primarily around the nose/mouth/cheeks. For fun, Craig recreated one of our favorite baby picutres of Jordan with Harper. Both pictures were taken at three weeks.
It has been one year since Jordan died. It is odd to celebrate the birth of our second daughter while marking the anniversary of the passing of our first daughter, and I struggle to find words. Jordan's physical absence is achingly obvious to us everyday, but we are so grateful for the time we had with her and feel that we carry her presence with us in our hearts.
We have been looking for ways to contribute to the pediatric oncology community and have participated in a few projects this past year. One of the projects is the National Angel Quilt, a quilt comprised of panels representing children who have lost their battle with cancer. The quilt is sponsored by the Make Some Noise Foundation, a local organization that raises research funds for pediatric cancer.
The angel quilt is touring the country to raise awareness and happened to be at a local mall the day before Jordan's eternal life anniversary. The quilt is a beautiful tribute to the angels, and I'm glad we were able to include Jordan. We met they family that created the Make Some Noise Foundation while visitng the quilt. They have a tremendous amount of energy for this cause and we made plans to work with their organization.
Jordan's panel happened to be right next to another neuroblastoma angel that we met at the Morristown clinic. Shane and Jordan were both Yo Gabba Gabba fans.
The newest member of our family, Harper Erin Plauschinat, arrived on Friday, September 23 at 12:04 pm. 7 lb 4 oz. 20.5 in.
Craig and I had been anxiously awaiting Harper's arrival. She was due on the 23rd, but I suspected she may be early because Jordan was three weeks early. When my doctor advised in early September that I was already dilated and Harper could arrive "any day now", it seemed like we were on course for an early birth.
But Harper held out until the end. At my appointment on the 22nd, my doctor suggested scheduling an induction for the next morning and I jumped at the chance to meet our little one. Craig and I were already prepared for the hospital since we expected Harper to come early so we decided to go on one last date night. We went to a dinner Craig described as the best meal he has ever eaten...the food was fantastic but I think our excitement and joy contributed to the sentiment.
We went to the hospital early on the morning of the 23rd, and the doctor broke my water at 7:00 am. That nudge was all that Harper needed because I began contracting every five minutes immediately. Five hours later, Harper entered the world and joined our family.
These first two weeks have gone well. Thankfully Harper has been patient as Craig and I adjust to having a little one in our lives again. (It took me ten minutes to remember how to open the stroller and pop in the car seat.) Harper already had her first doctor appointment and gained back all of her birth weight plus two ounces within the first week. Craig, Nola, and I are enjoying spending time with and getting to know Harper.
Jordan went home to heaven this evening. It was quicker than we anticipated but she was very comfortable, cuddling between Craig and me. Our hearts are broken but we are grateful for the time we had with her and are honored to be her parents.
Since November of last year, our little warrior has faced eight rounds of high-dose chemotherapy, seven neutropenic fevers, surgery, fourteen rounds of radiation to the abdomen, one round of immunotherapy, and one round of Accutane. Most recently, she completed an additional two rounds of medium-dose chemotherapy and eighteen rounds of radiation to the skull at MSKCC. Jordan has endured all of this treatment with a strength and spunk that I find inspiring.
Our plan was to let Jordan recover from the MSKCC treatment and then go for scans late next week, but Jordan has not been feeling well. Over the weekend it seemed like she was fighting a cold...this week it became obvious something else was going on as she was extremely lethargic, sleeping most of the day and not walking. We went to the Morristown clinic yesterday and they determined Jordan had pneumonia as well as excessive sleepiness post skull radiation. They hospitalized her overnight and started Jordan on antibiotics for the pneumonia and steroids for the radiation side effects...the treatment has definitely helped her perk up.
More concerning, though, was one of Jordan's lab values. Jordan's LDH was 2,000 last week and 4,800 this week...the upper limit of normal is 300. A high LDH can mean a lot of things but it in Jordan's case we were worried it meant the neuroblastoma was growing. Our wonderful oncologist at Morristown pulled some strings so Jordan could get a CT scan today and we would not have to wait another week to find out what is going on with our little warrior.
The CT scan showed the neuroblastoma has spread to Jordan's liver. Our doctor at Morristown consulted with our doctor at MSKCC and has determined that Jordan's cancer is no longer curable. Jordan was discharged home and we have an appointment with hospice tomorrow. Our sadness is indescribable but we are focused on enjoying our time with our precious daughter.
Our faith in God and the love and support of our family and friends has given us the strength we have needed for this journey. We are not very good at acknowledging it or responding...most days I can just manage to get us dressed and out the door...but all the emails, posts, texts, calls have meant the world to us. Thank you for supporting our family and for praying for Jordan.
The next 24 hours could mean the difference in getting turbo 3F8 for neuroblastoma into the MSKCC clinic in a year versus who knows when. Jordan and many other NB children would greatly benefit from this treatment. Arms Wide Open Cancer Foundation is running neck and neck with the current 3rd place group, USAction Education Fund, which has organized to get 16 non-profits to come together to create a machine that is trying to take all the money in every category in the Pepsi Refresh contest.
Please take one least day to vote...feel free to pass on to others who may be able to vote as well!
There are 3 ways to vote in the final 24 hours: 1. Vote via text: dial 73774 and then enter 102653 in the body of the text 2. Vote via internet: www.refresheverything.com/armswideopenchildhoodcancerfoundation (Make sure you click on "Vote for this idea" after you hear the Pepsi can opening and that the vote counter in the lower left goes from 10 to 9 meaning you cast your vote for Arms Wide Open). Plus you can vote with all your e-mails, personal and work. 3. Vote via Facebook : when you are online look for how to download the Facebook app, then vote on Facebook with your app
A win would be a great way to end September which is National Childhood Cancer Awareness Month!