Four
months ago, our 15-month old daughter underwent a second surgery at Gillette
Children’s Hospital to complete the tissue expansion and removal process of her
large-sized congenital nevus. Recently, Kendall had another follow-up visit
with her surgeon, Dr. Wood.
1 week post-op
When
we met with Dr. Wood at 3 weeks post-op, he explained that Kendall's biopsy
revealed both congenital and sebaceous nevus--a rare compound nevus.
The biopsy also showed that while one of these nevi were completely removed,
there were still remaining cells of the other--meaning the possibility of
pigmentation reappearing and the necessity to repeat the entire process.
But I felt overcome with this huge sense of PEACE--a peace that has been a part
of the healing process over the past four months. Although I had hope that the
nevus cells would not return, I mostly prayed that GOOD THINGS would come out
of her situation and that we would make the most of whatever came our way.
Having
a child who requires on-going medical attention and surgery has made me more of
a realist in this area. I no longer attended doctor's appointments with the
expectation that my kids are healthy--something I used to take for granted.
2 weeks post-op
Healthy
children are a lot of work. Adding the additional time, stress and expenses
that go along with caring for a child with medical needs is a lot to manage on
top of EVERYTHING ELSE you are managing as a parent.
I
learned to focus on doing the next best
thing and to take things one step at
a time.
So
when we drove to Gillette Children's Hospital, I was prepared to hear what this
next step would be.
After examining her scalp and scar tissue, Dr. Wood told us HE DID NOT SEE ANY NEVUS PIGMENTATION.
He told us that she looked great and we wouldn't need to see him again until
February.
An entire 8-month period with no hospital visits? Awesome.
No
more medical bills? Hallelujah.
A
healthy child? Praise God.
It’s
still sinking in.
Once Kendall reaches the one year post-op mark in February, whether or not the
nevus cells have returned should be a done deal.
Dr.
Wood also told us that we’ll likely want him to remove some of Kendall's scar
tissue that has stretched, which would be a scar revision surgery at some point
next year. If left alone, this could potentially become a noticeable bald spot,
so we'll trust that he can help sister out with this. No hair will grow on the
8-inch line of scar tissue, but with a full head of hair, this should not be an
issue for her.
4 months post-op
As
relieved as we are to have a positive check-up, we will miss not seeing the
wonderful craniofacial team at Gillette. I remember going in for Kendall’s
first expansion and being terrified of all the unknowns--Willthe injections be
painful for her? What will she look like? Is this going to be traumatic for all
of us?
That
is when we met Martha, Katie and the wonderful nursing staff who put to rest
all of our fears and concerns about what the 18-week tissue expansion process
would be like. I felt that they cared for Kendall like family--answering my
endless, repetitive questions with patience and always making our daughter’s
health and well-being their first priority.
I
left that first expansion appointment knowing WE COULD DO THIS.
When we first met with Dr. Wood and he explained to us the tissue expansion
process, Kendall was just 6 weeks old. Slowly, brick by brick, stress
was added to our everyday life until FINALLY, on February 11th, these bricks
began to slowly disappear.
It is a freeing experience to have this weight removed. I'm thankful
that Kendall will never know what it's like to carry the burden of this
process, and I'm grateful for the medical team at Gillette who continue to make
this journey a success for everyone.
Kendall's scar continues to lighten and heal nicely.
The scar tissue gets thicker towards the back corner, so we will be asking Dr. Wood about this during our visit with him in June. He will also be assessing her nevus tissue/pigmentation to see whether or not she will need further tissue expansion.
She's such a tough little girl, we love you sister!
Dr. Wood was very impressed with how Kendall is doing and how well her incision is healing--she is such a tough little girl who has let none of this slow her down.
I remember watching an interview that Jennifer Aniston did with Oprah years ago. When asked about the references and tabloid labels of being "unlucky with love," Jennifer said that she thought the opposite. She told Oprah that she didn't understand why people thought this because she felt she had always been "lucky with love."
This small snippet of her interview has stuck with me--recently, I have found myself thinking about the beginning of Kendall's tissue expansion process and how initially I wallowed in self-pity finding her circumstance unfortunate for all of us.
And now, I can say with confidence that this has been an incredible experience--allowing change to come in and transform us on multiple levels. Tony told me months and months ago, this is good for you. Not in the sense of having to watch your child go through a complex medical procedure, but good for me because I was forced to come face-to-face with so many of my own insecurities.
I feel like Kendall's last surgery was less about marking the end and more about celebrating the beginning--going forward with a new perspective, a new attitude and a confidence that makes me a stronger person and better mother.
On Monday, February 11th, Kendall became nevus-free for the first time.
Leading up to this day, I was most nervous about seeing Kendall without the expander. I had held, kissed and looked at her everyday for five months looking a certain way that I had become accustomed to--I was anxious about seeing her look drastically different, once again.
We arrived at Gillette Children's early Monday morning with surgery scheduled at 9:30 am. Kendall did great--she was walking the pre-op halls, saying HI to everyone and making people smile as she rocked her hospital gown in true baby girl fashion.
Several people made mention of our blog for Inside Gillette and recognized Kendall from their facebook page. The staff was cheering her on and were excited for us to conclude this medical procedure--we felt surrounded by love and support from near and far away.
For the first hour, a stream of nurses and doctors came in to talk with us, including Dr. Wood.
As much as I had dreamed and waited for this day, I couldn't believe that we were actually here and this was finally happening. The whole thing seemed surreal.
Our minister Bruce said a prayer over Kendall before anesthesiology came and took her back to the operating room.
Then we waited.
Surgery took over an hour, then Dr. Wood and Martha came in the room to speak with us.
He told us that everything went well, that he was able to remove the entire nevus and that she had a large U-shaped scar on her scalp. We discussed some other details, but mostly were THRILLED that things went smoothly and that he was able to remove the entire nevus in one surgery.
Kendall was moved to post-op for another hour and the nerves starting getting to me--Martha went back and peeked at her to give us a report. She said Kendall was wearing a head wrap, so that I wouldn't need to worry about seeing her incision just yet.
When it was time for us to be with Kendall, I let Tony lead the way. I was literally shuffling my feet so slowly that the nurses were telling me it's okay, she's great, it's okay, come on...
I put my hands over my mouth as we came into the post-op room and started crying--but this time they were tears of pure JOY. Kendall was all bandaged up, but looked AMAZING!
One nurse handed her over to Tony and the other smiled and told me to sit down in the wheelchair--she told me this time I didn't have to walk her onto the 4th floor.
This made me cry again.
I couldn't believe the transformation--I felt like the all the stress, all the weekly hospital visits and injections, all the extra care and medical attention that she had required was all about leading up to this exact moment in time.
It felt good.
Day One
Kendall recovered quickly and was bouncing off the walls with her oxycodene, which come to find out had the reverse affect on her. It was like a fun slumber party for her--she loved having all the nurses come into our room and was wide-eyed until 3 am.
Not so fun for me.
Martha said she would come in the next morning and remove her head bandages, so I thought to myself okay, I still have some time before seeing her scar and Tony will be back in the morning to hold my hand, this will be fine...
Kendall had other plans.
Around midnight, I was trying to tuck her in nicely so she would fall asleep--which was extremely difficult being that she was hooked up to four different machines and had cords everywhere! So, I was making my final attempt at putting Kendall to sleep in her crib when she took a big yank and pulled the bandages completely off her head--revealing a rather Frankenstein-ish scar...
Honestly, after everything she'd been through, I was so relieved to see the nevus gone and excited to see Dr. Wood's fine work revealed. I sent a picture to Tony and we both agreed that the results were AMAZING. We knew that it would take time to heal, but what a relief to have this behind us!
Day Two
At 7:30 am, Kendall threw up twice while I was feeding her breakfast. We got her cleaned up and discovered she had a temperature of 102.5.
Martha came to check her out and we both agreed that something wasn't right--she decided that instead of discharging us, she'd come look at her again in the afternoon.
Shortly after, Tony, Jeanene and Carter arrived at the hospital. Kendall took a nap and woke up around 12:30 with a temperature of 104.4--we were all in shock.
Then she threw up again.
At this point, the nurses paged Martha who went ahead and confirmed another night in the hospital.
We gave Kendall a sponge bath and tried to keep her as cool and content as possible--I was glad she could be monitored closely and still get all of the medications and fluids through her IV, since she wasn't keeping anything down.
But it made for a LONG day...
Tony stayed with her for the afternoon while the rest of us went back home--I needed to take a nap and shower before night #2.
The nurses made a PLAN for us--the "new chair" being that Kendall threw up at least five times in that thing.
I made some phone calls, sent some e-mails and brewed a cup of coffee before heading back to St. Paul for another night. I was exhausted--physically, mentally, emotionally.
It was difficult enough to take care of a child recovering from surgery, but then to have her spike such a high fever and keep throwing up was just plain horrible.
Once Tony left to go home, Kendall and I roamed the 4th floor of the hospital around 8:30 pm--which felt like a high school lock-in. It was unusually quiet and calm.
We checked out the Ronald McDonald house where I ran into a patient dad who was staying there with his son. He told me five weeks ago, they didn't know if they would be leaving with or without him. We talked for a while, wished each other well and went our own ways.
I think one of the greatest blessings of this experience has been for us to develop a new empathy and respect for parents and children who are facing medical circumstances FAR greater than ours. As tough as Kendall's current state of health was for me, I knew that we would be taking her home--which is more than some parents could believe.
We went back into our room, Kendall threw up some more, then prayers were answered as we both fell asleep...
Day Three
Each morning when Tony arrived, Kendall would light up and start yelling Dadeee! Dadeee!
He kept her calm and happy.
Kendall kept her breakfast down and fever was reduced to 99.5.
We finished her IV antibiotic treatment around 10:30 am, went over information with Martha who then gave us the green light to go home. DISCHARGED!
I can't say enough great things about Dr. Wood, Martha, Katie, our clinic and surgery nurses who have been PHENOMENAL over the past eighteen weeks--I mean, I actually found myself being sad that I wouldn't get to see them anymore.
They will always hold a special place in our hearts for giving our daughter such an incredible gift.
A look at the transformation during tissue expansion:
And now, nevus-free for the first time EVER!
Kendall's biopsy came back benign, meaning there were no traces of cancer cells--an incredible way to end this journey! Next visit with Dr. Wood will be Tuesday, March 5th to discuss other biopsy findings.
We appreciate everyone who has received our weekly updates and prayed for Kendall over these eighteen weeks--believe me when I say we felt your support.
