We had a great Thanksgiving. Lots of friends, the very cool and hip Virbitsky’s sans the patriarch who ate too much the day before and couldn’t make it out of the house, family – Aunt Donna Uncle Jeff, Aunt Dana Uncle Tushar Grandma Taru and cousins Eli and Olivia.
Naya cooked up a storm. Made the stuffing with me plus prepped the turkey and duck and peeled the potatoes. Then she made apple turnovers for her brother Zak with her mom as a final treat for the feast.
Now we are in the clinic waiting to see if we will be admitted today which is highly likely. So now we will be hanging in the hospital over the weekend for the 6th and final treatment in this process. We are powering through it because we can see the light at then end of this here tunnel!
Alrighty, let cycle 6 begin! We are admitted and ready to power through the next couple of days. Here are the entering count board.
How do you say thank you to hundreds of people? That’s been our challenge for months. We have cartons of cards that were sent by all of you, a list of who gave what gift, over 500 people that gave to the Parkway Run, and the names of dozens of nurses and doctors that have helped us along the way. Someday, we will get thank you notes out, but for now, we hope you know that we are incredibly grateful to all of you.
Thanksgiving has always been special to us. It’s a holiday full of warmth surrounded by family, great food and just enough family drama to keep it real. It wasn’t until last week that I let myself think it could be a “normal” Thanksgiving in the Summy household. And, here we are doing the normal Thanksgiving stuff…getting our shopping list together, inviting friends and family over, preparing dishes, and surfing the web for good Black Friday deals.
There is no way to describe how special this year’s Thanksgiving is to our family. So, maybe a list is appropriate. This list is from Naya and me as we sit here pondering the plan for the day:
Naya is thankful for…
- CHOP doctors and nurses
- the treatment working
- Gabby and Dukie (our dogs)
- being “almost done” with treatment
- PaintJack (our horse)
- All of her friends
I am thankful for…
- My family
- Hank’s family
- The world class support, talent and conviction from Naya’s team at CHOP
- Naya’s AIS teachers and faculty
- Naya’s friends and their wonderful families
- Zak’s friends, family and support from his school (Haverford)
- The caregivers who have stayed with our family (old and recent). In particular, we want to thank Karolina and Anna for their love. And, of course, thank you to Claudia, Lidia, Joy, Maki, Katarina, Vanessa
- All of our amazing friends and their supportive messages/texts/emails/calls/cards/help
- Everybody that supported the Parkway Run & Walk
- Everyone that prayed, sent positive energy, cards and love to our family
- Our generous and understanding colleagues from McCann Worldgroup and TE
- And, finally, my family’s health
We hope you have a lot to be thankful for, and enjoy a wonderful holiday season.
Love from the Summy’s – Naya, Zak, Hank, Amy, Duke, Gabby and PaintJack
Many of you know PaintJack. He’s the horse that has helped Naya get through this year. We always look forward to our visits with him, and he has become a bit of a celebrity guest on Naya’s blog. Recently, his previous owner and friend of the family, decided it was time to let a new owner have PJ. We were lucky enough to get the call and opportunity, which of course we jumped on. Naya just didn’t want to have PJ go to another owner. We were thinking about getting Naya a horse for her birthday, but decided to jump in feet first. Things happen for a reason, and I believe PJ is here to help Naya heal and move forward.
While Naya can’t ride him for a few weeks, soon enough she can get back on and enjoy him. In the meantime, there’s plenty of stuff to do at the barn, and she’ll be over there whenever she can to feed him carrots, groom him and take him for a nice walk.
Naya’s counts are in great shape. She is just waiting to get the full antibiotic treatments and then we are back home on Tuesday.
She is outside of her room a lot more these days doing crafts, joining us for dinner in the cafeteria and just getting more walking in. Her nurses keep wondering where we have gone. She does have lower hemoglobin counts so she gets winded but she still isn’t content with lying in bed.
Today she had several visitors. Her cousins, grandmother and uncle hung out with us, and Logan came to see is with her mom. Naya misses her friends and it was so awesome to see Logan.
Tomorrow is more of the same. Hopefully we get some homework in and reading done.
Her is Naya in her regular audiology test she must take before each chemo cycle. For some reason this time she looked much more goofy with the way the audiologist attached the earplugs for the test.
She is a trooper; her hemoglobin level is low today but she still walked the whole way over to the other side of the hospital for the test. Of course you all know this but hemoglobin transports oxygen in the blood to the muscles and when you have less hemoglobin in your blood your muscles fatigue much, much quicker.
We got some unwelcome news today. Even if Naya’s counts get to threshold levels, we are destined to stay here probably through Tuesday or Wednesday of next week. One of the infections she has got into her bloodstream – exactly what we were concerned would happen and what led to pulling the Gtube in the first place. It’s dangerous and they don’t screw around with these types of infections. So, we are here until she completes the antibiotic regimen.
In the meantime, she is feeling much better and has now reached the boredom state. Her doctor and I are encouraging math. She isn’t yet there! She is making a loom bracelet now and we are getting ready to send Karolina off to Poland 😭 tonight by having a send off at CHOP.
Yes – Karolina is leaving tomorrow. We will post our thoughts tomorrow but needless to say we are heartbroken. She is family to us and a sister to Naya. She helped us get through the most traumatic time of our life. How do you thank someone for that?
Today, Naya got a visit from Elmo. No matter how old you are, Elmo always makes you smile. Much needed today after getting bad news and having to say bye to Karolina.
As you can see by our very sophisticated in room tracking system, Naya is rebounding and heading towards discharge. The key number to watch is the ANC ratio. Two days at zero and today showing the tell tale slight increase as her body starts to produce white blood cells. After we reach 200 we are out of here which hopefully will be tomorrow. 4 to >200 is a big jump but usually how her system works so hopefully she continues her normative behavior and we can make like a tree and leave!