Trying to have fun in isolation.
This is Nicole, I’m sending this update from my phone. Apologies for typos in advance. Sally slept very well and woke up playing peek a boo with her blanket. A good start to the day. Shortly after she was uncomfortable and was given morphine. She had morphine twice and round the clock anti nausea. It worked well and although clingy, grumpy and bored, I don’t think she was in too much pain and no vomit. Goal accomplished! She has started itching her nose after morphine and may be developing an allergy. Tomorrow we will try a new pain med if needed. I’m not sure what’s hurting her, but I know her ques. On the upside she learned how to shake her head no. Any gain in communication is helpful and I’m thankful.
Sallys steroids started to kick in and I’m seeing some increase in appetite. Once a cycle Sally gets a week of high dose steroids. Ive been asked many times why she is given steroids. With leukemia steroids are use as a chemo. Steroids lower your immune response by killing white blood cells. Her chemos job is to kill off her white blood cells. Thus included leukemic cells. The steroids unfortunately mask infection, cause bone and joint pain, increase appetite, mood swings, cause insomnia and restlessness. By the end of the week Sally will become a little hulk baby. Hopefully after Thursday we should be able to leave isolation to distract her.
Yesterday Sally’s white cell count was .3 & today .1. She has 0 neutraphils (bacteria fighters). The effects from her first week of chemo take 7-10 days to take effect. Today was day 8 so although not far to go she may not have hit bottom yet. She has to bottom before she can rise. So, we may not be leaving till Sunday. On Monday when I brought her in she had a fever ( sign of infection) so they are continuing anibiotics. Her platelets have also fallen (not a surprise). During the night she’ll probably have a transfusion. Starting yesterday and until her counts recover she is also getting a daily shot to help with recovery. Sally knows when she feels the alcohol on her leg what’s coming. She us a real trooper and never holds a grudge.
With the boys in Florida I’m happy to spend the week with our inpatient nurses. Msk is a home away from home in many ways for us now. I have missed them, and i always learn nursibg tips that help me tske care of Sally at hone while were here. Usually I feel guilty leaving the boys for long periods to be eith Sally. I’m very happy they are busy enjoying themselves with Matt and there grandparents. It leaves me to focus on Sally. Plus I’m gaining a ton of massage minutes with Matt since I’m at Sloan and he’s going to Disney. He owes me 120 minutes so far!
Unfortunately since our last visit they are still having trouble with the coffee machine. I had to wake myself up with a day old cup of Joe this am! Which is not a huge problem but the folks of Bay Ridges Cares and local business and neighbors are send a Keurig to the rescue tomorrow in case it goes out again. There are many angels walking the earth. I’m very thankful I live in a neighborhood full of them. Also thanks to all for texting, fb and emailing to check in Sally and I. My friend Annmaire visited last night and my cousin Jenny tonight. I am fine and Sally is as good as she can be till her counts improve. I’m enjoying our girl time while my guys play in the sun.
Please keep Sally in your thoughts and prayers,
Nicole
God Bless your beautiful family!
Nicole, I’m thinking of you and Sally and praying for you both. I spent a Thanksgiving in the Hospital when my daughter was 6 years old. They never did serve us Turkey that day. My thoughts are with you and Sally. Xoxo
Little girl you’ve turned into one of the best mothers I know. Well you did have a great role model. I pray for Sally all the time and I pray for you!, keep to the positive side. I know I’m hopping to hear about the day that the whole family gets to go to Disney!, kisses Lisa
I can bring you coffee today!! Let me know. xoxo
You are always in our thoughts and prayers…so good to see “your boys” for dinner on Sunday…thanks for your update…
Nicole you’re so inspirational. My prayers and thoughts are always with you and your fam with all my heart xo Sending cyber hugs to your sweet Sally!!!
I follow Sally’s blog through my friend Donna V. and pray for her healing. You are truly on the right track because being positive is what makes things in life get better and better. Sending positive energy your way.Keep pushing Little Sally Sunshine!
Nicole thanks for the update <3 I'm sure it's hard being away from Matt and the boys especially with Sally being at MSK. You are doing an amazing job as always. Sally does not have that glow in her eyes. I can always tell when she's not feeling her best 🙁 praying that she gets to feeling better soon. She's such a trooper hugs to you and Sally and many continued prayers.
I remember your face from our days at Kearney many years ago. I have been praying for you and your gorgeous baby girl everyday. ❤️
Hi Nicole! It was so nice to talk with you yesterday and report on our visit with Thomas and William. They really are enjoying the water and we are enjoying them. We had an early Thanksgiving Dinner with the boys since they will be going to Disney and leaving around lunch time on Thanksgiving. We have to pray that the weather allows them to fly home since they miss their Mom and Sally so much! We enjoyed our trip to Mote Marine and I was impressed with Thomas’ mature questions about the resident water creatures. I will miss Matt, Thomas and and William. Love to Nicole and Sally. Gram
I know Matt feels very badly about leaving you with Sally, but you two are so grounded that you know this is really good for the boys. Thank God you have all those great nurses helping you. They are truly angels – and some of them are even Kearney girls.
Love an prayers every day, from all of us.
So many prayers sent from us to you. xoxox Enjoy the time with your beautiful family tomorrow. <3
God Bless
Hi Nicole how are you? I am sad Sally is not feeling too good & is in hospital. I so wish I could pop into 9th floor to see you both but we are in isolation as my nanny came down with chicken pox… It really knows how to pour! Fingers crossed Ariane doesn’t get it. Sending you lots of prayers & love give our baby Sally a big hug.
Mariam that is dreadful for all of you. So sorry to hear. We’ll see each other again soon. No worries. Best to Sallys other mommy.
I really hope and pray that your baby gets better and becomes cancer free. I could not imagine what your going through you really must be a strong women. May GOD be with you and your family