I honestly don’t know where to start… 

I guess here… Jade is ok… but has honestly been through the wringer lately. We are still trying to do fun things and have a wonderful summer. 

June 3-ER trip

June 10- ER trip

June 17- ER trip

July 1 - ER trip 

July 8- ER trip

These on are top of weekly appointment to the clinic.

I had to look back and see what I said last update, because poor Jade has been struggling. She wants so bad to do all the things, but she feels so bad a lot of the time.

At the ER visit on July 1st, they found she has another virus CMV. This is like mono. Makes you feel terrible. And can be reactived in people that are immunocompromised. Jade’s levels keep rising and she will now start a medication to help that. She will take it twice a day for 2-3 weeks. 

However, just like with all medication, there are side effects.

Jade’s liver has been hit hard with chemo. Recent ultrasounds show that it is still struggling. Her team is working very closely with the liver specialist we were referred to in April. They want Jade to have a liver biopsy done in 3 months. She’s had different test to look at what is going on but the biopsy will give us more accurate information. 

All of this is so much for a little girl. It really is. She is ok, but it is like an endless cycle of medicine, tests, chemo, appointments, side effect, complications,  etc. Next week she has two appointments. Thursday she will be put to sleep with chemo is spine. She will get IV vincristine and IV pantamadine. On Friday she will get her first IVIG. This is supposed to help boost her immune system. Both days will be long. The IVIG can last between 6-8 hours. 

Just keep praying for our girl. That she can feel good and have energy to play and do things she enjoys 🤍