Today marks exactly one year away from the day Jade is scheduled to ring the bell! 🔔. Seems like it’s already been such a long journey… trust me when I say I am ready for her to ring the bell, but I am also just thankful to have her feeling well and being cancer free. 

To give a broad update… Jade chemo regimen seems to be much better and much less toxic on her liver. All labs are within normal range and have been for weeks now. Her maintenance chemos have both been reduced due to the toxicity. She is still only at 25% on one chemo and 50% on the other. This seems to be her sweet spot though and we will likely stay here for a while. Her counts are still suppressed but not too low. Her ANC is about 1200 (normal is 1500-4000) anything below 500 she needs to be extremely careful, so 1200 is right where we want her to be during maintenance. 

Jade has been hit with back to back viruses since getting home from the cruise. She has honestly had a noticeable decrease in energy and I’ve noticed more fatigue and nausea recently. For the last 3 weeks she has spiked fevers on and off. She has tested positive for a few viruses and has just felt yucky. I hate seeing her not feeling great. We strongly dislike the ER. One of the visits to the ER we were put in the same room Jade was diagnosed in… I felt so overwhelmed and sick… I was terrified they were going to tell me terrible news like they did the last time we were in that room… ugh! Everything ended up being ok and she was just dealing with a virus, but I was scared…terrified is a better word. 

Because Jade has been hit with viruses so frequently her team is considering starting something call IVIG. It basically will help her immune system. Help her fight viruses because her body is letting us know it’s struggling. They consider this treatment if your blood test result is under 400 and Jades was 250. The infusion takes between 6-8 hours so it will be a long day. Then I think it happens monthly.  I want to read up on it more and make sure I feel comfortable with it, but she will probably have that start sometime soon. 

Jade has also decided that she want to go back to school full time in the fall…. And she will be in MIDDLE SCHOOL. She feels completely fine about it all.. She thinks I’m worried for no reason and I need to relax lol. I just was not expecting her to want to go to the middle school. It’s going to be a big transition (for me… more than anyone) lol. We had a sit down meeting with the principal of the middle school, the guidance counselors, the principal of the virtual school and they all really gave Jade the opportunity to express what she wanted and they all chimed in on how we can make it work. 

We will continue to just take things day by day. I am absolutely going to let her try the middle school out (as much as it may worry me), it’s what Jade wants. So much has been taken (ripped) from her already. If she wants to try the middle school, I’m not letting my fear stop her from trying it. I pray she loves it. I pray everyone is kind and sweet to her. I hope she makes friends and enjoys everyday. 

Jade has done a lot of hard stuff. She’s faced heavy/terrible things at 9/10/11 years old. I am extremely proud of her and will continue to let her take the lead with what she can. 

Jade has an appointment tomorrow. She will get labs checked. She will get pentamidine (this helps prevent pneumonia). 

Please continue to keep Jade in your prayers. Your prayers mean so much. Thank you for loving our girl and lifting her up in prayer.