TEAM ANNIKA-written by her mom after starting chemo again, her cancer is sadly back with a vegance.
Annika had a better night last night. Not quite as much nausea and she has started to get a little appetite. She got up to play in her room a bit today and it really wore her out.Last night I woke up in a bit of a panic as this new reality came crashing down. Things are so much heavier at night. A peace came over me, and had an overwhelming feeling of love being sent to Annika. Thank you to all of you who are right there by our side during this. I’m sorry I haven’t been great at returning messages and texts, know that I love and appreciate you all!
More chemo tonight and tomorrow. Stem cell harvest will happen in the next few weeks and then round 2 of chemo will start.
We are counting our blessings this morning. At around 3:30 am I got a strong feeling to sit up and check on Stockton. (His bed is right next to ours, and we usually know he needs us because we can hear his trach rattling.) This morning was different, it was very quiet, I never would have sat up if I didn’t keep having the thought run through my head. When I sat up to check on him he was completely purple, lips bright blue, no pulse and wasn’t breathing at all. I panicked and hurried and pulled his trach out (thinking maybe it was clogged) and when he didn’t start breathing on his own I started giving CPR, alternating chest compressions and breaths into his stoma. It took me about 4-5 minutes to get short breathes. I called 911 and they sent the ambulance. Then I was able to call my husband and he was able to get home to Dallas right before the ambulance left. Stockton was SATing in the 70’s until we were able to get him on some pretty strong blow by and on some breathing treatments. The ambulance took us to McKay Dee to get Stockton stabilized, where they decided to send us down via lifeflight. As we were loading him into the gurney for the helicopter he started seizing. He had several seizures this morning, and once we got to Primarys they did have to give his rescue medication. When we first got here he was requiring A LOT of breathing support, he needed to be on 100% oxygen and they were considering a ventilator. They did a head CT, x-ray shunt series, some viral panels and some lab work. They were going to send him to the PICU but he has been improving SO MUCH over the last couple hrs and is now down on 80% oxygen. He’s doing well enough that they are going to let us go to the floor rather than PICU. Thank you for your love, thoughts and prayers. They are definitely felt and so appreciated!! Stockton definitely has angels watching out for him. Please pray that we can figure out what caused this episode so that we can avoid another!! And big thank you to my dad for meeting us at the hospital and picking up Dallas. Love you all! We haven’t had a scare like this in a long time. Praying so hard.
So lots of people are asking and wondering how Bay is doing and what is going on. We have had many conversations, shared with family and loved ones. Bay has decided to stop chemo. The chemo she was on is no longer working and she would have to TRY a new, harsher one. She would be sick, with more hospital visits/stays. She doesn’t want to live that way. She wants to take the time she has and make it her OWN!! So.. What does this mean? This means.. We have met with hospice and that is the route we will be taking. Right now, today, Bays is good. She is feeling better since she’s been off the chemo and the swelling is controlled for now in her brain. The future?? Who knows. Not us for sure, so we will be taking every day as it comes. Cherishing every moment we have together. We ask that you continue to send BayLee your prayers, love, light and positive energy!!
Baylee is home enjoying her family while on hospice. we love you Baylee!
TEAM TRISTAN-written by his mother
Ok friends we did receive the results today. I’m sorry I kept you all waiting in suspense but it was for good reason. Unfortunately we did not receive the news we wanted. Tristans Cancer has returned.
We still feel that prayers being answered and ask you to continue praying. We hope that the PET scan will show that there is not cancer anywhere else in his body.
He will be having a port placed again & bone marrow aspiration on Monday. Chemo will begin and Radiation to the lung and any other location found in the scan.
I am also looking into other alternative treatments but please just allow us time to process this info and get our game faces on as we start round 2 with this ugly monster. It doesn’t know what it’s dealing with because we are fighting angry and we don’t lose!
Im asking for support, but give us some space as a family. I can’t talk about it on the phone or face to face (I’m wearing my game face for my boys). This is my baby obviously I’m devastated. We are strong & we will fight but not without tears.
You can help by continuing to pray and sending your love & support. Loves”