1 week post surgery update

My dear friends,

Thank you for the overwhelming love, generosity, and support we have been so unworthily receiving. God is pouring His love and mercy over us all. It brings me to tears to witness and I will never be able to thank you all enough or express my gratitude for it all. Praise God for all His blessings and endless mercy.

God has truly laid everything in my lap this week, telling me to surrender, trust and He will take care of it all. He has truly taken care of everything and more. I love you my Lord and my Savior. Help me love you more.

Father Anselm was able to get us in touch with a priest who came Sunday and we received Our Lord. What a blessing!

A Huge Update:

I had a telehealth appt with a radiologist from UCSD to discuss receiving 6 weeks of Proton radiation there. This was recommended by MD Anderson. The doctor came in the call and confidently told us that Proton radiation is not the right way to go. She agreed with my neurosurgeon and said it is still too targeted and my cancer is too aggressive to use it. She said I need someone that specializes in CNS brain tumors and has experience with ependymoma. She was confident that this is indeed supratentorial ependymoma with zfta-fusion positive. She recommended a doctor at UCI and said he would be perfect and I can receive my 6 weeks in Irvine, ca!!! Praise and Glory to God! I don’t need to go to San Diego every day for 6 weeks. This will be an incredible blessing and so much better for the children and our family.

She did emphasize several times that I can’t wait and need to start as soon as possible because it grew back in 3 weeks last time and is very aggressive.

Another miracle by my Savior is that besides already being a patient at UCI, I have a friend who is a nurse there. My friend had already gotten me in touch with the doctor she works for before my surgery. I was able to talk with her and ask if she knew the recommended doctor. She does know him and was able to expedite me getting in for an appointment. I have a telehealth appointment with him TODAY!! How incredible is God. Why am I so blessed that He is laying everything in my lap so perfectly? Im overwhelmed by it all. I will post another update about this after the appointment.

A few updates:

Damien bought a standing walker and the walker that was suppose to be here Friday was delivered Tues. Afternoon. Praise God!

I received my custom ankle, foot, orthopedic brace on Monday as promised. It is honestly a game changer. It helps my stability so much and will help me be more independent quicker.

I started physical therapy Saturday and then had it again Wednesday. I love the approach of this company. They are not interested in checking boxes. He explained to me that my problem is not strength or ability, it is having my brain create new signal pathways in sensory and motor areas. He explained how I should try not to compensate because then I will be training my brain incorrectly. I might not get back full functioning. He told us that it is about correct repetition (1000s of times) doing the correct motions and it doesn’t need to be me physically walking so many feet, it is me in bed doing repetitive correct leg and foot movements. He told me to be patient because I may not see progress for a long time until my brain creates the new pathways and then it might be sudden and great improvement. I have seen improvement this week which is great but he wanted me to know that if I stall not to give up or think it isn’t working which I really appreciated. This company doesn’t usually get to follow patients home but in God’s great love and blessings they were approved by insurance to follow me home. (After last surgery I never fully regained use of my left leg, physical therapy did teach me to compensate so Im hopeful this time that I will gain full functioning back.

This week here has been the perfect recovery place. It has definitely made up for the difficult hospital stay.

I have had more and different symptoms and struggles this time around.

Im still light and sound sensitive and too much stimulation is overwhelming and hurts. My left leg is weak, less sensation. My left arm is weaker but still functioning. The difference this time is he did surgery in a new area thats a motor pathway so even though I have less sensation in my leg i have a lot of muscle pain, stiffness and cramping in my whole leg and foot. I am unable to move my leg to relieve any of the pain or cramping. We realized I was getting focal seizures in my face, neck, arm,stomach and leg on left side. The doctor doubled my anti-seizure meds. Im still getting them but they have greatly improved. I have had more up and down days than I think I had last time which is fine, its just different. My headaches are more manageable which is a huge blessing.

We have such an amazing faithful community that provided us today another huge blessing. I had 2 friends drive an hour or more each way and take turns staying with me so Damien could go home for over 5 hours to spend time with the kids. He said it was incredible. The kids were all over him and they needed it so badly. He cuddled them, took them to the beach, talked with them. It was so healing for all of them. Im so incredibly thankful. God has given us friends who know no bounds to love, generosity and sacrifice. Im so undeserving. I miss my kids so much and cry for them. I can’t wait to see them, hold them, and be with them.

We will check out from here Friday and I will stay the weekend at my parents house. On Friday the kids will come over to parents house and come to the room 1 at a time to cuddle and talk to me. Im looking forward to this immensely. This way they will each get time and it won’t be overwhelming for me. It will also give them an idea of how I am so they know what to expect and how to behave around me when I get home. I will see how Im doing by Monday and go home if I think I can handle that.

Thank you for bearing with these long updates. Thank you for your prayers, texts, calls, visits, generosity, meals, support, encouragement and friendship. God is pouring blessings and consolation over our family. Praise and Glory to Him now and forever.

I want to post a reflection and random thoughts post before I go home if anyone is interested.

God bless,

Ashley