Support Registry Update

Trying to find our new normal.

In support of
Paisley Teague
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Hey friends, sorry this update came a few days later than anticipated. I am sorry for those who have been waiting. I am going to preface this update by saying that this update is probably one of the more "raw" updates and it's a bit of an emotional rollercoaster. 

First and foremost, the oncology appointment went well on Wednesday and we received a little more information on our treatment options. As of right now, we are still missing a part of the pathology report. This is normal, as it is more detailed and takes a little longer to receive. Once it is back, we will know if Paisley qualifies for a clinical trial that is putting a medication head to head with Chemotherapy. If we move forward with that we will be randomly placed on one of the "arms" of the trial..we do not pick, nor does our doctor. Both options have pros and cons that we are continuing to assess but we feel comfortable with both options as treatment for our baby girl. Our ultimate goal with treatment is to maintain the tumor size. Shrinkage may or may not occur but our main goal is to maintain the size it is after the surgery. In saying that, I came to the difficult realization that she may never be cancer-free. The tumor may never go away fully.. it may never shrink. That is why I stressed that our goal is to MAINTAIN the current size.

Moving on to something more positive, we already know that the surgery has helped Paisley's vision! Last June when she got her glasses, her vision was 20/40 20/70. Her vision is now at 20/25 20/40! I can't imagine the pressure her little eyes were enduring. We will be seeing an eye doctor who specializes in children with brain tumors soon to have a full eye exam work up. 

That's not the only good news we got! Paisley got the green light to go back to school! She's more than excited to go see her friends and teachers but naturally, Bradley and I have some concerns and hesitation. So just cover her in prayer as we try to finish out the school year as normally as possible. Today we tried to go on Coltyn's field trip to the Science Center and it proved that lots of noise still effects her head and causes intense pain. We had to cut the trip short and get a nap.

Our plan right now is to find our new normal this month, heal, and then find our new baselines at the end of the month. Paisley will have several tests done at the end of the month to see where everything is after the surgery and before treatment. (eyes, heart, hormones, MRI, etc.) And then in June, we will start treatment. 

Please continue to pray for our family as the boys don't understand why we are all seperated sometimes, why sissy cries with headaches, why they can't be too loud, and why things are just weird right now. Pray for our faith and understanding in all of this. We know that God has a plan but sometimes it's hard to see what the plan/purpose is. And pray that she is able to tolerate going back to school.

Thank you guys again for all the things.. It's been warming to have the support of a village behind us. I will update again when I have finalized information on some of the benefit events or more things to report. 

Psalms 34:4 "I sought the Lord, and he heard me, and delivered me from all my fears."

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Comments

Michele Holler

Praying for all of you sweetie!!
  • 8 months ago

Tammy Thompson

Thank you for the update. I will continue to keep all of you, especially precious little Paisley in my daily prayers. Just keep the Faith because we know that only God knows the reason and the outcome for all this. I pray he gives you strength and peace to endure all that each of you are going through. 🙏
  • 8 months ago