New Challenge

This post is about our youngest son, Robert, who had a seizure at his office Wednesday, 25 May 2016. He was taken to the nearest hospital by ambulance and had a CAT scan and MRI. The tests showed a 4 X 4 centimeter tumor in the speech center of his brain. I know this was not happening in the Sydney South Mission, but suddenly, everything else in our lives seemed unimportant. I want to share here his wife’s posts on Facebook (and a few others).

27 May 2016: In the past when I have seen friends, loved ones or even strangers go through  trials I have often thought to myself, “how are they ok? How can they continue? I’ll say a prayer for them.” At this moment, I humbly beg for your prayers for my sweetheart Robert. We discovered yesterday that he has a tumor in the speech processing portion of his brain. He needs an awake craniotomy and we are praying that the surgery will happen as soon as possible and that it is not cancerous. I feel quite out of my comfort zone sharing such tender, private information on social media, but I believe in the power of prayer. I have a testimony that miracles do happen and that they can happen for me, and for Dawson’s daddy. Thank you for your faith, your prayers and your friendship. God is good and real and no matter the outcome, I will trust and follow Him.

“Thank you” seems inadequate but it’s all I have to offer – other than this picture of the most handsome neuro patient on the floor. (most of the other patients are intubated and over 80, so maybe the comparison isn’t that fair…)

28 May 2016: Friends. We are truly humbled by the avalanche of love, support and prayers. Robert will not have surgery today. Surgery is scheduled for Wednesday because that is when the team of surgeons can fly in from Philadelphia and Texas for this procedure for which we are extremely grateful. The neural surgeon here is part of this team that specializes in “awake craniotomies.” Robert will be asked a series of simple questions on Tuesday night and then will be woken up during his surgery to again respond to those questions to make sure that they are not damaging his speech and comprehension. During the procedure they will biopsy the mass and test it for cancer at the hospital and at the Mayo Clinic. Results of the test can take up to 10 days to arrive. Other than that, we don’t know much about how long the surgery will take or what recovery will be like.

What we DO know is that we have felt literally strengthened and uplifted by the prayers and kind words on our behalf. We both slept extremely well last night and to quote my friend Amy, “sleep makes better humans” and I totally agree.

Posted 29 May 2016: No major update today, but I thought y’all might enjoy this pic of Robert and one of his nurses. Watching her try to help him walk to the bathroom was pretty funny. Awake craniotomy still scheduled for Wednesday morning. If anyone is interested in joining, our ward and family are fasting for Robert tomorrow.
Note : Robert doesn’t need help walking – just hospital procedure and such…

 

Posted 1 June 2016: Tonight, I thought it would be fun to mess with Robert’s hair and then shave it completely in preparation for surgery tomorrow. After cutting steps up the side and a pretty legit Mohawk the surgeon came to prep us for surgery details and was mortified when he saw my handiwork. He informed us that he is so good that he doesn’t even need to shave Robert’s head and I had just ruined my husband’s hair for no reason! I burst into laughter while Robert and the surgeon looked less than enthused. Oops!
Surgery is scheduled for 8 am and we are feeling confident and hopeful. Thank you for your prayers of love and support. It’s helping.
Ps: for some reason Robert didn’t want me to post the Mohawk pic so you’ll just have to believe me when I say that he looked RAD. We ended up cutting it all one length but the steps are still visible, so that’s cool.

Posted 1 June 2016:Here we go!

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2 June 2016: For Valentine’s Day I had this card made for Robert because I thought it was cute but just enough wit to not be too cheesy. Didn’t quite realize how literal this would become. Robert is out of surgery and fast asleep. It went as well as expected. They were not able to remove the entire tumor, but the surgeon is happy with his work. We won’t know exactly what it is for about a week. I, personally, feel in complete awe of our Lord and his hand in all of this. We have seen so many miracles already. We have been buoyed up in the midst of this storm and are eternally grateful for each of your prayers.

Posted 2 June 2016: This is Jocelyn, Renae’s younger sister. The surgery went great and he is speaking and singing and joking. Renae is visiting with him right now. We extend inexplicable gratitude for all the support and prayers! Robert has felt strengthened throughout this. Thanks to everyone who has reached out and helped in so many ways!

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Posted 3 June 2016: They just wheeled Robert down for an MRI to see how much of the tumor is left in his brain. Recovery, so far, has been interesting to say the least. They warned me that his speech would have deficits but that was an understatement. His comprehension is normal, but he now only speaks in one to two word fragments and he struggles hard to find the word he wants. This has been the hardest part for Robert. He loves to talk and connect with people more than any man I know so to not be able to communicate his wants, needs and feelings has been a challenge. The brain is AMAZING. He is fluent in Spanish and yesterday he was way better at speaking Spanish than english. My brother and sister had to translate for me. He also was able to sing “How Great Thou Art” beautifully with no problems at all but then asking for a drink of water was a struggle. The doctor said that he should recover his speech and that this is pretty typical behavior. We are not sure how long it will take to get his speech back – it could be days, months, or a year. But the benchmark is that basically he will improve for a year, but after that whatever he has will be permanent. He will need to do speech therapy. So I’m going to go easy on him for a couple more hours but after that I’m going to make him figure it out. The doctor encouraged him to not get discouraged/frustrated when he reaches a wall, but to find away around the wall when searching for his words. The doctor said that this is the most frustrating of all brain injuries. There are compensations for physical limitations (use the other hand if one isn’t working, walk with a limp but still mobile…) but there are no compensations for speech. So we are going it practice, practice, practice! I have been missing teaching and coaching so this is my opportunity to put some of those skills to use. Aaaand it turns out that I’m pretty competitive so I WILL NOT lose to a stupid little tumor. Crazy to think that I’ll be teaching my husband and my son to speak in the same year!
This picture of the two of them was taken the day he had his seizure – feels like a lifetime ago.

Dayana Pelaez Cagle: I haven’t updated since last week regarding our friend Robert: surgery was in Wednesday and 80% of the mass was removed! Results as far as what kind it is will take a about another week. He is recovering well, and practicing all of his speech which has been effected. His Spanish is intact because it is a language with rhythm so words flow easily. Modern English has lost its original Old English rhythm. Short syllable words are harder than very long words. Kurtis visited this morning and FaceTime me in and they seemed to be having a blast together with another RVE brother! We are honored to be part of their family of support and ask that you continue to pray for even more miraculous moments of healing and a full recovery!

 

( Robert’s brother, Thom, flew in from Philadelphia for a few days to stay with Robert. That made it easier for Renae to get to the temple and spend some time with this darling boy.)

Posted 5 June 2016: I stopped by a special place of worship on my way home from the hospital yesterday. I felt so much peace and hope there. Today, Robert’s bandages and drain from his head were removed so we are one step closer to going home! We also met with the speech therapist who, after a series of tests, confirmed that his cognition, memory and speech are all impaired. His speech is the most damaged and he needs therapy which was no surprise at all. Robert has spoken a couple 5 word, unprompted sentences today which is a huge improvement so we are hopeful that with therapy he will be back to his chatty self in no time. The nurses let me take him for a walk OUTSIDE today! He has never been happier to feel the humid air on his skin.

Posted 5 June 2016-I went home to visit this munchkin yesterday and it was heaven. MAJOR props to my angel momma and sisters for watching our son while we have been in the hospital. He hasn’t missed me for a second.

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Posted 12 June 2016 Trying to make the best of a difficult situation by enjoying time on the lake. Robert’s speech is improving by leaps and bounds – it is truly a miracle. His swelling has gone down a ton, too. We are still waiting for the results of his tumor and for the next plan of action for his care, but in the meantime we are loving all the time we get to spend together. I am his personal chauffeur and he has only been annoyed with my driving once this past week!!!

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Posted 19 June 2016-Yesterday morning Robert had an appointment to remove his staples and there we were told that his tumor is cancerous. We also learned that about 65% of the tumor still remains. We need to meet with an oncologist and find out the next step in his care. We don’t know much more than that but the neurosurgeon did say that he suspects the tumor has been growing for a while (5 years or so) meaning he doesn’t think it is very aggressive. It was a tough morning, as you can imagine, so we decided to go to the Atlanta Temple and remind ourselves of the promises we made to each other and our Heavenly Father when we got married. We felt so much peace, comfort, love for the Lord and for each other as we worshiped. Robert has been a complete rockstar through this whole ordeal. I have stood back in awe of how he has taken everything in stride and has complete, unwavering faith that he is in the Lord’s hands. He constantly reminds me of the many miracles we have been blessed with this past month. I love him. A lot.

Robert’s post:

Posted 19 June 2016: I thought I should updated everyone. It’s been my 1st post in over a year..

I had a seizure last month…
An MRI scan found a brain tumor & I had an ‘awake craniotomy’ on June 1st…
The surgery was nothing short of miraculous: I had the seizure at a work meeting, surrounded by people who cared for me, the doctor is the top in his field, & my recovery has been amazing…

I literally couldn’t talk a day after the surgery and now I’ve recovered almost 90% of my speech..

We just found out Friday that the tumor is cancerous. We await the specific results from the oncologist but we are extremely hopeful.

I have witnessed as God’s grace continues to pour over me and my family. Thank you for your prayers & fasting.

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Posted Sunday, 26 June 2016: When Robert and I were dating I hid from him the fact that I was a Type 1 diabetic for a long time. I would sneak into the bathroom every  time I needed to check my blood sugar and administer insulin. As a girl in South Provo in her mid to later 20’s, I was terrified that he would find out and jet the second he realized I had a lifelong condition that would definitely impact my future family. One night, after I was pretty confident that he was kinda into me, I nervously confessed to him that I had diabetes and would for the rest of my life. He looked at me and said, “Ok. Well, I love you so that doesn’t really change anything.” Fast-forward five years…  As we left the oncologist on Monday Robert reminded me of that story and said, “Jokes on you!” The oncologist told us that his cancer is incurable but treatable. Even if they had removed the entire tumor it wouldn’t have mattered because he has cancer cells all throughout his brain. They are STILL waiting to find out the very specific marker of the cancer to give us his treatment plan. It looks like we will be fighting incurable diseases together for the rest of our lives. The word incurable is scary but we are confident that we can manage it. They have given is no “timeline” or “odds” so we are just trying to live as presently as possible. We were told that chemo and radiation have come a long way and that is a glimmer of good news that we are holding on to. Robert still remains upbeat and positive. This picture was taken hours before I told him about my diabetes. Thank you all for your love, prayers and support. We feel them.

 

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