The First 3 Days: An Enhanced Copy of Our Family/Friends Email

 These have been the longest three days of our lives. A LOT happened in a short time, so here is our summary:

- Hyrum was vomiting and experiencing rapid vision changes for about 5 days. It seemed like his vision was causing dizziness/vomiting. We took him for a pediatric vision photo test on April 4, and she referred us to a CT scan. That test revealed a tumor on his brain stem. The pediatrician cried when she told us, and we felt seen. 

- She asked us to go immediately to the pediatric ER. Thank GOODNESS that my family was in town to be with Caleb and Emily while all this happened. What a miracle. We told Hyrum that his brain had something growing inside that was pressuring his eyes, and that he would need medicine and tests. 

-He received steroids at the ER to reduce the herniation (swelling) of his tumor. Parents of hospital patients are (of necessity) mostly vehicles of information: sharing information and listening to information about the child. However, one of the doctors paused, saw me deeply, and recognized my suffering. She prayed with me, invoking the “Master Healer.” I felt peace. 

- Hyrum and Michael stayed the night at the hospital, and I returned the next morning. He had an MRI around noon. Anesthesia was risky, and the anesthesiologist was well prepared but visibly concerned. Michael and I prayed with Hyrum, and when I asked for his brain to be calm, I felt a nudge from the Holy Ghost that it would be fine. We went forward, promising Hyrum angels to go with him. We felt them with us also.

- Hyrum did very well in the MRI. After, he ate a BIG late lunch (mostly onion rings lol), continued playing iPad games, ran around the outdoor hospital playground, played with Lincoln logs, etc. His vision and balance are still a little off but his behavior is otherwise normal. From what we've heard so far, we anticipate that he will continue like this (very little pain, good energy, etc.) throughout his treatment. 

- After the MRI, Michael went to be with Caleb and Emily. While he was home, Dr. McNall (the cancer-specific neurologist) came to share the results from the MRI. She told me that the results were very conclusive, and a biopsy (a surgery to take a sample) would not be necessary to diagnose the tumor. It is very aggressive. She told me the name and asked me not to Google it. She said “We have not had much success treating this kind of tumor.” 

- I found a private room and sobbed, then went into shock (luckily, I have some basic emergency training and knew what to do! Haha) I told the floor nurse, and he did a great job helping me. Michael arrived at this time to support me and be with Hyrum. Leaders from our congregation gave personal, blessings to me and Michael. He was a ROCK that afternoon. 

- We watched some of our favorite Bible videos (like we always do) with Hyrum and felt peace. He said unprompted “God sees the love in my heart and wants to take me to heaven.” He also said “When I see Abraham and Nephi (an ancient prophet from the Americas, referenced in the Book of Mormon), I’ll tell them I’ll be their eternal helper.” 

- The treatment plan right now is 6 weeks of radiation (every week day for 1-2 hours) then 4 weeks of rest, then some kind of clinical trial. A clinical trial would be location specific- possibly in Dallas and Utah.

- We are balancing a lot right now as we plan treatment for Hyrum. Talking about this can be consuming, and we don’t want our kids to have constant medical discussions happening around them. We are not keeping this from them: we tell them what is happening in ways they can understand. Please let US (Michael and me) be the instigators for these conversations with them. Do not bring it up to them, but if they bring up Hyrum’s sickness, absolutely talk about it with them as they lead. We know that they will, and we are grateful that you can listen to them and express love. Despite all of our faith, there is no easy solution here, and knowing the reality of God does not negate the messy feelings that will need plenty of space here. 

- Michael and I will also need to talk about this, but mostly about what is happening NOW. Constantly rehashing what has happened, or speculating about what WILL happen will be exhausting and unhelpful for me and Michael. A good way to ask would be something like “Tell me about today.” Or “Do you want to share any of your current thoughts and feelings?” We have felt VERY sustained by God as we seek inspiration and help for today, but thinking about too many hypotheticals is hard.

- We love you all. We are so grateful that you belong in our life, and that Hyrum belongs in yours. We know that you will have your own feelings about this, and we pray that you have all the space and support you need. Selfishly, can we request that you process your unique, sacred feelings with (insert anyone except me and Michael) and save a neutral space to discuss things with us? 

We will bring our grief to you in some moments and need you to cry with us. We will bring optimism and hope and need you to share it. We will bring anger and exhaustion and need you to validate it. Please be ready. The feeling we need from you is not your personal sadness or well-intentioned-but-over-the-top-optimism- it is love. We have felt yours already, as we have from God. We will continue to need it. 

I’m sorry if receiving this information in an email (or a blog post) makes this hard for you- it’s the best way I can do this right now. Thank you for your love and grace as we live each new day of this unexpected journey. 

Erica, Michael, and the Mace family