I have come to the conclusion that the “Boogie Man” is real because in the past 3 1/2 months, we’ve confronted one nightmare after another that are still so difficult to believe…i.e, the potential scenario that made the hairs on the back of my neck stand up in caring for Rudy over the years is what unfolded on the morning of July 25th. When I googled my symptoms for the first time and ALS popped up as a possible match, I physically shivered at the thought but, of course, dismissed it as a crazy internet diagnosis. “I can’t possibly have ALS!!”. Well, today was my 2nd opinion appointment at UCLA and the ALS diagnosis was confirmed.
To be honest, I’m ending the day less devastated by the confirmation of the disease and more disheartened by our day as a whole. I knew my expectations were too high going into today and tried hard to readjust those expectations in the days leading up to today’s appointment but I really wasn’t prepared for how today played out. I have two responses…the practical and emotional.
Practically speaking, Rolf and I walked away from today with our second opinion and a clear feeling that UCLA doesn’t have much more to offer us than what is available to us locally and that is super helpful information AND important to remember.
Emotionally, however, I’m left feeling defeated and duped. We had the expectation that today would include a clinic visit with assessments from the clinic MD, physical therapist, respiratory therapist, nutritionist, etc. We were instructed to have Dr. C’s medical notes faxed to the clinic for the MD to review. We were told the authorization needed to have the clinic director’s information specifically so there wouldn’t be a delay in getting the appt scheduled or restrictions in care…a request that required a couple more phone calls to the insurance company. Bottom line, we worked hard the past 6 weeks addressing the checklist of “to dos” that ended up not having ANY impact on today at all. Our appointment lasted less than an hour. Although I have no problem with the doctor we did see, it wasn’t the clinic director which makes me question why we had to go to the trouble of getting a second authorization with her name on it. The medical notes faxed from Dr. C’s office, could not be located and, therefore, were not reviewed by the clinic MD. Confirmation of the diagnosis was determined by my answers to a questionnaire and a quick reflex & physical strength examination. I don’t doubt that is all the information the doctor needed to make his determination but I feel like we wasted our time coordinating the transfer of records that weren’t used. I thought we’d have more detailed information and the beginnings of a game plan as a result of today. Instead, I feel like we’re ending the day exactly where we started it and I can’t tell you how deeply disappointing that is for me.
To add insult to an already bruised spirit, I fell as I left the clinic. (Ironic as we had just had a discussion with the doctor about the big threat and potential negative impact of me falling!) It was an epic fall with bags flying and nothing to break the fall. Rolf had already left to get the car and there I was on all fours with tears streaming down my face in the middle of a large hallway unable to get up. Luckily, a maintenance employee heard the commotion, came out of a break room to inspect and hoisted me to my feet. Needless to say, I’m pretty sore tonight and less confident on my feet in general. 😦
Before we left campus, Rolf and I made our way to the main hospital to donate a box full of toys to Child Life in Rudy’s memory. It was difficult to be there without the boy so embedded in our UCLA memories. It felt like a foreign place…the familiarity of UCLA that we felt would be our comfort in this next medical journey just wasn’t there anymore…making it all feel even more isolating and unknown & our boy further away.
So, what’s next? I’m really not sure. There are no specific follow up appts planned at UCLA for now. We’re in the middle of open enrollment trying to figure out the best insurance plan configuration to meet our current needs. Dr. C and the doctor we talked to today didn’t have any knowledge of or information on the stem cell clinical trial at UCIrvine so we are left to figure it out on our own. And we will, all of it, one day at a time but not until next week because the MOHD squad has a SBRM graduation and Nashville wedding to go to this weekend!!!
I wish I could say some profound spiritual truth anchored me today in the midst of my frustration and disappointment but what did come to mind was the Veggie Tales theme song from the “God is Bigger than the Boogie Man” video my big kids watched a thousand times when they were little!
God is bigger than the Boogie Man, He’s bigger than Godzilla or the monsters on t.v. Oh, God is bigger than the Boogie Man and He’s watching out for you and me.
Silly, I know, but it’s true. God is bigger than our present circumstances and today’s lack of helpful information and options means there’s lots of room for God to work in His limitless power, mercy and love. Thank you, dear ones, for the abundance of texts, emails, and prayers upon prayers throughout today!!! Each one a reminder that we aren’t alone in this. God is bigger and our circle is wider than we could ever imagine and we are deeply blessed by the love. Thank you!
Rudy’s headstone was placed this week…another detail adding to our mixed bag of emotions. The final detail in laying our boy to rest is done. We’re pleased with how it turned out and hope it inspires some fun for those who visit him. A fitting tribute for our boy for sure…
Rudy's Beat 
I am so sorry for your disappointment today. It seems too many doctors and Staff are dropping the ball these days.Bedside manner has flown out the window. 😦 I’m sorry for your tumble too, ouch!
I hope tomorrow is a brighter day!
Rudy’s headstone is so perfect and precious.
Big sigh and a big hug. and positive thoughts and Prayers..
Prayers, prayers, prayers for you!!
I am so sorry. I have experienced frustration with 2nd, 3rd, 4th opinions… It is so hard when you are broken down yourself ( physically and emotionally) to fight the fight of insurance and finding the right medical support. I am sure friends want to know what they can do, maybe someone could make a lot of those calls for you? It is a scary time and I am so sorry you and your family have to go through this.
Prayers!!!! and hugs !!!! Yes, God is bigger than the Boogie Man !!!! You are surrounded with his love.
So sorry Trish for wasted time and frustration, and bad things in life right now, For falls and ALS. Good for you to share here with others and get off chest. There are so many who love you and your family. Hugs.
“If God is for us, who can ever be against us?(Romans 8: 31)… ‘Do not fear, for I am with you; Do not anxiously look about you, for I am your God.” Love you guys. keep the faith!
How I prayed for a different outcome for you. Trish, your friends will be holding you to our Father who is bigger than the boogie man in those hours and days when you don’t have some big insight to carry you through. I love you. Janice
Precious Trish. I thought of you all day! Praying that the paperwork and direction of your treatment will be void of all the confusion and clearer answers will follow. I love you❣️Lord Jesus carry my precious friend. Surround her with Your Holy Spirit. May You be the constant guide and companion at every road, cross road and turn. Comfort their family as they grieve the loss of sweet Rudy. Bind up the broken hearted and shower each one with Your blessings! We ask this in the mighty mighty name of Jesus Christ. Grant it Lord! Amen!✝️💟
Rolf And Trish! I don’t know how to describe the love and honored burden it is to carry you and yours to Jesus. Daily you come to mind and I have been allowed to share your story with others who are praying for you. As I read your precious and honest last blog I was reminded of something the Holy Spirit has whispered in my ear this last week in the midst of our own family crisis. It’s on my wall (thank you Hobby Lobby) “Be still and Know that I am God” I’ve heard this verse often and as I said it is on my wall where daily I seek Jesus. But, the still small verse focused in on the word “still”. So, loving words I looked into this verb. It was interesting because it had the call to sink deeply into something. Oh how my heart cries out for that simple truth to draw you deeply into the comfort of the Holy Spirit who knows and meets us with something we desperately need…to know He is God. Know also that your blog did not reflect any lack of knowing HIm but, for me that knowledge is something I long to saturiate my heart and mind and to hold me closely. Thank you for sharing your honest, sincere walking out of this story. I love you Trish though we haven’s spent time together. An older sister jeanette
Father in the midst of disappointment will you be so present to your daughter Trish and her beautiful family. I ask that they are aware of your loving presence everywhere they go. Heal the deeper places. You are a Good Father even now.
What a perfect headstone for Rudykins!!! I love it!! Placing that headstone much have felt so final. Trish, WE ARE WITH YOU….in heart and prayer in this journey!!! Yesterday truly sounds like a dark day. Your candle of light though, is shining in this awful darkness….you still declare that He is bigger. We are so sad you have to walk through this, and we love you so very much!
Yes… “prayers upon prayers, throughout the day”.
No words, dear one, only groaning with the Spirit and with you and Rolf. Travel well. Call/text/come over – whatever. Much love.
Oh dear Trish, I have been praying for your daily and I was praying especially for you so today. I am heartbroken for you that the UCLA appointment was such a disappointment. I pray that God shows his presence to you in the midst of this darkness. God bless you and love you 🙏
Trish,
I love the headstone you all created for Rudy. Lots of love and many prayers being sent your way from all over the world. You have touched so many lives and I know you will continue to touch so many more. Please keep sharing your journey my dear friend. All my love times 120+
God is there in the darkness, surrounding you all with His merciful love! Rudy’s marker is truly unique! Sending many prayers your way.
Dear Trish and Rolf,
Alongside you we grieve…😭
And declare😲
That God is bigger than the Boogie Man!!!
We love you!!!🙏🏼❤️
Loving prayers always! KB