Help RJ with his Cheeseburger list

The exciting adventures of RJ Thomas continue! This is a long read. Some is happy and some sad. Spoiler alert! In the end, we ask for prayers, love, and financial support from our community. We are only asking for your help if you are able.

 

As far as modern medical science can tell us, we may be writing the final chapter of RJ’s story. His heart valve issue (severe aortic stenosis) is of the greatest concern to his doctors at Yale and CHOP (Children’s Hospital of Philadelphia) at this time. They have informed us that there are essentially no options available to us that would be able to safely fix the compromised valve. In his weakened state he would most likely make it out of open heart surgery but would probably not leave the hospital. The Drs. do have a few tricks up their sleeves we have been discussing but none of which are easy or without great risk to RJ. Any of these procedures will only delay the inevitable and would likely compromise the limited mobility and freedom he now enjoys. After talking over the options with RJ, his Drs. and our family we have decided that our best option is put this in God’s hands and not put RJ thru any further surgical procedures so that we can enjoy the time we have to spend with him given the quality of life he now enjoys. We have been advised that if no other viable options become available soon and we do nothing we have about a year or two at most before a major cardiac event happens. We have been told that an event such as this would greatly diminish RJ’s quality of his life as we now know it and or quite possibly end it. Miracles have happened already in his life and the lives of many others who have come to know him. Nothing is definite, except we are not going to sit around counting the time we have left. “Life is not about the breaths you take but the moments that take your breath away”…. still lots of people to meet and lives to impact! We need our community’s prayers, love and support once again.

 

The “new” medicine (Baricitinib) RJ is taking as recommended by CHOP may be showing some signs of clearing up his thought processes. Perhaps we are just overly hopeful, we aren’t quite sure right now. He is in week 7 of taking the medication and we were told about 8 weeks is the magic time period. So we are praying and watching. This medicine does a lot of good things for people like RJ with AGS (Aicardi-Goutières syndrome). We are hopeful that it will eliminate or reduce a lot of the symptoms he has from AGS. One of the issues we are struggling with is that even if the medicine works as indicated it still won’t address the issue RJ has with calcium building up on his heart valve.  A troubling aspect of this in an imperfect human sense is we (meaning us and his medical team) discovered this medicine/treatment so long after his diagnosis. We do have faith God’s timing is better than ours and that “his plans are not to harm to us but to give us hope and a future.”

 

Our kids, like most people’s kids, are our greatest blessing. Some kids’ lives are more interesting than others, all are blessings none the less. Our kids have made Heather and me into people we wouldn’t have become otherwise. The same could be said for our daughter. Natalie perseveres regardless of her seizure disorder, anxiety, or her little brother needing a great deal of our time. She, like other siblings of interesting kids, will discover things about themselves and grow in ways which would never have manifested under “normal” circumstances. Not that this makes them better or worse, but specially equipped for the life they are meant to live. I have faith in this about kids. “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” -Romans 8:28 NLT

 

Regardless of what happened yesterday or in the past, we rest in knowing that “THIS is the day the Lord has made and we WILL rejoice and be glad in it.”  Nobody is guaranteed of tomorrow but if it comes, WooHoo, how exciting is that!

 

We know this is a lot to comprehend but thank you for reading this far. Our close friends and family already know most of the story, but none of us know what the last chapter will look like because it will be written a day at a time.  We are very grateful because we have been blessed far beyond what we would have thought. We have learned a lot through all this and received a lot of help along the way. We and those caring individuals who have partnered with us on this journey have incurred a long list of costs in many ways (spiritual, mental, and financial) as a result of our interesting kids. Two trips we needed help with stand out. We were able to bring RJ to the Mayo Clinic to see specialists in hopes that they would render second opinions for RJ’s care. That trip which our insurance company said needed to be self-funded and was in fact funded entirely by our community, who stepped up and paid for the whole trip! Medical, housing, and logistical costs! I can’t remember the exact amount but it was about $16,000. People with the least offered the most. And some almost strangers, offered the most out of the blue. The other memorable trip was when we planned to leave for the first trip to CHOP at 3am the morning before the appointment. Natalie and Heather had to go to the ER at 9pm the night before about 6 hours before departure time, so me with no sleep and my new found copilot Grandpa, brought RJ to see the doctors at CHOP. 

 

The greatest result of our interesting life is we learned a lot about humanity; we learned what a gift our children are. Especially watching what they mean to certain people that need the love and friendship only a child can offer.

 

We are taking RJ’s Doctor’s prognosis and their estimated time frame we have to spend with RJ as a warning.  We are beginning this next chapter together with a sense of urgency. We are going to make plans now and do as much with RJ as time allows. Our goal is to maximize the time and make TODAY our BEST day! We can do a lot on our own but any help will lessen our financial burden thus allowing us to do more today. Any contribution will help. In this world with a thousand causes, we are asking that you would consider supporting ours; one close to home that you and/or your friends know about personally.  We don’t want this to sound like a sales pitch, we are just loving, caring, devoted parents throwing it all out there to see what happens. We are a local family in want (not need) of resources to maximize the time we have left with our son RJ. It is our intention to post with more specific plans for RJ so please stay tuned. God bless and thank you!

 

 

Thank you,

Ray and Heather