Hi! We’re back in business after having had my computer worked on for a few days by the geeks at Geek Squad. I really need to stop watching certain “adult movies” on my computer, as they contain a lot of filthy viruses…not! Anyway, I always feel like I’ve let Ryan down if I don’t write something (even if it’s minor) daily in this (his) journal. Ryan’s been steady (we should have named him Eddie), status-quo, even-keeled, the same…meaning, everything’s been normal…for him anyway. Remind me to tell you about a couple of “wonderful” gifts he received this past week. But, before I get into those, I wanted to forward this information about our friend Luke Souza (from his Caring Bridge website). Please continue to pray for him. Thank you! And, May God Richly Bless You All!!
Luke Souza Update:
Results of UCSF meeting 2/13/19
Journal entry by Vickie Souza —
Wow! So much information to grasp in a nearly 3 hour meeting with the doctor and the nurse. On the positive side, we like our new doctor, Dr. Andreadis and this continues to be treatable. He is a hematologist specializing in bone marrow transplants for Hodgkins & NonHodgkins Lymphomas and Leukemia. The bad news is that there is a lot more to the treatment plan than we anticipated. He outlined a 3 tier treatment plan as follows:
1- Two consecutive days of chemo with Brentuximab done twice 3 weeks apart from each other. Afterwards, a PET Scan. If it looks good then will proceed to:
2 – Stem Cell Transplant – some prep stuff is done to boost the stem cells, then admitted to the hospital to have his the stem cells filtered out of his blood (@5 hour procedure) and frozen. Then receive some intense chemo treatment and then monitored afterwards, so about a 3-4 week stay at UCSF Hospital in SF. Following he will need about a 2 month house arrest type of schedule to protect him against germs and infections. He will have to have all his vaccinations again since they will be wiped out (the ones you get as a baby and toddler). I’m sure more scans, and lab draws along the way…. etc.. and then eventually move to the next step:
3-Chemo treatments once every 3 weeks for one year.
How did we get here? Ya we wondered the same thing!?! I guess some cancer cells can be resistant and can hide from the chemo and radiation treatments, ugh!! So other more intense treatments need to be used — bringing out the big weapons over at UCSF to clear this once and for all! AMEN!
It weighs heavy on Ken and I that our Luke will have to go through all of this for the next year and a half. 😦 Of course, Luke isn’t too happy about all of this, but like before, he faces it head on, fearless, and with strength and bravery. He amazes me! Cancer is messing with the wrong dude! I know God will provide a way and will give us the grace we need to face each new day.
Thanks again SO VERY MUCH for all your support, encouraging comments and prayers! Keep them coming. I will try to keep you all updated along the journey. God bless each and every one of you and your families!
Occasionally, people ask me how I’m still able to maintain a positive attitude after all these years (almost 8 of them) dealing with Ryan’s condition. Truth is, my attitude would suck if not for God’s grace. You know that poem “footprints in the Sand, the one about seeing a single set of footprints left because God is carrying you? Well, God’s carried me all these years. If not for Him, I’d be toast. Thank you Lord! I am forever grateful…
One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.
After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.
This really troubled me, so I asked the Lord about it.
“Lord, you said once I decided to follow you,
You’d walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don’t understand why, when I needed You the most, You would leave me.”
He whispered, “My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you.”
My flip phone has been steadily dyeing over the past 6 months. So today, after much kicking and screaming, I finally went out and got a new cell phone. Now I’ll be able to Facechat, Instabook, and Snapgram along with the rest of today’s hipsters. Watch out world! No really, watch out! I’ve got no idea what I’m doing, so if you get some weird (or should I say “weirder than normal”?) text message from me, I may or may not have sent it by error…for now, you’ll just have to keep guessing.
Anyway, once I set my phone up and download some cool apps, Ryan and I are going to have some fun. Please stay tuned…
For now, the only thing I want to do happens to rhyme with app; and that is take a nap…for a really long time. Goodnight y’all!
I really want to create the most positive environment for Ryan. Therefore, we don’t watch the news and/or read negative articles. We listen to the Bible on my computer, listen to uplifting music on Pandora and other channels/stations, watch fun movies/shows, etc. and pray a lot. It’s not always possible, but we do our best to stay away from negativity all-together. Ryan’s got enough on his plate. We’re extremely grateful to God for providing us with a comfortable and tranquil space…
Colossians 3:2 Set your minds on things above, not on earthly things.
John 8:32 Then you will know the truth, and the truth will set you free.
Psalm 25:5 Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
Many things that were taught as “truth” when I was a child are being disproven today. One “truth” that has now been disproven is that Pluto was a planet. Pluto now has the distinguished title of “dwarf” planet, because it doesn’t orbit the sun and/or dominate the neighborhood around its orbit. Okay…
“According to the new definition, a full-fledged planet is an object that orbits the sun and is large enough to have become round due to the force of its own gravity. In addition, a planet has to dominate the neighborhood around its orbit. Pluto has been demoted because it does not dominate its neighborhood.”
An even more interesting (and significantly more important) “truth” that is currently being disproven (as if us Christians didn’t know this already) is Darwinian Evolution. Read the following article and come to your own conclusion. Or, you can read the Bible and really know the TRUTH…
One positive thing about watching Ryan (and there are a lot of positive things) is that we have a lot of time to explore/learn about new things; whether it be a new movie, book, study any topic, subject/category, etc. Over the years, we’ve watched several documentaries. A couple of favorites are: Mark Twain & The Ted Bundy Tapes…quite the contrast in subject matter. We’re also learning (well, I should say I’m learning and Ryan is brushing up on) Spanish, Japanese, Russian, Chinese and German. Well, maybe not Japanese, Russian, Chinese and/or German, but the first one anyway. We’ve also read through the Bible once, and are well on our way through it again. We’re also writing music together. Point is, we’re doing things together that we might not otherwise take the time or energy to do if our lives were “normal”. We’re taking time to do things we (at least I) like to do, and I’m hoping Ryan likes to do them with me…even though he sleeps most of the time when I’m with him.
Make sure and spend as much time with your child/loved one as you possibly can, because one day (and soon) you won’t have the time and/or opportunity to spend with them…