Dempsey, out of the blue, states "I miss CHOC."
So, I asked him what he misses.
He said "Well, they had that TV section..."
The Infusionarium? "Yes"
"And how nice they were."
They were really nice to him. They treated him well at OPI.
It makes me happy that he remembers the good things and not the things that caused my PTSD to go off the rails. That is God's faithfulness and provision and the multitude of answered prayers.
Saturday, December 1, 2018
Thursday, November 29, 2018
A Change in the Wind
I don't quite know how to share what has transpired since my last post just 5 days ago. Let me give it a shot.
Dempsey had his monthly infusion/ lab appointment on Monday (11/26). Routine.
The way it works at St. Luke's is vastly different than it works at CHOC. Each visit at SL goes like this:
Check-in, waiting room
Port-in (needle in his chest), waiting room
Vitals, waiting room
Meet with the Dr (ONC) and a nurse
The Dr examined Dempsey and asked all the routine questions. Then he asked if we had any questions or concerns.
That's when Jake and I looked at each other and I stated "I would like to have a serious discussion about dropping the remaining lumbar punctures and steroids." Dr nodded, smiled, and said "Lets talk about that." So, we did. I mentioned how steroid psychosis is real and that I feel it's more damaging to Dempsey as a WHOLE PERSON than the perceived benefit. I went on to mention that I want to drop the 3 remaining lumbar punctures because I'm concerned about continuing to inject cancer-causing drugs into a cancer-free space.
To my surprise, the Dr was completely okay with granting my request. He even went so far as to say "Well, you're the parents... it's ultimately your call." He seemed almost eager to drop the steroid pulses. He feels that element is the weakest link in this phase of treatment because they are forced to forego the steroids with kids who develop osteopenia (or other bone compromising issues) and their treatment outcomes don't differ from those kids who took the steroids. Our ONC is a fan of not doing drugs if we don't have to. He has even conceded that we are probably overmedicating these kids... but we just don't know. He knows childhood cancer treatment is a guessing game and is willing to talk about that. He is well read and versed in the studies that are available and he is well read on the drugs they use.
So, as of Monday, November 26th, Dempsey will not be scheduled for any more lumbar punctures and will not receive any more steroids. THREE LPs and EIGHT rounds of steroids that will not be administered!! Praise God. This is a big deal, folks.
That was Step #1, and it was successful.
Step #2 will probably be getting his monthly infusions of Vincristine dropped. That would mean there would be no need for his port and we could consider getting that foreign body removed from his chest. One step closer.
Maybe Step #3 is ending treatment altogether - removing the remaining two chemo drugs he takes orally and a daily/ weekly basis.
If Step #3 is met, then we would hope to continue with this ONC for all of Dempsey's follow up appointments. I think they go somewhat like this: monthly for six months, quarterly for a year, semi annually for a year, yearly for a few years. We won't hear "cure" until 2024 (5 yrs post EOT, end of treatment).
Please continue to pray for us through this journey. There are so many variables and what ifs wrapped up in it, I cannot even begin to convey the weight of this journey. However, there are victories being had and healing is a day to day choice that requires intention and action. Dempsey's journey continues to impact others and bring cancer warriors to us. I am honored to be the sounding board, listening ear, encourager to warrior mamas who feel this close to losing there ever-loving minds.
This journey is a lonely one. It's isolating. It's scary. It's challenging on levels you can't fathom unless you've walked it. It can be so beautiful as well... but that takes some effort to see most days. The fear is deep and wide and the glimmers of blessing of joy flicker in the darkness for a short time. So, we run fast and hard to that shimmering in the distance and hope we run fast enough to catch it and hold it for even a moment.
WE STILL NEED YOU... in more ways than prayer! We still need monies to support the holistic methods we have employed, with great success, for Dempsey's thrivability. NeoLife continues to be the major element of need as that lays a more solid nutritional foundation for his body that keeps getting challenged by these drugs. doTERRA is the next major element of his holistic care as we do our nightly regimen of oils over his whole precious body. We have people who have chosen to pick one product and supply it each month... this is a wonderful option and I am happy to discuss how you can do that. Others have chosen to give money to us so that we can purchase the supplements and oils we need to maintain his regimens. Whatever money we are given via Venmo, PayPal, or checks - we deposit it all into Dempsey's Health (savings) account. Then, as we place orders and have to pay bills, we take money from the account. It has been a HUGE blessing to have funds readily available. We are still quite far behind, though. Dempsey's at-home protocol costs us about $1,000 per month.
All this to say, when you see Dempsey THRIVING, as he is, this is a direct reflection of the holistic health modalities we have employed for him alongside allopathic/ conventional treatment. When families ask for financial support, it's not because we are stealing from you (although, there are those fraudulent persons out there)... it's because insurance doesn't cover ANY of what we need to help our children survive and thrive through and after treatment. THIS is an atrocity. We are paying for healthcare... we should be able to get the treatment methods we desire covered! Consider this when you vote. Read up on health related propositions. It may not impact you directly, but someone you love needs to be educated, aware, and active.
WE ARE GRATEFUL FOR YOU! We are deeply appreciative of you who have continued on this marathon with us. It doesn't end when his treatment does. We will be walking a version of this journey forever. We hope you will hang with us.
Dempsey had his monthly infusion/ lab appointment on Monday (11/26). Routine.
The way it works at St. Luke's is vastly different than it works at CHOC. Each visit at SL goes like this:
Check-in, waiting room
Port-in (needle in his chest), waiting room
Vitals, waiting room
Meet with the Dr (ONC) and a nurse
The Dr examined Dempsey and asked all the routine questions. Then he asked if we had any questions or concerns.
That's when Jake and I looked at each other and I stated "I would like to have a serious discussion about dropping the remaining lumbar punctures and steroids." Dr nodded, smiled, and said "Lets talk about that." So, we did. I mentioned how steroid psychosis is real and that I feel it's more damaging to Dempsey as a WHOLE PERSON than the perceived benefit. I went on to mention that I want to drop the 3 remaining lumbar punctures because I'm concerned about continuing to inject cancer-causing drugs into a cancer-free space.
To my surprise, the Dr was completely okay with granting my request. He even went so far as to say "Well, you're the parents... it's ultimately your call." He seemed almost eager to drop the steroid pulses. He feels that element is the weakest link in this phase of treatment because they are forced to forego the steroids with kids who develop osteopenia (or other bone compromising issues) and their treatment outcomes don't differ from those kids who took the steroids. Our ONC is a fan of not doing drugs if we don't have to. He has even conceded that we are probably overmedicating these kids... but we just don't know. He knows childhood cancer treatment is a guessing game and is willing to talk about that. He is well read and versed in the studies that are available and he is well read on the drugs they use.
So, as of Monday, November 26th, Dempsey will not be scheduled for any more lumbar punctures and will not receive any more steroids. THREE LPs and EIGHT rounds of steroids that will not be administered!! Praise God. This is a big deal, folks.
That was Step #1, and it was successful.
Step #2 will probably be getting his monthly infusions of Vincristine dropped. That would mean there would be no need for his port and we could consider getting that foreign body removed from his chest. One step closer.
Maybe Step #3 is ending treatment altogether - removing the remaining two chemo drugs he takes orally and a daily/ weekly basis.
If Step #3 is met, then we would hope to continue with this ONC for all of Dempsey's follow up appointments. I think they go somewhat like this: monthly for six months, quarterly for a year, semi annually for a year, yearly for a few years. We won't hear "cure" until 2024 (5 yrs post EOT, end of treatment).
Please continue to pray for us through this journey. There are so many variables and what ifs wrapped up in it, I cannot even begin to convey the weight of this journey. However, there are victories being had and healing is a day to day choice that requires intention and action. Dempsey's journey continues to impact others and bring cancer warriors to us. I am honored to be the sounding board, listening ear, encourager to warrior mamas who feel this close to losing there ever-loving minds.
This journey is a lonely one. It's isolating. It's scary. It's challenging on levels you can't fathom unless you've walked it. It can be so beautiful as well... but that takes some effort to see most days. The fear is deep and wide and the glimmers of blessing of joy flicker in the darkness for a short time. So, we run fast and hard to that shimmering in the distance and hope we run fast enough to catch it and hold it for even a moment.
WE STILL NEED YOU... in more ways than prayer! We still need monies to support the holistic methods we have employed, with great success, for Dempsey's thrivability. NeoLife continues to be the major element of need as that lays a more solid nutritional foundation for his body that keeps getting challenged by these drugs. doTERRA is the next major element of his holistic care as we do our nightly regimen of oils over his whole precious body. We have people who have chosen to pick one product and supply it each month... this is a wonderful option and I am happy to discuss how you can do that. Others have chosen to give money to us so that we can purchase the supplements and oils we need to maintain his regimens. Whatever money we are given via Venmo, PayPal, or checks - we deposit it all into Dempsey's Health (savings) account. Then, as we place orders and have to pay bills, we take money from the account. It has been a HUGE blessing to have funds readily available. We are still quite far behind, though. Dempsey's at-home protocol costs us about $1,000 per month.
All this to say, when you see Dempsey THRIVING, as he is, this is a direct reflection of the holistic health modalities we have employed for him alongside allopathic/ conventional treatment. When families ask for financial support, it's not because we are stealing from you (although, there are those fraudulent persons out there)... it's because insurance doesn't cover ANY of what we need to help our children survive and thrive through and after treatment. THIS is an atrocity. We are paying for healthcare... we should be able to get the treatment methods we desire covered! Consider this when you vote. Read up on health related propositions. It may not impact you directly, but someone you love needs to be educated, aware, and active.
WE ARE GRATEFUL FOR YOU! We are deeply appreciative of you who have continued on this marathon with us. It doesn't end when his treatment does. We will be walking a version of this journey forever. We hope you will hang with us.
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