This Wednesday we travel to UVA for measurements and a new engineered bone flap will be constructed.  It takes about 2-3 weeks so the implant surgery for James' new bone flap is December 4th.  We are so excited - James hates wearing the protective helmet and the flap is sinking.  A LOT.  

James has been experiencing a great deal of "sunken flap syndrome" where the brain is compressed from exterior pressure without the skull/bone flap to mitigate pressure changes.  He is having major vision changes, nausea, headaches and abdominal pain.  His gait is affected and he can't talk as well as he did after the recent surgery.

The good news is that the infection is absolutely cleared and once this flap is implanted on the 4th, we have every expectation that James will recover his vision, talking and walking without pain within days!  The countdown begins....

We had an abdominal scan recently and it showed very promising results.  After the first histotripsy procedure in May, three full lesions were completely killed.  A fourth was partially killed.  He had 8 and a half lesions remaining.  4 of them were in an area difficult to reach and might not be treatable until the histotripsy technology improved, which is rapidly happening.

Jeff Bezos recently invested millions into Histosonics because this technology is such a game changer.  Soon open surgery could be a thing of the past which is great, life saving.  Surgery dramatically increases the risk of cancer spread and growth.  Like for us.  The Whipple took out the one contained lesion in his bile duct but two months later, cancer was in his liver when it wasn't before surgery.

So these lesions have all responded to the first histotripsy procedure.  They are down to five lesions now which means four disappeared despite not doing chemo since July.  This is absolutely an abscopal effect meaning Keytruda is helping his body identify the cancer and kill it!  We are thrilled!

However, the biggest lesion next to the pancreas that we only killed half of it is still present.  It's not bigger.  It hasn't spread.  But it's the threat that could keep James from being cured.  We have to go in and kill the rest of it.  It's large enough and in such a difficult spot that one procedure will be spent just for that.  Then we have to go in later and kill three more with a third and hopefully final histotripsy procedure. We are praying the remaining lesion will continue to shrink and disappear in the abscopal effect.  At the very least, we know it isn't growing now in the absence of chemo and there has been no spread.  A stable, progression free disease is as good as a cure and who knows what may happen?  It might disappear on its own or histotripsy improves and can finally kill it too. 

So, the hospital is charging less than the initial $50k for the first one we paid to have done.  But it is still astronomical.  We have to pay $35k for the second one and then another $35k for the final one.  It sickens me that hospitals charge so much for sick people to have a chance to live but these aren't the rules I make, I'm only forced to follow them if I want to keep my husband alive.

We sent a little over $27k raised on this site to the hospital for the second procedure.  I need to raise the final amount plus plane tickets to fly from Virginia to California.  We are hoping to do this as soon as Christmas time or early January since James can fly once the bone flap is implanted.  We don't want to delay as time is still of the essence. 

We are fighting insurance with all we have.  An early sign of cancer before it is actually visible is blood clots.  In 2021, James had a massive stroke in his MCA.  Because James is permanently disabled from his stroke, he has Medicaid coverage through a disability waiver.  The state of Virginia allows two private insurance companies to use Medicaid dollars to administer medical care to Virginia residents.  Sentara Health is the one we chose for his care.  Medicaid does not cover Category 3 procedures unless Sentara has a policy enacted to do so.  That is the reason Sentara Health has deemed the procedure as non coverable and forced us to pay out of pocket through fundraising.

I fought the insurance denial because Sentara did exercise their right to set policy for Category 3 procedures.  In Medical 336 handbook, Sentara lays out four criteria that will allow coverage of this procedure.  Histotripsy qualifies for one of the criteria meaning Sentara must cover it.  They know if they cover for us, they must cover for all the state and Sentara has forced us to appeal their denial all the way to the state hearing level.  We expect a decision from the hearing officer December 3 but it doesn't look promising.  I was only allowed to submit arguments based in the Virginia Code of Law which specifically prohibits coverage by Medicaid.  It's the clause that they delegate how Sentara handles it that wins the case for us and that isn't in the Code in specific language.  It's a loophole that Sentara is using to kill cancer patients. 

Please pray for us to win this appeal so James can have these procedures covered going forward.  Our family, friends, neighbors and complete strangers have helped propel us to California but times are economically hard for all of us.  We realize the donations will eventually stop.  We need insurance to do the right thing.

Please pray for us as we get ready for James' surgery.  We are so exhausted from fighting insurance, the numerous doctors visits and drives to Charlottesville and trying to keep James healthy and comfortable.  This poor guy is so miserable and in so much discomfort, even pain on most days.  He often throws up his food and has lost 28 pounds so far, not ideal for fighting cancer. 

We are so close and we thank God for His carrying us through these past four years.  We are tired but have so much hope for the future.  Thank you all for giving us that hope and fighting with us! 

James had his bone flap removed in August due to an infectious biofilm on it.  We were so disappointed that this step was needed.  In addition, he had all of the remaining catheter material removed from his back and abdomen.  Absolutely nothing was left in place.  THIS seems to have been our miracle - Infectious Disease thinks, based on his history, that the catheters were retaining bacteria and sending it through the spinal canal to his brain. 

Now that everything was removed, we did I.V. antibiotics three times a day for three hours at a time the past six weeks.  What an ordeal BUT wow!.....James is a new person.  He is so much more alert and interacting, something we haven't seen from him in years!  I had forgotton how much James had recovered from his stroke until now.  He is so much like his old self and it has brought all of us so much joy.

We return to UVA next week for imaging to see if the infection is completely cleared in his abdomen, back and head.  If so, neuro will take measurements of his head and order a custom bone flap which will take about two weeks.  At that point, we will have it surgically implanted and, fingers crossed, we will never have to think about this again! 

With all of the steroids given after surgery and each chemo infusions, James has developed a sudden onset of cataracts in both eyes.  He isn't seeing that well so we haven't been able to start therapy yet.  He can't see our faces, flashcards or even walk safely.  That's a disappointment as the cataract removal cannot be done until his bone flap is implanted.  We're looking at December, maybe January until James is completely restored.

We have suspended chemo since July 9th to give James' body the ability to recover.  He is slightly anemic and we're hoping he will improve during this break from treatment.   That would give him so much more energy.  When he resumes treatment, we will do a pet scan to see where he is with the liver lesions and whether we will resume chemo or go straight to histotripsy.

Two weeks ago, we had a hearing with the state of Virginia to appeal insurance's denial of histotripsy.  They are refusing to cover it despite their own policy having a clause that allows coverage.  December we will receive the hearing officer's decision.  I'm debating if I should appeal a negative decision to the Circuit Court or sue the insurance company in civil court.

We could use prayer for wisdom in these decisions, prayer for continued healing of James' cancer and prayer for his continued remission from infection.  We are praying for the hearing officer to sway his decision in our favor and force insurance to cover future histotripsy procedures.  We are in need of prayer ourselves.  This entire ordeal has wiped us out and we are emotionally, physically and mentally spent.  We still have so much to do and could use prayers for strength. 

Thank you all for your love, prayer and support.  We would be lost without you! 

James started leaking at his incision site. He has been admitted to UVA only two days after leaving. We are waiting for an available OR for emergency surgery.  
This greatly affects our procedure with Dr Burns. I’m devastated that James cannot have histotripsy this weekend. 
The hospital has the donated money we’ve been able to raise so we can easily reschedule this procedure as soon as this current situation is resolved.  
I don’t understand what God’s plans are for James but I still trust Him. Please pray for the surgeons working on James- for skill and wisdom, for answers and complete healing.