Caren's Medical Treatment

$40,420 of $60k goal

Raised by 352 people in 24 months
James Dandreo  MIDDLETOWN, NJ
As many of you know, my wife, Caren Dandreo has been going through some very difficult times over the past 3 years, which have been filled with sickness and tragedy. Caren has suffered from a persistent bacterial infection in her brain, a rare pain disorder which is known to be the most painful chronic condition that exists, has developed epilepsy, lost her job, grieved the death of a dear friend, and lost her beloved father due to terminal brain cancer. Despite all of this, we’ve grown closer as a couple, which I’m so thankful for because so many relationships fall apart during such tumultuous times.

Before getting ill, Caren worked as a pediatric therapist treating children with various developmental disabilities, but her true passion was working with children on the autism spectrum. She had a remarkable gift as a therapist, and was able to reach children whom others couldn’t. She left a lasting impression on both the children and their families. It became clear to me that Caren’s happiness was often measured by her ability to influence the happiness, confidence, success, and independence of the children she served.

In March 2012, Caren was diagnosed with advanced late stage neurological Lyme disease, Babesia, and Bartonella.  This occurred following the sudden death of a dear friend, and after learning of her father’s terminal cancer diagnosis. Her decline was rapid and harrowing, and as a result, she lost her ability to work. She was challenged with extreme cognitive impairments, including prominent memory loss, had difficulty walking, debilitating arthritis, slurred speech, visual disturbances, and tremors.  Often, she was bedridden and was so sensitive to sound, touch, and light that she was unable tolerate a simple conversation, a sheet on her body, or be in a room without the blinds drawn.  She also developed epilepsy with seizures so severe that she would end up in the ICU, and on two occasions nearly lost her life.  Next came another devastating blow - she developed centralized Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy), which spread throughout her body. Finally, after months of suffering, it seemed her only option was a highly specialized celiac ganglion nerve block, typically used for patients dying of pancreatic cancer, to help control her intractable nerve pain. For maintenance of her pain she has to continue with ketamine infusions twice per month. In short, this once vibrant, amazing woman has spent months in 5 different hospitals over the last 3 years, has endured over a year of intensive IV therapy, undergone multiple surgeries, and has gone through periods where she was completely dependent on me for every aspect of her life. In essence, she had totally lost her independence – at only 34 years of age.

During these 3 years in which my wife has been sick, we have spent over $90,000 out of pocket on her care.  We recently went to see a renowned Infectious Disease Doctor who specializes in my wife’s condition, and he recommended that she resume intense antibiotic therapy. He believes, based on decades of experience, that with this additional treatment he can bring my wife back to enjoying a fulfilling life with family and friends instead of simply surviving. My wife desperately needs this treatment, but between this and her ongoing ketamine infusions the costs are over $5,000 per month, none of which is covered by insurance. We have extended our finances, credit, and savings - spending everything we have to try to help my wife get better, but we are out of resources. 

I am doing everything I can to take care of her, provide for her, and ensure her well being. At this time I’m no longer able to do this on my own. As uncomfortable as I am asking, we need help.

The world desperately needs this amazing, gifted, special woman I am privileged to call my wife. She has a unique ability to help those who need it most, but this illness is keeping her from doing so. Now she is the one who needs help, so she can get back out into the world and do what she was put on this planet to do. So, if you could find it in your heart to contribute to her care, it would mean more than words can express. Hopefully, with your kindness and donations, my wife will be able to get back to helping those that need her the most. Be assured that 100% of all contributions received will go directly to the care of my beautiful wife, Caren.

I am blessed to be sharing my life with Caren and I am blessed with your consideration.

Thank you.




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Update 25
Posted by James Dandreo
5 months ago
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I'm happy to let everyone know that Caren will be having her central line removed on Tuesday at George Washington University Hospital in Washington DC! She has been doing really well recently; she is off all of her anti-convulsants, all of her interstitial cystitis medicine, almost all of her pain medicine, and has been able to eat anything she wants. She has gained 15 pounds in the last month! Thank you for all of your support throughout this lengthy, difficult journey.
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Update 24
Posted by James Dandreo
7 months ago
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As some of you know, Caren and I travelled to North Carolina last week to meet with Dr Kapural at the Carolinas Pain Institute. The director of pain management at Memorial Sloan Kettering referred us to him as he is considered to be one of the world's leading physicians in dealing with intractable abdominal pain. After reviewing Caren's complex medical history, he believes that for long-term pain relief, she should consider a spinal cord stimulator. However, due to the fact that she is treating an active infection, he wants to postpone that until after her treatment ends (putting in a spinal cord stimulator involves opening up the patient and implanting a battery pack under the skin, running wires up the spinal column, and placing leads on the ‘problem’ nerves).

In the meantime, he has agreed to do a radio-frequency ablation of her splanchnic nerve, the nerve that feeds into the celiac plexus. We will have to travel to N.C. again for a diagnostic block in the next couple of weeks, where he will inject a local anesthetic into the nerve. As long as this provides her with significant pain relief, we will travel back to N.C. a second time and he will use radio-frequency waves to "kill" the nerve. Each of these procedures is a multi-day event because one of the risks associated with this block is a collapsed lung. Since the nerve has to be accessed bilaterally, they do each side on a separate day so that there is no chance of both lungs collapsing. In doing 1100 splanchnic blocks, he has had 4 instances where a patient’s lung has collapsed, all in older patients or people with underlying lung issues. So, he doesn't believe that it's a concern for Caren. Our hope is that the splanchnic block is as far as we have to go; that during the year or more of pain relief it provides, her treatment will wrap up, her nervous system will begin to heal, the pain won't return, and we can move on with our lives.

I have been saying for at least a year that if Caren's abdominal pain can be managed that she will be in a much better place, and I believe that we have finally found the doctor who can get that pain under control. In the coming months, Caren's IV therapy will be coming to an end and we will be scheduling the removal of her central line at George Washington University Hospital in DC.

Now, in addition to the ongoing expense of Caren's regular treatments, we have the added cost of traveling back and forth to N.C. at least twice in the coming weeks. Any further donations that you could find in your heart to contribute would be extremely meaningful to us at this time as we push forward with Caren's treatment.

Thank you again for your consideration and support of my wife, Caren. If it weren't for your help, I'm not sure where the two of us would be today.
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Update 23
Posted by James Dandreo
7 months ago
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Caren and I went down to Washington last week to see her doctor, overall he was pleased with how she's doing. Obviously her weight is an issue, and we are trying to add more foods to her diet and increase her caloric intake. For the next month we are going to continue with the medicines that she's doing, get a booster infusions of ketamine and lidocaine, try to get down to North Carolina to see the interventional specialist in abdominal pain, and try to increase Caren's weight. After that, we may do another round of IV medications. Fairly soon the central line will have to be removed as its life expectancy is approaching, so we are making sure that we use it to keep Caren well hydrated. Her doctor wants us to continue to monitor her vital signs, and add a few different daily checks to what we're doing. Caren and I were just talking over the weekend about how long it has been since she has had a seizure or a pain attack, which is very encouraging. No matter how far she still has to go, when we stop and reflect on where she was when this ordeal started, she has come a long way. Hopefully as we continue along this journey, Caren will continue to improve.
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Update 22
Posted by James Dandreo
8 months ago
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After a week in Hahnemann hospital in Philadelphia, Caren was discharged and her abdominal pain was much better controlled. They told her that she could expect somewhere between 1 and 12 weeks of relief, but everyone is different. Over the last week and a half that we've been home, she's been struggling to get back on track with her medications and her diet, because everything was changed so much in the hospital. But, since we don't know how long she will get sustained pain relief (it is already climbing back up) Caren and I went to Sloan Kettering on Friday to see the director of pain management. We wanted to ask him if he would remove Caren's celiac plexus since her pain doctor thinks this is ultimately what she needs. Unfortunately, neither him nor anyone at MSKCC can help Caren. They do celiac plexus resections, but only alongside the removal of a pancreas. However, he does want to help her so he reached out to the head surgeon of MSKCC and is going to try to get us the name of a general surgeon who will do the procedure. If he can't find a surgeon for us then he is going to call a colleague of his at Wake Forest who specializes in intractable abdominal pain. He said we would not be able to see him on our own, but if he calls and asks him to take us on as a case, he would do it. So, by the middle of next week we should know what we're doing; surgery or 'something else' in North Carolina, whatever that may be. The doctor in N.C. doesn't do resections, but he does advanced neurolysis techniques, and he specializes in using spinal stimulators to resolve intractable pain in the abdomen. Caren and I really trust the doctor at MSKCC, and if the doctor in North Carolina is who he goes to for advice with intractable abdominal pain, then we would be really comfortable going there.
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Read a Previous Update
Angela Rich
17 months ago
2
2

God Bless and so sorry you are going through this. My son continues Lyme treatment at this time and has the chronic pain component. I pray this will work quickly for Caren

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Tina Regina
8 months ago
1
1

My prayers are always with you both. I pray every night for her to get well quickly. I asked God for her miracle. To get well!

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$40,420 of $60k goal

Raised by 352 people in 24 months
Created March 29, 2015
$500
Anonymous
4 months ago
$25
Lisa Alverson
6 months ago
MW
$100
Michele&Pat Walsh
6 months ago

I pray for you and your family. Miracles happen everyday my beautiful Caren. Sending healing energy your way.

$250
Anonymous
7 months ago
LW
$100
Lynn Walsh
7 months ago
$300
Anonymous
7 months ago(Offline Donation)
$500
Anonymous
7 months ago
$25
Cristobal Aleman
7 months ago
TM
$50
Tiffany Molina
7 months ago
JM
$100
Joy Muratsuchi
7 months ago
Angela Rich
17 months ago
2
2

God Bless and so sorry you are going through this. My son continues Lyme treatment at this time and has the chronic pain component. I pray this will work quickly for Caren

+ Read More
Tina Regina
8 months ago
1
1

My prayers are always with you both. I pray every night for her to get well quickly. I asked God for her miracle. To get well!

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