Help Save Maria Artime's Life
First and foremost, your love, support, prayers, and well wishes have been overwhelming the past few months. It's difficult for us to ask for any more from you. Please know how much we appreciate every kind word, prayer, and amount of love sent our way.
Many of you know from Mari's blog that she was first diagnosed with a tumor of the head and neck (and thought to be benign) in November of 2010. She began radiation in January 2011. The tumor responded well to the radiation. However, June of 2011 she had to begin a second round of radiation (much to her frustration). The tumor had continued to grow down her neck in the area that was not undergoing radiation. She was in a lot of pain and discomfort, however she kept on fighting.
At the end of July of 2011, Maria contracted a truly terrible disease. She was diagnosed with Herpes Simplex Encephalitis, which is basically that this virus (HSE) traveled to her brain and caused swelling of the brain. Maria was in the hospital for two months. In August she was quickly deteriorating. She was unresponsive, unable to feed herself (had a feeding tube inserted), stand, or follow any basic commands i.e. move your hands, feet, etc. She left the hospital weighing 89 pounds in a wheel chair. It was a very frightening time. One of the most difficult parts for me was that she was unable to attend our wedding in September. However, again she continued to fight. She slowly started to write, speak, stand, etc. With time and physical therapy she began to communicate, feed herself, and relearn all of the basic human functions.
Even though she has progressed immensely, it is clear that because of the HSE, she has suffered severe brain damage. Maria talks, prays, laughs, etc but she is very different than the Maria we used to know. She has suffered serious memory loss, especially short- term memory loss. She is a new person. The good news is her beautiful spirit is still intact and she has a lot of love for her friends and family. We will not know the full damage the HSE had on her brain for at least 2 years. As of now, she is still in recovery and is unable to care for herself. Maria needs 24 hour around the clock care, which you can only imagine how overwhelming it has been for my parents.
The HSE was a huge shock to our family. Even though Maria had the tumor, she was fully in control of her medical decisions, treatments, etc (as you could tell in her blog). My dad had to become her medical proxy and from then forward, make all decisions for her (as she is not mentally capable).
As if that was not enough to deal with, we had to refocus on the tumor. She had a pet scan in November of 2011 and within weeks we found out she had tumors in her lungs. We were shocked. Although the exact diagnosis is still unknown, we were surprised, dumbfounded, astounded, to see that tumors started growing in her lungs. The tumors in her lungs are metastasis of a carcinoma of an unknown primary.
She began chemotherapy in January 2012. The chemo had a 50% chance of working i.e. shrinking the tumors in her lungs. She lost all of her hair, but did not have many other side effects, which was a relief.
In February 2012 we did another pet scan and it showed no change. The largest tumor in her right lung remained at 5cm. We were disappointed that there was no shrinkage, but relieved that they were not growing.
May 2012, we got the results of yet another pet scan. The tumors had doubled in size, the largest tumor now at 10cm.
So where are we now? The truth is we are running out of time. The doctors in Miami are unable to provide us with any more options. Sadly, they have given up on Maria. They do not have anything else to offer us.
Therefore, we need to seek consultation, treatment, etc from other doctors- the best doctors in the country. We need a second opinion. We need more treatment options. Unfortunately, we have had a lot of difficulty with her insurance. Honestly, we are unable to afford the best treatment centers in the country.
We have come to you for your help. ANY little bit would help us. We wouldn't be asking if it weren't a matter of life or death.
The best cancer facility in the country is in Texas, however treatment costs over $20,000 (not including flights, living accommodations, etc).
As a family, we are willing to do anything and everything we could to save Maria's life. However, we can't hide away from the truth- we are absolutely running out of time. If we don't find another type of treatment, the tumors will continue to grow. And as indicated from February to May- they are extremely fast growing.
We are also exploring alternative methods of treatment, which again is very costly.
We really really appreciate you helping us. Words can not express how much this has changed our entire family. As I type this, it still feels incredibly surreal. All we know is that as a family, we can not lose Maria- our sister, daughter, granddaughter, aunt, fiance, niece, godmother, friend. We are prepared to do everything to keep her with us for as long as possible. And again, time is running out.
Thank you for taking time to visit this page and read this long explanation.
The Artime family thanks you with their whole heart. And you could bet, Maria will be praying for you (as she always is)!
Viewing (beginning at 6PM):
8215 Bird Road
Miami, FL 33155
Mass: Friday morning, August 17 (her birthday), at St. Brendan (more information later).
Many people have been asking for an update but I haven't had the strength to write it. My mom does a better job of updating her Facebook friends, but I figure many of you don't see it.
Most doctors have given up on Maria. It's been very frustrating for us as we feel she is still able to fight. However, she IS very, very, very sick right now. Currently, she's at Jackson Memorial Hospital, and too weak to be moved elsewhere.
She spends most of the day sleeping. She is unable to speak, however we all feel she is aware of what is going on. They had to insert a feeding tube again.
The scariest thing occurring is she is having crises every few hours where her oxygen level drops dramatically. The tumors in her lungs are causing serious respiratory problems. Two days ago the doctors called a "code blue" but thankfully were able to stabilize her.
We understand how negative everything sounds, but no one in my family is willing to sit back and stop fighting. Desperate to get a doctor's attention, my dad wrote the following letter to a pulmonologist, Dr. Donna. It explains the situation better than I can.
Good afternoon, Dr. Donna,
We would like to consult you regarding our daughter Maria. She has been seen by your interns here at JMH (S726) but we would like if possible to get your expert opinion. We brought her to the ER on July 30th in respiratory distress. The X-Ray showed an amorphous white shadow in her right lung that was interpreted at the time as possible aspiration pneumonia. She has been treated with antibiotics and respiratory therapy. After some initial improvement, she has remained stable but has not recovered. Approximately once a day the phlegm obstructs the airways and she has a respiratory crisis. She recovers quickly when suctioned (labored breathing subsides, oxygen saturation goes back to 100%, etc.).
Now the pulmonology team has discontinued the antibiotics. Noting that her temperature and white blood cell count have remained normal throughout her time at the hospital (never had fever) they have abandoned the initial diagnosis of possible aspiration pneumonia in favor of respiratory issues caused by tumor secretion. This makes a lot of sense. When Maria had a right lung pulmonary lobectomy a couple of months ago, the surgeon was surprised to find an over-abundance of what he described as a yellowish substance. He suctioned it all out, but he shared with us that he was surprised to find the unexpected liquid and he did not know what it was. It now seems that the secretion is back and it is seriously affecting the respiratory system.
The pulmonology team considers Maria a terminal patient who is highly unlikely to recover from her present condition. The expectation is that the respiratory system will continue to deteriorate until her eventual demise. They think there is nothing else to do but to keep her comfortable.
I, on the other hand, despite my discouragement, pain, fear, and understanding of the gravity of her condition, choose to continue fighting. Not only because in human history there is an abundance of lost causes turned into unexpected triumphs, but because my daughter asked me to always do all I could, including the highly unlikely to succeed, to save her life. She said, even if there is 1% chance that it will work, she wants to take the chance.
The pathology of the tissue obtained in the lobectomy (13 cm) has yield new possible diagnosis and treatment. We need more time. The left lung has only minor lesions. The right lung has become imminently life threatening. We are considering a full resection of her right lung. However, before we proceed, we would like your opinion as if there is some other procedures that could possibly improve her condition and preserve her right lung (i.e., bronchoscopic suctioning, a lung drain tube, lung surgery, etc.). Even if you have heard of procedures that are done elsewhere (other hospitals, other countries, etc.) we'll appreciate you letting us know.
Thank you, Dr. Donna for all your help. We continue to pray, full of trust in God and holding on to hope. We anxiously await your response.
As always, thank you for your prayers during this very difficult time for our family. We continue to feel very grateful for all of you who have touched our lives.
It took me a while to write because I needed to process what took place in NY...I needed to sit with it for a while...We went uncertain what to expect....but certain that we had to go....I was nervous about how Mari would do on the trip but she did really well (especially since Delta updated us to first class when I explained to the agent at the counter why we were traveling to NY). We arrived early on Sunday morning in Manhattan...After dropping our luggage at the hotel we went straight to buy same day Broadway tickets near Times Square (clear priorities) and were very lucky to land third row seats for the 3 o'clock show that Mari really wanted to see, Jesus Christ Superstar. Once we secured the tickets we went to noon mass at St. Patrick's Cathedral. After that we had pizza for lunch and saw a wonderful show. Mari really enjoyed it! She did quite a bit of walking that day and seemed fine however at night she coughed almost all night. We tried several remedies for the cough but nothing was working.
Monday morning we woke up, had breakfast at the hotel, and then went to Sloane Kettering where vitals were taken and we soon met with Dr. Stephen Veach. Dr. Veach presented as a kind and caring man. He was warm and kind with Mari and with us. After he fully examined Mari he stood next to her as she sat on the examining table and he put his arm around her and she put her head on his shoulder. A natural and paternal gesture that he allowed and received comfortably.
After reviewing volumes of reports and looking at films and scans he seemed very well versed in her case and this is what he told us: He believes Maria will benefit from radiation to the middle of the chest. This is something that had never been discussed. He showed us how on the latest petscan report and the bronchioscope report from December there are lymph nodes pressing against the breathing tubes. He feels it is critical to resolve this in order to treat the progression of the cough which is the symptom that is most troubling at the moment. He says that the next step would be to consider chemo with radiation. He believes that what is happening in Maria's body (skull, neck, lungs, chest) is all the same disease and we already have evidence that this disease responds well to radiation (skull and neck experience.)
He told us that the tissue from her lungs had been looked at by Sloane Ketteirng Pathology and had yielded no new information. Most of what we know is what the tumors are not. It has ruled out a lot of cancers but has not pinpointed what it is. He also believes it is not important at this moment to determine primary tumor as it will not assist in treatment.
Then he bottom lined it for us.....He told us we had basically three options: 1) Do nothing and that based on the progression from December until now if nothing reverses we had only a few months until she went into respiratory distress, possible pneumonia and that she would not survive. 2) Radiation is an option although it would not be curative but palliative (only buy us some time). It could potentially increase quality of life and buy time as there is evidence that this type of tumor responded well to radiation and contrary to what we thought the biggest problem at the moment is not the large mass in her right lung but the smaller nodes that are pressing on her breathing tubes. 3) Chemotherapy once we get results from CARIS which is where we sent the most recent biopsy. In laymens terms CARIS is an unconventional place that works to better determine or match the right medicine for the right tumor.
He believes the chemo should always be considered together with radiation. He disagrees that VP16 (as recommended by Miami Oncologist) is an adequate choice. Again he says that if we treat with chemo and radiation after CARIS results we might increase effectiveness of treatment from 10% to 30% or 40% chance of effectiveness. Dr. Veach agreed to speak to Dr. Markoe (alias Dr. Teddy Bear from Maria's grace, joy and healing blog) within 24 hours and to forward a report to several of the doctors on her team and to us within a week.
Today I spoke to Doctor Markoe and he said that Dr. Veach's recommendation to treat with radiation to alleviate cough is a good plan and one he would be willing to implement. Maria will have to have another bronchoscopy and a CT scan and then a catheter with a radioactive material would be placed through her nose into her bronchials for five minutes once a week for three weeks and that this treatment would be of little or no risk. He thinks that it will definitely relieve tumor pressure on trachea or bronchials.
He also told me he knows Dr. Raez (our second opinion guy from Broward ) well and that he thinks that he is someone we should continue to keep in the loop. Right now we are waiting to see if CARIS yields eligibility for any effective chemo treatment. If so he believes that whatever drug it is we should try it.
Meanwhile Dr. Markoe does not want to start anything until we have a date for MD Anderson. I expect to secure that date by tomorrow or Friday at the latest since the tissue sample should be in the hands of their pathologist by tomorrow. I have to call Dr. Markoe on Friday and update him on status of MD Anderson and Caris and at that time we will decide whether to start treatment. He said that it could be that all of this will be done in Houston so he does not want to start until we have further direction from them.
Ok there it is. The update. It was hard to write but I am glad I did.
The thoughts, prayers, facebook comments, emails, and generosity of so many are sustaining our family in ways that can not be imagined. We are eternally grateful for love that we did not know could be possible. Mari is as always in good spirits and very present to the grace, joy and healing that the Lord is working in her life on a daily basis.
Update on Mari: she had a fabulous day in NYC. Tomorrow we see Dr. Veach, unknown primary specialist at Sloane Kettering. From the local front: last week we saw Dr. Raez at Memorial for a follow up. The new biopsy yielded no new information initially but further studies are being conducted on the tissue. Dr. Raez also referred us to a surgeon at Baptist that may be willing to remove the largest mass in the right lung which is about 11 cm. This would only buy us more time. We have an appointment with the surgeon on June 12 to explore this possibility. We have started Mari on turmeric and have increased dosages of scorpion venom, guanabana, coQ 10 and x factor.
Thank you for all of the continuous prayers and support. This appointment at NY wouldn't have been possible without your help. We'll continue to keep you updated as new information comes available. All our love.
I hope the best for you!! I just lost my uncle to Burkitts Lymphoma and now I'm losing my battle to Primary Progressive Multiple Sclerosis. God Bless You and keep Your Faith, Chris
We continue to pray for her, even though we have not met her. We know her from a Facebook post that I read several months ago. With God all is possible and He is able to turn all that is bad to good. The suffering of Maria and your family is beyond my understanding. Regardless I will trust that God is working for Maria and all of you and all of us who pray for her and the entire family. May He forgive all of my sins and hear my prayers for Maria. God bless her and all of you who are close to her.
We Sent You Email - Please Check There - Very Important Info for You to Get Well -
gofundme.com/ql6ro i really need help and dont know where to turn to
My daily prayers include Maria. All the best. God bless.
Hello from Mike McQuown's mom. When in NYC , contact Dr. Jeffrey Morrison 103 Fifth Ave. 212-989-9828. He would probably do the baking-soda IVs. Good luck and God bless Maria.
Hello everyone, For pathology please check out The Joint Pathology Center. The JPC provides world class diagnostic subspecialty pathology consultation, education and research services to federal agencies and operates the National Pathology Tissue Repository in support of the mission of the Department of Defense and other federal agencies. It says they don't accept civilian tissue for consultation, but they do accept consults from eye, dermatology and neurologic pathologists. Worth a shot. http://www.jpc.capmed.mil/contact.asp God Bless and illuminate you all.
Today I will lift Maria up in prayers. I will pray for this wonderful family and the beautiful daughter that they need to be healed. May God hear all our prayers and heal Maria. May her doctors have the wisdom needed to find the answers and cure her. May she find love and support among all of her care-givers.
God Bless your family, your courage, your strength to be with maria during this painful time! I will pray for your family in hope that our Lord will deliver her from all her pain and suffering. God is known to make beauty from ashes and with all our faith and hope, He sure will from this too. xoxo
SO many people that love Mari and are anxious to help! We are touched, moved and inspired by each and everyone of you! To all of Mari's friends, classmates, co-workers, to all of my former students, to all of the kids my kids grew up with that now have kids of their own, to all of the baseball and BMX moms and dads, to all of my husband's co-workers and my co-workers who support me everyday, to all of the familia, to my CEA family where I go for therapy everyday, to all of the Sabres, Cyclones, Spartans and Cougars, to all of the parents who parented with us through five kids, to all of the teachers I have worked with through the years, to the Church of Miami and Cuba and to all of the people I do not even know but who have responded to our story with their prayers and generosity we thank you and pray for you and are forever grateful! We feel the love!
Michi, I am proud to say that the majority of people I have shared this site with (my closest friends) have been touched by Mari's story & the impact it has had on you guys as a family. They have been more than willing to contribute to the cause. You know you guys are my family & I will continue to find ways to help out in any way I can. Mari is truly someone we can all look up to & you guys are one of a kind. I love you Artimes!
My thoughts and prayers go out the the Artime family, who have always been great friends and supporters of mine. As a proud Relay for Life Vice President I have the highest Faith that we can all help to make sure that our family and friends never have to suffer! Maria is an inspiration to us all!
have a search engine for orgs that may provide financial assistance & supportive services for you and the family: http://supportorgs.cancer.gov/home.aspx?js=1 Since you are saying you feel like you are running out of time, it could be time to broach the topic of end of life care. A good friend of mine had very good lovely experience in hospice when there was nothing else left and we were really amazed at the care she received. You can go in and out of hospice if new options come up. If anything ask her what she wants. http://cancer.gov/cancertopics/factsheet/Support/hospice I know this is a lot of info, hopefully this will shed the light on a few things. If you need any other info, or have questions, write me on FB. God Bless.
Hello everyone, I'm a relative of a dear friend of Maria's. It must be so difficult right now for all of you. I'm not sure if the doctors have mentioned clinical trials, especially since it's a CUP. Look into the National Institutes of Health You can do a clinical trial search from the National Cancer Institute website here: http://cancer.gov/clinicaltrials/search There is a facility in Bethesda, MD that is the NIH Clinical Center. They focus on the more difficult situations/ diseases; not just cancer: http://cancer.gov/cancertopics/factsheet/NCI/clinical-center There are several very good cancer centers, not just in Texas, but all over the country. Try to go to one that is affiliated with a major university since the research dollars are mostly to universities: http://cancer.gov/researchandfunding/extramural/cancercenters I used to be a supervisor at the NCI Cancer Info Service, they are still available to chat on the cancer.gov website or you can call them at 1800-4CANCER. They
My dear Michi (China) I have always loved you in a special way since you were a little girl, but right now, I cannot put into words how proud I am of you....I am so very touched by Mari's story written by you and for your plead for help....I love Mari also very much, as I have known her since she was a little girl and had a special connection with her as an adult...she is beyond a special young woman and so a part of my heart has been broken to see her and you all go through this nightmare...I want you to count on me for a donation, of course, but let's think a little bigger....I want to organize a "zumbathon fundraiser for Mari" plz call me so we can disucss the details...All my love to you baby, Gop bless you,