Rally for Romez Round 2
Donation protected
Rally for Romez Round 2
We all know someone whose been affected by cancer, and we know the possible outcome of it.
It's heartbreaking for our 28 year old friend to be going through this again. A guy who has been there for so many of us during hard times, our friend who supports us until the bitter end, helps put us on the right path at all times, needs our help. It's time to give back, please read.
Unfortunately, Romez is being treated for cancer for the second time in less than two years. In addition to the disease coming back in his lymphatic system, it is also presenting as leukemia – cancer of the blood.
Please help our friends Romez & Jen out by simply donating any amount to help pay towards medical bills , groceries and whatever else they require at this time.
Thank you for your support, it is greatly appreciated. Feel free to share this post so we can spread the word.
PLEASE SHARE & take a moment to read his story!
#rallyforromez
Dear friends,
When someone you know is diagnosed with cancer it can hit you hard. When it’s you, someone you love dearly, or your very own child, it’s like getting hit with a tsunami. Your whole world is inundated; you feel helpless – tumbled and tossed in the turbulent waters of uncertainty and at times, despair.
The past 18 months have been like that for us – great waves of shock and fear knocking us off our feet followed by gentler waves of hope only to be followed by another tidal wave of fear. Small triumphs followed by dashed hopes.
If I could, I would trade places with my son; but I can’t. While we can be there to support, love and encourage our loved ones, the people afflicted with cancer must walk the painful, lonely, soul-searching journey cancer necessitates on their own.
Before cancer, Romez was a hard-working, energetic, strong, highly skilled, heavy-duty mechanic happily and purposefully building his life with his loving, fun and also hard-working partner, Jen. Charismatic with a great zest for life, Romez was full of ideas, plans and energy. Together he and Jen enjoyed the great outdoors, camping, fishing, off-roading, etc. with their group of long-time friends. Charismatic, Romez was the life of any party with his huge personality, quick wit, story telling abilities and his great sense of humour.
That all changed in December of 2016 when Romez started experiencing chest pains. He went to emergency, was misdiagnosed, and sent home to rest. Over the next few weeks the chest pains got worse. In unbearable pain, he went to his family doctor (a family friend) who ordered an X-Ray. Alarmed by what he saw, the doctor arranged for an immediate CAT scan. The scan showed an ominous mass growing behind his breastbone.
A biopsy confirmed his doctor’s fears – Romez had cancer. Further tests confirmed T-Cell Lymphoblastic Lymphoma – a rare and aggressive kind of cancer. It was February, 2017.
Not knowing just how aggressive it was, Romez first tried to address the cancer with natural therapies under the care of a naturopath. Treatments included high-dose vitamin C, hyper-thermic treatment, mistletoe, alkalized diet, supplements, and a number of other things. While he had much symptom relief at first, the cancer kept growing. In only a few weeks the tumor had grown towards the heart, wrapped itself around his aorta and bronchi and caused a lung to collapse.
Admitted to the Cross Cancer Institute Romez, received several cycles of a heavy-duty chemotherapy protocol. I thank God that this treatment saved his life and reversed the growth of the tumor.
However, toxicity from the treatment also almost cost him his life. Along with “normal” side effects that many people expect from cancer treatment – nausea, bowel issues, pain, hair loss, and weakness – it also caused severe neuropathy (loss of feeling in hands and feet) and gave him neutropenia (wiped out his immune system). Vulnerable, Romez contracted a life-threatening infection that was unresponsive to every type of antibacterial, antifungal, antiviral medication the doctors threw at it. He spiked a super high fever that raged for days. Romez was at death’s doorstep. The family kept vigil around the clock. The doctors were baffled.
Finally, one of the oncologists had an idea. Although he said he couldn’t explain the logic behind it, he was inspired to try steroids. The steroids worked. Within 24 hours, the fever broke and Romez was with us once again and on the mend from the cancer.
But…(there always seems to be a but!) the combination of chemo toxicity and fever caused bleeding in front of his retina. It left him blind in both eyes. Can you imagine how devastating that was? Blindness on top of everything else! Being blind knocked the stuffing out of Romez. This was the only time I ever saw Romez show outward signs of being disheartened or discouraged.
But…thankfully, two eye surgeries and several weeks later, sight was restored completely to one eye while the other suffered only minor vision loss. Romez was back in the game.
By mid June, Romez was released from hospital and finally able to go home to Jen to recuperate. Treatment continued over the summer as an outpatient. By September we were all relieved to have the oncologist declare that he was free from cancer.
Over the next few months Romez recovered and regained his strength (not like before but it was coming back) and most of the unpleasant side effects subsided. By November of 2017 he was back at work as a foreman in a heavy-duty mechanics shop. We were all so happy and relieved.
BUT…the relief didn’t last long.
By February of 2018, Romez was once again experiencing chest pains. Back at emergency, a chest X-Ray showed a bit of fluid around his heart. Despite us informing the doctor of Romez having cancer in the same area the previous year and asking him to check, the doctor dismissed the condition as a viral pericarditis (inflammation around the heart) and sent Romez home with an anti-inflammatory. Two weeks later the chest pain was unbearable. Once again his family doctor came to the rescue. He ordered an ultra sound. The ultra sound doctor came rushing out to the waiting room shocked to find Romez still mobile. A huge amount of fluid had accumulated in the pericardium and was squeezing Romez’s heart. He could easily have had a heart attack and died!
Rushed to the Mazankowski Heart Institute, further tests were performed. A specialist drained a liter and a half of fluid from around his heart.
Testing of that fluid confirmed our worst fear – the cancer was back. This time the lymphoma was accompanied by leukemia – T-Cell Acute Lymphoblastic Leukemia, or T-ALL.
Now hematology oncologists were called in. T-ALL is typically a cancer only seen in children. After much consultation between many oncologists the decision was made to try the Dana Farber protocol, an intense chemo treatment normally used, quite successfully, for children. This was to be followed by a stem cell transplant. In order for the transplant to take place, the cancer needed to be totally wiped out (along with his own malfunctioning immune system) so the stem cell “graft” has a chance of being accepted by his body.
Cycle one of the Dana Farber protocol began as soon as his heart issues had been stabilized. It consisted of 10 days of intensive in-patient chemo concoctions accompanied by lots of fluids to flush out the toxins and lots of other drugs to counteract the expected side effects. Once again the nausea, digestive issues, pain, weakness, neuropathy, etc., came back.
Cycle two involved lumbar punctures – a painful procedure where a small amount of spinal fluid was removed and replaced with a chemo drug as a prophylactic measure. Apparently T-ALL cancer cells can pass the blood brain barrier and hide in the brain to pop up later as brain cancer. This treatment proved very arduous for Romez. He had terrible headaches and dizziness. His blood counts plummeted and he needed blood transfusions to keep going.
During this time we received some good news. A POSSIBLE donor had been found. I underline POSSIBLE. It is NOT FOR SURE! At any time in the complicated work up process, it might be discovered that it is not a good match after all, or, the donor, for some reason, might change his/her mind and refuse to donate.
So please register with www.Blood.ca if you haven’t already done so and are healthy and between the ages of 18 and 35. And please keep getting the word out to other eligible individuals and encourage them to register, too. It only takes 2 minutes to register on-line and a few more minutes to do the mouth swab once your swab kit comes in the mail. All you will have to do is send it back in the stamped, self addressed envelope and you’re in. Even if you aren’t a match for Romez, you might be able to be a hero for someone else.
Back to the story… About 7 weeks into the protocol, Romez was sent to see a radiation oncologist. Puzzled, we attended the appointment. Radiation had never been an option before. The radiologist showed us Romez’s most recent scan. We were very encouraged to see that the tumor had shrunk considerably and there was now space between it and his heart and bronchial tubes. Talking with the radiologist, who also seemed a bit in the dark as to why the referral for radiation when the chemo seemed to be working, we didn’t see the point of stopping chemo cycles and starting radiation treatments. There was great risk to permanently damaging the heart muscle.
A week later when we saw his primary oncologist we learned why Romez had been sent to radiology. The doctor had expected the cancer to be completely wiped out by the first cycle of treatment. As it was only half-gone, radiation had become an option. By then Romez was in his third cycle of the Dana Farber protocol. A decision was made to stay this course.
During this cycle some alarming symptoms, not related to chemo, started showing up: persistent violent coughing spells that made Romez vomit and wretch, massive headaches, and, again, chest pains.
The scan at the end of cycle three left us all devastated. The tumor had grown back larger than before. Stem cell transplant was now off the table.
What to do now? His oncologist was in Stockholm for a conference and none of the other oncologists seemed to know what to do except wait for his return in 10 days time. At the rate the cancer was growing, we could not afford to wait. Mama Bear (me) stepped in and insisted, as only a mama bear can insist, that they get in touch with his oncologist and come up with a plan. Now. They did.
A worldwide consultation took place. It was discovered that there was a new drug, Nelarabine that had been specifically developed for Adult T-ALL. Nelarabine can only be accessed if the patient has already failed two different types of chemo protocols, which Romez had. And, believe it or not, it is already available in Canada!
So that is what Romez is doing now. About 3 weeks ago he had his first round of the Nelarabine protocol as an in-patient at the U of A Hospital. Starting a few days ago, after the initial side effects and related weakness from the chemo, he actually started to feel better. His coughing has subsided considerably and he is no longer experiencing chest pain.
He is also following a cancer fighting ketogenic diet (Did you know that cancer cells love sugar and carbs?) and taking supplements to support his digestion (still compromised) and to help detoxify his system.
At the end of this week he is supposed to have another scan. We are very hopeful that it will show improvement. If it does, he will have another round of Nelarabine, and then be sent to Calgary for the stem cell transplant.
If the Nelarabine doesn’t work?…?
In the meantime, Behrooz and I have not been idle. We have been constantly researching and consulting with staff at various leading edge hospitals in the States as well as reaching out to natural and integrative healing clinics and hospitals in the States and in Mexico.
Just last week I was able to visit the Oasis of Hope Hospital in Tijuana to explore more options. The oncologist there confirmed what we already knew. Natural medicine isn’t enough. T-ALL takes chemo as well. The oncologist there had consulted with a team of experts beyond his hospital. The team suggested the Dana Farber protocol – the second protocol that had failed for Romez. At least everyone is on the same page!
So, if everything goes well with the Nelarabine, Romez will be able to head down to the Tom Baker Cancer Center in Calgary in a few weeks and then go on to Mexico to recuperate further.
The stem cell transplant requires that Romez be in the hospital for about a month followed by 3 months as an outpatient. Monthly living expenses for Romez and Jen will basically double for the 4 months they will have to live in Calgary.
After, we hope Romez and Jen will be able to go to the Oasis of Hope, initially for a three-week stay, and then 2 or 3 more times during the year for one-week follow-ups.
At the Oasis, they will be immersed in a holistic atmosphere that addresses healing of the body, mind and spirit. Romez will receive leading edge natural therapies to help him to detoxify and cleanse his body from the chemical residues of the chemo, boost his immune system, and help him rebuild his strength. They will even be given cooking lessons to deepen their knowledge and skills in preparing vegan, health-promoting meals. When Romez returns home he will follow a specific protocol of diet and supplements to help the healing process before he returns to Mexico for follow-up treatments. Each week will cost about $10,000 plus travel.
I have been moved and inspired beyond words at Romez’s courage and patience in the face of cancer as well as his unwavering efforts to protect the family and me throughout his struggles. He has often hidden his despair and frustration from those he loves so as not to cause further burden. There were many times he did not reveal his worsening symptoms nor the times when he felt lonely or depressed. He constantly speaks of his love for us and his gratefulness for all the support he has been receiving not only from us, but from so many other loving and generous people providing special home-cooked meals, and offering prayers and sending healing thoughts from here and around the world.
With a brave demeanour he does his best to push negative thoughts and emotions away and instead consciously dwell in the positive. He diligently works at keeping his spirit up and finding the humour in the situation. I am also in awe of his partner, Jen, who has shown astonishing love and patience under such difficulties.
This unexpected journey with cancer has helped everyone in our family to make different choices – we let go of old hurts and keep choosing to love, to laugh, and to be happy in spite of this hand life has dealt us. We are doing our best to live in the present moment and feel gratitude for the blessings and love that shower on us everyday. It’s too bad one can’t learn the lessons of cancer without experiencing cancer.
Jen has been Romez’s rock through out this ordeal. I have nothing but love, admiration and respect for this steadfast young lady. It hasn’t been easy for her either but she has been strong and risen magnificently to this unexpected and difficult situation, constantly supporting and loving Romez as she works full time, now as the main breadwinner, and keeps the household going. Even with the government support Romez receives, it has been difficult for them to make ends meet. When Romez goes to Calgary, and then to Mexico, Jen will be at his side. She will need to be there as his support person and will not be able to work.
As I mentioned at the beginning, in addition to letting you know about Romez, this post is also written to support the caring, heart-felt, fundraising efforts of Lana Frank and Jesse Wagner for Romez and Jen.
One of the many blessings we have received on this journey has been getting to know some of Romez’s friends and discovering what great stuff they are made of.
When Jesse Wagner read my previous post about Romez he immediately reached out to me. Jesse is a friend of Romez’s, and, even though they haven’t seen each other since junior high, Jesse was moved to action. Not only was he upset that Romez was ill, he was angry that there is little help available for an ordinary, dedicated, hard-working family man, like Romez, facing long-term illness which comes with the added financial difficulties.
Jesse and his mom, Jay Wagner, owner of the Grapevine Deli, hatched a plan – a fundraising barbeque – to help Romez and Jen and you are all invited!
Please join us on Sunday, July 22, 2018
From 12 – 4pm @ Jack’s Burger Shack
130-15 Perron Street in St. Albert
Link to RSVP: https://www.facebook.com/events/2227180997568193/
For a $10 donation (or more if you wish) you can come down and enjoy a drink and one of Jack’s famous burgers. Bring your friends and family and make an afternoon of it. Jesse (and Jen) have been working on having music and some activities for the kids, too! It should be fun!
We will also have a station where anyone eligible can start the registration process to be a stem cell donor. It’s so easy!
A HUGE, HUGE thank you goes out to Jay from the Grapevine Deli for the supplying the meat, and Jack from Jack’s Burger Shack for supplying the location, buns, condiments, grill and his famous grilling skills. Because of their generosity, EVERY PENNY raised will be passed on to Romez and Jen to help them with their expenses.
If you read this and can’t attend, please consider visiting the go-fund-me page that Lana set up and making a donation there. https://www.gofundme.com/round-2-rally-for-romez
Words cannot express how touched I am that Jesse and Lana are doing all this to support Romez and Jen.
I also have no adequate way to express my love, gratitude and appreciation to the hundreds of people who have been supporting my dear son and the rest of his family on this journey. Your kindness, generosity, prayers, healing thoughts and energies, delicious meals, messages of love and concern, liking and re-posting of my messages, registering as stem cell donors, asking others to register, too, already donating to Lana’s fundraiser…fills my heart to overflowing. Thank you from the bottom of my heart all for your caring and sharing. It means the world to me, to Romez, and to the family.
I hope to see many of you on the 22nd at Jack’s Burger Shack so that we can connect in person.
With love and appreciation,
Elaine
We all know someone whose been affected by cancer, and we know the possible outcome of it.
It's heartbreaking for our 28 year old friend to be going through this again. A guy who has been there for so many of us during hard times, our friend who supports us until the bitter end, helps put us on the right path at all times, needs our help. It's time to give back, please read.
Unfortunately, Romez is being treated for cancer for the second time in less than two years. In addition to the disease coming back in his lymphatic system, it is also presenting as leukemia – cancer of the blood.
Please help our friends Romez & Jen out by simply donating any amount to help pay towards medical bills , groceries and whatever else they require at this time.
Thank you for your support, it is greatly appreciated. Feel free to share this post so we can spread the word.
PLEASE SHARE & take a moment to read his story!
#rallyforromez
Dear friends,
When someone you know is diagnosed with cancer it can hit you hard. When it’s you, someone you love dearly, or your very own child, it’s like getting hit with a tsunami. Your whole world is inundated; you feel helpless – tumbled and tossed in the turbulent waters of uncertainty and at times, despair.
The past 18 months have been like that for us – great waves of shock and fear knocking us off our feet followed by gentler waves of hope only to be followed by another tidal wave of fear. Small triumphs followed by dashed hopes.
If I could, I would trade places with my son; but I can’t. While we can be there to support, love and encourage our loved ones, the people afflicted with cancer must walk the painful, lonely, soul-searching journey cancer necessitates on their own.
Before cancer, Romez was a hard-working, energetic, strong, highly skilled, heavy-duty mechanic happily and purposefully building his life with his loving, fun and also hard-working partner, Jen. Charismatic with a great zest for life, Romez was full of ideas, plans and energy. Together he and Jen enjoyed the great outdoors, camping, fishing, off-roading, etc. with their group of long-time friends. Charismatic, Romez was the life of any party with his huge personality, quick wit, story telling abilities and his great sense of humour.
That all changed in December of 2016 when Romez started experiencing chest pains. He went to emergency, was misdiagnosed, and sent home to rest. Over the next few weeks the chest pains got worse. In unbearable pain, he went to his family doctor (a family friend) who ordered an X-Ray. Alarmed by what he saw, the doctor arranged for an immediate CAT scan. The scan showed an ominous mass growing behind his breastbone.
A biopsy confirmed his doctor’s fears – Romez had cancer. Further tests confirmed T-Cell Lymphoblastic Lymphoma – a rare and aggressive kind of cancer. It was February, 2017.
Not knowing just how aggressive it was, Romez first tried to address the cancer with natural therapies under the care of a naturopath. Treatments included high-dose vitamin C, hyper-thermic treatment, mistletoe, alkalized diet, supplements, and a number of other things. While he had much symptom relief at first, the cancer kept growing. In only a few weeks the tumor had grown towards the heart, wrapped itself around his aorta and bronchi and caused a lung to collapse.
Admitted to the Cross Cancer Institute Romez, received several cycles of a heavy-duty chemotherapy protocol. I thank God that this treatment saved his life and reversed the growth of the tumor.
However, toxicity from the treatment also almost cost him his life. Along with “normal” side effects that many people expect from cancer treatment – nausea, bowel issues, pain, hair loss, and weakness – it also caused severe neuropathy (loss of feeling in hands and feet) and gave him neutropenia (wiped out his immune system). Vulnerable, Romez contracted a life-threatening infection that was unresponsive to every type of antibacterial, antifungal, antiviral medication the doctors threw at it. He spiked a super high fever that raged for days. Romez was at death’s doorstep. The family kept vigil around the clock. The doctors were baffled.
Finally, one of the oncologists had an idea. Although he said he couldn’t explain the logic behind it, he was inspired to try steroids. The steroids worked. Within 24 hours, the fever broke and Romez was with us once again and on the mend from the cancer.
But…(there always seems to be a but!) the combination of chemo toxicity and fever caused bleeding in front of his retina. It left him blind in both eyes. Can you imagine how devastating that was? Blindness on top of everything else! Being blind knocked the stuffing out of Romez. This was the only time I ever saw Romez show outward signs of being disheartened or discouraged.
But…thankfully, two eye surgeries and several weeks later, sight was restored completely to one eye while the other suffered only minor vision loss. Romez was back in the game.
By mid June, Romez was released from hospital and finally able to go home to Jen to recuperate. Treatment continued over the summer as an outpatient. By September we were all relieved to have the oncologist declare that he was free from cancer.
Over the next few months Romez recovered and regained his strength (not like before but it was coming back) and most of the unpleasant side effects subsided. By November of 2017 he was back at work as a foreman in a heavy-duty mechanics shop. We were all so happy and relieved.
BUT…the relief didn’t last long.
By February of 2018, Romez was once again experiencing chest pains. Back at emergency, a chest X-Ray showed a bit of fluid around his heart. Despite us informing the doctor of Romez having cancer in the same area the previous year and asking him to check, the doctor dismissed the condition as a viral pericarditis (inflammation around the heart) and sent Romez home with an anti-inflammatory. Two weeks later the chest pain was unbearable. Once again his family doctor came to the rescue. He ordered an ultra sound. The ultra sound doctor came rushing out to the waiting room shocked to find Romez still mobile. A huge amount of fluid had accumulated in the pericardium and was squeezing Romez’s heart. He could easily have had a heart attack and died!
Rushed to the Mazankowski Heart Institute, further tests were performed. A specialist drained a liter and a half of fluid from around his heart.
Testing of that fluid confirmed our worst fear – the cancer was back. This time the lymphoma was accompanied by leukemia – T-Cell Acute Lymphoblastic Leukemia, or T-ALL.
Now hematology oncologists were called in. T-ALL is typically a cancer only seen in children. After much consultation between many oncologists the decision was made to try the Dana Farber protocol, an intense chemo treatment normally used, quite successfully, for children. This was to be followed by a stem cell transplant. In order for the transplant to take place, the cancer needed to be totally wiped out (along with his own malfunctioning immune system) so the stem cell “graft” has a chance of being accepted by his body.
Cycle one of the Dana Farber protocol began as soon as his heart issues had been stabilized. It consisted of 10 days of intensive in-patient chemo concoctions accompanied by lots of fluids to flush out the toxins and lots of other drugs to counteract the expected side effects. Once again the nausea, digestive issues, pain, weakness, neuropathy, etc., came back.
Cycle two involved lumbar punctures – a painful procedure where a small amount of spinal fluid was removed and replaced with a chemo drug as a prophylactic measure. Apparently T-ALL cancer cells can pass the blood brain barrier and hide in the brain to pop up later as brain cancer. This treatment proved very arduous for Romez. He had terrible headaches and dizziness. His blood counts plummeted and he needed blood transfusions to keep going.
During this time we received some good news. A POSSIBLE donor had been found. I underline POSSIBLE. It is NOT FOR SURE! At any time in the complicated work up process, it might be discovered that it is not a good match after all, or, the donor, for some reason, might change his/her mind and refuse to donate.
So please register with www.Blood.ca if you haven’t already done so and are healthy and between the ages of 18 and 35. And please keep getting the word out to other eligible individuals and encourage them to register, too. It only takes 2 minutes to register on-line and a few more minutes to do the mouth swab once your swab kit comes in the mail. All you will have to do is send it back in the stamped, self addressed envelope and you’re in. Even if you aren’t a match for Romez, you might be able to be a hero for someone else.
Back to the story… About 7 weeks into the protocol, Romez was sent to see a radiation oncologist. Puzzled, we attended the appointment. Radiation had never been an option before. The radiologist showed us Romez’s most recent scan. We were very encouraged to see that the tumor had shrunk considerably and there was now space between it and his heart and bronchial tubes. Talking with the radiologist, who also seemed a bit in the dark as to why the referral for radiation when the chemo seemed to be working, we didn’t see the point of stopping chemo cycles and starting radiation treatments. There was great risk to permanently damaging the heart muscle.
A week later when we saw his primary oncologist we learned why Romez had been sent to radiology. The doctor had expected the cancer to be completely wiped out by the first cycle of treatment. As it was only half-gone, radiation had become an option. By then Romez was in his third cycle of the Dana Farber protocol. A decision was made to stay this course.
During this cycle some alarming symptoms, not related to chemo, started showing up: persistent violent coughing spells that made Romez vomit and wretch, massive headaches, and, again, chest pains.
The scan at the end of cycle three left us all devastated. The tumor had grown back larger than before. Stem cell transplant was now off the table.
What to do now? His oncologist was in Stockholm for a conference and none of the other oncologists seemed to know what to do except wait for his return in 10 days time. At the rate the cancer was growing, we could not afford to wait. Mama Bear (me) stepped in and insisted, as only a mama bear can insist, that they get in touch with his oncologist and come up with a plan. Now. They did.
A worldwide consultation took place. It was discovered that there was a new drug, Nelarabine that had been specifically developed for Adult T-ALL. Nelarabine can only be accessed if the patient has already failed two different types of chemo protocols, which Romez had. And, believe it or not, it is already available in Canada!
So that is what Romez is doing now. About 3 weeks ago he had his first round of the Nelarabine protocol as an in-patient at the U of A Hospital. Starting a few days ago, after the initial side effects and related weakness from the chemo, he actually started to feel better. His coughing has subsided considerably and he is no longer experiencing chest pain.
He is also following a cancer fighting ketogenic diet (Did you know that cancer cells love sugar and carbs?) and taking supplements to support his digestion (still compromised) and to help detoxify his system.
At the end of this week he is supposed to have another scan. We are very hopeful that it will show improvement. If it does, he will have another round of Nelarabine, and then be sent to Calgary for the stem cell transplant.
If the Nelarabine doesn’t work?…?
In the meantime, Behrooz and I have not been idle. We have been constantly researching and consulting with staff at various leading edge hospitals in the States as well as reaching out to natural and integrative healing clinics and hospitals in the States and in Mexico.
Just last week I was able to visit the Oasis of Hope Hospital in Tijuana to explore more options. The oncologist there confirmed what we already knew. Natural medicine isn’t enough. T-ALL takes chemo as well. The oncologist there had consulted with a team of experts beyond his hospital. The team suggested the Dana Farber protocol – the second protocol that had failed for Romez. At least everyone is on the same page!
So, if everything goes well with the Nelarabine, Romez will be able to head down to the Tom Baker Cancer Center in Calgary in a few weeks and then go on to Mexico to recuperate further.
The stem cell transplant requires that Romez be in the hospital for about a month followed by 3 months as an outpatient. Monthly living expenses for Romez and Jen will basically double for the 4 months they will have to live in Calgary.
After, we hope Romez and Jen will be able to go to the Oasis of Hope, initially for a three-week stay, and then 2 or 3 more times during the year for one-week follow-ups.
At the Oasis, they will be immersed in a holistic atmosphere that addresses healing of the body, mind and spirit. Romez will receive leading edge natural therapies to help him to detoxify and cleanse his body from the chemical residues of the chemo, boost his immune system, and help him rebuild his strength. They will even be given cooking lessons to deepen their knowledge and skills in preparing vegan, health-promoting meals. When Romez returns home he will follow a specific protocol of diet and supplements to help the healing process before he returns to Mexico for follow-up treatments. Each week will cost about $10,000 plus travel.
I have been moved and inspired beyond words at Romez’s courage and patience in the face of cancer as well as his unwavering efforts to protect the family and me throughout his struggles. He has often hidden his despair and frustration from those he loves so as not to cause further burden. There were many times he did not reveal his worsening symptoms nor the times when he felt lonely or depressed. He constantly speaks of his love for us and his gratefulness for all the support he has been receiving not only from us, but from so many other loving and generous people providing special home-cooked meals, and offering prayers and sending healing thoughts from here and around the world.
With a brave demeanour he does his best to push negative thoughts and emotions away and instead consciously dwell in the positive. He diligently works at keeping his spirit up and finding the humour in the situation. I am also in awe of his partner, Jen, who has shown astonishing love and patience under such difficulties.
This unexpected journey with cancer has helped everyone in our family to make different choices – we let go of old hurts and keep choosing to love, to laugh, and to be happy in spite of this hand life has dealt us. We are doing our best to live in the present moment and feel gratitude for the blessings and love that shower on us everyday. It’s too bad one can’t learn the lessons of cancer without experiencing cancer.
Jen has been Romez’s rock through out this ordeal. I have nothing but love, admiration and respect for this steadfast young lady. It hasn’t been easy for her either but she has been strong and risen magnificently to this unexpected and difficult situation, constantly supporting and loving Romez as she works full time, now as the main breadwinner, and keeps the household going. Even with the government support Romez receives, it has been difficult for them to make ends meet. When Romez goes to Calgary, and then to Mexico, Jen will be at his side. She will need to be there as his support person and will not be able to work.
As I mentioned at the beginning, in addition to letting you know about Romez, this post is also written to support the caring, heart-felt, fundraising efforts of Lana Frank and Jesse Wagner for Romez and Jen.
One of the many blessings we have received on this journey has been getting to know some of Romez’s friends and discovering what great stuff they are made of.
When Jesse Wagner read my previous post about Romez he immediately reached out to me. Jesse is a friend of Romez’s, and, even though they haven’t seen each other since junior high, Jesse was moved to action. Not only was he upset that Romez was ill, he was angry that there is little help available for an ordinary, dedicated, hard-working family man, like Romez, facing long-term illness which comes with the added financial difficulties.
Jesse and his mom, Jay Wagner, owner of the Grapevine Deli, hatched a plan – a fundraising barbeque – to help Romez and Jen and you are all invited!
Please join us on Sunday, July 22, 2018
From 12 – 4pm @ Jack’s Burger Shack
130-15 Perron Street in St. Albert
Link to RSVP: https://www.facebook.com/events/2227180997568193/
For a $10 donation (or more if you wish) you can come down and enjoy a drink and one of Jack’s famous burgers. Bring your friends and family and make an afternoon of it. Jesse (and Jen) have been working on having music and some activities for the kids, too! It should be fun!
We will also have a station where anyone eligible can start the registration process to be a stem cell donor. It’s so easy!
A HUGE, HUGE thank you goes out to Jay from the Grapevine Deli for the supplying the meat, and Jack from Jack’s Burger Shack for supplying the location, buns, condiments, grill and his famous grilling skills. Because of their generosity, EVERY PENNY raised will be passed on to Romez and Jen to help them with their expenses.
If you read this and can’t attend, please consider visiting the go-fund-me page that Lana set up and making a donation there. https://www.gofundme.com/round-2-rally-for-romez
Words cannot express how touched I am that Jesse and Lana are doing all this to support Romez and Jen.
I also have no adequate way to express my love, gratitude and appreciation to the hundreds of people who have been supporting my dear son and the rest of his family on this journey. Your kindness, generosity, prayers, healing thoughts and energies, delicious meals, messages of love and concern, liking and re-posting of my messages, registering as stem cell donors, asking others to register, too, already donating to Lana’s fundraiser…fills my heart to overflowing. Thank you from the bottom of my heart all for your caring and sharing. It means the world to me, to Romez, and to the family.
I hope to see many of you on the 22nd at Jack’s Burger Shack so that we can connect in person.
With love and appreciation,
Elaine
Organizer and beneficiary
Lana Frank
Organizer
St. Albert, AB
Jennifer Van Brabant
Beneficiary
Begin your fundraising journey
