OUR FINAL, AGONIZING UPDATE-
(August 4, 2019)
Dearest family, friends, and sweet acquaintances... This is the most excruciating update of them all.
As many of you may have already heard, our sweet, sweet Rosalina has passed onward.
She set off for her next elevation on Friday, August 2, 2019 at 1 o'clock in the afternoon. She walked over that great bridge to eternity peacefully at home, holding her Mama and Daddy's hands, and warmly surrounded by her family and close friends with love.
We will celebrate Rosalina at the Aquatopia Water Garden Conservatory at 2710 March Rd. in Carp on Tuesday, August 6 from 1:30-4pm and also from 6-9pm.
Her body will be given over back to our Great Mother Earth at Bellevue Cemetery at 1030 chemin d'Aylmer on Wednesday, August 7 at 11am.
Everyone is welcome to join us for both occasions.
In lieu of flowers, please consider donating to Rosalina's Love Fund, in support of causes close to her heart ❤ We are setting up this gofundme page as we speak and will post it as an update here shortly.
With LOVE & LIGHT, as Rosalina taught us so much about, always with a smile on that beautiful, beautiful face of hers through all of her struggles,
and with so much gratitude and humility for your wonderfully strong and constant support of her and us all,
Our whole entire family
~ WE HAVE A NEW SITUATION AND A NEW CAMPAIGN GOAL ~
PLEASE HELP OUR SWEET ROSALINA!
I would like to begin with an apology. Much time has elapsed since I last wrote an update to this campaign and for this I am truly sorry. It is both a blessing and a curse that I am the family member designated to write here.
A blessing because I tend to know the details of Rosalina's condition most fluently, as well as being the 'writer' in the family; so it is in its own bittersweet way an honour to be able to share accurate news about our sweet Rosalina with you and to be the mouthpiece for her needs in these appeals.
Yet it has also been a curse; as her Mama I sometimes can't just sit down and write all the facts at any given moment without it sucking all of my energy. At times, as it has been when things aren't going very well, I find it sinking me into even deeper heartbreak and despair than I am already living through daily. This is why it has taken me well over a month now to sit down and write this one. Things haven't been going very well for our sweet Rosalina...
THE PAST FEW MONTHS
As many of you know, from late January to mid February we were with Rosalina in a clinic in Mexico, administering non-toxic treatments. The aim was to stop the growth of her primary abdominal tumour, as we found out very early in January that it had begun to grow again after a period of stability.
A few weeks after our arrival back home, Rosalina began to complain about pains in her tummy. We spent some time at CHEO trying to give her the right doses and combinations of pain medications, as well as to repeat imaging. The MRI and CT scans that followed left us absolutely aghast. Although the primary tumour now seemed stable, the metastatic disease had returned to all of the previous sites in her body, and also grew in a few new places.
It was now to be seen again in her bone marrow, a few places in her bones per se and multiple lymph nodes within her abdomen and neck were now affected once again. As well, the tumour between her lungs, behind her heart that had been stable for a long time had grown slightly and was now exerting mild pressure on one of her airways.
We met with our oncology team at CHEO and went over the very few options that were available for her. The viable ones we explored. We learned that a viral therapy that we were willing to pursue had very little chance to save Rosalina's life, so we decided against attempting this. We eventually settled for some pretty drastic actions. Upon advice from the doctor in Montreal and extremely scared to lose her, we decided to give five rounds of what is called “palliative radiation”, focused on that primary tumour while we awaited the coming of the same monoclonal antibody (immunotherapy/chemotherapy) regimen that Rosalina had been on in the past, which had previously cleared her body of metastatic disease. We needed a new venous access in preparation for the therapy, so we had a PICC line installed in her left arm. Heartbreakingly, she again lost the freedom she had gained last summer after completing that very same therapy and having her Broviac catheter taken out of her chest.
April ended up being a horrific month. I had noticed one of the lymph nodes -- a big lump on her lower left neck -- that was very enlarged. This wracked me with absolute fear. Then she developed a limp. We did not know if this was due to the tumour(s) in her belly pressing down on a nerve or whether it was the bone marrow involvement that was causing it. Rosalina was brought in by wheelchair on a few occasions, both to CHEO appointments and to be irradiated at the General Hospital. She got to feeling very tired and developing diarrhea; then, four days post-radiation she began cycle 1 of the immunotherapy protocol. The two combined made for a torrent of nightmarish reactions.
Rosalina's bowels were severely damaged by both therapies being administered so close together, even though this is commonly done without such extensive damage. The harm and ensuing inflammation her guts sustained from the radiation and one of the protocol's chemotherapy drugs, Irinotecan, which is notorious for its destructive effects on the gut, made for three weeks of non-stop diarrhea. This forced us to be admitted into hospital for the rest of the month in order to stabilize our sweet Rosalina.
The unceasing liquid poops kept leaking electrolytes out of her body, which had to be re-administered constantly through IV fluids. Her perforated bowels also leaked fluids internally into her tissues and she developed very severe edema which swelled her whole torso, traveled to her back and also affected her cheeks, eyelids, legs and arms. Rosalina was pretty much bedridden that whole time, eating very little for weeks and losing a lot of her body mass and the little muscle strength she had.
In the interm, while performing an ultrasound to characterize the edema, we also found out that Rosalina had developed six new blood clots, one which was completely occlusive, in the arm where she had her PICC line installed, and for which she was to immediately start on twice daily Enoxaparin injections!
It was during this period of time, being bedridden in the hospital, away from her favourite place in the world – school-- unable to regulate her own bodily functions, and now being given needles regularly, that Rosalina's spirits finally came down, crashing hard. In all her life, Rosalina has had a bright and cheery outlook. She always a happy girl. Never have I known her to be what she became -- she would not look up at the doctors coming to visit, talked very little, keeping her head down playing on her ipad, was constantly irritable and was becoming depressed.
~ Rosalina in hospital, April 2019
By the end of the first cycle of immunotherapy, we knew that the second one wouldn't follow as normal; that her body needed more than two or three weeks to heal before facing another assault. Once the diarrhea came under control and the extra fluids in her body came off, we came home and were glad to give her a rest. We were happy to restart her IV Vitamin C and mistletoe treatments at the Ottawa Integrative Cancer Center, as she now had a venous access point through her PICC line which we could use. We did our best while awaiting the time to begin the immunotherapy treatment again.
Yet no more than a couple of weeks back at home, Rosalina began to complain of pains in her thighs. Some days these pains were quite severe. On Mother's Day I noticed the return of Rosalina's limp. It had disappeared after the rounds of radiation, but I had noticed something strange in her gait a couple of days earlier, but now it was very apparent. At our Mother's Day dinner I had to carry Rosalina to and from the washroom. We feared that the bone marrow involvement was now beginning to make itself felt. We readjusted the dosage of her pain medications and eagerly awaited cycle 2 (who knew one could “eagerly await” chemotherapy!).
~ Rosalina at the Experimental Farm, May 2019
It was expected that we would have to wait to repeat the treatment, but what we did not expect was to hear the doctors tell us in mid May that they were now going to discontinue this and all treatments!! We got 'that talk' from them -- go home, let Rosalina enjoy a better quality of life than if she were to receive futile chemotherapy treatments. They offered that they can “help to keep her comfortable.”
So many emotions. Can't even tell here. So much felt and lived through. So many thoughts, so much angst. So much darkness. Being at home, unable to get help for Rosalina from the hospital anymore other than dressing changes, blood work and hemoglobin transfusions, time was needed to process all of this. To be truthful, I myself have not completely processed it yet; that we are on our own in trying to find healing for Rosalina.
ROSALINA'S PRESENT CONDITION
As we speak, Rosalina is not doing very well and hasn't been lately. This is why I have found it extremely hard to write this. There are good days, but we have seen a lot of bad ones too. Some downright frightening. Rosalina's tummy is extremely distended, her breathing is not as normal and although she has walked better lately, that limp is still with her. She takes pain medications four times a day to control the hurt she feels in her tummy, but she has not complained of the pain in her thighs for quite some time now. She has swollen eyelids and ankles quite a lot. She is tired a lot too, and her body, other than her torso, is very, very emaciated. The other very worrisome thing is that Rosalina is so, so sad. That sadness that began during the hospital admission in April has also stayed with her and has been a constant mood for her unless she is distracted by something.
As it has been, she pushed herself to go to school almost that whole last week of school. She was able to finish this school year with her friends and beloved teachers and school staff. That was not something she wanted to miss. Also, she pushed herself again to attend day camp a couple of weeks ago. She walked a lot, played with other kids, and did some cooking in her culinary camp. Now she is pursuing an arts camp, for which she is signed up already. So much determination and desire for normalcy in this special child. Rosalina truly is a special Being.
~ Rosalina preparing her thank you cards to teachers and friends at her school, June 2019
Seeing her condition now, and knowing she needs help more than at any other time since she was diagnosed, we have put into place some new protocols and treatments. We need to pay for these, and we hope you can help us.
We would like to raise an additional $38,000 to cover the costs of the following items for Rosalina at this time:
* Sunivera protocol
* Salgena protocol
* Rife machine
* ongoing naturopathic treatments
* travel expenses / trips to clinics
* sessions with wholistic health professionals
* organic foods, supplements and herbs
Thanking you all in advance for considering to help us with these expenses, and feeling so much gratitude for the assistance we have had from all of you in the past. Our family could not have provided all the good things that Rosalina has received without your help.
Finally, for any of you who have not visited our campaign before, and do not know Rosalina's story, you can find it here below. I did not want to erase it for it tells of Rosalina's bright and arduous journey down this winding path that she and all of us have walked with her these past three and a half years, and in extension; all of you whose hearts are entwined with ours in our great love for our sweet Rosalina.
Blessings and may we all find our peace and understandings in this life,
Mama Agata and on behalf of Rosalina and all our family
July 19, 2019
~ Childhood Cancer Survive and Thrive ~
HELP ROSALINA ACHIEVE
TOTAL AND COMPLETE HEALING!
She needs funds for-
* ongoing naturopathic treatments
* travel expenses / trips to clinics
* sessions with wholistic health professionals
* organic foods, supplements and herbs
Conventional treatments in combination with all of these and more have brought her to a good place, but the hospital has nothing more to offer...
We need to step up other available, non-toxic means to get Rosalina to the rest of her life!
PLEASE HELP US TO SUPPORT HER THROUGH TO FULL RECOVERY
Here is her story...
The story of one unique, amazing girl...
~ Rosalina before full blown illness was made obvious (August 2015)
Our sweet Rosalina was diagnosed two and a half years ago with stage IV neuroblastoma, a childhood cancer of the nerve cells. She was five years old at the time. Doctors found a grapefruit sized tumour in her belly and widespread metastatic disease. Our family was utterly shattered. All our hearts were broken completely. It is hard to truly describe the feelings and reality of those terrible dark early days and nights.
~Rosalina's first night admitted to hospital
Immediately upon diagnosis, the children's hospital here in Ottawa, Canada installed a central line in her chest, and put her on the standard high risk neuroblastoma protocol. Within two weeks of that life shifting ultrasound when the large tumour was found in her abdomen, our little girl was administered the first of many cycles of chemotherapy. The nightmare took on life...
The things one knows intellectually are dwarfed by their actual appearance across the body and face of a dear loved one, especially one's own little child whom you had always protected and cared for, gave the best to, kept harm away from... The heartbreaks ensued, one after another; Rosalina began to be ill, vomiting constantly from the chemotherapy and morphine. She grew thinner, her appetite was sometimes nonexistent. At one point she didn't even want to sip water, and that was the lowest of the lows because total fear then set in. There was a lot of fear.
I remember one morning upon waking I took Rosalina's hand in mine as she still slept, and to my deep horror, her hand was cold and almost lifeless. I could feel the lack of energy circulating within it. I knew it was the chemotherapy that had done this to her. The fear grew.
~ Four months into intense chemotherapy- still beautiful!
Rosalina lost her hair (I still have it in a jar). She developed dental problems and had bone health issues in her spine. The neutropenic nights of mystery fevers during recovery periods at home that landed us right back in the hospital for weeks at a time on various drugs and antibiotics were many. The transfusions of platelets and hemoglobin, bone marrow aspirates, MRIs, CTs, MIBG scans and X-rays, the dressing changes, cultures, blood work and urine tests seemed endless. The smell of the hospital was always on our skin, and especially on Rosalina's.
When her baby brother was born two months after Rosalina was diagnosed, he joined her in the hospital during our stays there. We were determined not to break up our little family. It wasn't ideal for him to come into the world like that, but we know her baby brother helped to comfort her in ways still untold. He appeared as a blessing to us all.
~ Rosalina and her two day old brother, Isa
Rosalina went through the 6 cycles of the Induction phase of the protocol, but the treatment was not altogether successful. The metastatic disease was quelled, but the primary tumour did not shrink at all. Surgery was deemed too risky because of its size and location, and the fact that it was wrapped around some very vital vessels. We were told that there was too much risk involved in performing resection for too little change to the medical outlook. With that, our least disliked portion of the initial protocol was swept away and again there was fear and uncertainty.
But not everything was grim. Almost immediately after diagnosis, our family made contact with an integrative oncology clinic here in Ottawa. It was early on in the game that Rosalina began to receive twice weekly High Dose Vitamin C infusions and mistletoe injections during her recovery periods between treatment cycles. Her naturopathic doctor there recommended various supplements which she still takes to this day and pointed the way to a few dietary additions. These all helped to keep our little girl as physically supported and as detoxified as possible under the circumstances. She also received reflexology treatments once a week and sometimes met with a hypnotherapist at that same clinic. We are full of gratitude for this place, which has been a rock to us since the beginning, supporting Rosalina's overall health and recovery physically, mentally and emotionally. It was our second home in times of crisis.
~ Mudcakes for all
~ Enjoying the lakeside, even with a central line in
We will always look back and see the positive impacts of combining complementary means of cancer care along with the allopathic model. The proof of the goodness of this way was in front of our eyes: Rosalina looked strong and mostly healthy; she had enough energy to outrun any of us; her beauty and fortitude under the circumstances amazed us all.
We felt and knew that all these efforts were made to offset the damage being done to her by the toxic chemotherapy regimen. It was done to counterbalance the destructiveness of conventional treatment, which, for better and for worse Rosalina had to receive being a child and in the eyes of the law, unable to make her own decisions in the matter of treating her disease.
~ Our Supergirl- strong, resilient, determined and always positive
Our initial fundraising campaign allowed us to set up a strong home protocol. We purchased juicers and a near infra red sauna, plus we switched out all plastics to glass; Teflon to stainless steel. Along with daily veggie juicing, an all organic diet was put into place. On top of that, every day Rosalina gulped down medicinal smoothies filled with all kinds of important antioxidant, antinflammatory, supportive supplements. We also persisted through obstacles in acquiring a medical marijuana certificate and then Cannabis appeared like a godsend as a key player on the scene of Rosalina's care team.
When we came to the impasse of surgery, other options were considered. We traveled to Germany with Rosalina for three weeks of hyperthermia treatment, the goal being shrinking the tumour so as to allow a chance for resection. It did not shrink, unfortunately. In fact, it has never budged, with any treatments. There is the theory that perhaps most of the tumour mass is necrotic, and unable to grow or to respond to treatment because if that is the case, the cells are not alive and are impervious to anything applied to them.
~ Rosalina (and her stickers) receiving local hyperthermia treatment to her primary tumour in Germany
One amazing thing that happened in Germany besides the warm relationships we established and the treatment supports that Rosalina was given was the confirmation from the pediatric and general oncology community there that the protocol Rosalina was on was not suited to her case. Other possible treatments were recommended, and we came back to Canada with these in mind.
Then one of those times transpired when seemingly very bad things happen but then end up serving the overall good... Immediately upon our return Rosalina's tumour markers came back very elevated. Imaging was done and it showed an aggressive return of the metastatic disease. Rosalina's condition was back at square one. The fear came back to grip us.
After emergency considerations and consultations with the children's hospital in Toronto, a proposal was made by Rosalina's head oncologist to start her on an immunotherapy protocol for high risk relapsed neuroblastoma to which we agreed. We were relieved to avoid what the original protocol called for, which was stem cell transplant through high dose chemotherapy followed by radiation and only THEN immunotherapy.
This new, second protocol entailed the use of Dinutuximab, a chimeric monoclonal antibody, along with chemotherapy and a slew of supportive drugs. The antibody treatment would involve a lot of pain, which would have to be tightly controlled with a special pain medication along with around the clock morphine during the infusions. We were very scared for the types of suffering Rosalina would face, but we wanted her to survive. And this is why anybody would do such things.
~ First cycles of immunotherapy protocol
Thank goodness the chemotherapy on this regimen was a lot less intense than what she had received the year before, and we offered Rosalina everything we knew that would support her immune system, help her to continue eating, improve her gut health, detoxify her, keep up her vitality and give her strength. All these we found in nutrient dense, fresh organic foods, Cannabis oil, supplements and probiotics, juicing, medicinal smoothies, her sauna, nightly detox baths, twice weekly High Dose Vitamin C and mistletoe infusions, and the reflexology and energy healing sessions Rosalina received throughout this time.
All these did her wonders, but let's not forget the value of other, non-physical elements in the good progress of her healing- having her big family always around her to distract her, make her laugh, spend time with her; the amazing Child Life staff who always brought out her creative spirit; the positive reinforcement she was always given when times were low and darker than usual; the prayers from all around the world; the inspirational quotes always there for her to take in; her school friends to return to and her super strong spirit always vibrating in a good way...
~ Evoking the balance- supplements on left, chemotherapy on right
For someone enduring through 17 cycles of this new protocol, one which a lot of kids had to drop out of simply because of bodily intolerance, Rosalina fared very well. The doctors were surprised at just how well. The pain of treatment was well controlled and her allergic reactions died down over time- never completely- but enough to allow her to carry on up to cycle 17 relatively unscathed. The Cannabis oil kept her eating and even gaining weight slowly over time, rather than losing it! It wasn't easy for her; it was a miserable march of ups and downs but she did push through and recover over and over and over again as the cycles were administered from April 2017 to June 2018.
~ In between cycles, a creature of beauty and tenderness
~ Always the prolific crafter, even tied up at the hospital
~ Rosalina and unexpected guest
Physical, psychological and emotional hardships did continue though. Twice more Rosalina lost her hair and regrew it. She missed a lot of school, which she loves so much. She also developed a blood clot as she grew like a good girl of her age and out of that central line that had been sitting in her chest for a year and a half at that point. The catheter was still viable, but lifted out of place, it gave us trouble in doing its job and rubbed and irritated her jugular vein until a clot formed inside it and had to be treated.
She then had another trial to get through on top of all the regular doses of suffering: 6 weeks of twice daily blood thinner injections- and some weeks it was three injections a day, due to the bone marrow stimulating G-CSF shots she had to take for a week following every cycle of treatment. It was a horrible. There was a lot of screaming and tears. Rosalina's arms bruised quickly due to lowered platelet counts and soon there were no more clear spots to inject into. She refused to have it done in her thighs or abdomen. We didn't push her...
Unbelievably, Rosalina was able to make it through grade one (2[phone redacted]) with top grades and a warm place among many friends and adoring teachers and staff at her magnificent school. Although she missed a lot of the academic year, she never really missed a beat. Being extremely bright and so motivated to be like all the other kids, she excelled.
School has been and is Rosalina's true safe refuge from all the formidable challenges and tortures she has had to endure during these past two and a half years. This Fall she rejoined her school community and began grade two- free from her central line, away from hospital treatments and constant medical appointments, loosened from the cyclical nooses of the destruction and recovery of conventional treatment- and she is shining so bright!
~ First day of school, grade two here she comes!
So in June of this year, Rosalina's 17th cycle of immunotherapy was completed and that concluded her immunotherapy protocol. Her central line was removed a month later, giving her a chance to finally take showers and fully submerged baths, and to savour half a summer of splashing around gleefully in lakes and pools. But it was a bittersweet moment in time, as the treatments, along with her supportive care and the relationships with kind nurses and doctors and hospital staff were about to end.
As much as one can come to hate hospitals and all the things that happen inside them, there was a type of comfort that had developed over the years; a certain routine, along with the knowledge that something was always being done to forward making that cancer very uncomfortable. Now we would be out in the open ocean on our own, so to speak, looking for other ways to make the cancer not want to live in Rosalina's body anymore. The opportunity stood before us to go out and seek treatments that would take Rosalina to TOTAL AND COMPLETE HEALING as we had always wanted.
That open door represented many things, and it was truly at that moment that I realized just how complicated things can be; the love hate relationship with conventional treatment contains a lot of grey areas. It is impossible to separate which things that were done had the positive effects on healing because so many things had always been done at once... Certainly that immunotherapy treatment did Rosalina so much good. I am grateful to the allopathic system for having been an important part of my little girl's healing. Most of all, I am grateful to all the sweet people within it who took care of our little girl in the worst moments and who gave us such great support.
When June came along with the end of treatment we had another set of scans done. The MRI, CT and MIBG especially showed us things that we wanted to kiss the ground for. We thank the Universal God: Rosalina had no visible signs of disease in her body except for two small spots on the periphery of that stubborn primary abdominal tumour. She was at the best she'd ever been since diagnosis!! We were leaving treatment with our girl being in such a good place. We knew the importance of maintaining this position and then also keeping on to the final goal...
~ Loving life
We need to do all that we can to maintain her progress towards TOTAL AND COMPLETE HEALING, and to help her get there. The conventional took us a ways, supported by the complimentary therapies, our home protocol, the mental work we have done, through the calling on the energy of spiritual Good and through Rosalina's sheer will to get better. Now we had to find ways and means to get Rosalina to push through to the ultimate vision.
Since the hospital has no further interventions they can offer, we are left to intensify our home protocol and continue forward with the very crucial non-toxic therapies that we feel can give that extra push and make the needed difference. Some of these are therapies that have already helped to let Rosalina come this far- and some we have never tried yet- but one thing is sure: they are out there and are not covered by health insurance. We need help.
These and Rosalina's obviously rock solid spirit and fierce determination are going to get her all the way to the goal...
Into a life free of cancer.
Into a life of more thriving and shining...
Adventures and accomplishments...
A life of love and development....
... and maybe even babies (this is my new vision I am holding of a future I want for her, if she were to want that too).
Now we are calling upon you to embrace our sweet girl and help us to fund these elements of her healing. With everyone on board and following the beautiful trail that Rosalina and her incredible journey have set us all upon, we know she can do it!
SHE'S ALMOST THERE...
PLEASE HELP US TO BRING OUR SWEET ROSALINA TO TOTAL AND COMPLETE HEALING!
With so much gratitude for assistance in the past, present and future, and there has been a bounty of it,
Rosalina's Mama Agata & the whole Bedynski-Belli family
October 14, 2018
~ Rosalina at the 2018 Carleton Butterfly Show
CLICK ON THE LINK BELOW FOR A VIDEO THAT TRULY CAPTURES ROSALINA'S SPIRIT AND TENACITY!
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