Priscilla Kelly's cancer treatment
Priscilla has been fighting this battle for years, but now she needs your help.
This is Priscilla's story:
November 13th 2011
Priscilla found a lump that hurt when pressure was added to the area.
November 24th 2011
CT scan confirmed it was cancer, and her world changed forever.
December 8th 2011
Doctor told her she had a very rare cancer called Liposarcoma. She was sent to Toronto for further testing and to see a specialist.
January 3rd 2012
First Toronto visit. They did additional testing and found that it was not they type of cancer they originally thought. It was in fact neuroblastoma. (Very uncommon in adults, mostly found in children)
Pearlz is 1 in only 60 cases around the world with this type of cancer.
January 27 2012
Pearlz meets Dr.Nicholas for the first time. The plans to start chemo are made.
February 14th 2012
5 rounds of chemo started.
Two hospital stays involving multiple blood transfusions. She nearly lost her fight
28 days of radiation to see if it makes a difference.
The tumor becomes stable, and her health begins to return. At this time doctors determine the tumor will be inoperable.
Scans show growth again.
During this difficult time God gave them a wonderful gift: their son Liam. During her pregnancy the tumor shrinks 2 cm. Finally some good news!
Liam was born 6 weeks early but healthy and strong, so Pearlz once again may begin treatment.
Three more rounds of chemo; however it made no difference in the tumor. Pearlz and her doctor decide that with the very slow growth, the best option is to do scans every 3 months and monitor it.
Scans show a new growth, they thought it was a cyst on her ovaries.
2016. The second tumor is in fact cancerous. The doctors are still trying to determine where exactly it is located other than in the lower pelvic area. This mass is 6 x 5 cm in size at present.
There has been a significant change in the original tumor, which has grown from 15 x 5 to 25 x 5 cm.
The larger size of the tumor is now causing it to push on the ureter which is blocking the left kidney from draining to her bladder.
On top of all this, Pearlz recently found out that she is pregnant for another baby boy. This comes as a HUGE shock to the family as she was told that due to the chemo and radiation she was entering menopause.
So at this point the doctors have given her 3 options:
1) deliver the baby as early as 32 weeks via C-section and do a biopsy at the same time.
2) start chemo in the third trimester of the pregnancy
3) do nothing and let nature take it's course.
She will also be having surgery in the next week to insert a nephrostomy tube to help drain the left kidney.
When she was first diagnosed with neuroblastoma,
she was given a 5-10 years left.
We are now five years into this battle.
So here is where your help is needed: we have done lots and lots of research into alternative ways to try and slow down this tumor growth and give her some time during her pregnancy. We have found testimonies on essential oil use that are promising. These natural methods are costly, but will hopefully help with cancer and also with helping keep her as healthy and as strong as possible for the upcoming treatments she will be requiring. The money that is raised through this GoFundMe page will be put towards the purchase these oils:
Frankincense, Sacred Frankincense , Myrrh, Lemongrass, Sandlewood, Immupower, Pan away, Ningxia red juice
We are truly hoping that these oils can give her the time she needs to finish this pregnancy to full term without the abrasive treatments of chemo and perhaps even stop the tumors from growing.
We ask that you keep Pearlz and her family in mind and in prayer. She can and WILL beat this!
She just needs our help.
OCT 30 2016
Baby Kullen has arrived 6 weeks early and by C-section, he is 4lbs even though he is really small he is here safe and doing well.
So for more info on what's been going on see"updates"
But to jump ahead to what's going on now March 2017
Pearlz had done her radiation therapy and she seems to be in more pain then before :( they are looking into getting her hooked up to a pain pump to help manage it a bit more for her.
The news has hit us all hard and we are on a mission to try different alternative treatments. We have got some fundraisers in the works to help cover costs to these treatments. The first month is $5000 just to get this started followed by a monthly cost of about 3500 to keep going. As much as she wants to live longer and be around for her children, the family can not afford to pay for these out of pocket. The Phoenix tears have had great results with other cancer patients. We have set a goal to work at getting her to see her baby turn 1 year. Doctors have given her 6 months and we are not willing to accept this time frame. I am not asking you if you can not donate could you please stair this so the word can get out. We need the world to see her story.
From all of pearlz family and friends we want to thank you for everything you have done to help us out
PEARLZ FIGHT IS NOT DONE
(visit her on Facebook and show her some words of encouragement to keep going)
Alright so big appointment today at the Ottawa Integrative Cancer Centre. Met with my naturopath Dr. Mcdonel. First off, they have not had experience with Neuroblastoma patients so this will all be experimental which has been my experience since Day 1 of this diagnosis so I understand that. Now she did say that they will research and the things that they have started me on and will research will not cause any harm but may or may not be beneficial. We discussed my goals today in knowing that I do have a terminal illness and in no way is this expected to be a cure but a way to prolong life and enhance quality of life. My two main starting goals were increasing energy and managing pain control. I have another appointment on Monday to see their General Practitioner to get the blood work done to start the Vitamin C infusions. That should start hopefully within the next two weeks. They are going to try to get in contact with the naturopath clinic in Cornwall to see if the Treatments can be given there which will lessen my trips to Ottawa as they do increase my pain as its a long ride for me. I am really hoping that it is a possibility. They are planning approximately 15 (or more depending on the outcome) of the Vitamin C infusions with a review after 3 to 4 treatments. They said I will know by then if the treatments are helping or not and if its worth continuing or not. I am also starting Vitamin D3 1000 IU/Day (Prevent deficiency and helps with immune support), Curcumin (powerful anti-inflammatory, helps with pain, lowers inflammation and may have direct anti-cancer actions)), Melatonin (helps with side effects including pain, appetite, energy and sleep quality. It is also an anti-oxidant which helps support immune function and has anti-cancer actions.) and Probiotics (Helps to heal the digestive tract, anti-inflammatory, good for immune system). These supplements are to be added to my daily medication list and I am to continue my current pain regiment of dilaudid, lyrica and cannabis oil.
There are other things to be added later on as needed but i am positive this is a good start. Also looking into Mistletoe injections which are an at home injection, I have some paperwork to look over for it and a little bit of research to do on it myself and cost to look into it. I will be getting an email with cost breakdown for all of these as well soon. Bought the supplements I needed to start today and will be integrating them. Also she was very happy with my current nutrition plan that we have in place.Thank you Shanna Marie Lynn for your help with that this weekend :) I also got a referral for 2 free sessions of yoga therapy. All in all I am content with these first steps.
We do have fundraiser taking place in a few weeks if you would like more information on them please contact me.
On March 21st Priscilla went to see Dr. Nicholas. This is the outcome of that visit
Priscilla asked about the MRI. He said that the tumours are along each verterbrae and that they are starting to connect together which is why she is having more pain. He wants to wait to do another MRI so that the radiation has time to work if it is going to do anything because the chemo didn't . He is booking it in 6 weeks. He said no more chemo because it's not worth putting her through it because it's not doing the effects they wanted it to do. Basically their goal is to help alleviate her pain and have a bit of enjoyment of life. This is it she was sent home to life out what she has left to her life.
BUT we are not giving up yet. There are a few ways to help still. These methods are not covered my insurance or ontario health care.
First she wants to try vitamin c infusions these are costly but have known to help prolong life in cancer patients. They cost around $150 an infusion and she would need 2 to 3 a week. For a minimum of 6 weeks. This is just the first step of what we would like to have her try.
Every cent helps make this possible
So I'm kinda of dreading doing this update. Lots and lots of bad new has come our way lately. So first bit as you know Will has taken off time from work to help out in the house and with kids while Pearlz is doing her treatment. So while he was off during Pearlz stay in the hospital before Kullen was born he was on a program called Critical Care relief, once Kullen was born it switched over to parental relief, except they didn't do that right away when he submitted that paper work. So now the government is withholding his cheques it's been over a month sense they have received any pays for him being home. And this can take up to another 6 weeks to see anything from them. They have the stress now of the bills piling up on top of everything else going on. So next bit Pearlz went to see the specialist for her teeth (they deal with cancer patients going through chemo that need dental work done) the chemo eats away the enamel of the teeth and there for the teeth start to rot away. So from Pearlz about the apt.
" 5 teeth need to come out maybe 6. 3 need fillings. Plus a descaleing and cleaning. Ohip covers the extractions thank God it would be 700$ but I have to pay for cleaning and the partial. They think I need 2 partials top and bottom. Probably $600 each they said. I'm losing two front teeth at the top. The one in the back top that's broken and on the bottom the two molars I have left and maybe the wisdom tooth that's still under the skin."
So this cost will really be hard for the family to cover. They are looking into a few other programs to help out but most only cover the same as ohip to have the teeth pulled. So now the heart rencher news
"Went to see the radiologist today. We thought we were dealing with 2 tumours until yesterday "Feeling overwhelmed and anxiety is through the roof. Saw my MRI report today and found out there is 7 tumors. Yes I said 7. All on the left side. All measuring between 11 and 22 cm!!!! Dr. Caudrellier, the radiation oncologist said that he can't say that radiation will relieve the nerve pain but he totally understands and see why I'm in so much pain and why I can barely walk. He's scheduling a cat scan to get imging to set up a radiation protocol so that major organs are safe. He said since this isn't a regular case it will take him and his colleagues some time to plan and calculate everything. Not sure if I'm going through with it yet as there is no guarantee it will help. Its something I need to really think about. The doctor who did my csection said there was a lot of scar tissue in there already. I will think about for as few weeks as they plan." What would you do if you were in my situation ??? ( Pearlz has asked for what others think she should do.)
So this is it she has 1 more round of chemo starting tomorrow jan 30th and then she need to make a decision on if she will try the radiation or not. We are trying to keep her spirits up for the kids. We have had THE TALK with her oldest on what mom is doing to fight this. And we have all had a good long cry. Pearlz has gotten everything prepared for that time when it comes. But we are hopping she will still have many years to come, If the tumers staying stable. Please share her story to everyone and ask for prays of health to come her way.
Until next update witch I hope will be be better news take care till then