Never gonna be the same

Cuddling with my son last night, holding his still super skinny self just reminds me more and more of what the treatment left us with. Don’t get me wrong I am so thankful he is still here to hold , but unlike most people I do not thank conventional treatment for that! I do not have a close relationship with his oncologist, in-fact I have to try not to hate the man. I know hate is a strong word, but in my eyes he almost killed our son by continuing to follow his protocol and to my knowledge he has no remorse for doing so. You see I view the conventional treatment as a death sentence for most! And because I have that view I feel even more alone sometimes in this “cancer” world. I think only a handful of people really understand me, the rest probably think I am a crazy and ungrateful person.

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( This picture is Tybo Holding his baby brother before he was diagnosed with brain cancer)

While that cannot be further from the truth, they just don’t understand why I am the way I am. I believe it’s because I prayed for wisdom the whole time Tybo was going through treatment and my eyes are opened to another way at looking at the whole grand scheme of things. That being said I cannot help but regret whole heartedly putting our sweet boy through that awful treatment.  He was only 3 by the way and they said that was the only way to save his life.  What choice did we really have? Do this treatment or have our son taken away and they would have done it on him anyway. Not really any good choices at all. I really wish we would have not been rushed into a hasty decision that ultimately I regret. This makes me so sad and mad all at once! Why are we considered bad parents if we don’t want to poison our children?

Maybe others feel the same as I do they just hide the feelings because they too feel they have no choice but to follow treatment! And I get that, I really do! But can’t we be honest with each other and just say it is wrong that we don’t have any good choices in the matter! Not a day goes by that I don’t mourn the loss of how our son used to be, yes he is still with us but that treatment did so much damage to his tiny body that I am fearful he with never regain what he once had. Out of everyone in our family, I feel like I am the most hopeful that he will overcome all the odds, but I would be lying if I told you doubt still haunts me! I am thankful that he is still with us but I do not thank the doctors for that! It might sound super religious or cliche but I give all glory, honor and praise to God for Tybo’s healing from cancer.

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Why don’t I praise the oncologist and doctors you ask? Because in my eyes their treatments did more damage than good. Sad to think that way but it’s true! You would not believe how many have reached out to me saying the conventional treatment has failed their child as well! I know I am not alone in that aspect! I just wish I had a support group of people who I could vent to that felt the same way I do. So many others love their doctors and trust their treatments, but that’s not me as much as I would love to have a good relationship with oncology doctor, I just can’t. I believe there are good doctors. out there. But when most oncologists are poisoning patients I cannot get along with someone who keeps treating patient after patient with the same results! I CAN’T HELP BUT THINK THE MONEY THEY MAKE FROM THESE TREATMENTS IS CLOUDING THEIR JUDGMENT!

So please if you are a cancer mom or dad and you are reading this, don’t get me wrong, I am not judging you. On the contrary, I feel for you! I know what it is like to have no good options in treatment for our critically ill children! This blog helps me get my feelings out! It helps me not only process those feelings but maybe one day connect with like-minded parents who know exactly what I am feeling! Some days I want to start a movement and then I remember the battle I fight everyday right here at home for quality of life for my son keeps me so busy I barely have time to write in this blog! Maybe one day! I can hope that if not me then someone else will stand up for not only their child but children all over the world fighting cancer! No one should be forced chemo and radiation especially if they don’t work for everyone!

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I know there have been some cases that have been “healed” through that cut, burn, poison method, or maybe they have just went into remission for a little while and then they got another type of cancer altogether. So some would argue it bought them more time, but what is that time if it causes more grief and suffering. What if there was a better way to treat these patients young and old. I believe there is and we just need to fight for our children to have better options. I have watched testimony after testimony on Chris beat cancer’s website of people fighting cancer with natural things and having better results than those who were treated conventionally ! Trust me, I know the conventional treatment fails more patients than it helps.

I speak of these things because we must bring the darkness of pediatric cancer to light! People need to know there are better ways of healing cancer! The truth needs to get out! I know that no loving mother or father really wants to put their kids through these treatments! Because they see first hand what it does to them. Cancer kids are not just cute bald people who need more chemo treatments, they need a real cure that won’t damage their bodies for years to come! Sorry if I offended anyone with this post because that is not my intent! I know as a cancer parent you don’t have many options but I think we should help each other learn by sharing what has helped heal one may help others heal as well.

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I have to go now, the beast mode has come out in my son and he is yelling and snorting at me. No really, I am not joking,  that is what the treatment has done to him, he is now on keppra for seizures; he now hollers at and hits me when he doesn’t get his way. But what can I do, there are no better options for seizures that I know of. Yes, he is already on cbd oil for the seizures, but he still has them, I thank that good ol’ conventional treatment for all of these issues! He is also on a medicine for his thyroid which the radiation fried. I will never thank his doctors that sent him home half dead and his body full of poison. But I will thank God for teaching me how to use natural remedies to bring him back to life and putting people in our life to help Tybo get better!

I just wish some days I could go back in time and tell those drs what I really thought of their clinical trial! Now my life will never be the same! I wish we did not have to learn such lessons the hard way! You see others had warned me before we started this treatment that it would not have good results. Did I believe them? Yes. Did I hate them? No, they were trying to help. But what choices did I have? I’ll tell you, chemo or more chemo, no good ones! Oh, Lord Jesus come back quickly! I can’t take it anymore! God bless ya’ll! Thanks for letting me get it all out here! If I didn’t I may explode!IMG_8743

(This picture above was taken just before he was sent home on hospice, he was with us but not with us, had a blank stare! He could no longer talk to us after fifth round of chemo! They gave us a week or two at best, they had no clue he would be alive 4 years later.)

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4 years of fighting

I cannot believe it has been over 4 years now since Tybo’s oncologist sent us home with no hope! It has been a very challenging 4 years with lots of ups and downs, but I cannot say how thankful I am to still have our boy with us. I have met a lot of families going through the same type of “journey,” that have not had the same outcome! My heart goes out to them, even though we did not lose our son we came very close; and the fear of still losing him after all this fighting is still in the back of my mind. (It doesn’t help when the doctors are expecting cancer to come back at every follow-up!) Nothing can prepare a parent to lose their child, I have told myself that I would rather him be in heaven than suffering on this earth. But I know the truth would be that I would be very sad without him!

All that being said, these seizures that he has been having this past year,  have been the scariest thing we have had to walk through with him. At first we thought it was low sodium causing them and we thought we were getting a handle on his sodium levels. Now it seems to be something else altogether and the doctors don’t want to find out why he is seizing; they just want to prescribe an anti-seizing med. If you know anything about anti-seizing meds it is that most of them don’t work and just cause more problems. It is so frustrating to not be able to fix this problem, because Tybo was doing so well before all of this. This seems like the largest hurdle in the 4 years that he has been recovering.   As his mother, I am so ready for him to not have to fight anymore.

Every time he seizes, I think this could be it, this could be the one that takes him from us. Even though I always try to think positive, the seizures scare me that bad, so much that I can no longer think “happy” thoughts in the heat of the moment. I can not even begin to imagine how my friends with epileptic children make it through the day! They are definitely stronger than me! I try and stay strong but I turn to mush on the inside. I really hope we find an answer soon, hoping to see an acupuncturist this month. Praying she is the Godsend I need to get him back on track to the complete healing! I wish I could bring him to the best naturopathic  doctor that money could buy, but I don’t have that kind of money! I am doing the best with what God gives me and I just pray it is enough for our sweet boy.

I hope this post does not sound like I am just rambling on, it’s hard to collect my thoughts most of the time. I want to write more in this blog, when my creative juices are flowing I usually cannot get them out because too many other things need my attention at that moment.  So I lose what I wanted to talk about, because I forget what I was going to say or focus on. Lord help me to get my thoughts together! I want others to be blessed somehow by our trials, I want to give hope to others and also show others that they are not alone when they face trials. I felt so alone when Tybo was going through treatment, even though it was a lie from the enemy, and our feelings can be so deceptive.  God has shown me the truth and he never has left us.

Pediatric cancer has definitely been the hardest thing I have faced in my life! I really feel like it was sent to break me and everything that I love!  I think my out look on this whole “journey” is so different than most, that’s why I want to share it hoping to connect with the few that think like me or even just give a different perspective to those who think differently. We all are different and that is ok; I think we can learn from each other in so many ways. We are better together! You are not alone and I want to encourage you in that! Let’s walk through this together and encourage one another to never give up! I hope to write more here and to bless more with our story!

God bless you and yours

Survival mode

 

 

I wish I had a protocol that everyone with a child or loved one with cancer could follow and it work successfully for everyone, but I don’t. Mostly because when your child is sent home on hospice you are throwing everything at the cancer that you can and you are not worried about keeping a log of what you did and how you did it.  Besides, I do not take 100% credit for our son’s healing, it was not just everything I did right that saved his life. I was in survival mode and I used the wisdom God gave me, because lets face it, not all the information on the Internet is true and trustworthy. I really feel like the Lord gave me discernment about different things I read online about “curing” cancer naturally. I had peace about trying some things more so than others.

I can tell you that an all organic plant-based diet has made a huge impact on our son’s recovery! Liquid Hope has been the best “medicine” for our son whose body was ravaged by chemo and radiation. “Let food be thy medicine and medicine be thy food.― Hippocrates. I believe that food is our best form of medicine and it can be the best or worst, because I believe you are either feeding the disease or killing it by the nutrients you absorb from your food. Cancer unfortunately feeds off of sugar, it helps cancer grow more rapidly. And I believe it tells you to eat more and more sugary food; or it’s the steroids talking or both. Either way when we found out that sugar fed cancer, we knew we wanted a better diet for our son, to have a fighting chance against cancer. That’s why his feeding tube was a blessing! Of course he was on the yucky high fructose corn syrup feeding tube formula when he was going through the clinical trial but when he was sent home on hospice that was the first request we made from our doctors was a prescription for Liquid Hope. The same company that makes liquid hope now makes a pediatric formula called Nourish. 

Let me add that our son’s oncologists did not inform us that sugar fed cancer, we found that out on our own as well. If your child or loved one with cancer does not have a feeding tube I pray you are able to train them to eat better by mouth. The more greens the better and as organic as you can get the veggies the better. Research the fruits and veggies that are known to fight cancer,Top 12 Cancer-Fighting Foods, make every effort to get those into their daily feedings.  Chris beat cancer has a lot of info on his page about eating right to fight this disease. You have to be consistent! More info on cancer fighting foods 

Learning about probiotics was so important for our son as well! Gut health is so important to healing! Tyler was on so many antibiotics while going through chemo that it had destroyed all his beneficial bacteria in his gut. Not to mention that he was bed ridden through most of the treatment and the morphine and chemo constipating him. When he was sent home not only did we switch his diet but also got him on a 2x a day dose of quality probiotics! Your gut is your second brain.  I have learned a lot about gut health from Dr. Axe.

 

Cancer Tutor there is a wealth of knowledge here as well. There is so much info online about natural therapies but no credit is given to these because it is all spread by word of mouth. No doctors unless they are natural doctors will say they recommend any of these therapies. Doctors only know medicine and only make money by prescribing pharmaceuticals. So your doctors are not educated in these natural therapies, so they could not give you an informed opinion, if they know nothing about them. In our experience with our son’s oncologist, neurologist, endocrinologist , nutritionist, etc they have all told us to stay away from the natural supplements and juicing because they did not know how they would interact with their treatments. Natural Therapies You would have to consult a naturopathic doctor to get these natural therapies recommended for your loved one with cancer. 

Doctors afraid to “prescribe” life-saving medical marijuana video click here to watch. I know cannabis use is still controversial especially with children since we have been told all our lives that it has no medicinal use. But more and more stories of healing from this plant are coming out into the light. From people not only with cancer but suffering from other diseases or life threatening conditions like C.O.P.D. and seizures. This retired judge treated his COPD with cannabis oil Doug Bench’s testimony. In this video the parents share their daughter’s testimony of using high cbd oil for her seizures click here to watch.

I can tell you that the Rick Simpson protocol is no joke and not hoax! I have seen first hand and in lives of others that cannabis helps a lot who are suffering from a number of ailments, from chronic pain, PTSD, MS, autism etc. I would encourage you to do your own research on it. You will find lots of testimonies of people with no more hope that find hope when they start taking this oil. So I would also tell you if you are able to get your hands on some quality, lab tested FECO ( full extract cannabis oil, 1:1, whole plant not just cbd only for cancer patients need a little thc), I would highly recommend trying this oil with a loved one with cancer. If it doesn’t save their life, it will definitely improve their quality of life if nothing else.  Cannabis Oil Testimonials 

I believe without a doubt this plant was created for healing purposes and common man has demonized it out of greed. They don’t want cannabis legal because they make so much money keeping it illegal. Please watch this documentary, if you did not catch it on CNN, Dr. Sanjay Gupta

Disclaimer: I am not a doctor.
I’m just a mother who is sharing what we did with our son after he was sent home on hospice. All information presented on this website should be regarded as friendly advice and opinions based on my experience and research. This information is for educational purposes and should not be interpreted as medical advice. I’m not making an attempt to prescribe any medical treatment — and the information contained on this website is not intended to replace a one-on-one relationship with a doctor or qualified health practitioner. My statements have not been evaluated by the Food and Drug Administration and the information on this website is not intended to diagnose, treat, cure, or prevent any disease. I am also not a registered dietician dispensing dietary advice.

 

Here goes everything

I have been inspired to tell our story via blog, I feel it is important enough to share with others. I would love to write a book as well, one day, but this will help me get my feelings and thoughts out until then. Hopefully it will also help others, when they read it they will maybe be able to relate to some of my struggles, hopes and fears. I will try to post often as possible. It is hard to get my thoughts in order lately because my brain is all over the place. Where do I start?

We went to this event called The Family Cafe, this past weekend and it was amazing! I only got to sit in on 1 full workshop and it was the how to blog one. It was so inspiring because the man who spoke on this topic was honest, down to earth and captivating with his stories. He was very witty also! His name is Howard Moon, his blog is called “part of my brain died, ” he told us to write about what we are passionate about! This talk on blogging was one of my favorite parts of the event! I am not blogging to make money, I am blogging because I love to write and because I want to encourage others, while getting my thoughts and feelings out. He told us that our story mattered and only we could tell it!

We loved on all the therapy dogs we could get our hands on, loved the Gatorland show and the pool at this hotel was AMAZING! They also had a sensory room at The Family Cafe, which was so awesome and it was put on by The M.O.R.G.A.N. Project which is a national, community-based organization of volunteers whose mission is to promote awareness and facilitate support of parents caring for their children with special health care needs, and to enhance the Quality-of-Life for these special families. All in all it was a lot to take in, in such a short weekend!

I felt so encouraged and finally not like an outcast! Our son’s cancer diagnosis 3 years ago thrust us in to a world that we did not even know existed! We had no idea that there were so many children out there fighting not only cancer but other diseases as well. It was a good mix of children and adult with disabilities. Even though our son may have been the only child there because of what his cancer treatment did to him, I did not feel alone! Because it didn’t matter what your disability was there, it was like you were all family and accepted no matter what! I guess that’s why they called it The Family Cafe!

It was so nice to be around others that I knew were facing some of the struggles that my husband and I face on a daily basis. I did not get to make any new friends while we were there but I think that is because it was our first time and we were trying to navigate through all the seminars and exhibit hall with the children in tow.

I think it went well for our first time all except the meal times, because the food at the hotel was super expensive! And to leave the hotel and go grab a bite to eat was a unique chore in itself. I need to learn how to save money in food while traveling with a larger family, that is a skill I have not mastered.

I probably should have researched and asked around to the other parents how they saved money going to this every year. Once we got settled in to the hotel, I really did not want to leave! This hotel was amazing! It is the nicest hotel I have ever had the pleasure of staying at! The hotel alone lifted my spirits! It was such a blessing to be able to stay right on campus of this great event.

There are a lot of people who come to this event every year, so as big as this hotel was you could tell it was just the right size for an event like this! It was crowded there but it was such a large hotel that it wasn’t a big deal. So thankful for Hyatt Regency in Orlando for hosting this every year! It was a HUGE blessing for our family to get away and enjoy what this event had to offer!

I need to collect my thoughts and get unpacked all the way from the weekend. I just could not wait to write my first post in this blog! So excited and on fire to share my “vida loca” with all who are willing to follow along!

Hindsight is 20/20

 

IMG_9702***Disclaimer: I am not a doctor. Please consult your doctor for medical advice. This is not medical advice. This blog is intended for educational purposes only. ****

If I knew back then what I know now…, who hasn’t thought this before. I do not know why things happen like they do but I like to think that there is a reason behind it all.

Our son no longer has a voice, so I will be telling his story from my perspective until, one day he can share it for himself. I want to share our son’s testimony of going from hospice to healing with as many people as possible. So please share this blog and make it reach to all those who could use some hope. I believe his story is important and we need to share it.  Because most people who are sent home on hospice just give up and really believe there is no more hope. If God had not given us knowledge of natural things to use for healing we would have given up as well.  It was so miserable, watching and just standing by while our son was going through that awful clinical trial that almost took his life. It was hard to find joy daily and I was very sad watching him get worse. I had to journal my feelings and cry out to Jesus daily. There is nothing like watching your child suffer! Let me just say that without God I would not have been able to get through any of this! I am not that strong and not that wise!

God had a plan for all of this even though I couldn’t see the light at the end of the dark tunnel, I just had to trust him. God brought so many people into our life at the right time who told us about natural things to try and also helped us get those natural things that we never could have gotten on our own.

Our “worldly wisdom” that says your only hope is to cut the cancer out, burn yourself with radiation and poison yourself to get well! Well common sense would tell you that sounds so backwards, but we are so brain washed nowadays and just blindly follow the herd. Really do you believe you must poison yourself to get well?  And it is just my opinion or belief but if anyone is “healed” through this cut, burn and poison method, it is by the grace of God and not the treatment itself.  I know parents don’t really have a choice, unless your child is sent home on hospice like ours was. But adults, you have a choice what treatment you how you want to treat your cancer, some of you just don’t know that there is a better way! I am here to tell you there is a better way.

God opened a door for us that no one could have, hospice was our door to healing for our son, when it was supposed to be a door closing! Our son was just 3 years old when he was sent home on hospice and this December he will be 7 years old. I am glad we did not give up just because the doctors said the cancer was coming back and there was nothing more they could do for him but keep him comfortable on morphine until he passed. If you were there when they sent us home, you wouldn’t believe he would have made it another few weeks, let alone make the trip home.

Once he was considered terminal, that allowed us too pursue any alternative treatments we wanted (without fear of him being taken away and forced chemo). It is a sad world we live in today when you have to worry about things like your child being taken away because you would rather try something natural first instead of something that you know is harmful. I am so glad that I had a back up plan and I was ready to put it into motion as soon as we were sent home! God took this awful cancer diagnosis/journey and turned it around for good.  I really believe this cancer “journey” was a scheme of the enemy to tear our family apart and also to ultimately test our faith.  If we never went through that hell on earth we would never be able to share such an awesome testimony of answered prayers, God’s provision and natural healing with you. He definitely turned our test into a testimony!

Tybo’s healing story is different than most, he was not instantly healed, infact he is still going through the healing process. I have clung to Psalms 41:3, “The LORD sustains them on their sickbed and restores them from their bed of illness,” my hope has always been that, God will fully restore Tybo from his sickbed! So let me tell you that not all miracles are instant and miracles are not out of your grasp! It took some work on our part, but when you are part of a miracle I believe it is much more appreciated and exciting to see your loved one improve before your very eyes! “Faith without works is useless.” James 2:20 Some naysayers might say, “Oh he is a miracle, so glad that worked for him but it’s not for me or my loved one,” and I really believe that , this miracle can be for anyone. But you can’t go into it with disbelief or half heartedly. We were committed and really believed that this was going to help him come back to life. Miracles are not out of your reach and just because God does not heal you instantly does not mean he does not want you healed.

There are lots of testimonies out there of people healing cancer naturally, you just have to seek the truth and you will find it! Natural things are not covered by insurance but we have been blessed by people donating these items to our family.  God knew we would need all those special people in our life! I thank God each and every day for every one of them! It took an army of prayer warriors and faithful people to help our family get what we needed.

Food has been the best medicine along with probiotics and many other all natural supplements! Tybo having to get a feeding tube as a result of the treatment he went through was part of his saving grace! It is one of the best blessings that came out of the horrible treatment! If children with cancer could all get a feeding tube and be on the same organic plant based diet, I believe they would have a better fighting chance. Many children with cancer do need or end up needing some type of feeding tubes but the formulas that they are given are laden with high fructose corn syrup! Most parents are scared of their children having to have a feeding tube but I saw it as an opportunity to be able to juice fresh organic greens for him and give him supplements he would never take by mouth. So my message to parents facing the scare of “Oh no my child has to get a feeding tube” it’s not the worse thing that could happen trust me! It was the best thing that happened out of a very bad situation!

I never thought one of our children would ever be diagnosed with cancer! It is becoming less rare and we need to all learn how to prevent it from happening to us or our loved ones, young and old. Also have better and more effective treatments in the USA would be something worth fighting for. I believe that if you believe in something you stand up for what you believe in!

Below is the link to my interview with Chris Wark, from http://www.chrisbeatcancer.com for those who haven’t seen it already, even if you have please share it! Chris has a wealth of knowledge on his website! I did not type out everything I did with our son because I don’t have a specific “protocol” to follow but I am happy to answer anyone’s questions or to go more in depth about certain aspects of what natural things we did with him. Just feel free to ask me.

From Hospice to Healing