https://elonnascorner.com/ Tue, 19 May 2026 12:06:22 +0000 MyBB https://elonnascorner.com/showthread.php?tid=1011 Mon, 29 Jan 2024 16:14:09 +0000 https://elonnascorner.com/showthread.php?tid=1011
We learned later that it was TAM (a transitory form of leukemia, that resolves itself without treatment/intervention). In a couple of weeks, his white blood cells went back to normal, and when 8 months old, he did not have blasts in his blood anymore. 

We also performed some genetic tests on him, and found out that he had a mutation in the gene GATA1, and also in half of the cells of his bone marrow that were studied he had 3 of the 21st chromosome. He is not DS [Down's syndrome] (he does not look like it, and he is developing normally, so we have no reason to believe it). However, in his blood he has the same mutations that usually cause AMKL (his form of acute leukemia) in kids with DS.

A couple of weeks ago (he is 1y10mo old now), we learned that he has indeed developed AMKL. He is anemic, his platelets are low, and he has blasts and other leukemic cells in his blood again. The doctor said this time it is acute and not transitory, and recommended chemo, saying it would only be a 6 month treatment (instead of the 2-year period common for other types of acute leukemia).

We have started him on Protocel 23 [is this the correct one, or would the 50 formula be preferable?] a little bit over a week ago. We are giving about 1/4 tsp every 4h30min or so. We have noticed that he is tired (taking 1 nap more than usual, although he was doing that before as well, so we are not sure this is his anemia or Protocel, or both). He has had some small amount of white mucous on his nose (without other cold/flu symptons); we don't see this every day though. Since he started, we have seen 1 loose stool (although not a diarrhea, but less consistent than usual), but no white matter so far. We also noticed that his urine is getting darker (brown/orange). He is also very irritated lately, although his appetite seems to be improving a little.

One of his more natural doctors, prescribed an iron oral supplement and a vitamin B12 injection to help with the anemia/deficiency. We have given him the injection, but we fear the iron supplement would interfere with Protocel/feed the cancer. In any case, we want to avoid transfusions (because of mRNA), but also help alleviate the anemia, while Protocel takes its time to work.

We were giving him the pau d'arco tea (for the anemia and leukemia) before Protocel arrived, but we were told that it might interfere with Protocel. So, we stopped it.

Also, his belly (liver + spleen) is more swollen than before, but we are not sure if this is due to lysing or leukemia itself.

Is there anyone else here who has had a similar situation (a young child with leukemia/other cancer)? I would love to hear your thoughts and experience on this.

Any advice and encouragement is welcome

Felipe.]]>
We learned later that it was TAM (a transitory form of leukemia, that resolves itself without treatment/intervention). In a couple of weeks, his white blood cells went back to normal, and when 8 months old, he did not have blasts in his blood anymore. 

We also performed some genetic tests on him, and found out that he had a mutation in the gene GATA1, and also in half of the cells of his bone marrow that were studied he had 3 of the 21st chromosome. He is not DS [Down's syndrome] (he does not look like it, and he is developing normally, so we have no reason to believe it). However, in his blood he has the same mutations that usually cause AMKL (his form of acute leukemia) in kids with DS.

A couple of weeks ago (he is 1y10mo old now), we learned that he has indeed developed AMKL. He is anemic, his platelets are low, and he has blasts and other leukemic cells in his blood again. The doctor said this time it is acute and not transitory, and recommended chemo, saying it would only be a 6 month treatment (instead of the 2-year period common for other types of acute leukemia).

We have started him on Protocel 23 [is this the correct one, or would the 50 formula be preferable?] a little bit over a week ago. We are giving about 1/4 tsp every 4h30min or so. We have noticed that he is tired (taking 1 nap more than usual, although he was doing that before as well, so we are not sure this is his anemia or Protocel, or both). He has had some small amount of white mucous on his nose (without other cold/flu symptons); we don't see this every day though. Since he started, we have seen 1 loose stool (although not a diarrhea, but less consistent than usual), but no white matter so far. We also noticed that his urine is getting darker (brown/orange). He is also very irritated lately, although his appetite seems to be improving a little.

One of his more natural doctors, prescribed an iron oral supplement and a vitamin B12 injection to help with the anemia/deficiency. We have given him the injection, but we fear the iron supplement would interfere with Protocel/feed the cancer. In any case, we want to avoid transfusions (because of mRNA), but also help alleviate the anemia, while Protocel takes its time to work.

We were giving him the pau d'arco tea (for the anemia and leukemia) before Protocel arrived, but we were told that it might interfere with Protocel. So, we stopped it.

Also, his belly (liver + spleen) is more swollen than before, but we are not sure if this is due to lysing or leukemia itself.

Is there anyone else here who has had a similar situation (a young child with leukemia/other cancer)? I would love to hear your thoughts and experience on this.

Any advice and encouragement is welcome

Felipe.]]> https://elonnascorner.com/showthread.php?tid=953 Tue, 31 Mar 2015 00:55:39 +0000 https://elonnascorner.com/showthread.php?tid=953 In February 2015, our daughter (then 5 months old) was diagnosed with infantile fibrosarcoma (i.e., soft tissue cancer, which in our case is in the right lower leg muscle). The tumor is inoperable. We are exploring alternative treatments for our baby and came across Protocel in Tanya Harter Pierce's book, Outsmart Your Cancer. Any advice on which formula (#50 vs. #23) and the recommended dose (our daughter is now 7 months old) would be much appreciated.
Thank you,
Ned]]> In February 2015, our daughter (then 5 months old) was diagnosed with infantile fibrosarcoma (i.e., soft tissue cancer, which in our case is in the right lower leg muscle). The tumor is inoperable. We are exploring alternative treatments for our baby and came across Protocel in Tanya Harter Pierce's book, Outsmart Your Cancer. Any advice on which formula (#50 vs. #23) and the recommended dose (our daughter is now 7 months old) would be much appreciated.
Thank you,
Ned]]> https://elonnascorner.com/showthread.php?tid=950 Tue, 10 Mar 2015 22:47:02 +0000 https://elonnascorner.com/showthread.php?tid=950
I ordered Protocel 50 with paw paw capsules and im hoping to start them today a Week before I start a week of high dose chemo and then I will start Protocel again once the chemo is finished. Can anyone else give me information or help me on this journey? I'm willing to try any alternative method that could help me? Thankyou]]>
I ordered Protocel 50 with paw paw capsules and im hoping to start them today a Week before I start a week of high dose chemo and then I will start Protocel again once the chemo is finished. Can anyone else give me information or help me on this journey? I'm willing to try any alternative method that could help me? Thankyou]]> https://elonnascorner.com/showthread.php?tid=736 Wed, 28 Nov 2012 17:48:39 +0000 https://elonnascorner.com/showthread.php?tid=736 So we have spent the last 5 years on a roller coaster ride of ups and downs. We have tried many different natural/alternative therapies.
Kurt has right side weakness to the point his right hand is almost useless and he wears a brace in his right ankle to help with his walking. Over the past year his right side weakness has gotten worse and his drooling has increased. So we have decided to start him on Protocel.
I am proud to say that he goes to school and is in the 1st grade learning how to read and write! Even though it is a struggle for him he is doing very well, all As and Bs! I have a formula 23 schedule worked out for him and he will have to have one dose while he is at school. I am pretty sure that the school will not give it to him without a prescription but am unsure of this. His older brother is in the same school and he should be able to give Kurt his dose.
We are praying that God will use this to heal Kurt!

Denise
]]> So we have spent the last 5 years on a roller coaster ride of ups and downs. We have tried many different natural/alternative therapies.
Kurt has right side weakness to the point his right hand is almost useless and he wears a brace in his right ankle to help with his walking. Over the past year his right side weakness has gotten worse and his drooling has increased. So we have decided to start him on Protocel.
I am proud to say that he goes to school and is in the 1st grade learning how to read and write! Even though it is a struggle for him he is doing very well, all As and Bs! I have a formula 23 schedule worked out for him and he will have to have one dose while he is at school. I am pretty sure that the school will not give it to him without a prescription but am unsure of this. His older brother is in the same school and he should be able to give Kurt his dose.
We are praying that God will use this to heal Kurt!

Denise
]]> https://elonnascorner.com/showthread.php?tid=711 Thu, 06 Sep 2012 01:35:08 +0000 https://elonnascorner.com/showthread.php?tid=711
My daughter Abigail was diagnosed with myelodysplastic syndrome 4 and a half yrs ago; a type of bone marrow failure or pre leukemia.

She had her first bone marrow transplant on May 15, 2008 with her brother being her donor. Then relapsed 1 and a half yrs later. She underwent a second transplant also with her brother as her donor, again to relapse 3 months later. So they did an unrelated bone marrow transplant only 10 months later to relapse again.

So they put her on vidaza once a month to get it back under control for 6 months and she ended up relapsing with acute myeloid leukemia and then underwent 18 days of chemo followed by a stem cell boost from her previous donor, which gave her a disease called graft vs host disease which is supposed to be the donor cells attacking the leukemia cells. The donor cells recognize the leukemia cells as foreign and kill them. This did work for a couple of months than in June of this year tumors started popping up on her head.

They biopsied them and found leukemia, so yet another relapse. They sent us home with no more options.

Long story short we found out about Biosuperfood and supplements to strengthen immune system, and finally Protocel 50 came into the picture. She has only been on it for a week, but today her blasts are now excessive and her platelets are clumping for the past two weeks; not sure why, we know they are low.

So any input is appreciated. I just know I have to still have hope and let me tell you how hard that is when you watch your child go through this pain.


Abigail's Mom


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Editing Reasons:
1. Changed title of thread somewhat.
2. Add in capitals and blank lines between paragraphs for better ease of reading./elonna
]]>
My daughter Abigail was diagnosed with myelodysplastic syndrome 4 and a half yrs ago; a type of bone marrow failure or pre leukemia.

She had her first bone marrow transplant on May 15, 2008 with her brother being her donor. Then relapsed 1 and a half yrs later. She underwent a second transplant also with her brother as her donor, again to relapse 3 months later. So they did an unrelated bone marrow transplant only 10 months later to relapse again.

So they put her on vidaza once a month to get it back under control for 6 months and she ended up relapsing with acute myeloid leukemia and then underwent 18 days of chemo followed by a stem cell boost from her previous donor, which gave her a disease called graft vs host disease which is supposed to be the donor cells attacking the leukemia cells. The donor cells recognize the leukemia cells as foreign and kill them. This did work for a couple of months than in June of this year tumors started popping up on her head.

They biopsied them and found leukemia, so yet another relapse. They sent us home with no more options.

Long story short we found out about Biosuperfood and supplements to strengthen immune system, and finally Protocel 50 came into the picture. She has only been on it for a week, but today her blasts are now excessive and her platelets are clumping for the past two weeks; not sure why, we know they are low.

So any input is appreciated. I just know I have to still have hope and let me tell you how hard that is when you watch your child go through this pain.


Abigail's Mom


=====================================\
Editing Reasons:
1. Changed title of thread somewhat.
2. Add in capitals and blank lines between paragraphs for better ease of reading./elonna
]]> https://elonnascorner.com/showthread.php?tid=346 Tue, 05 Apr 2011 17:15:36 +0000 https://elonnascorner.com/showthread.php?tid=346 Our son Danny was diagnosed with pontine glioma last September (turn in his eye brought us from an ophthalmologist to a CT to an MRI scan in a matter of days, with a big shock when we were told that this was an inoperable tumor because of the location and outside of radiotherapy there is nothing that can be done). after initial panic, a round of radiotherapy and an MRI scan that showed a significant reduction in the size of the tumor, we are now on the protocel journey...

Danny has been taking protocel for about 5 weeks now. We have just moved up to the 1/4 spoon 5 times a week (protocel 23). Now, here's my question:
from reading "outsmart your cancer" it appears that 23 is the right formulation for brain tumors, although depending on how I read things we may need to move him to protocel 50. Could anyone out there please advise on which formula is best for Danny, I'll need to order the next batch this week and I don’t want to get the wrong one, mainly because I don't want to delay the transition, if I need to make one.

would really appreciate a response to this one ASAP.
Thanks,
John]]> Our son Danny was diagnosed with pontine glioma last September (turn in his eye brought us from an ophthalmologist to a CT to an MRI scan in a matter of days, with a big shock when we were told that this was an inoperable tumor because of the location and outside of radiotherapy there is nothing that can be done). after initial panic, a round of radiotherapy and an MRI scan that showed a significant reduction in the size of the tumor, we are now on the protocel journey...

Danny has been taking protocel for about 5 weeks now. We have just moved up to the 1/4 spoon 5 times a week (protocel 23). Now, here's my question:
from reading "outsmart your cancer" it appears that 23 is the right formulation for brain tumors, although depending on how I read things we may need to move him to protocel 50. Could anyone out there please advise on which formula is best for Danny, I'll need to order the next batch this week and I don’t want to get the wrong one, mainly because I don't want to delay the transition, if I need to make one.

would really appreciate a response to this one ASAP.
Thanks,
John]]> https://elonnascorner.com/showthread.php?tid=323 Mon, 14 Mar 2011 05:52:39 +0000 https://elonnascorner.com/showthread.php?tid=323
Abigail had not been feeling well for a couple of weeks (fever, RSV-sounding cough, lethargy). On Saturday, January 15, Annabeth noticed a lump on Abigail's lower neck near her shoulder. They took her to the urgent care and were told to take her to a children's hospital for blood work to determine what it might be. After drawing blood (which Abigail HATED), x-rays of chest and abdomen, another IV, and a CT scan, the doctors believed it to be a pediatric cancer called Neuroblastoma. The tumor starts on her left kidney/adrenal gland and works its way up through her torso, behind her heart, and surrounds her aorta artery.

A surgery was set for Monday, January 17 for the doctors to get a biopsy of the tumor as well as a biopsy of Abigail's bone marrow.

Saturday night they put Abigail in PICU (pediatric ICU) and decided to drain the fluid around her lung that night instead of waiting for Monday. The surgeon inserted a tube (big, long thing) in between her ribs and lung muscle. The lung was collapsed, and the area was full of fluid. They drained an insane amount of fluid.

Sunday she remained in that state with an IV, blood pressure cuff, oxygen monitor on her toe, tube going into her chest, and pediatric cables taped to 3 places in her back. She received morphine every 2 hours because adult patients report that chest tubes are extremely painful to have in.

Sunday night was not a good night for Abigail. Her breathing became extremely labored, and she did not look good.

On Monday the doctors were able to move her surgery time up 1.5 hours to try to help her. The surgery went well, and the Goss family was so very grateful!

She was in PICU for 3 weeks, most of that time fully sedated and intubated to allow her lungs time to heal. The tumor had complicated her organs and was preventing lymph from draining normally; she had extreme edema. She received one round of chemotherapy while sedated.

We finally got discharged, only to return the next day because she was vomiting uncontrollably--diagnosed with rotavirus ---the common childhood 'stomach bug'!!!

Finally got over all that; we started her on Protocel. Decided she needed one more round of chemo to keep the tumor in control and to give Protocel time to work. I hate chemotherapy, but we felt inspired and at peace with the decision. She made it through remarkably well.

Her oncologist says she has had a 92% decrease in tumor size!!! And that was only from round 1 of chemo. So we feel she has a really good path to start Protocel on.

Neuroblastoma is a childhood cancer that is very rare, and usually the child is born with it and it takes some time to detect.


======================
Editing Reason: Changed name of subject line just slightly.]]>
Abigail had not been feeling well for a couple of weeks (fever, RSV-sounding cough, lethargy). On Saturday, January 15, Annabeth noticed a lump on Abigail's lower neck near her shoulder. They took her to the urgent care and were told to take her to a children's hospital for blood work to determine what it might be. After drawing blood (which Abigail HATED), x-rays of chest and abdomen, another IV, and a CT scan, the doctors believed it to be a pediatric cancer called Neuroblastoma. The tumor starts on her left kidney/adrenal gland and works its way up through her torso, behind her heart, and surrounds her aorta artery.

A surgery was set for Monday, January 17 for the doctors to get a biopsy of the tumor as well as a biopsy of Abigail's bone marrow.

Saturday night they put Abigail in PICU (pediatric ICU) and decided to drain the fluid around her lung that night instead of waiting for Monday. The surgeon inserted a tube (big, long thing) in between her ribs and lung muscle. The lung was collapsed, and the area was full of fluid. They drained an insane amount of fluid.

Sunday she remained in that state with an IV, blood pressure cuff, oxygen monitor on her toe, tube going into her chest, and pediatric cables taped to 3 places in her back. She received morphine every 2 hours because adult patients report that chest tubes are extremely painful to have in.

Sunday night was not a good night for Abigail. Her breathing became extremely labored, and she did not look good.

On Monday the doctors were able to move her surgery time up 1.5 hours to try to help her. The surgery went well, and the Goss family was so very grateful!

She was in PICU for 3 weeks, most of that time fully sedated and intubated to allow her lungs time to heal. The tumor had complicated her organs and was preventing lymph from draining normally; she had extreme edema. She received one round of chemotherapy while sedated.

We finally got discharged, only to return the next day because she was vomiting uncontrollably--diagnosed with rotavirus ---the common childhood 'stomach bug'!!!

Finally got over all that; we started her on Protocel. Decided she needed one more round of chemo to keep the tumor in control and to give Protocel time to work. I hate chemotherapy, but we felt inspired and at peace with the decision. She made it through remarkably well.

Her oncologist says she has had a 92% decrease in tumor size!!! And that was only from round 1 of chemo. So we feel she has a really good path to start Protocel on.

Neuroblastoma is a childhood cancer that is very rare, and usually the child is born with it and it takes some time to detect.


======================
Editing Reason: Changed name of subject line just slightly.]]> https://elonnascorner.com/showthread.php?tid=285 Sun, 26 Dec 2010 18:13:14 +0000 https://elonnascorner.com/showthread.php?tid=285
We are going to start Protocel. We have already done a Navarro Urine test which according to this shows a 53 and shows that the chemo helped us at least get down to a manageable level. He is having very hard time recovering for this, we can see it everyday. We feel God is leading us to NOT do the BMT and are not sure he would be able to tolerate one more dose of chemo. We are getting stronger and stronger in our resolution to avoid further chemo. Researching and prayer have helped immensely.

Looking to chat/ get feedback/encouragement from other parents on similar road.

Thanks
Tonya


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Editing Reason: Changed Title to add name as we are including names in "Tell Us Your Story Titles" due to the fact that there will eventually be many similar such cases on The Corner. Additionally, put in some paragraph lines just so it was easier to read post./elonna]]>
We are going to start Protocel. We have already done a Navarro Urine test which according to this shows a 53 and shows that the chemo helped us at least get down to a manageable level. He is having very hard time recovering for this, we can see it everyday. We feel God is leading us to NOT do the BMT and are not sure he would be able to tolerate one more dose of chemo. We are getting stronger and stronger in our resolution to avoid further chemo. Researching and prayer have helped immensely.

Looking to chat/ get feedback/encouragement from other parents on similar road.

Thanks
Tonya


===============================
Editing Reason: Changed Title to add name as we are including names in "Tell Us Your Story Titles" due to the fact that there will eventually be many similar such cases on The Corner. Additionally, put in some paragraph lines just so it was easier to read post./elonna]]> https://elonnascorner.com/showthread.php?tid=284 Sun, 26 Dec 2010 17:18:52 +0000 https://elonnascorner.com/showthread.php?tid=284
Thanks
Tonya]]>
Thanks
Tonya]]>