HELP ME SURVIVE TERMINAL DIAGNOSIS
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I am the mum of a wonderful 8 year old boy, Julian. Julian was a happy and healthy little boy until he was diagnosed with acute lymphoblastic leukaemia.
Our world fell apart when we were given the news. Julian was first diagnosed when he was 2 years old and has been through 25 cycles of chemotherapy. The chemotherapy had a devastating effect on his body and he had to learn how to walk again. Due to Julian’s treatment he was extremely poorly for many months. We battled through many cycles of chemotherapy and finally reached the maintenance stage of his treatment and we thought that everything bad was behind us. However, on one of his monthly check ups, something abnormal showed up in his blood and we knew that the Leukaemia was back and our world was ruined again. Julian started very strong chemotherapy to try to get rid of the Leukaemia again. He spent his 5th birthday in hospital and was extremely poorly due to this treatment - the gruelling chemotherapy he had was even stronger this time to get rid of the monster.Julian was always smiling and was a very happy little boy despite his treatment.
During Julian’s relapse treatment we were informed that he would need to have a bone marrow transplant from an unrelated donor. The transplant took place on the 12th October 2014 and his donor was from the USA. He had many complications after the transplant but he was very brave little soldier. One month later we were discharged home and although we still had to protect Julian from infection by keeping him in isolation, we were very happy to have our little boy back.
Six months after this bone marrow transplant, Julian was allowed to go to school and we were getting back to our normal life! Julian was a happy and healthy kid again and because he had 100% bone marrow donor in his body his prognosis was very good.
Last year on 15 September 2016, Julian had a nose bleed. We thought it was just a simple nose bleed but he lost his balance and was taken to hospital urgently. I didn’t have to look at the blood results to know that this horrible Leukaemia was back for a third time!! We were given the diagnosis that Julian had relapsed again. I thought that I was going to give up but I couldn’t and I started to look for some different options. I found CAR T CELLS IMMUNOTHERAPY, which is a very new but promising treatment for children when other types of treatment have failed. So they took Julian’s T cells and then re-engineered them to fight the Leukaemia.
Julian received the CAR T CELLS IMMUNOTHERPY treatment on 25 January 2017, and he was the first boy in Manchester to receive this treatment! One month later we found out the treatment was working and our boy was in remission! We couldn’t have been happier and again we tried to get on with a normal life.
On 5 June 2017, we found out that the Leukaemia was back again. Since that time Julian hasn’t received any treatment, because there is no medical option for him any more. So we are trying to do our best to keep him very healthy by combining a special diet, a lot of supplements and our last hope in unconventional cancer treatments.
In December 2017 doctors said that Julian probably won’t make it to Christmas. Our world felt apart, we were so devastated by that news, we gave up for a second. We gave Julian the best Christmas we could.
Julian made it past Christmas, we thought it was a miracle!
Julian's blood results were slowly improving so the doctors decided to do a bone marrow aspiration to check why a TERMINAL patient with progressive Leukeamia was getting better.
Today on the 23rd February Julians platelets are coming up and all of blood results show us that he is still bravely fighting. I just want to say that TERMINAL patients don’t have "rising platelets" . He shouldn’t be here, but he is still here and his last bone marrow test showed just only 20% LEUKAEMIA!!! Previous bone marrow test done in November 2017 showed 50% Leukaemia blasts.
We are treating Julian with a range supplements and are working really hard with his diet. Some of these are natural liposomal vitamin C, high dose vitamin D, theracurmin and endura cell. I also spend a lot of time making fresh juices. We also give Julian alkaline water which is pretty expensive , ph must be higher that 8,5 as cancer can not survive in that environment, and milk thistle. These supplements are working and boosting Julian’s immune system. All of those supplements are unfortunatelly not funded by the Nhs.
Unfortunatelly unconventional treatment and purchasing a lot of supplements costs a lot of money . We can not afford these without your help. We just want to keep our gorgeous boy with us and his little brother. I was really heartbroken to hear that our beautiful boy was terminal. You know your child is going to die but you just don't believe it.
Last month we found out Julian’s oryginal leukaemia switched from ALL TO AML with the same gene rearegement from the old but with the myloid markers so now it is different kind of leukaemia. Doctors decided to treat Julian. And They said it is just the only that case in the whole wide world, so JULIAN is just only one in a 7 billion.
He has chance to live and he will get cord blood transplant soon (april 2018).
PLEASE HELP US IN THIS HORRENDOUS TIME. Please help him survive second TRANSPLANT.
It is very sad that we can not live like a normal family. For 7years its has been like a emotional Rollercoaster and we can not see the end.
Thank you all for your help, no mater how small it is!
Our world fell apart when we were given the news. Julian was first diagnosed when he was 2 years old and has been through 25 cycles of chemotherapy. The chemotherapy had a devastating effect on his body and he had to learn how to walk again. Due to Julian’s treatment he was extremely poorly for many months. We battled through many cycles of chemotherapy and finally reached the maintenance stage of his treatment and we thought that everything bad was behind us. However, on one of his monthly check ups, something abnormal showed up in his blood and we knew that the Leukaemia was back and our world was ruined again. Julian started very strong chemotherapy to try to get rid of the Leukaemia again. He spent his 5th birthday in hospital and was extremely poorly due to this treatment - the gruelling chemotherapy he had was even stronger this time to get rid of the monster.Julian was always smiling and was a very happy little boy despite his treatment.
During Julian’s relapse treatment we were informed that he would need to have a bone marrow transplant from an unrelated donor. The transplant took place on the 12th October 2014 and his donor was from the USA. He had many complications after the transplant but he was very brave little soldier. One month later we were discharged home and although we still had to protect Julian from infection by keeping him in isolation, we were very happy to have our little boy back.
Six months after this bone marrow transplant, Julian was allowed to go to school and we were getting back to our normal life! Julian was a happy and healthy kid again and because he had 100% bone marrow donor in his body his prognosis was very good.
Last year on 15 September 2016, Julian had a nose bleed. We thought it was just a simple nose bleed but he lost his balance and was taken to hospital urgently. I didn’t have to look at the blood results to know that this horrible Leukaemia was back for a third time!! We were given the diagnosis that Julian had relapsed again. I thought that I was going to give up but I couldn’t and I started to look for some different options. I found CAR T CELLS IMMUNOTHERAPY, which is a very new but promising treatment for children when other types of treatment have failed. So they took Julian’s T cells and then re-engineered them to fight the Leukaemia.
Julian received the CAR T CELLS IMMUNOTHERPY treatment on 25 January 2017, and he was the first boy in Manchester to receive this treatment! One month later we found out the treatment was working and our boy was in remission! We couldn’t have been happier and again we tried to get on with a normal life.
On 5 June 2017, we found out that the Leukaemia was back again. Since that time Julian hasn’t received any treatment, because there is no medical option for him any more. So we are trying to do our best to keep him very healthy by combining a special diet, a lot of supplements and our last hope in unconventional cancer treatments.
In December 2017 doctors said that Julian probably won’t make it to Christmas. Our world felt apart, we were so devastated by that news, we gave up for a second. We gave Julian the best Christmas we could.
Julian made it past Christmas, we thought it was a miracle!
Julian's blood results were slowly improving so the doctors decided to do a bone marrow aspiration to check why a TERMINAL patient with progressive Leukeamia was getting better.
Today on the 23rd February Julians platelets are coming up and all of blood results show us that he is still bravely fighting. I just want to say that TERMINAL patients don’t have "rising platelets" . He shouldn’t be here, but he is still here and his last bone marrow test showed just only 20% LEUKAEMIA!!! Previous bone marrow test done in November 2017 showed 50% Leukaemia blasts.
We are treating Julian with a range supplements and are working really hard with his diet. Some of these are natural liposomal vitamin C, high dose vitamin D, theracurmin and endura cell. I also spend a lot of time making fresh juices. We also give Julian alkaline water which is pretty expensive , ph must be higher that 8,5 as cancer can not survive in that environment, and milk thistle. These supplements are working and boosting Julian’s immune system. All of those supplements are unfortunatelly not funded by the Nhs.
Unfortunatelly unconventional treatment and purchasing a lot of supplements costs a lot of money . We can not afford these without your help. We just want to keep our gorgeous boy with us and his little brother. I was really heartbroken to hear that our beautiful boy was terminal. You know your child is going to die but you just don't believe it.
Last month we found out Julian’s oryginal leukaemia switched from ALL TO AML with the same gene rearegement from the old but with the myloid markers so now it is different kind of leukaemia. Doctors decided to treat Julian. And They said it is just the only that case in the whole wide world, so JULIAN is just only one in a 7 billion.
He has chance to live and he will get cord blood transplant soon (april 2018).
PLEASE HELP US IN THIS HORRENDOUS TIME. Please help him survive second TRANSPLANT.
It is very sad that we can not live like a normal family. For 7years its has been like a emotional Rollercoaster and we can not see the end.
Thank you all for your help, no mater how small it is!
Organizer
Aneta Katarzyna Malankowska
Organizer
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