Jodies Journey
Pine Rivers, Queensland
Australia
jodie
20th November, 2009
A new blog is well due for you all to read, as a lot has been happening. The following verse reminds me of my final goal: Paul & Barnabas on their discipleship journey. Acts 14:22 - Strengthening the disciples and encouraging them to remain true to the faith. 'We must go through many hardships to enter the kingdom of God', they said. Some of us do/some of us don't or is suffering just a part of the narrow road that leads us there?It's not something many people like to dwell on or even mention....but suffering is all around us, in one form or another. I see this suffering as a metaphor for an example of the gold refining process. I see us as a block of gold, specks of gold, nuggets, buried for a lifetime. Suddenly discovered, to be refined to its purest form, its Destino (Destiny) means it must go through a process of smeltering, heating, skimming and reforming. Only until it has been melted can it be reformed into a beautiful piece to be loved and treasured. As I go through pain and difficulties, I believe that although illness is certainly not from God, there seems to be a purpose and a use for it. Only when we reach the next kingdom, will we fully understand this challenging time and the reason for what we cannot explain. On the medical side of things: currently, I am being looked after by 3 hospital departments.
They are Heamotology (HEAM), Ear/Nose/Throat (ENT) and Speech Pathology (SPEECH). Infectious diseases has now discharged me. Since mid August, I have had difficulties with the swallowing process (a condition called Dysphasia). We are not sure of the cause, but are currently investigating. This week, I have had 2 CT scans: one of the neck area, to rule out Lymphoma activity and also a full body CT to look again at the lesion/scar tissue remaining on the S1 (Sciatic Nerve). I recieved these results today and there is no suspect lumps, bumps or extra lesions.I also had a Barium swallowing x-ray this week to watch me swallowing and today as I write this, I am getting my monthly dosage of Plasma and then will see my specialist. Next week through ENT, I will have a sinus procedure. Four big appointments in 1-2 weeks.It is likely, we may not find a cause for the swallowing problem. It may be somehow all linked with the sinus problems. Here's hoping it can be fixed or helped. It causes me a lot of discomfort and more pain, along with pain in the S1, weakness in the R leg and fatigue from the disease & past chemo.Unfortunetly, my Neutrofils were really low again today and this has been a consistent problem, post recovery -- compared to other Heamotology paitients (who have had up to 8 doses of Fludarabine/strong systemic chemo) -- my system and blood counts should have well recovered by now (it has been over 6 months since my last dose and I only had 3 lots)....this means more investigations are needed and I will be having another Bone Marrow Aspirate soon to rule out disease in the marrow. Always a painful procedure.
I believe now it isimportant to talk about these things. Although some may think that talking about it is negativeor gives it 'power over you' - I believe you can't face your foes until you know who they are/what they are. Nor can those around you specifically pray for your needs, if they don't know what to pray for. I try to keep life at home organised,in amongst medical appointments for both Julia & myself, twochildren's schools (Anna's Lutheranschool& Julia's special school), caring for the family, home makeover improvements here and there, there is not much time left, in one's day. Some days, I have more energy than others and then some days are slightly lousy, where I can't do much at all. I rest and do my best. God takescare of it all.On the kid's front: Julia has had some dental problems with her upper teeth for about 5 months. They are squished together and we can't brush between them properly, she generally won't let us in her mouth (i.e: toothfloss). This is the first time, we have had to get her formal dental treatment or dental work. With most autistic children,the feeling of having someone scrape at your teeth is absolutely horrifying....their senses are so, so heightened. I tried to take her to a 'regular' dentist with kiddies DVD's playing, etc and when he tried to put a needle in, she almost killed him. Imagine 'Rainman' going through dental treatment and you'll get the picture.
Autisticchildren are almost always strong and will push a grown man easily. So, off to the school dental clinic we went and on a waiting list for her to have dental work done under a GA (General Anaesthetic) at the Royal Children'sHospital. It will be a day surgery for her and will be mid January. Should be interesting. Recently, I spokewith a key federal politicianabout ways that we can drive a programme/assistance package to help women (and men) going through severe/life-threatening illness, whilst looking afterchildren. This is a gap in current Australian community services. Many women (doing chemo or coping with severe illness) find caring for the family extremely difficult, whilst they require care and assistance themselves. I am now writing a submission to start gathering ideas for this type of programme. Any suggestions or comments from my readers/supporters, would be greatly appreciated. We hope to take the girls away for Christmas....but did notrealise that you must book insuper-early for pet resorts, for Bobby & Peggy. They are completely full....we are on one waiting list. Anyone who would like to assist with this, let us know. Blessings to you all, Jodie&Family.
Jodies Journey - Blog 21.06th September, 2009
Alot of happenings have occurred since my last blogThe results are in and finally (after 2 years of lobbying) for a resolution from both the Health Quality & Complaints Commission and the Queensland Medical Board, on Tuesday 25th August/09a decision was made by the board to formally caution a GP who did not care for me appropriately, during the 11 months prior to my eventual diagnosis. The formal caution will be listed in the Queensland public registry for 1 year. My correspondence from the board states the following: It was the unanimous decision of the board that a ground for disciplinary action against the registrant had been established and that the registrant had acted in a way that constitutes unsatisfactory professional conduct as defined by the act [Health Practitioners Professional Standards- Act 1999] namely: Professional conduct that is of a lesser standard than that which might reasonably be expected of the registrant by the public or the registrants professional peers; and Professional conduct that demonstrates incompetence, or lack of adequate knowledge, skill, judgment or care, in the practise of the registrants profession.
Some people would say that a caution may not seem enough, but I guess when you have been through a lot of red tape to get to that result, whilst fighting cancer, this is to me a positive outcome for the protection of my fellow Queenslanders and it also creates a general awareness within the board/commission/other practitioners, regarding the necessity of diagnosing Lymphoma earlier in as many patients as possible. I am happy with this outcome and will have one more final letter to come from the HQCC. I feel this has validated my prior suffering when trying to find an answer to all my health problems from 2005-2006. Health-wise, we have now found the cause of my upper chest & throat infections I have a mild case of chronic sinusitis, causing problems in the throat and other symptoms (5 months of them). I am consulting with both Haematology & Infectious Diseases about this to figure out a resolution. Possibly surgery may be required in the near future. My immune system is still weak and I continue to wear a mask and get Octogam (Plasma) every month, as a continuing therapy, until my immunoglobulins come up and my B/T cell Lymphocytes repair from the past chemo. I am visiting both departments at the hospital once per month at this stage. I take it easy, day to day is different and some days I feel pretty awful and on rare occasions I feel fantastic. I am hoping for more of these days. Greg and the girls are good. The girls are growing so fast and I am now trying to clean out all their clothes and get new ones that fit. Julia is really not in kids clothes any longer and is fitting into ladies size 10/12. She is almost my size body wise with a shorter height and she will be 9 in November!! Both girls are proving to be extremely intelligent at both schools they attend. Even with all of Julias disabilities, she is one of the most intellectual girls in her junior level at special school. Next year she progresses onto middle special school and will be challenged more in her work. She is getting more help through Physiotherapy and Occupational Therapy, at the special school, in terms of her balance and low muscle tone. We are working on ways to find some activities she enjoys to help her become more active. Her school recently had a barn dance and Julia (and Anna) was right in there, dancing with some of the other disabled kids and the teachers. It was very cute.At home, we felt we should get a friend for Bobby (the Mal-Shi doggie)we found another Mal-Shi, at our local shelter, with a lot of overgrown hair, a female friend, named at the shelter as Peggy (great name match upi.e.: Bobby Darin & Peggy Lee). The poor Peggy was found wandering the streets of Albany Creek, ungroomed so much hair she was constantly panting and could hardly walkno microchip, collar, no desexing, no ID. We think she was dumped & is probably about 7 years old. But, she knows a lot of tricks and is just a beautiful, loving dog and the two of them get on very well. The kids are over the moon and love both of them. They are a diversional therapy for us a family, and takes our eyes off my health struggles and gives us some little animals to love and take care of. Our garden and plants are in bloom now for spring and preparing for a hot summer. We have a native Australian grass tree in the front of our propertyand they rarely flower, usually only after a bushfire and they live for approx. 50 years. I cut it right back and it has sprung back with three huge flowering shoots that can reach as high as 4 metres....I believe that this is fairly rare event for this plant, every 10-20 years or so. Once the shots start to flower, native birds may be attracted to them.
This is all our news for now, and as always we will keep you all updated, as we journey, progress and keep fighting for better health and a better life. Blessings to you all, Jodster.
Alot of happenings have occurred since my last blogThe results are in and finally (after 2 years of lobbying) for a resolution from both the Health Quality & Complaints Commission and the Queensland Medical Board, on Tuesday 25th August/09a decision was made by the board to formally caution a GP who did not care for me appropriately, during the 11 months prior to my eventual diagnosis. The formal caution will be listed in the Queensland public registry for 1 year. My correspondence from the board states the following: It was the unanimous decision of the board that a ground for disciplinary action against the registrant had been established and that the registrant had acted in a way that constitutes unsatisfactory professional conduct as defined by the act [Health Practitioners Professional Standards- Act 1999] namely: Professional conduct that is of a lesser standard than that which might reasonably be expected of the registrant by the public or the registrants professional peers; and Professional conduct that demonstrates incompetence, or lack of adequate knowledge, skill, judgment or care, in the practise of the registrants profession.
Some people would say that a caution may not seem enough, but I guess when you have been through a lot of red tape to get to that result, whilst fighting cancer, this is to me a positive outcome for the protection of my fellow Queenslanders and it also creates a general awareness within the board/commission/other practitioners, regarding the necessity of diagnosing Lymphoma earlier in as many patients as possible. I am happy with this outcome and will have one more final letter to come from the HQCC. I feel this has validated my prior suffering when trying to find an answer to all my health problems from 2005-2006. Health-wise, we have now found the cause of my upper chest & throat infections I have a mild case of chronic sinusitis, causing problems in the throat and other symptoms (5 months of them). I am consulting with both Haematology & Infectious Diseases about this to figure out a resolution. Possibly surgery may be required in the near future. My immune system is still weak and I continue to wear a mask and get Octogam (Plasma) every month, as a continuing therapy, until my immunoglobulins come up and my B/T cell Lymphocytes repair from the past chemo. I am visiting both departments at the hospital once per month at this stage. I take it easy, day to day is different and some days I feel pretty awful and on rare occasions I feel fantastic. I am hoping for more of these days. Greg and the girls are good. The girls are growing so fast and I am now trying to clean out all their clothes and get new ones that fit. Julia is really not in kids clothes any longer and is fitting into ladies size 10/12. She is almost my size body wise with a shorter height and she will be 9 in November!! Both girls are proving to be extremely intelligent at both schools they attend. Even with all of Julias disabilities, she is one of the most intellectual girls in her junior level at special school. Next year she progresses onto middle special school and will be challenged more in her work. She is getting more help through Physiotherapy and Occupational Therapy, at the special school, in terms of her balance and low muscle tone. We are working on ways to find some activities she enjoys to help her become more active. Her school recently had a barn dance and Julia (and Anna) was right in there, dancing with some of the other disabled kids and the teachers. It was very cute.At home, we felt we should get a friend for Bobby (the Mal-Shi doggie)we found another Mal-Shi, at our local shelter, with a lot of overgrown hair, a female friend, named at the shelter as Peggy (great name match upi.e.: Bobby Darin & Peggy Lee). The poor Peggy was found wandering the streets of Albany Creek, ungroomed so much hair she was constantly panting and could hardly walkno microchip, collar, no desexing, no ID. We think she was dumped & is probably about 7 years old. But, she knows a lot of tricks and is just a beautiful, loving dog and the two of them get on very well. The kids are over the moon and love both of them. They are a diversional therapy for us a family, and takes our eyes off my health struggles and gives us some little animals to love and take care of. Our garden and plants are in bloom now for spring and preparing for a hot summer. We have a native Australian grass tree in the front of our propertyand they rarely flower, usually only after a bushfire and they live for approx. 50 years. I cut it right back and it has sprung back with three huge flowering shoots that can reach as high as 4 metres....I believe that this is fairly rare event for this plant, every 10-20 years or so. Once the shots start to flower, native birds may be attracted to them.
This is all our news for now, and as always we will keep you all updated, as we journey, progress and keep fighting for better health and a better life. Blessings to you all, Jodster.
05th August, 2009
(My 38th birthday tomorrow, getting older now!) Time to update you all on the going-ons here in the lives of the Guerreros and Jodies Journey. My health and immune system continues to be a problem for me, so far 135 days sick (harbouring constant viruses, upper respiratory infections) since March 23rd of this year. A five day break just after the Hervey Bay holiday, made me feel it may have left, but right after I wrote my last blog.it made its presence felt again, unfortunately. It is becoming more difficult for me to function day-to-day, as my body is weaker and I am both physically and mentally finding this part of my journey, very hard indeed. We were eagerly awaiting a referral to see an Ear/Nose/Throat specialist. However this week speaking to my consultant hematologist, (thank goodness for consultant's)we will seek advice from the doctors of the infectious diseases department (RBH) to try and solve the puzzle of why my body is not healing from viruses and how we can improve my quality of life, so I can feel normal again. I will also have another bone marrow aspirate and start GCSF (Neutrophil shots) as my Neutrophils are dropping due to the continuing infections. As an in-patient it can take approx. 5plus days to see another departments specialist and as an out-patient, 2months or more. Such can be the difficulty of dealing with different hospital departments, private or public. The system can let you down quite often, or save your life, when you need it most. You learn how to play the system to get what you need as fast as possible, both doctors and patients.Lymphoma-wise, I am stable and just wanting to hear the word remission -- music to our ears and something we are still officially still striving for. My consultant & registrar have both had differing views and opinions on whether any Lymphoma was remaining or if it is scar tissue only. Its a hard call for all of the doctors, as biopsy is impossible, due to the location of the lesion. Upon looking at new articles on blood cancer, I found this informative, simple video below: Click here for a good explanatory video on Non-Hodgkins Lymphoma --
(My 38th birthday tomorrow, getting older now!) Time to update you all on the going-ons here in the lives of the Guerreros and Jodies Journey. My health and immune system continues to be a problem for me, so far 135 days sick (harbouring constant viruses, upper respiratory infections) since March 23rd of this year. A five day break just after the Hervey Bay holiday, made me feel it may have left, but right after I wrote my last blog.it made its presence felt again, unfortunately. It is becoming more difficult for me to function day-to-day, as my body is weaker and I am both physically and mentally finding this part of my journey, very hard indeed. We were eagerly awaiting a referral to see an Ear/Nose/Throat specialist. However this week speaking to my consultant hematologist, (thank goodness for consultant's)we will seek advice from the doctors of the infectious diseases department (RBH) to try and solve the puzzle of why my body is not healing from viruses and how we can improve my quality of life, so I can feel normal again. I will also have another bone marrow aspirate and start GCSF (Neutrophil shots) as my Neutrophils are dropping due to the continuing infections. As an in-patient it can take approx. 5plus days to see another departments specialist and as an out-patient, 2months or more. Such can be the difficulty of dealing with different hospital departments, private or public. The system can let you down quite often, or save your life, when you need it most. You learn how to play the system to get what you need as fast as possible, both doctors and patients.Lymphoma-wise, I am stable and just wanting to hear the word remission -- music to our ears and something we are still officially still striving for. My consultant & registrar have both had differing views and opinions on whether any Lymphoma was remaining or if it is scar tissue only. Its a hard call for all of the doctors, as biopsy is impossible, due to the location of the lesion. Upon looking at new articles on blood cancer, I found this informative, simple video below: Click here for a good explanatory video on Non-Hodgkins Lymphoma --
Just recently our family, as a unit made an inspired decision regarding our family church planting and the direction that we feel God is taking us forward in. Some of you may know that Greg has been working for the Queensland Baptists for some time now and is finding his work environment and co-workers fellowship, very rewarding and enriching. We have decided (with Gods direction) to move on and establish ourselves & our family within a wonderful Baptist congregation (www.bridgeman.org.au) with all the resources that a young family with complex needs could want. This is a place where our kids are already enjoying the Sunday school and the nurturing atmosphere. And a soon a special needs kids programme for kids, like Julia. We will miss seeing our friends within the AOG church (Oasis Christian Centre), but we do know that friendship across denominations should always remain, regardless of worship venue or life direction. This past Sunday, we had the privilege of listening to preacher & Baptist Indigenous Ministries Co-ordinator (Billy Williams) speak about living the Jesus Manifesto (Manifesto meaning: a public declaration of principles and intentions, often political in nature, but may also be life stance related). Billy spoke about remembering and assisting the marginalized in our society, the indigenous, the disabled, those with chronic illness, the homeless and I say to that, AMEN!! Some of the points of the message included: Prayer can be the birthplace of compassion. Be a voice to the voiceless, shine light in the darkness, life is worth living/life is worth caring. If you care for those who are marginalized, you dont just see and hear these people, but theres a call to join these people, go to where these people are. What a fantastic message inside and outside of religious organizations, but also in all of the societies that we live in. One of the verses used for this sermon was Luke 4: 18-19 - 18"The Spirit of the Lord is on me, because he has anointed me to preach good news to the poor.He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to release the oppressed, to proclaim the year of the Lord's favor." This kind of message means a lot to me, as I am now very passionate about ministering to others who have found themselves changed by disability or illness. Something, none of us endorse or want to endure in, but to escape, forever healed and released from. It is possible and it is our promise. Blessings, Jodster.
17th July, 2009.
We are reminded constantly of people in our lives, we are blessed with and who love us through the challenges and difficulties. A wonderful scripture relates to this love and support from friends and family: Love one another with brotherly affection [as members of one family], giving precedence and showing honor to one another. Romans 12: 10
We thank you all for believing in the call of God on our lives and investing in us as a family. Since my last blog, due to some respite funding from Commonwealth Carelink and Disability Services, we were able to place Julia in care with a family for 1 week and Anna & Bobby (our Mal-Shi) stayed at home with a lovely young lady from our circle of friends. This gave Greg & I an opportunity to have a week-long holiday to Hervey Bay, Queensland. Something we have not been able to do since before having kids. We stayed at the Mantra, Hervey Bay--beautiful views over the marina and out to Fraser Island. We then decided to do something we have always wanted to do and see the Great Barrier Reef. We flew in a small prop plane to LADY ELLIOT ISLAND, the southern most island of the GBR. We loved the peace and closeness to nature, we felt there and hope to take the kids in the school holidays, in the next year or so. Love & Blessings, Jodster
We are reminded constantly of people in our lives, we are blessed with and who love us through the challenges and difficulties. A wonderful scripture relates to this love and support from friends and family: Love one another with brotherly affection [as members of one family], giving precedence and showing honor to one another. Romans 12: 10
We thank you all for believing in the call of God on our lives and investing in us as a family. Since my last blog, due to some respite funding from Commonwealth Carelink and Disability Services, we were able to place Julia in care with a family for 1 week and Anna & Bobby (our Mal-Shi) stayed at home with a lovely young lady from our circle of friends. This gave Greg & I an opportunity to have a week-long holiday to Hervey Bay, Queensland. Something we have not been able to do since before having kids. We stayed at the Mantra, Hervey Bay--beautiful views over the marina and out to Fraser Island. We then decided to do something we have always wanted to do and see the Great Barrier Reef. We flew in a small prop plane to LADY ELLIOT ISLAND, the southern most island of the GBR. We loved the peace and closeness to nature, we felt there and hope to take the kids in the school holidays, in the next year or so. Love & Blessings, Jodster
05th June, 2009.
Greg and kids are getting over cold's/cough's etc, and other than minor ailments are happy. loving and supportive of all of mummy's treatment. Alot of people ask me, 'How is Greg? How is he coping?'--Greg is like a rock and I believe it's because of our strong faith in God, as a family and some of his experiences growing up that have prepared him for these difficult times. He is a regular, quiet guy with lots of love and tenderness, but knows when to trust God and always leads us. We are so blessed to have him, in our lives. Our kids are little characters and both are so, so loved and fill our hearts and home with joy. I am very actively blogging at the moment to keep every one up to date on all that is going on.
02nd June (Tuesday) I went to see the Heamotology Registrar (my clinical consultant is in Belgium on a conference) to be checked after leaving hospital and be given some MRI results. The virus has not completely left and so I am back on the anti-biotic's and here's hoping another dose will get rid of what is still hanging on. Wearing a mask in public and washing our hands alot at home and whilst out is my best defence in keeping away the bugs from what is left of my immune system. THE MRI RESULTS, were presented before a panel of doctors (in a clinical setting) and the most recent MRI pictures are compared with the last MRI showing a diseased S1 section of sciatic nerve. Although the doctors have difficulty discerning what is disease and what is scar tissue: The combined opinion is there is a small amount of change in the structure of what was orginally seen on the MRI. The opinion is that I am STABLE, rather than in partial or complete remission. Although when my heamotology consultant returns, we will get her opinion and try and get a better idea of what I going on. Until then, we will thank God that STABLE is good and although I still have damage and some leg residual R leg weakness, I am alive and it looks like we have found a drug that will control the disease should it try to return. My blood counts are up & down, due to the past chemo and the virus, but I am in the hospital for a check up every 2-3 days, so I am being well looked after. Last weekend (May 29/30/31), Julia and I went to a christian womens conference,we both enjoyed it, as a great respite away from hospital's, etc. I was able tospeak to many women, facing similar challenges. Blessings, Jodster.
Greg and kids are getting over cold's/cough's etc, and other than minor ailments are happy. loving and supportive of all of mummy's treatment. Alot of people ask me, 'How is Greg? How is he coping?'--Greg is like a rock and I believe it's because of our strong faith in God, as a family and some of his experiences growing up that have prepared him for these difficult times. He is a regular, quiet guy with lots of love and tenderness, but knows when to trust God and always leads us. We are so blessed to have him, in our lives. Our kids are little characters and both are so, so loved and fill our hearts and home with joy. I am very actively blogging at the moment to keep every one up to date on all that is going on.
02nd June (Tuesday) I went to see the Heamotology Registrar (my clinical consultant is in Belgium on a conference) to be checked after leaving hospital and be given some MRI results. The virus has not completely left and so I am back on the anti-biotic's and here's hoping another dose will get rid of what is still hanging on. Wearing a mask in public and washing our hands alot at home and whilst out is my best defence in keeping away the bugs from what is left of my immune system. THE MRI RESULTS, were presented before a panel of doctors (in a clinical setting) and the most recent MRI pictures are compared with the last MRI showing a diseased S1 section of sciatic nerve. Although the doctors have difficulty discerning what is disease and what is scar tissue: The combined opinion is there is a small amount of change in the structure of what was orginally seen on the MRI. The opinion is that I am STABLE, rather than in partial or complete remission. Although when my heamotology consultant returns, we will get her opinion and try and get a better idea of what I going on. Until then, we will thank God that STABLE is good and although I still have damage and some leg residual R leg weakness, I am alive and it looks like we have found a drug that will control the disease should it try to return. My blood counts are up & down, due to the past chemo and the virus, but I am in the hospital for a check up every 2-3 days, so I am being well looked after. Last weekend (May 29/30/31), Julia and I went to a christian womens conference,we both enjoyed it, as a great respite away from hospital's, etc. I was able tospeak to many women, facing similar challenges. Blessings, Jodster.
23rd May, 2009
I was admitted again to hospital on Monday, 18th May with infections and a high temp of 38.3--the infections and temp started only about 12 hours earlier and quickly took hold. This is because my white (WBC), red (HB), Platelets (PLTS) and Neutrophils (NEUTS) blood counts were reversed or holted by the immunosuppressive effects of the strong (fludarabine) chemotherapy, taken for the Lymphoma symptoms. This is described in oncology/heamotology circles as being 'Neutropenic' as opportunistic viruses and bateria hone in on destroying your body and infecting the weakened immune system. The chemo devastates the bone marrow, which functions to produce and increase new blood cells, each with their individual function of delivering oxygen, food, repairative and germ fighting properties to all corners of our bodies. I had recieved a plasma transfusion on the Friday prior, but this did not holt the virus, (which was probably a regular cold) as it took hold of my immune system quickly. As I write this, I have been on IV antibiotics, every 6 hours since Monday and my counts are being monitored daily with top-ups of red blood cells and platelets as needed. The great news from my heamotology team is that they have recommended that we holt the last dose of this chemotherapy cycle to let my body repair and relax, after all I have been through. My medical team are very happy with the results of symptom holt and think that we may be able to use this chemotherapy as a 'PRN' as required, if symptoms return to avoid a transplant, as long as possible. We are--of course-- hoping it goes away all together and we don't have to deal with any more chemotherapy. I will be attending achristian women'sconference, with my womens church team & my daughter (Julia) starting next Thursday and am looking forward to the break and time of ministry. More blogs to come, as the news happens......Blessings, Jodie G.
I was admitted again to hospital on Monday, 18th May with infections and a high temp of 38.3--the infections and temp started only about 12 hours earlier and quickly took hold. This is because my white (WBC), red (HB), Platelets (PLTS) and Neutrophils (NEUTS) blood counts were reversed or holted by the immunosuppressive effects of the strong (fludarabine) chemotherapy, taken for the Lymphoma symptoms. This is described in oncology/heamotology circles as being 'Neutropenic' as opportunistic viruses and bateria hone in on destroying your body and infecting the weakened immune system. The chemo devastates the bone marrow, which functions to produce and increase new blood cells, each with their individual function of delivering oxygen, food, repairative and germ fighting properties to all corners of our bodies. I had recieved a plasma transfusion on the Friday prior, but this did not holt the virus, (which was probably a regular cold) as it took hold of my immune system quickly. As I write this, I have been on IV antibiotics, every 6 hours since Monday and my counts are being monitored daily with top-ups of red blood cells and platelets as needed. The great news from my heamotology team is that they have recommended that we holt the last dose of this chemotherapy cycle to let my body repair and relax, after all I have been through. My medical team are very happy with the results of symptom holt and think that we may be able to use this chemotherapy as a 'PRN' as required, if symptoms return to avoid a transplant, as long as possible. We are--of course-- hoping it goes away all together and we don't have to deal with any more chemotherapy. I will be attending achristian women'sconference, with my womens church team & my daughter (Julia) starting next Thursday and am looking forward to the break and time of ministry. More blogs to come, as the news happens......Blessings, Jodie G.
16 April, 2009
Just a quick family update to let you all know what we are dealing with right now. I LIFT UP MY EYES TO THE HILLS, WHERE DOES MY HELP COME FROM? MY HELP COMES FROM THE LORD, THE MAKER OF HEAVEN & EARTH. Psalm 121:1-2
Jodie has been struggling the last 3 weeks to ward off a virus (called RSV) that one the kids brought home. Her immune system has been weak and this past Tuesday, she had her first dose of plasma to assist her immune system -- unfortunetly crackling on the L & R lungs and breathlessness have come about and she is now in the RBH getting some good doses of anti-biotics and anti-bacterial medications. It is most probably Pneumonia. We believe, as always (through all things and all trials) in the strength of His mighty hand and the healing process in Jodie. We also are so thankful for the great staff at the RBH. Your love, emails, support and prayers as we continue on this journey, are always greatly appreciated and we thank you all, as we go through this challenge, much love, Jodie G.
Just a quick family update to let you all know what we are dealing with right now. I LIFT UP MY EYES TO THE HILLS, WHERE DOES MY HELP COME FROM? MY HELP COMES FROM THE LORD, THE MAKER OF HEAVEN & EARTH. Psalm 121:1-2
Jodie has been struggling the last 3 weeks to ward off a virus (called RSV) that one the kids brought home. Her immune system has been weak and this past Tuesday, she had her first dose of plasma to assist her immune system -- unfortunetly crackling on the L & R lungs and breathlessness have come about and she is now in the RBH getting some good doses of anti-biotics and anti-bacterial medications. It is most probably Pneumonia. We believe, as always (through all things and all trials) in the strength of His mighty hand and the healing process in Jodie. We also are so thankful for the great staff at the RBH. Your love, emails, support and prayers as we continue on this journey, are always greatly appreciated and we thank you all, as we go through this challenge, much love, Jodie G.
26th March, 2009
I thought it was time for an update, as I have had some people asking what is happening & how I have been. I have some very specific prayer points also, so if you want to help us (keep reading through), prayer is always the best way to intercede for us with the Heavenly Father, who always takes care of our needs. My Fludarabine Chemo Round 2 is now finished, 10 days of nausea, constant exhaustion, 4 days of Netropenia (http://en.wikipedia.org/wiki/Neutropenia).
I have 2 more rounds of this chemo left, then we schedule an MRI to see if the disease has regressed. If regression has occurred, the plan may be 1 or 2 more cycles to knock it on the head. If the disease is still visible, we will then prepare for even stronger chemo, where I will be in the RBH (Royal Brisbane Hospital) for a long time, then progress to transplant. In the meantime, whether my blood counts are high or low, I continue to wear a surgical mask in public to protect my immune system. I have developed a low level of antibodies/immunoglobulins. This greatly effects my current ability to stop catching & rid myself of infections. As with this week, Anna came home with a cough & cold & very quickly, it become a roaring upper-respiratory infection & Pharyngitis in me, which I am currently fighting with antibiotics. To try to keep my anti-bodies up, I need 'Immunoglobulin Replacement Therapy' involving one to several
I thought it was time for an update, as I have had some people asking what is happening & how I have been. I have some very specific prayer points also, so if you want to help us (keep reading through), prayer is always the best way to intercede for us with the Heavenly Father, who always takes care of our needs. My Fludarabine Chemo Round 2 is now finished, 10 days of nausea, constant exhaustion, 4 days of Netropenia (http://en.wikipedia.org/wiki/Neutropenia).
I have 2 more rounds of this chemo left, then we schedule an MRI to see if the disease has regressed. If regression has occurred, the plan may be 1 or 2 more cycles to knock it on the head. If the disease is still visible, we will then prepare for even stronger chemo, where I will be in the RBH (Royal Brisbane Hospital) for a long time, then progress to transplant. In the meantime, whether my blood counts are high or low, I continue to wear a surgical mask in public to protect my immune system. I have developed a low level of antibodies/immunoglobulins. This greatly effects my current ability to stop catching & rid myself of infections. As with this week, Anna came home with a cough & cold & very quickly, it become a roaring upper-respiratory infection & Pharyngitis in me, which I am currently fighting with antibiotics. To try to keep my anti-bodies up, I need 'Immunoglobulin Replacement Therapy' involving one to several
bags of plasma (through blood donations) -- one bag alone consists of about 100 people's plasma & is very hard to get.
My next lot of chemo starts the weekend of Saturday, 4th April/09--as long as my body is infection free. The Queensland medical board came my home about 3 weeks ago & spoke with me for about 2 hours, regarding my initial problems in getting diagnosed -- I will find out the results of their investigations through their sub-committee & the board in the coming weeks. The process of conciliation is also being looked at -- this is a voluntary process and from all of this, if nothing else comes of it....it has raised considerable awareness within many circles, regarding the need for earlier diagnosis for blood cancers. I have also had some success in gaining Anna Bligh's (Queensland Premier) attention & I am now awaiting an appointment with her new health minister to discuss ways that we can change/reform our state health system to help more people get diagnosed sooner. We are also waiting on doctors reports for TPD insurance claims for Jodie, as she had 2 prior to diagnosis. Claiming Total & Permanent Disability is not nice, but we feel we have to & that my situation fits the bill. Please pray for the following: Disease regression & cure, Less hard nausea, pain, neutropenia, exhaustion & other chemo symptoms. Less infections. More antibodies and/or 'Immunoglobulin Replacement Therapy' thru RBH. Physical & mental energy & stability for Greg & the girls, as we face this. Easy & fast medical board/complaints commission successful investigation. Successful advocacy opportunities through the State health office. Successful TPD Insurance process & finalisation. Financial/Family provisions & blessings as we need, in all area's. When I am well, I am happy to speak/chat with anyone who needs to discuss cancer, hospital, paitient rights and general health issues, via Skype, as needed. Thank you for all for your continued love and support. Blessings 2 U, Jodie G.
My next lot of chemo starts the weekend of Saturday, 4th April/09--as long as my body is infection free. The Queensland medical board came my home about 3 weeks ago & spoke with me for about 2 hours, regarding my initial problems in getting diagnosed -- I will find out the results of their investigations through their sub-committee & the board in the coming weeks. The process of conciliation is also being looked at -- this is a voluntary process and from all of this, if nothing else comes of it....it has raised considerable awareness within many circles, regarding the need for earlier diagnosis for blood cancers. I have also had some success in gaining Anna Bligh's (Queensland Premier) attention & I am now awaiting an appointment with her new health minister to discuss ways that we can change/reform our state health system to help more people get diagnosed sooner. We are also waiting on doctors reports for TPD insurance claims for Jodie, as she had 2 prior to diagnosis. Claiming Total & Permanent Disability is not nice, but we feel we have to & that my situation fits the bill. Please pray for the following: Disease regression & cure, Less hard nausea, pain, neutropenia, exhaustion & other chemo symptoms. Less infections. More antibodies and/or 'Immunoglobulin Replacement Therapy' thru RBH. Physical & mental energy & stability for Greg & the girls, as we face this. Easy & fast medical board/complaints commission successful investigation. Successful advocacy opportunities through the State health office. Successful TPD Insurance process & finalisation. Financial/Family provisions & blessings as we need, in all area's. When I am well, I am happy to speak/chat with anyone who needs to discuss cancer, hospital, paitient rights and general health issues, via Skype, as needed. Thank you for all for your continued love and support. Blessings 2 U, Jodie G.
18th February, 2009
I got out of hospital on Monday this week. Today, (18th February) is the first in the last 6 days I have felt like I have been able to do some things around the place and not be in bed so much. I recieved three days of chemotherapy last week, Thu/Fri/Sat and it was tough. A hard, hard mixture of hard drugs (Fludarabine), which really wiped me out and I certainly felt it. Now, I will get sores in the mouth and throat, hair will fall out in about 2 weeks. But, Have Michelle G, coming over to shave it off this weekend to avoid dropping big clumps all over the house. My Heamotologist showed me a diagram of the S1. --a small piece of sciatic nerve tucked deep that is inflamed with Lymphoma, so small and hidden and what we are targeting. The cycle will go 3 days of chemo every 28 days for about 4-8 cycles, depending on what MRI & scans reveal. I have migraines from the chemo, but have meds for this - morphine/endone. Back to bed for me, I read all your messages, thank you and blessings to you all. Jodster.
I got out of hospital on Monday this week. Today, (18th February) is the first in the last 6 days I have felt like I have been able to do some things around the place and not be in bed so much. I recieved three days of chemotherapy last week, Thu/Fri/Sat and it was tough. A hard, hard mixture of hard drugs (Fludarabine), which really wiped me out and I certainly felt it. Now, I will get sores in the mouth and throat, hair will fall out in about 2 weeks. But, Have Michelle G, coming over to shave it off this weekend to avoid dropping big clumps all over the house. My Heamotologist showed me a diagram of the S1. --a small piece of sciatic nerve tucked deep that is inflamed with Lymphoma, so small and hidden and what we are targeting. The cycle will go 3 days of chemo every 28 days for about 4-8 cycles, depending on what MRI & scans reveal. I have migraines from the chemo, but have meds for this - morphine/endone. Back to bed for me, I read all your messages, thank you and blessings to you all. Jodster.
30th January, 2009
I am in the Royal Brisbane Hospital and it appears we have found disease evidence on the MRI -- we will inform as we get more from our team of doctors. This may be a long process and I have started chemo drugs already to help my body digest any tumour that may exsist and prepare me for the next lot of treament. (Amazingly our bodies digest tumours through the same process as we digest food, but drugs protect our kidneys from damage). Finding disease evidence is good and bad. Bad to have disease and good to have some evidence to possibly biopsy and analyze, so we can best beat it. Dr's inform me that we will have another lumbar puncture on Monday to help with the symptoms -- a top up of blood product and start systemic chemo next week. When I have a better idea of exactly what we have found, I will post this. For now, thanks for your prayers and love and support for me and all the family. I am not scared of this thing anymore and see it as an annoyance in my life, rather than something that can be fatal. It has got to bow down and leave my body, we have some the best doctors and drugs in the world and I know there is alot of hope. Blessings 2 U, Jodster.
22nd January, 2009
We are not letting Lymphoma take Jodie's leg or life! Well, we have some news about Jodies health. We will keep it brief and to-the-point: I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope. Jeremiah 29:11.
So far, Jodies first chemotherapy, got rid of the majority of Jodies Lymphoma (remission occurred in March/07) relapse in Jodies Sciatic nerve started in January/08 when her Right toes stopped responding to individual movement requests, along with other symptoms and a very weak Right leg. EARLIER THIS MONTH: 7th January/09 (3 months after the end of Jodies last treatment), Jodie noticed pain in the area of the R Sciatic nerve & some leg weakness, although dim. Without immediately calling the Doctor, Jodie monitored the symptoms for about 2 weeks, before making the call to advise her hematologist. The symptoms were & have been getting, progressively worse. WE ADVISED JODIES HEAMOTOLOGIST: 20th January/09 & went in for a leg test on the 21st January/09, which confirmed that the disease had re-occurred. We knew that this was a possibility and were waiting to see if the injection (methatrexate) injection chemotherapy (Jodie had in September-October/08), had permanently solved the relapse or not. NOW THE SAME SYMPTOMS HAVE RETURNED AT FULL STRENGTH: The R leg is currently particularly weak and Jodie is using a walking cane again for stability. This time it has only taken about 2 weeks from no symptoms and virtually no leg weakness to full symptoms, previously felt prior to the last course of chemotherapy injections. WHAT DO WE DO NOW: 29th January/09 we will get an MRI to see if we can visually spot the Lymphoma that is causing the problems in and around Jodies sciatic nerve. Regardless, even if no change is located, we will progress (on/around 30th January/09) to a full course of systemic Fludarabine (2nd line for relapsed indolent Lymphomas) chemotherapy. THEN A TRANSPLANT: Once the chemo starts--the plan is then to start discussing my options in terms of trying to irradiate the disease entirely from my system. Probably the first transplant will be an autologous stem cell transplant, using my own stem cells harvested from me in April/07. My 2.5 Billion stem cells have been waiting for me on ice at the Royal Brisbane Hospital ready for the time that I may need them. HOW CAN YOU HELP: Please continue to pray for Jodie & her family (Greg, Julia & Anna), Offers of practical assistance are welcome think about giving blood regularly and/or stem cells or bone marrow to help Jodie & people like her. Tell all your friends about Jodie's Journey. The more people know, the more awareness is raised about Lymphoma and the symptoms. Investigations are still continuing into Jodies delayed diagnosis, and therefore relapses caused from the extensive disease. NB -- we will read all of your messages, but may only be able to reply briefly or with a short response. Thank you, much love, Jodie & Family.
We are not letting Lymphoma take Jodie's leg or life! Well, we have some news about Jodies health. We will keep it brief and to-the-point: I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope. Jeremiah 29:11.
So far, Jodies first chemotherapy, got rid of the majority of Jodies Lymphoma (remission occurred in March/07) relapse in Jodies Sciatic nerve started in January/08 when her Right toes stopped responding to individual movement requests, along with other symptoms and a very weak Right leg. EARLIER THIS MONTH: 7th January/09 (3 months after the end of Jodies last treatment), Jodie noticed pain in the area of the R Sciatic nerve & some leg weakness, although dim. Without immediately calling the Doctor, Jodie monitored the symptoms for about 2 weeks, before making the call to advise her hematologist. The symptoms were & have been getting, progressively worse. WE ADVISED JODIES HEAMOTOLOGIST: 20th January/09 & went in for a leg test on the 21st January/09, which confirmed that the disease had re-occurred. We knew that this was a possibility and were waiting to see if the injection (methatrexate) injection chemotherapy (Jodie had in September-October/08), had permanently solved the relapse or not. NOW THE SAME SYMPTOMS HAVE RETURNED AT FULL STRENGTH: The R leg is currently particularly weak and Jodie is using a walking cane again for stability. This time it has only taken about 2 weeks from no symptoms and virtually no leg weakness to full symptoms, previously felt prior to the last course of chemotherapy injections. WHAT DO WE DO NOW: 29th January/09 we will get an MRI to see if we can visually spot the Lymphoma that is causing the problems in and around Jodies sciatic nerve. Regardless, even if no change is located, we will progress (on/around 30th January/09) to a full course of systemic Fludarabine (2nd line for relapsed indolent Lymphomas) chemotherapy. THEN A TRANSPLANT: Once the chemo starts--the plan is then to start discussing my options in terms of trying to irradiate the disease entirely from my system. Probably the first transplant will be an autologous stem cell transplant, using my own stem cells harvested from me in April/07. My 2.5 Billion stem cells have been waiting for me on ice at the Royal Brisbane Hospital ready for the time that I may need them. HOW CAN YOU HELP: Please continue to pray for Jodie & her family (Greg, Julia & Anna), Offers of practical assistance are welcome think about giving blood regularly and/or stem cells or bone marrow to help Jodie & people like her. Tell all your friends about Jodie's Journey. The more people know, the more awareness is raised about Lymphoma and the symptoms. Investigations are still continuing into Jodies delayed diagnosis, and therefore relapses caused from the extensive disease. NB -- we will read all of your messages, but may only be able to reply briefly or with a short response. Thank you, much love, Jodie & Family.
25th November, 2008
Life Continues to be stable (health-wise) at the moment, although our house was subject to a real lashing during the SE Queensland massive storms from 16th November. Our roof tiles were obviously lifted and smashed in several places during the wind and hail, during the big storm week, this caused water damage to the inside of the roof and our large entertainment area is now leaking in many places. Thank God for house insurance, as this will all be taken care of very soon. I visted my heamotologist yesterday and all seems stable at present, no change in leg weakness and related symptoms. Although both Dr. and myself both talked about the realization that we have brought some time and almost certainly more chemo and a transplant is likely ahead. Although, not today and a good christmas wtihout chemo, seems likely and will be greatly looked forward to. Love, Jodie G.
Life Continues to be stable (health-wise) at the moment, although our house was subject to a real lashing during the SE Queensland massive storms from 16th November. Our roof tiles were obviously lifted and smashed in several places during the wind and hail, during the big storm week, this caused water damage to the inside of the roof and our large entertainment area is now leaking in many places. Thank God for house insurance, as this will all be taken care of very soon. I visted my heamotologist yesterday and all seems stable at present, no change in leg weakness and related symptoms. Although both Dr. and myself both talked about the realization that we have brought some time and almost certainly more chemo and a transplant is likely ahead. Although, not today and a good christmas wtihout chemo, seems likely and will be greatly looked forward to. Love, Jodie G.
Jodies Journey - Blog 9.20th November, 2008
Well, lumbar puncture 5 is now complete and thanks to a finer needle, no migraines, the 6th and final lumbar puncture will be in the next 1-2 weeks. Then it is 'watch and wait'. Continually testing my R leg will be part of this watch and wait process. If we notice any re-occurance of weakness--we'll re-evaluate our situation and decide and the way forward. Thank you all for your continual prayers and love. Blessings, Jodster.
Well, lumbar puncture 5 is now complete and thanks to a finer needle, no migraines, the 6th and final lumbar puncture will be in the next 1-2 weeks. Then it is 'watch and wait'. Continually testing my R leg will be part of this watch and wait process. If we notice any re-occurance of weakness--we'll re-evaluate our situation and decide and the way forward. Thank you all for your continual prayers and love. Blessings, Jodster.
07th October, 2008
I have now finished 10 days in the Royal Brisbane Hospital and happy to be out and feeling fine. Lumbar Puncture #4 was performed on Monday, 06th October/08 with a very fine needle - which has halted post lumbar migraines to zero. A fabulous result, as I had previously struggled through 5-6 days of migraines, after the LP. Amazingly, the migraines are caused from a tiny leak and imbalance of spinal fluid from the puncture site. Incredible, how it all works. We have run tests and find no cells that we can test for Lymphoma, although I had the symptoms, we could not find the evidence. Therefore my doctor gave me a choice as to whether we would like to progress with Fludarabine (relapse chemotherapy for Lymphoma) or wait off. We have decided to wait and see if the symptoms return, in the mean time, we will do 2 more Lumbar Punctures in the next 3 weeks, to try and nail it. Obviously, should any symptom return we will get straight into more chemotherapy and then talk transplant. We are happy with the decision, for this time, as avoiding toxicity is our number 1 aim in ridding the Lymphoma completely. I now also have a port-a-cath in my chest for extraction of bloods and delivery of medicines. This will assist me in less needles and pain in accessing difficult veins. Doctors will continue to monitor me very closely and we will work ot a plan, as we progress. Hopefully, the lumbar's will give me a cure and full healing from whatever is left and was trying to take my leg again. We will continue to post as news comes to hand. Thank you all for your continued prayers and love. See my media page for the latest Lymphoma News and an article on my journey. Exciting news on the health reform front is that there are some important GP tool's now available through the Queensland Leukaemia Foundation, and these will be sent to every GP in Australia. They are called:GP Diagnosis card-Is Lymphoma On Your Radar? GP Guide-Early Dignosis & Refferal of Lymphoma Is Critical - mail me if you would like copies of these or do a search. Blessings 2 U, Jodie G.
I have now finished 10 days in the Royal Brisbane Hospital and happy to be out and feeling fine. Lumbar Puncture #4 was performed on Monday, 06th October/08 with a very fine needle - which has halted post lumbar migraines to zero. A fabulous result, as I had previously struggled through 5-6 days of migraines, after the LP. Amazingly, the migraines are caused from a tiny leak and imbalance of spinal fluid from the puncture site. Incredible, how it all works. We have run tests and find no cells that we can test for Lymphoma, although I had the symptoms, we could not find the evidence. Therefore my doctor gave me a choice as to whether we would like to progress with Fludarabine (relapse chemotherapy for Lymphoma) or wait off. We have decided to wait and see if the symptoms return, in the mean time, we will do 2 more Lumbar Punctures in the next 3 weeks, to try and nail it. Obviously, should any symptom return we will get straight into more chemotherapy and then talk transplant. We are happy with the decision, for this time, as avoiding toxicity is our number 1 aim in ridding the Lymphoma completely. I now also have a port-a-cath in my chest for extraction of bloods and delivery of medicines. This will assist me in less needles and pain in accessing difficult veins. Doctors will continue to monitor me very closely and we will work ot a plan, as we progress. Hopefully, the lumbar's will give me a cure and full healing from whatever is left and was trying to take my leg again. We will continue to post as news comes to hand. Thank you all for your continued prayers and love. See my media page for the latest Lymphoma News and an article on my journey. Exciting news on the health reform front is that there are some important GP tool's now available through the Queensland Leukaemia Foundation, and these will be sent to every GP in Australia. They are called:GP Diagnosis card-Is Lymphoma On Your Radar? GP Guide-Early Dignosis & Refferal of Lymphoma Is Critical - mail me if you would like copies of these or do a search. Blessings 2 U, Jodie G.
September 20, 2008.
Jodie will be speakingat a Leukaemia Foundation function to mark 'World Lymphoma Awareness Day' on Monday, 15 September, 2008. Jodie (and 2 other paitients) along with Haemotologist guest speaker, Dr. Jason Butler, will speak about their experiences, through Lymphoma and emerging therapies. To RSVP, please contact the Leukaemia Foundation directly, by Thursday 11 September, 2008. Jodie will start injection chemotherapy, via lumbar puncture on Wednesday, 3rd September, 2008. This is to attempt halt of various leg and nerve symptoms & weakness. Chemotherapy via injection will possibly be at regular intervals. Jodie will also start RBH physio to improve the leg function. After the chemo is finished. We will decide with Jodie's doctor's, if Stem Cell Transplant is appropriate. odie will send out updates over this time. Blessing, Jodie G.
Jodie will be speakingat a Leukaemia Foundation function to mark 'World Lymphoma Awareness Day' on Monday, 15 September, 2008. Jodie (and 2 other paitients) along with Haemotologist guest speaker, Dr. Jason Butler, will speak about their experiences, through Lymphoma and emerging therapies. To RSVP, please contact the Leukaemia Foundation directly, by Thursday 11 September, 2008. Jodie will start injection chemotherapy, via lumbar puncture on Wednesday, 3rd September, 2008. This is to attempt halt of various leg and nerve symptoms & weakness. Chemotherapy via injection will possibly be at regular intervals. Jodie will also start RBH physio to improve the leg function. After the chemo is finished. We will decide with Jodie's doctor's, if Stem Cell Transplant is appropriate. odie will send out updates over this time. Blessing, Jodie G.
August 6th, 2008
But He said, "The things which are impossible with men are possible with God." (Luke 18:27)--'Cancer Relapse' sounds very frightening and indeed it is. Unfortunately our worst suspicions about Jodie's leg have now been confirmed. The cancer has returned (in a small amount)--But, in a critical area, in the R Sciatic Nerve (the first tumour hot-spot). The cancer is causing problems with Jodie's leg, foot & toes and other functions. The maintenance therapy, Jodie was under may have slowed down the cancer's return, but was not strong enough to starve it off. The cells seem to be hiding under a sheave of tissue that envelops the sciatic nerve and are causing destruction, pressure & pain, in this area. This sheave also hid the cancer's activities from the scans and doctors. Fibrosis was suspected -- but new symptoms have come on too fast for fibrosis. An urgent application of Mabthera chemotherapy on Wednesday (6th Aug-Jodie's birthday!!), relieved foot numbness on Friday, a lumbar puncture was clear--which indicates no lymphoma cells in the spine. Jodie has now left work and will commence more urgent chemotherapy on Tuesday next week to hopefully reduce weakness in her R leg and return the function of her R toes. We pray that permanent damage has not done and does not progress. Within 2 weeks, the onset of this has made it necessary for Jodie to currently use a walking cane. What are the Guerrero's going to do now? We have an amazing God, whom we believe holds the key to Jodie's healing and complete restoration. (Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard) Isaiah 58:8.
In addition to all we believe, Jodie is under the care and guidance of some of the best haematologist's in our region. The Royal Brisbane Hospital is the largest and most comprehensive hospital in the Southern Hemisphere. The haematology department of the RBH is one of the world's best and Jodie's haematologist (Dr. Anne Gillett) is the hospitals best haematologist. In addition, the Australian haematology family is small and information and resources are shared and consultation between haematologists is quite common. The next step after Mabthera this week will be ASAP, (another blood device implanted) and 4 rounds of a new type of chemotherapy specifically formulated for relapse. When we have finished these new drugs, we will then discuss our future options with our Haematologist and Stem Cell Oncologist. We can try again some maintenance therapy or opt. possibly for a Stem Cell Transplant, with the stem cells collected from Jodie, over 1 year ago. These stem cells, may be able to reverse disease for a very long medical remission. On the other hand donor stem cells from another person matched to Jodie, may cure Jodie medically completely, but could also kill & can be risky. Stem Cell or Bone Marrow Transplants are BIG GUN treatments are usually only used if relapse keeps occurring. We know you are all constantly praying, so THANK YOU ALL. Thank you also to our Church. Thank you to our family and friends for their love, visits, gifts and flowers, whilst Jodie was in hospital, for 4 days. If you would like to support us as a family and are wondering what you can do, we will accept any support you wish to give, but only assist if you wish to, don't feel pressured -- if you can't: Meals are great, especially whilst Jodie is in hospital or getting treatment. Kid Company, our kids love to play with your kids, this gives Greg & Jodie a break. We love visitors for a coffee, chat & pray, at our newish home. Bless us, with your conversation and positive comments.Feel free to ask any questions, we love you all and thank you for your support. Love 2 U, Jodie G.
But He said, "The things which are impossible with men are possible with God." (Luke 18:27)--'Cancer Relapse' sounds very frightening and indeed it is. Unfortunately our worst suspicions about Jodie's leg have now been confirmed. The cancer has returned (in a small amount)--But, in a critical area, in the R Sciatic Nerve (the first tumour hot-spot). The cancer is causing problems with Jodie's leg, foot & toes and other functions. The maintenance therapy, Jodie was under may have slowed down the cancer's return, but was not strong enough to starve it off. The cells seem to be hiding under a sheave of tissue that envelops the sciatic nerve and are causing destruction, pressure & pain, in this area. This sheave also hid the cancer's activities from the scans and doctors. Fibrosis was suspected -- but new symptoms have come on too fast for fibrosis. An urgent application of Mabthera chemotherapy on Wednesday (6th Aug-Jodie's birthday!!), relieved foot numbness on Friday, a lumbar puncture was clear--which indicates no lymphoma cells in the spine. Jodie has now left work and will commence more urgent chemotherapy on Tuesday next week to hopefully reduce weakness in her R leg and return the function of her R toes. We pray that permanent damage has not done and does not progress. Within 2 weeks, the onset of this has made it necessary for Jodie to currently use a walking cane. What are the Guerrero's going to do now? We have an amazing God, whom we believe holds the key to Jodie's healing and complete restoration. (Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard) Isaiah 58:8.
In addition to all we believe, Jodie is under the care and guidance of some of the best haematologist's in our region. The Royal Brisbane Hospital is the largest and most comprehensive hospital in the Southern Hemisphere. The haematology department of the RBH is one of the world's best and Jodie's haematologist (Dr. Anne Gillett) is the hospitals best haematologist. In addition, the Australian haematology family is small and information and resources are shared and consultation between haematologists is quite common. The next step after Mabthera this week will be ASAP, (another blood device implanted) and 4 rounds of a new type of chemotherapy specifically formulated for relapse. When we have finished these new drugs, we will then discuss our future options with our Haematologist and Stem Cell Oncologist. We can try again some maintenance therapy or opt. possibly for a Stem Cell Transplant, with the stem cells collected from Jodie, over 1 year ago. These stem cells, may be able to reverse disease for a very long medical remission. On the other hand donor stem cells from another person matched to Jodie, may cure Jodie medically completely, but could also kill & can be risky. Stem Cell or Bone Marrow Transplants are BIG GUN treatments are usually only used if relapse keeps occurring. We know you are all constantly praying, so THANK YOU ALL. Thank you also to our Church. Thank you to our family and friends for their love, visits, gifts and flowers, whilst Jodie was in hospital, for 4 days. If you would like to support us as a family and are wondering what you can do, we will accept any support you wish to give, but only assist if you wish to, don't feel pressured -- if you can't: Meals are great, especially whilst Jodie is in hospital or getting treatment. Kid Company, our kids love to play with your kids, this gives Greg & Jodie a break. We love visitors for a coffee, chat & pray, at our newish home. Bless us, with your conversation and positive comments.Feel free to ask any questions, we love you all and thank you for your support. Love 2 U, Jodie G.
Jodies Journey - Blog 5.June 01st, 2008
Another challenge has arisen and so we need everyone around us to pray, pray, pray. In advising of what is happening from the medical doctors, we certainly don't embrace this or believe that it is Jodie's future, as a family we are believing for complete restoration and deliverance and this and any future health concerns. (Thanks to Joni, who reminded Jodie about this verse in the Bible): Then the lame will leap like a deer, And the tongue of the mute will shout for joy. For waters will break forth in the wilderness And streams in the Arabah. Isaiah 35:6
The situation is the following: Jodie's R toes started having restricted movement in January due to a condition called 'Radiogenic Fibrosis' which is a tightening and compression of the R sciatic nerve deep inside the pelvis. This is caused by the body's long-term reaction to the 2 weeks of high-dose radiotherapy received in October, 2006 to save her life and her leg. So the radiotherapy was a must to save her from the Lymphoma. The scaring or fibrosis is building and tightening around the nerve and restricting signals from the brain reaching Jodie's foot & leg. In the last week, numbness has spread up her foot and her R leg is getting weaker. Although, the fibrosis can continue for up to 15 years + after the radiotherapy. We have been told that she could get 'drop-foot' or loose the function of her R leg altogether. She also has numbness from tumour damage to the nerve, that she has been told is permanent. However, we are praying that this is all going to go. We will seek the opinion of a neurosurgeon to see if anything can be done, but it is risky surgery and not many surgeons do sciatic repairs. Some of the best sciatic neurosurgeons are located at John Hopkin's in the US and this may be a possible option. Jodie will be getting another scan on Tuesday to look at the fibrosis. There is much presently happening in terms of looking at legal or conciliation options for what occurred to Jodie and all of this will contribute to any potential claim or conciliation. Jodie is in hospital quite often for tests, etc. We value all of your prayers in this situation and thank you for your continued love and concern for Jodie and for our family. Love 2 U, Jodster.
The situation is the following: Jodie's R toes started having restricted movement in January due to a condition called 'Radiogenic Fibrosis' which is a tightening and compression of the R sciatic nerve deep inside the pelvis. This is caused by the body's long-term reaction to the 2 weeks of high-dose radiotherapy received in October, 2006 to save her life and her leg. So the radiotherapy was a must to save her from the Lymphoma. The scaring or fibrosis is building and tightening around the nerve and restricting signals from the brain reaching Jodie's foot & leg. In the last week, numbness has spread up her foot and her R leg is getting weaker. Although, the fibrosis can continue for up to 15 years + after the radiotherapy. We have been told that she could get 'drop-foot' or loose the function of her R leg altogether. She also has numbness from tumour damage to the nerve, that she has been told is permanent. However, we are praying that this is all going to go. We will seek the opinion of a neurosurgeon to see if anything can be done, but it is risky surgery and not many surgeons do sciatic repairs. Some of the best sciatic neurosurgeons are located at John Hopkin's in the US and this may be a possible option. Jodie will be getting another scan on Tuesday to look at the fibrosis. There is much presently happening in terms of looking at legal or conciliation options for what occurred to Jodie and all of this will contribute to any potential claim or conciliation. Jodie is in hospital quite often for tests, etc. We value all of your prayers in this situation and thank you for your continued love and concern for Jodie and for our family. Love 2 U, Jodster.
Jodies Journey - Blog 4.
January 21, 2008.
My first blog. We had a bit of a scare and are thankful that a recent emergency MRI, was even clearer than the last scan. It did reveal a good deal of scar tissue. My R toes and leg have showed signs of numbness. My heamotologist and I will be consulting with a neurologist to discuss monitoring of my leg and toes. Not many surgeons will attempt sciatic surgery, it is a risky location to go. However, I had read a story out of 'John Hopkins' about a young US solider who served in Iraq. His sciatic nerve was blasted at close range. Dr's recommended chopping off his leg, but he demanded a second opinion. Amazingly, a doctor at John Hopkins agreed to repair the nerve. 6 months later the young solider, hit his shin on furniture and could feel it!! So much for chopping off his leg!!This story shows the importance of 'pressing on', not lingering in the now or our present circumstances, but believing and expecting a better future, and trusting that God is taking care of all our affairs. This is called faith and it only takes as much as the 'size of a mustard seed' (the smallest seed on earth) to move mountains. My first big mountain was moved and disposed off and what ever may come is also temporary and not in my vision for my best future. All though this is all hard when doing chemotherapy, your whole mindset changes. As is any discussion with most people about Lymphoma or cancer, this is an unpleasant subject. No-one likes talking about being misdiagnoised or a delayed diagnosis. People all around you will voice that making a formal complaint about the delay and the painful results or prognosis is wrong. I respectfully agree to disagree and feel that this is most important in creating awareness, changing a failed system and stopping this from continuing to happen to others. Blessings & Love, Jodie G.
My first blog. We had a bit of a scare and are thankful that a recent emergency MRI, was even clearer than the last scan. It did reveal a good deal of scar tissue. My R toes and leg have showed signs of numbness. My heamotologist and I will be consulting with a neurologist to discuss monitoring of my leg and toes. Not many surgeons will attempt sciatic surgery, it is a risky location to go. However, I had read a story out of 'John Hopkins' about a young US solider who served in Iraq. His sciatic nerve was blasted at close range. Dr's recommended chopping off his leg, but he demanded a second opinion. Amazingly, a doctor at John Hopkins agreed to repair the nerve. 6 months later the young solider, hit his shin on furniture and could feel it!! So much for chopping off his leg!!This story shows the importance of 'pressing on', not lingering in the now or our present circumstances, but believing and expecting a better future, and trusting that God is taking care of all our affairs. This is called faith and it only takes as much as the 'size of a mustard seed' (the smallest seed on earth) to move mountains. My first big mountain was moved and disposed off and what ever may come is also temporary and not in my vision for my best future. All though this is all hard when doing chemotherapy, your whole mindset changes. As is any discussion with most people about Lymphoma or cancer, this is an unpleasant subject. No-one likes talking about being misdiagnoised or a delayed diagnosis. People all around you will voice that making a formal complaint about the delay and the painful results or prognosis is wrong. I respectfully agree to disagree and feel that this is most important in creating awareness, changing a failed system and stopping this from continuing to happen to others. Blessings & Love, Jodie G.
Jodies Journey
Pine Rivers, Queensland
Australia
jodie
