She has done the hardest part, as it was the 1st session Frankie rose was extremely anxious this morning, she had a belly ache and was crying by the time she was wheeled away for proton treatment. It's really hard for Sam and I as we're not allowed in the room with her because of the radiation but as she was upset they let me come into the room known as the gantry, it's the largest of 4 and transmits from a 360 degree angle. I was able to kiss and cuddle her until she was calm. By the time I was asked to leave she was requesting track 2 from the frozen album. She knows what she wants !! We waited for forever that's how long an hr takes when your doing this, and when she came back she felt much better and had managed to take a nap. Feeling extremely proud of our courageous girl. Xxxx ironically the machine are made and produced in Belgium and are being up kept by a Belgium company. I also read that it was invented in Cambridge. It took 18 months to build procure here from 1st brick to 1st patient. Y is the nhs taking 5 years and if it's a European product why do the nhs send all patients to US? By the way, the 6-8 wk yes we needed to be funded by the proton panel in the UK turned Frankie-rose's case down in 1 week. Wtf!!!!
Couldn't help feeling hopeful on the one hand and anger on the other when I read this.
Thanks for posting updates, I haven't got much more to add except How proud everyone is of Frankie, and also Freddie and Alfie who have been so selflessly taking care of their sister and keeping her spirits up.
As it's the weekend Frankie-rose has two days off, today we went to the memorial museum in brick town, had an amazing lunch at blus bbq and then went to braums ice cream parlour (they were huge) kids managed to finish theirs but mum and dad struggled. Never thought I'd be too old for ice dream! After so much hospital time it was nice to get out and about and gave a little fun xx
Frankie-rose has completed 4 sessions of proton beam so far, she got upset for the last 10 minutes (lasts 1 hr) yesterday and Sam was able to go behind the scenes and comfort her, she said the mask was uncomfortable, today she got through it ok but couldn't keep still towards the end - no tears at least, an hour is awfully long to be still and at 7 time lasts forever..... We're very proud and comforted to know that she didn't get upset. An artist/radiologist is going to decorate her mask frozen style to try to make the situation easy. Bless u Dennis, it's easy to see why your her favourite. They have bonded over 1D and his attempts at stealing her slippers. Having a trip to register at the local hospital tomorrow for routine check ups. Almost Friday when she gets some time off. Counting down the days. The boys are much more involved here and it helps them to cope I think. They Procure clinic go out of their way for all 3 children. So glad we're all here together. Couldn't have bear to of been parted. XxxxX
Difficult to add anything to any of these updates but, suffice to say, they do encompass all the emotions of desperation, helplessness and hope Frankie-Rose and her family are going through:
Been a rough day, feeling lonely and tearful, that's me not Frankie she as always is coping much better then the rest of us. Not sure why everything is going well, just feel hopeless and helpless some times. On a plus note Frankie has been out of the wheelchair for 2 days now and using her walking frame. She is now independently stealing Oreos at any given opportunity. Lol sometimes wish a biscuit would take all my troubles away, if only life were that easy....
Hi everyone, thanks for listening, woke up much better, shook it off and am now ready to face anything. Frankie-rose is my inspiration, just looking at her makes me smile. If she can do it, what right do we have to crumble. Just a shaky moment after all the highs. Anyway in the best place getting the best treatment thanks to every single one of you. Our army is huge, supportive, and it gives me strength. Thank you everyone it really helps. Socks are pulled up and ready to go the distance. Much love the leas x
Sorry it's been so long since the last update we've had a busy few days, we went to the Chickasaw cultural centre on Saturday where the kids got to learn about Native American life and create lots of Christmas crafts. We then went for a belly busting meal at TGI Fridays. On Sunday we went to Oklahoma City zoo, the monkeys were great but we only saw the trunk of an elephant as it's due to give birth on the 29th, not surprising they were anti social. Before we left a storm came, sending hail stones the size of prickly golf balls. Was very funny experience, Sam got hit on the head, sore but extremely funny for the rest of us. This week has been a lot of hospital visits. Frankie-rose has now started physical therapy twice a week, this should help to gain back the muscles in her legs. Our aim is for her to walk unaided and dance again in the near future. Today is Wednesday - graduation day. This happens weekly and is a celebration for patients who have completed therapy. Very sad but in a good way, having to say goodbye to new friends is hard but it's great that they have come to the end of this part of their journey. Gerald and Audrey will miss you especially. We have shared a true bond and having Gerald sing a song he had written for Frankie-rose whilst playing guitar tipped Sam and I over the edge. Those tears were because you are a great musician, a great friend and because your a special man. A 2 year old boy from England also graduated today, Tyler you are an inspiration and your dad was a pleasure to meet. Happy news is my mum Frankie-roses nan has been travelling through North and south America on a six month trip and has managed to spend a few days with us so we took her to see the Christmas lights, Freddie was awake this time so was definitely worth going back. Xxxxx
Went on the polar express this week to the North Pole where we found a special guest aka Santa Claus. Memories imprinted for life. The kids will remember the year we went to Oklahoma for nice reasons, warm childhood memories not just the year Frankie-rose had treatment. Glad that if we have to be away from home this Christmas this is where we are x
We said goodbye to Audrey and Gerald and before they went they left a card at reception for us. Inside was the most beautiful letter and some money to go and have some fun. We went bowling and another guy gave the kids a fun pass to use at the amusements worth $30 we had never met him but found his phone and handed it in, after we went to TGI Fridays where a waiter paid for our meal, offered us seats at his families Christmas dinner and invited us to attend his church. Vangie another patient has left us some wrapped presents for the kids. What a day, just when you think life is crap people just blow you out of the water and you think what an amazing life and fantastic people we have met. God bless humanity. To everyone that has kept us going during this nightmare, thank you thank you thank you it gets us out of bed in the morning. People here are very kind and it helps when we feel so lonely. Whilst I'm thanking my husband is my strength, he never wobbles at the same time as me, he is my rock and has coped much better then I ever imagined he would. To my sons for making this journey with us, you've made life so much easier, I couldn't have done it without you, all the noise makes me feel normal, and to my hero my daughter, you make it easy for mummy and daddy because no matter what you just keep smiling. I feel very lucky to have my family.xxxxx
When we first got here Frankie-rose would only eat pepperoni slices the following week it was only sausage and bacon 3 x a day, then we moved onto just egg white, last week it was omelettes for breakfast lunch and dinner. This week is not so good, yesterday a bowl of cereal and today approximately 6 oranges. Hope tomorrow she has more appetite even if it's limited to one thing. Sleepiness and nausea can be side effects although she's showed signs of neither so far. She has a pink stripe down her back from the rays of radiation and pink around her eyes like a little raccoon. Still creaming her head twice a day and so far no redness at all. She looks really good and is getting stronger on her frame every day. Her hard work in physio is really starting show. Proud of you princess xx
When we first got here Frankie-rose would only eat pepperoni slices the following week it was only sausage and bacon 3 x a day, then we moved onto just egg white, last week it was omelettes for breakfast lunch and dinner. This week is not so good, yesterday a bowl of cereal and today approximately 6 oranges. Hope tomorrow she has more appetite even if it's limited to one thing. Sleepiness and nausea can be side effects although she's showed signs of neither so far. She has a pink stripe down her back from the rays of radiation and pink around her eyes like a little raccoon. Still creaming her head twice a day and so far no redness at all. She looks really good and is getting stronger on her frame every day. Her hard work in physio is really starting show. Proud of you princess xx
Also her mum told everyone yesterday that she personally is struggling, she is really missing home now and everyone, the home sickness is rife with all the family but she's trying not to let frankie see her down, I expect that everyone in that situation will have down days but michelle is a great mum and I'm sure she'll come out of it smiling and thankful. She was also I think a little taken aback at how powerful and painful the treatment is, a whole new level to radiotherapy here but hopefully every bit is worth it.
It can't be easy for the families of cancer patients, having to watch their suffering and being unable to help. Hopefully, they will all stay strong together and the end result will be more than worth it. Wish them all the very best.
Lovely story from michelle today, believe she also posted it on the frankie-rose facebook page, but for those that never read it.
Before being diagnosed in August frankie-rose had never been into hospital, so it was a major thing for her. As all the doctors had questions / treatments / and examinations for her she took a dislike it all doctors. She got on better with the nurses but with the doctors was rude and uncooperative. At our appointment with Doctor Confer yesterday she sat in the doctors chair and he sat on the patient seat. Halfway through she climbed up onto the patients chair and cuddled herself into doctor Confer, to which he wrapped his arms around her and cuddled her back. It was truly a sight to see she has finally got over her fear of doctors and it literally made my heart melt. Thank you Doctor Confer for being the one to break the ice. Your dimples that she calls nimples light up your face and have made my baby love you. Your a special guy. Xx
The most exciting news I've posted so far......... Treatment will be finished at the end of the week. Could not be prouder of my baby, she has coped extremely well, has made fantastic progress and is stronger then ever. Making plans to go to disney before we get home. Time for some fun. Xxx counting down the days xx
Do you know what the prognosis is now? For example, does this treatment "cure" Frankie-Rose, or is it the pre-cursor to surgery, or what? Very much hope this story is nearing a fabulous conclusion but I'm wondering if it's just the end of the first chapter.
Do you know what the prognosis is now? For example, does this treatment "cure" Frankie-Rose, or is it the pre-cursor to surgery, or what? Very much hope this story is nearing a fabulous conclusion but I'm wondering if it's just the end of the first chapter.
Unfortunately I don't and am merely relaying info as a member of the FB group. Hopefully sadiejane, who is closer to "home", will be able to answer this.
We are all hopeful of the best possible outcome for Frankie-Rose. Even more so given the ground breaking nature of the treatment in question as it might open the door to others in this country in the same dreadful position. I say "might" because there is always the question of funding. And without turning this thread into a political one, it is about time that the government, whoever they are, did more to ensure that such treatment is available - whatever the cost.
Comments
Frankie should be an inspiration to us all.
She has done the hardest part, as it was the 1st session Frankie rose was extremely anxious this morning, she had a belly ache and was crying by the time she was wheeled away for proton treatment. It's really hard for Sam and I as we're not allowed in the room with her because of the radiation but as she was upset they let me come into the room known as the gantry, it's the largest of 4 and transmits from a 360 degree angle. I was able to kiss and cuddle her until she was calm. By the time I was asked to leave she was requesting track 2 from the frozen album. She knows what she wants !! We waited for forever that's how long an hr takes when your doing this, and when she came back she felt much better and had managed to take a nap. Feeling extremely proud of our courageous girl. Xxxx ironically the machine are made and produced in Belgium and are being up kept by a Belgium company. I also read that it was invented in Cambridge. It took 18 months to build procure here from 1st brick to 1st patient. Y is the nhs taking 5 years and if it's a European product why do the nhs send all patients to US? By the way, the 6-8 wk yes we needed to be funded by the proton panel in the UK turned Frankie-rose's case down in 1 week. Wtf!!!!
Couldn't help feeling hopeful on the one hand and anger on the other when I read this.
As it's the weekend Frankie-rose has two days off, today we went to the memorial museum in brick town, had an amazing lunch at blus bbq and then went to braums ice cream parlour (they were huge) kids managed to finish theirs but mum and dad struggled. Never thought I'd be too old for ice dream! After so much hospital time it was nice to get out and about and gave a little fun xx
Frankie-rose has completed 4 sessions of proton beam so far, she got upset for the last 10 minutes (lasts 1 hr) yesterday and Sam was able to go behind the scenes and comfort her, she said the mask was uncomfortable, today she got through it ok but couldn't keep still towards the end - no tears at least, an hour is awfully long to be still and at 7 time lasts forever..... We're very proud and comforted to know that she didn't get upset. An artist/radiologist is going to decorate her mask frozen style to try to make the situation easy. Bless u Dennis, it's easy to see why your her favourite. They have bonded over 1D and his attempts at stealing her slippers. Having a trip to register at the local hospital tomorrow for routine check ups. Almost Friday when she gets some time off. Counting down the days. The boys are much more involved here and it helps them to cope I think. They Procure clinic go out of their way for all 3 children. So glad we're all here together. Couldn't have bear to of been parted. XxxxX
Been a rough day, feeling lonely and tearful, that's me not Frankie she as always is coping much better then the rest of us. Not sure why everything is going well, just feel hopeless and helpless some times. On a plus note Frankie has been out of the wheelchair for 2 days now and using her walking frame. She is now independently stealing Oreos at any given opportunity. Lol sometimes wish a biscuit would take all my troubles away, if only life were that easy....
Hi everyone, thanks for listening, woke up much better, shook it off and am now ready to face anything. Frankie-rose is my inspiration, just looking at her makes me smile. If she can do it, what right do we have to crumble. Just a shaky moment after all the highs. Anyway in the best place getting the best treatment thanks to every single one of you. Our army is huge, supportive, and it gives me strength. Thank you everyone it really helps. Socks are pulled up and ready to go the distance. Much love the leas x
Sorry it's been so long since the last update we've had a busy few days, we went to the Chickasaw cultural centre on Saturday where the kids got to learn about Native American life and create lots of Christmas crafts. We then went for a belly busting meal at TGI Fridays. On Sunday we went to Oklahoma City zoo, the monkeys were great but we only saw the trunk of an elephant as it's due to give birth on the 29th, not surprising they were anti social. Before we left a storm came, sending hail stones the size of prickly golf balls. Was very funny experience, Sam got hit on the head, sore but extremely funny for the rest of us. This week has been a lot of hospital visits. Frankie-rose has now started physical therapy twice a week, this should help to gain back the muscles in her legs. Our aim is for her to walk unaided and dance again in the near future. Today is Wednesday - graduation day. This happens weekly and is a celebration for patients who have completed therapy. Very sad but in a good way, having to say goodbye to new friends is hard but it's great that they have come to the end of this part of their journey. Gerald and Audrey will miss you especially. We have shared a true bond and having Gerald sing a song he had written for Frankie-rose whilst playing guitar tipped Sam and I over the edge. Those tears were because you are a great musician, a great friend and because your a special man. A 2 year old boy from England also graduated today, Tyler you are an inspiration and your dad was a pleasure to meet. Happy news is my mum Frankie-roses nan has been travelling through North and south America on a six month trip and has managed to spend a few days with us so we took her to see the Christmas lights, Freddie was awake this time so was definitely worth going back. Xxxxx
Went on the polar express this week to the North Pole where we found a special guest aka Santa Claus. Memories imprinted for life. The kids will remember the year we went to Oklahoma for nice reasons, warm childhood memories not just the year Frankie-rose had treatment. Glad that if we have to be away from home this Christmas this is where we are x
We said goodbye to Audrey and Gerald and before they went they left a card at reception for us. Inside was the most beautiful letter and some money to go and have some fun. We went bowling and another guy gave the kids a fun pass to use at the amusements worth $30 we had never met him but found his phone and handed it in, after we went to TGI Fridays where a waiter paid for our meal, offered us seats at his families Christmas dinner and invited us to attend his church. Vangie another patient has left us some wrapped presents for the kids. What a day, just when you think life is crap people just blow you out of the water and you think what an amazing life and fantastic people we have met. God bless humanity. To everyone that has kept us going during this nightmare, thank you thank you thank you it gets us out of bed in the morning. People here are very kind and it helps when we feel so lonely. Whilst I'm thanking my husband is my strength, he never wobbles at the same time as me, he is my rock and has coped much better then I ever imagined he would. To my sons for making this journey with us, you've made life so much easier, I couldn't have done it without you, all the noise makes me feel normal, and to my hero my daughter, you make it easy for mummy and daddy because no matter what you just keep smiling. I feel very lucky to have my family.xxxxx
When we first got here Frankie-rose would only eat pepperoni slices the following week it was only sausage and bacon 3 x a day, then we moved onto just egg white, last week it was omelettes for breakfast lunch and dinner. This week is not so good, yesterday a bowl of cereal and today approximately 6 oranges. Hope tomorrow she has more appetite even if it's limited to one thing. Sleepiness and nausea can be side effects although she's showed signs of neither so far. She has a pink stripe down her back from the rays of radiation and pink around her eyes like a little raccoon. Still creaming her head twice a day and so far no redness at all. She looks really good and is getting stronger on her frame every day. Her hard work in physio is really starting show. Proud of you princess xx
Before being diagnosed in August frankie-rose had never been into hospital, so it was a major thing for her. As all the doctors had questions / treatments / and examinations for her she took a dislike it all doctors. She got on better with the nurses but with the doctors was rude and uncooperative. At our appointment with Doctor Confer yesterday she sat in the doctors chair and he sat on the patient seat. Halfway through she climbed up onto the patients chair and cuddled herself into doctor Confer, to which he wrapped his arms around her and cuddled her back. It was truly a sight to see she has finally got over her fear of doctors and it literally made my heart melt. Thank you Doctor Confer for being the one to break the ice. Your dimples that she calls nimples light up your face and have made my baby love you. Your a special guy. Xx
The most exciting news I've posted so far......... Treatment will be finished at the end of the week. Could not be prouder of my baby, she has coped extremely well, has made fantastic progress and is stronger then ever. Making plans to go to disney before we get home. Time for some fun. Xxx counting down the days xx
Hope they have a fantastic time at Disney .
Do you know what the prognosis is now? For example, does this treatment "cure" Frankie-Rose, or is it the pre-cursor to surgery, or what? Very much hope this story is nearing a fabulous conclusion but I'm wondering if it's just the end of the first chapter.
We are all hopeful of the best possible outcome for Frankie-Rose. Even more so given the ground breaking nature of the treatment in question as it might open the door to others in this country in the same dreadful position. I say "might" because there is always the question of funding. And without turning this thread into a political one, it is about time that the government, whoever they are, did more to ensure that such treatment is available - whatever the cost.