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Hiya! I’m Jennifer Calland, wife to Christopher Calland and mother to our beautiful children Arthur and Victoria.
Victoria has been very poorly as she has been diagnosed with eRMS (embryonal Rhabdomyosarcoma) on 3rd June 2016. However, her cancer journey started back in mid-April 2016. We are raising money to try to recoup costs associated with her care to date as well as upcoming expenses anticipated for when she goes to America for Proton Beam Therapy.
It has been a strange journey as DeeDee's original diagnosis was choledochal cyst. She was airlifted to Leeds for further investigation.
She presented perfectly with choledochal cyst, even responded immediately to initial treatment. It was a rare disease as well, but we had all of the right people in Leeds to help her.
Home leave was great for us as I was very concerned for Arthur, who is currently under-going diagnosis for Autistic Spectrum Disorder. For a few days without knowing where his mother and sister were, he shut down from everyone. However, within hours of everyone getting back home, he bounced back to his happy, cheerful self.
Later, we had a rough plan for what was going to happen to resolve this choledochal cyst. DeeDee would have a MRI on 12th of May. We’d meet with liver specialist doctors on 23rd May and would likely have DeeDee’s hepaticojejunostomy scheduled within the next 6-8 weeks. We were actually very excited about this surgery because it would be using the latest laparoscopic and robot assisted technology with a less invasive approach that would help DeeDee bounce back faster and have fewer problems downstream. I had a few challenges, especially with arranging care for Arthur while DeeDee and I were away, as a children’s liver ward is not the right place for an active ASD child. In the meantime, DeeDee would be given URSO to continue to relieve pressure on her liver.
Then on Thursday, 19th May, DeeDee was at nursery and developed a temperature. We rushed her to Wigan A&E, but they had to transfer us to Warrington because there were not enough nurses on Rainbow Ward in Wigan to provide DeeDee with a bed and medical attention from staff who were already very familiar with her case. After a frustrating weekend trying to get back to Wigan Rainbow Ward, we were released on home leave with the understanding that DeeDee was still an in-patient at Wigan but would attend our 23rd May post-MRI out-patient appointment.
On the morning of 23rd May, we returned to Wigan Infirmary for another round of blood tests. We were due to be in Leeds later that day, but because doctors couldn’t find any infection to explain her fever, nor could explain the return of her symptoms (jaundice, brown urine, ashy stools), nor could explain a new symptom—her haemoglobin was steadily dropping, unexpectedly, Leeds asked us to stay put in Wigan. Consequently, DeeDee was noticeably slowing down. An ultrasound was run to try to find out if her choledochal cyst was bleeding (in spite of there being no trace of bleeding in her stools) and radiographer noted no change there. Later on the 23rd, we heard from Leeds. Doctors had met regarding her MRI on the 12th May and pencilled in an urgent hepaticojejunostomy for 7th June.
By May 25th, DeeDee continued to fade. She had very little energy. Her bloods showed that her liver was under a tremendous amount of pressure and it had very visibly enlarged to at least twice its former size where it should have improved under continued URSO and anti-biotic treatment. DeeDee began refusing all food and was turning very pale and clearly dangerously anaemic. The lead paediatrician at Wigan Infirmary ordered a new set of bloods and began corresponding with Heamotology specialists in Greater Manchester and introduced us to the idea that it was possible that DeeDee had a co-existing condition that either caused the choledochal cyst or else was caused by it. We were allowed home leave again after taking those bloods as there was nothing more the hospital could do for us. Though into the 26th of May, DeeDee and I slept overnight on Rainbow Ward.
By morning 26th May, we managed to get DeeDee to eat and she perked up a bit. While her haemoglobin remained dangerously low, it had stabilized. At this point, it was up to Leeds to go ahead and take her in or just wait until her surgery on 7th June. We were free to go on home leave again, as once again, there wasn’t much more local hospital could do to treat her. Surprisingly, a bed at Leeds came up a few hours later, as we weren’t anticipating a bed being ready until Friday at the earliest.
Nurses came around at about 1am 27th of May to put in another cannula (she’s probably had at least 20 at this point) to take another set of bloods. Later in the morning, doctors said DeeDee had lost more blood but they had no idea where the internal bleed was, so she would need to receive a blood transfusion.
Three hours after receiving this life saving gift, DeeDee was dancing around all full of energy and singing in her hospital room. Because doctors still did not know why DeeDee was losing blood, her urgent hepaticojejunostomy was moved from 7th of June to an emergency surgery on 2nd June. On the 28th, we were released to home leave again to try to enjoy the holiday weekend all together as a family after being apart too often and too long.
On 31st of May, DeeDee attended what would later become her last day at nursery. We invited her best friend over for dinner and a little party and the kids had a great time.
Then 2nd June, DeeDee was prepped for surgery and in at 8am and didn’t come out until 7pm. We were told to anticipate that the surgery would go long, as it took time to position the robotics just right for this less invasive surgery. At about 4pm, we got an update that everything was going to plan and that DeeDee was doing well.
The doctor overviewed the procedure with us. First, they injected a dye into her gall bladder and found that there was a blockage at the opening of the gall bladder and a blockage where the bile duct meets the duodenum. Where the doctor expected to find sludgy bile in the cyst, instead he found a sunshine yellow jelly sort of substance… I guess, imagine velveeta… in the ducts. All of the tissue had been sent to pathology for further investigation. The rest of the procedure was by the book. There was an incision made below her belly button, and two other tiny incisions about 3 inches to either side where robotics had gone in to take out her ducts, to take out a piece of her small intestine to pull out and fashion into replacement ducts and then to plumb everything back together again. I was curious about this velveeta-jelly that they found, but had no idea what was coming next.
Most of 3rd June was helping DeeDee remain comfortable and healing after her big surgery. Her colour was very quickly returning back to normal. However, she wasn’t interested in moving or talking. At best we were able to get only nods and shakes of the head and an air mattress had to be ordered for her as she was quickly developing bed sores.
At about 7pm, our liver doctor introduced us to a haematologist and took us to a quiet room to share some news with us. They had the report back from pathology and what they found was a cancerous tumour. They called it Rhabdomyosarcoma. It was embryonic, which wasn’t ‘as bad’. They could tell us that there would certainly be at least one course of chemotherapy to try to ‘mop up’ after the surgery and that best case scenario, they got all of the cancerous tissue with the hepaticojejunostomy. But also that they couldn’t be sure unless pathology could account for all of the margin cells around the tumour and further test the velveeta like jelly to check for signs of metastasis.
To say the least, it was devastating news. Even more so because of all that we had already experienced. Where we thought we were coming to the end of a horrible chapter, it now appeared as though it was only the beginning of a much longer terrible saga.
4th June, I was determined to be positive. I talked to the Play Specialist on the surgery recovery ward and we got DeeDee some paints and little Miss Rembrandt set to work. She did several paintings, and some were scary smart… like one of yellow hand prints that she told me meant when she was getting sick and then another with pink hand prints showing that she was getting well again. And for that day, yellow was solidly her favourite colour rather than pink. She even did a piece reminiscent of Van Gogh’s Starry Night. She was smiling and even laughing… painting really brings DeeDee out of her shell and is very therapeutic for her.
And then we learned that doctors wanted to do another surgery the next day because the drain in her belly hadn’t changed colour as it was expected to and was leaking more fluid than they had anticipated. Doctors suspected that there was a leak in the newly re-plumbed small intestine bit now acting as her bile ducts. Further, they wanted to take a couple of bone marrow biopsies to check for metastasis. And even further, they wanted to install a central line so that she’d be ready for chemotherapy as early as the following week. I got to choose between a Hickman Line and a Portacath… which for me, was a no-brainer… if there’s some silver lining somewhere, for the type of chemo DeeDee would need, we could use a Portacath. I don’t think I could sleep at night if she had a Hickman Line in.
There was some more delay in getting DeeDee to theatre as her bloods showed that she lacked platelets, so she had a lifesaving platelet transfusion. She went into surgery again at about 11 am and came out at about 7pm. The haematologist came to me at about 1pm to say that everything was going well and her portion of the surgery was finished where she took a bone marrow aspiration and a bone marrow trephine to check for cancer. At about 3pm, a nurse updated me. Our liver doctor had taken the less invasive robotics to try to insert a camera to see if they could find the leak that was causing DeeDee to lose so much fluid in her belly. Alas, he could not find anything, so they had to convert her surgery to an open surgery so that they could have a better look in an effort to repair the leak. The last procedure would be her Portacath going in.
When she came out of surgery, DeeDee wasn’t feeling that great, and who could blame her? Doctors said that they conducted a number of tests to try to find the leak and that they could not find any. An associate liver surgeon suggested that since her liver was backed up with the blockages for so long that the fluid collected was from the liver shrinking back to a more normal size, with the fluid pressing past stitches and causing DeeDee more pain than what would normally be anticipated.
New information incoming in spite of my “I.Just.Can’t” day included learning that chemo would last for 6 months. We’d be in hospital for 3 days every 3 weeks and they wanted to start her mid next week. They wanted to do a CT Scan and a bone scan and were checking to see if the MRI from 12th May would suffice. And further, DeeDee might need radiotherapy. On the bright side, it was the new proton beam therapy that was greatly advocated as it has fewer side effects than traditional radiotherapy. However, the proton beam machines requisitioned by the NHS post Ashya King wouldn’t be online until 2018. So that means we’re being flown to America for this treatment. Well at least my daughter would get to fly on a plane, over the ocean, and see what her mommy’s homeland is like and be around all of these people who talk like her mom.
I knew how bad I was doing and I couldn’t imagine how badly DeeDee was doing. So even on my “I.Just.Can’t.” day, I was on a mission to find people who could talk to DeeDee about what was going to happen where I just couldn’t. A Macmillan Nurse in Leeds stepped up to the task and arranged to have a Play Specialist visit the next day to introduce DeeDee to chemo-duck—a specially tailored stuffed toy used to explain Hickman Lines, Portacaths, and hair loss. Also, I had to make arrangements with DeeDee’s nursery to let them know that she wouldn’t be returning to pre-school and deal with everything that was implied as well.
Bless my daughter and her strength and integrity. 7th June found her smiling and laughing, pretending to be Queen Elsa from Frozen as she started on her MRSA decolonization baths (something I had to remind nurses about from the reading that the haematologist offered, rather than something that was ordered for DeeDee immediately) and felt more refreshed. Later that day, DeeDee was introduced to her chemo-duck and named it after a friend from nursery. We got some optimistic news that the lymph nodes that had been removed along with her bile ducts showed no sign of cancer, but that pathologists still couldn’t account for all margin cells and were looking deeper to find out if DeeDee would still need radiotherapy. We also learned that her 12th May MRI would suffice for their needs and her bone scan and CT scan were scheduled. And finally, we learned that we might have a little bit of home leave before all of the cancer chemo portion of DeeDee’s new journey commenced. DeeDee was taken off all of her lines except for her IV line for nourishment and pain medication. Her Portacath was still causing her some discomfort, but she was well enough to be moved out to the general ward, rather than in a private room.
We were introduced to ‘Beads of Courage’, a program for encouraging children of serious illness and their parents. Our Macmillan nurse asked us to record only those feats of bravery DeeDee endured while in Leeds’ care. My breath was taken away when I counted 38 beads.
8th June, DeeDee finally was ready to walk and walked down to a café to have some ice cream.
On the 9th June, DeeDee had her CT Scan and we got to collect her Courage Beads. I didn’t have a full understanding of how Courage Beads were counted, so while I had counted only 38, it turned out DeeDee had earned 83 Courage Beads in the time she has been in Leeds’ care (not counting Wigan and Warrington).
On 10th June, we were once again released for home leave before chemo started and we left with some optimistic news: Bone marrow aspiration was negative for cancer. Bone marrow trephine was negative for cancer. CT Scan was negative for cancer. And bone scan was negative for cancer. So it looks like we got it at its source! We were definitely going to have to follow ‘IVA’ protocol for treatment and radiotherapy was still a possibility as pathology had not come back with their final results, accounting for all of the margin cells around the tumour.
13th June. We got DeeDee’s proposed treatment schedule. And we learned that chemo would start that night. My husband had to leave us so that he could care for our son Arthur. In spite of all of the turmoil DeeDee had faced in the last 8 weeks, none matched her terror at having her daddy leave her. And then DeeDee was completely off of food. And I started seeing major signs of my past anxiety issues cropping up which didn’t help anything. We were all just completely falling apart at the seams.
On the 15th of June, I ended up having to call my husband at 4:30 in the morning because DeeDee had some unexpected side effects from her chemo that left her with very little bladder control and she wet all of her clothes and changes of clothes throughout the night. So again, he’s having to make a mad rush to find some care for Arthur to rush to Royal Manchester Children’s Hospital at a moment’s notice. I can’t believe that was only 3 days ago, and the day after tomorrow we get to return for DeeDee’s Day Ward ‘V’ chemo treatment.
So. Are you exhausted at reading all of that? Hence, my reason for coming to you with a hat in my hand. It’s not often I go asking for help. And I can only recall once in my life when I’ve ever been this desperate. But with consideration to the costs already incurred for DeeDee’s care cross country and in preparation for her proton beam radiotherapy in Jacksonville, Florida USA in September, I am humbly asking for financial aid from friends, family, friends of friends and even strangers.
I carefully calculated out our need based on what’s been spent and went out for a number of quotes and estimates and I’m asking for a total of £5,500 to cover the following:
- Costs to date. This is made up of: a new car seat for DeeDee for all of the trips anticipated between Leeds and Wigan; Minecraft pocket edition for Arthur to keep him entertained while his family is away; Travel Lodge in Leeds where my husband stayed while we were there on 26th May; DeeDee’s childcare at nursery for June that is paid in advance and that she will never be able to use; food, gifts, toiletries and clothes while we were in Leeds and Warrington; new rugs for the house in preparation for making it a less germy place; new chairs at our dinner table to encourage eating together as a family and help with DeeDee’s anticipated mobility issues and sitting up as chemo continues; a new mattress for mommy and daddy as a month on hospital chair-beds taught me that it was my mattress that was causing me all of my back pain and will translate to me being more physically able to care for DeeDee; replacement bedding for both children in anticipation of nausea related issues and continued toilet training regression that they’ve both been experiencing; odds and ends like a digital ear thermometer since we’re taking DeeDee’s temperature at least 2x daily while monitoring her health while on chemo; a water pitcher, because water and milk are about the only drinks DeeDee can stomach; new foods and snacks for DeeDee to experiment with as she’s completely off her food and chemo leaves a metallic taste to everything… so as if a three year old wasn’t picky enough about her food…
- Meals, refreshments, and toiletries while in Florida. While the NHS will foot the bill for travel and accommodation, they won’t pay for feeding us while we’re there.
- Various passport and visa fees.
- Car seat & gasoline. The NHS will pay for getting us to and from the hospital, and that’s it. Meanwhile, we’re there for 10 weeks.
- Needed incidentals such as a US based pre-paid cell phone and travel adapters.
We are applying for DLA for DeeDee, however their rules state that she has to be terribly ill for 3 months first before its granted. Meanwhile, our expenses are immediate. And much of what needs to be spent in anticipation for the radiotherapy in Florida will be spent before DLA is granted. I am using every resource I know of to lessen the burden, but none of these come as fast as the immediate need.
When you look after the pennies, the pounds take care of themselves. So any amount that you can spare will help me see DeeDee through her next six months of chemotherapy. And because I’m such a penny pincher, I will be tracking and justifying expenses.
Any expense that we do get refunded or any donations that go above and beyond what is actually used will be donated to the Roald Dahl's Marvellous Children's Charity to sponsor training for a Roald Dahl nurse on Ward 84 (Oncology) at the Royal Manchester Children's Hospital. We will also be sponsoring a Nursing Times subscription for nurses on that ward besides providing nurses in training with personalized notepads to remind them of how much DeeDee has been helped.
Thank you for your care and attention.
Victoria has been very poorly as she has been diagnosed with eRMS (embryonal Rhabdomyosarcoma) on 3rd June 2016. However, her cancer journey started back in mid-April 2016. We are raising money to try to recoup costs associated with her care to date as well as upcoming expenses anticipated for when she goes to America for Proton Beam Therapy.
It has been a strange journey as DeeDee's original diagnosis was choledochal cyst. She was airlifted to Leeds for further investigation.
She presented perfectly with choledochal cyst, even responded immediately to initial treatment. It was a rare disease as well, but we had all of the right people in Leeds to help her.
Home leave was great for us as I was very concerned for Arthur, who is currently under-going diagnosis for Autistic Spectrum Disorder. For a few days without knowing where his mother and sister were, he shut down from everyone. However, within hours of everyone getting back home, he bounced back to his happy, cheerful self.
Later, we had a rough plan for what was going to happen to resolve this choledochal cyst. DeeDee would have a MRI on 12th of May. We’d meet with liver specialist doctors on 23rd May and would likely have DeeDee’s hepaticojejunostomy scheduled within the next 6-8 weeks. We were actually very excited about this surgery because it would be using the latest laparoscopic and robot assisted technology with a less invasive approach that would help DeeDee bounce back faster and have fewer problems downstream. I had a few challenges, especially with arranging care for Arthur while DeeDee and I were away, as a children’s liver ward is not the right place for an active ASD child. In the meantime, DeeDee would be given URSO to continue to relieve pressure on her liver.
Then on Thursday, 19th May, DeeDee was at nursery and developed a temperature. We rushed her to Wigan A&E, but they had to transfer us to Warrington because there were not enough nurses on Rainbow Ward in Wigan to provide DeeDee with a bed and medical attention from staff who were already very familiar with her case. After a frustrating weekend trying to get back to Wigan Rainbow Ward, we were released on home leave with the understanding that DeeDee was still an in-patient at Wigan but would attend our 23rd May post-MRI out-patient appointment.
On the morning of 23rd May, we returned to Wigan Infirmary for another round of blood tests. We were due to be in Leeds later that day, but because doctors couldn’t find any infection to explain her fever, nor could explain the return of her symptoms (jaundice, brown urine, ashy stools), nor could explain a new symptom—her haemoglobin was steadily dropping, unexpectedly, Leeds asked us to stay put in Wigan. Consequently, DeeDee was noticeably slowing down. An ultrasound was run to try to find out if her choledochal cyst was bleeding (in spite of there being no trace of bleeding in her stools) and radiographer noted no change there. Later on the 23rd, we heard from Leeds. Doctors had met regarding her MRI on the 12th May and pencilled in an urgent hepaticojejunostomy for 7th June.
By May 25th, DeeDee continued to fade. She had very little energy. Her bloods showed that her liver was under a tremendous amount of pressure and it had very visibly enlarged to at least twice its former size where it should have improved under continued URSO and anti-biotic treatment. DeeDee began refusing all food and was turning very pale and clearly dangerously anaemic. The lead paediatrician at Wigan Infirmary ordered a new set of bloods and began corresponding with Heamotology specialists in Greater Manchester and introduced us to the idea that it was possible that DeeDee had a co-existing condition that either caused the choledochal cyst or else was caused by it. We were allowed home leave again after taking those bloods as there was nothing more the hospital could do for us. Though into the 26th of May, DeeDee and I slept overnight on Rainbow Ward.
By morning 26th May, we managed to get DeeDee to eat and she perked up a bit. While her haemoglobin remained dangerously low, it had stabilized. At this point, it was up to Leeds to go ahead and take her in or just wait until her surgery on 7th June. We were free to go on home leave again, as once again, there wasn’t much more local hospital could do to treat her. Surprisingly, a bed at Leeds came up a few hours later, as we weren’t anticipating a bed being ready until Friday at the earliest.
Nurses came around at about 1am 27th of May to put in another cannula (she’s probably had at least 20 at this point) to take another set of bloods. Later in the morning, doctors said DeeDee had lost more blood but they had no idea where the internal bleed was, so she would need to receive a blood transfusion.
Three hours after receiving this life saving gift, DeeDee was dancing around all full of energy and singing in her hospital room. Because doctors still did not know why DeeDee was losing blood, her urgent hepaticojejunostomy was moved from 7th of June to an emergency surgery on 2nd June. On the 28th, we were released to home leave again to try to enjoy the holiday weekend all together as a family after being apart too often and too long.
On 31st of May, DeeDee attended what would later become her last day at nursery. We invited her best friend over for dinner and a little party and the kids had a great time.
Then 2nd June, DeeDee was prepped for surgery and in at 8am and didn’t come out until 7pm. We were told to anticipate that the surgery would go long, as it took time to position the robotics just right for this less invasive surgery. At about 4pm, we got an update that everything was going to plan and that DeeDee was doing well.
The doctor overviewed the procedure with us. First, they injected a dye into her gall bladder and found that there was a blockage at the opening of the gall bladder and a blockage where the bile duct meets the duodenum. Where the doctor expected to find sludgy bile in the cyst, instead he found a sunshine yellow jelly sort of substance… I guess, imagine velveeta… in the ducts. All of the tissue had been sent to pathology for further investigation. The rest of the procedure was by the book. There was an incision made below her belly button, and two other tiny incisions about 3 inches to either side where robotics had gone in to take out her ducts, to take out a piece of her small intestine to pull out and fashion into replacement ducts and then to plumb everything back together again. I was curious about this velveeta-jelly that they found, but had no idea what was coming next.
Most of 3rd June was helping DeeDee remain comfortable and healing after her big surgery. Her colour was very quickly returning back to normal. However, she wasn’t interested in moving or talking. At best we were able to get only nods and shakes of the head and an air mattress had to be ordered for her as she was quickly developing bed sores.
At about 7pm, our liver doctor introduced us to a haematologist and took us to a quiet room to share some news with us. They had the report back from pathology and what they found was a cancerous tumour. They called it Rhabdomyosarcoma. It was embryonic, which wasn’t ‘as bad’. They could tell us that there would certainly be at least one course of chemotherapy to try to ‘mop up’ after the surgery and that best case scenario, they got all of the cancerous tissue with the hepaticojejunostomy. But also that they couldn’t be sure unless pathology could account for all of the margin cells around the tumour and further test the velveeta like jelly to check for signs of metastasis.
To say the least, it was devastating news. Even more so because of all that we had already experienced. Where we thought we were coming to the end of a horrible chapter, it now appeared as though it was only the beginning of a much longer terrible saga.
4th June, I was determined to be positive. I talked to the Play Specialist on the surgery recovery ward and we got DeeDee some paints and little Miss Rembrandt set to work. She did several paintings, and some were scary smart… like one of yellow hand prints that she told me meant when she was getting sick and then another with pink hand prints showing that she was getting well again. And for that day, yellow was solidly her favourite colour rather than pink. She even did a piece reminiscent of Van Gogh’s Starry Night. She was smiling and even laughing… painting really brings DeeDee out of her shell and is very therapeutic for her.
And then we learned that doctors wanted to do another surgery the next day because the drain in her belly hadn’t changed colour as it was expected to and was leaking more fluid than they had anticipated. Doctors suspected that there was a leak in the newly re-plumbed small intestine bit now acting as her bile ducts. Further, they wanted to take a couple of bone marrow biopsies to check for metastasis. And even further, they wanted to install a central line so that she’d be ready for chemotherapy as early as the following week. I got to choose between a Hickman Line and a Portacath… which for me, was a no-brainer… if there’s some silver lining somewhere, for the type of chemo DeeDee would need, we could use a Portacath. I don’t think I could sleep at night if she had a Hickman Line in.
There was some more delay in getting DeeDee to theatre as her bloods showed that she lacked platelets, so she had a lifesaving platelet transfusion. She went into surgery again at about 11 am and came out at about 7pm. The haematologist came to me at about 1pm to say that everything was going well and her portion of the surgery was finished where she took a bone marrow aspiration and a bone marrow trephine to check for cancer. At about 3pm, a nurse updated me. Our liver doctor had taken the less invasive robotics to try to insert a camera to see if they could find the leak that was causing DeeDee to lose so much fluid in her belly. Alas, he could not find anything, so they had to convert her surgery to an open surgery so that they could have a better look in an effort to repair the leak. The last procedure would be her Portacath going in.
When she came out of surgery, DeeDee wasn’t feeling that great, and who could blame her? Doctors said that they conducted a number of tests to try to find the leak and that they could not find any. An associate liver surgeon suggested that since her liver was backed up with the blockages for so long that the fluid collected was from the liver shrinking back to a more normal size, with the fluid pressing past stitches and causing DeeDee more pain than what would normally be anticipated.
New information incoming in spite of my “I.Just.Can’t” day included learning that chemo would last for 6 months. We’d be in hospital for 3 days every 3 weeks and they wanted to start her mid next week. They wanted to do a CT Scan and a bone scan and were checking to see if the MRI from 12th May would suffice. And further, DeeDee might need radiotherapy. On the bright side, it was the new proton beam therapy that was greatly advocated as it has fewer side effects than traditional radiotherapy. However, the proton beam machines requisitioned by the NHS post Ashya King wouldn’t be online until 2018. So that means we’re being flown to America for this treatment. Well at least my daughter would get to fly on a plane, over the ocean, and see what her mommy’s homeland is like and be around all of these people who talk like her mom.
I knew how bad I was doing and I couldn’t imagine how badly DeeDee was doing. So even on my “I.Just.Can’t.” day, I was on a mission to find people who could talk to DeeDee about what was going to happen where I just couldn’t. A Macmillan Nurse in Leeds stepped up to the task and arranged to have a Play Specialist visit the next day to introduce DeeDee to chemo-duck—a specially tailored stuffed toy used to explain Hickman Lines, Portacaths, and hair loss. Also, I had to make arrangements with DeeDee’s nursery to let them know that she wouldn’t be returning to pre-school and deal with everything that was implied as well.
Bless my daughter and her strength and integrity. 7th June found her smiling and laughing, pretending to be Queen Elsa from Frozen as she started on her MRSA decolonization baths (something I had to remind nurses about from the reading that the haematologist offered, rather than something that was ordered for DeeDee immediately) and felt more refreshed. Later that day, DeeDee was introduced to her chemo-duck and named it after a friend from nursery. We got some optimistic news that the lymph nodes that had been removed along with her bile ducts showed no sign of cancer, but that pathologists still couldn’t account for all margin cells and were looking deeper to find out if DeeDee would still need radiotherapy. We also learned that her 12th May MRI would suffice for their needs and her bone scan and CT scan were scheduled. And finally, we learned that we might have a little bit of home leave before all of the cancer chemo portion of DeeDee’s new journey commenced. DeeDee was taken off all of her lines except for her IV line for nourishment and pain medication. Her Portacath was still causing her some discomfort, but she was well enough to be moved out to the general ward, rather than in a private room.
We were introduced to ‘Beads of Courage’, a program for encouraging children of serious illness and their parents. Our Macmillan nurse asked us to record only those feats of bravery DeeDee endured while in Leeds’ care. My breath was taken away when I counted 38 beads.
8th June, DeeDee finally was ready to walk and walked down to a café to have some ice cream.
On the 9th June, DeeDee had her CT Scan and we got to collect her Courage Beads. I didn’t have a full understanding of how Courage Beads were counted, so while I had counted only 38, it turned out DeeDee had earned 83 Courage Beads in the time she has been in Leeds’ care (not counting Wigan and Warrington).
On 10th June, we were once again released for home leave before chemo started and we left with some optimistic news: Bone marrow aspiration was negative for cancer. Bone marrow trephine was negative for cancer. CT Scan was negative for cancer. And bone scan was negative for cancer. So it looks like we got it at its source! We were definitely going to have to follow ‘IVA’ protocol for treatment and radiotherapy was still a possibility as pathology had not come back with their final results, accounting for all of the margin cells around the tumour.
13th June. We got DeeDee’s proposed treatment schedule. And we learned that chemo would start that night. My husband had to leave us so that he could care for our son Arthur. In spite of all of the turmoil DeeDee had faced in the last 8 weeks, none matched her terror at having her daddy leave her. And then DeeDee was completely off of food. And I started seeing major signs of my past anxiety issues cropping up which didn’t help anything. We were all just completely falling apart at the seams.
On the 15th of June, I ended up having to call my husband at 4:30 in the morning because DeeDee had some unexpected side effects from her chemo that left her with very little bladder control and she wet all of her clothes and changes of clothes throughout the night. So again, he’s having to make a mad rush to find some care for Arthur to rush to Royal Manchester Children’s Hospital at a moment’s notice. I can’t believe that was only 3 days ago, and the day after tomorrow we get to return for DeeDee’s Day Ward ‘V’ chemo treatment.
So. Are you exhausted at reading all of that? Hence, my reason for coming to you with a hat in my hand. It’s not often I go asking for help. And I can only recall once in my life when I’ve ever been this desperate. But with consideration to the costs already incurred for DeeDee’s care cross country and in preparation for her proton beam radiotherapy in Jacksonville, Florida USA in September, I am humbly asking for financial aid from friends, family, friends of friends and even strangers.
I carefully calculated out our need based on what’s been spent and went out for a number of quotes and estimates and I’m asking for a total of £5,500 to cover the following:
- Costs to date. This is made up of: a new car seat for DeeDee for all of the trips anticipated between Leeds and Wigan; Minecraft pocket edition for Arthur to keep him entertained while his family is away; Travel Lodge in Leeds where my husband stayed while we were there on 26th May; DeeDee’s childcare at nursery for June that is paid in advance and that she will never be able to use; food, gifts, toiletries and clothes while we were in Leeds and Warrington; new rugs for the house in preparation for making it a less germy place; new chairs at our dinner table to encourage eating together as a family and help with DeeDee’s anticipated mobility issues and sitting up as chemo continues; a new mattress for mommy and daddy as a month on hospital chair-beds taught me that it was my mattress that was causing me all of my back pain and will translate to me being more physically able to care for DeeDee; replacement bedding for both children in anticipation of nausea related issues and continued toilet training regression that they’ve both been experiencing; odds and ends like a digital ear thermometer since we’re taking DeeDee’s temperature at least 2x daily while monitoring her health while on chemo; a water pitcher, because water and milk are about the only drinks DeeDee can stomach; new foods and snacks for DeeDee to experiment with as she’s completely off her food and chemo leaves a metallic taste to everything… so as if a three year old wasn’t picky enough about her food…
- Meals, refreshments, and toiletries while in Florida. While the NHS will foot the bill for travel and accommodation, they won’t pay for feeding us while we’re there.
- Various passport and visa fees.
- Car seat & gasoline. The NHS will pay for getting us to and from the hospital, and that’s it. Meanwhile, we’re there for 10 weeks.
- Needed incidentals such as a US based pre-paid cell phone and travel adapters.
We are applying for DLA for DeeDee, however their rules state that she has to be terribly ill for 3 months first before its granted. Meanwhile, our expenses are immediate. And much of what needs to be spent in anticipation for the radiotherapy in Florida will be spent before DLA is granted. I am using every resource I know of to lessen the burden, but none of these come as fast as the immediate need.
When you look after the pennies, the pounds take care of themselves. So any amount that you can spare will help me see DeeDee through her next six months of chemotherapy. And because I’m such a penny pincher, I will be tracking and justifying expenses.
Any expense that we do get refunded or any donations that go above and beyond what is actually used will be donated to the Roald Dahl's Marvellous Children's Charity to sponsor training for a Roald Dahl nurse on Ward 84 (Oncology) at the Royal Manchester Children's Hospital. We will also be sponsoring a Nursing Times subscription for nurses on that ward besides providing nurses in training with personalized notepads to remind them of how much DeeDee has been helped.
Thank you for your care and attention.
Organizer
Jennifer Calland
Organizer