Story written 2016

Jack was originally diagnosed with ALL when he was 3. He started a 3 year treatment plan of chemotherapy, sadly just when he was coming to the end of his treatment, he relapsed.

We were told Jack would need several months of intense chemo and a bone marrow transplant. This was devastating but Jack took it all in his stride.

We have now had the intense chemo, but unfortunately it has not worked as well as we had hoped. Jack is now trying a trial drug to get him ready for transplant. We pray everyday that Jack makes a full recovery.

Update 24th August 2016

Sadly Jack passed away this morning,  he had his make a wish day yesterday and then he passed away peacefully.

Update 7th August 2016

First of all, thank you so much for all the lovely post for Jack and his brothers! It has really given them a boost! Jack has just had a very high dose of chemo, and ,as his body has had a lot of chemo over 3 and half years, we know he is resistant to most chemo, we are remaining positive that this chemo will work. Then Jack can go to Great Ormond Street to have a trial treatment, if this trial works he can then have a bone marrow transplant.
Please pray for my beautiful boy.

Update 14th July 2016

Three weeks ago it was confirmed that Jack had minimal residual disease, meaning that a low level of disease has been detected. Jack has a number of Leukaemic cells in his body meaning that he is showing hints of Leukaemia. Now his bone marrow is showing up as almost 100%  Leukaemia. Jack is resistant to almost all of the chemotherapies available. Unfortunately, Jack is no longer eligible for his trial that he has been a part of, however, they are going to try him on another one instead.

Story written 2016

Ebonie was diagnosed with a germ cell tumour back in June 2014. We found a small bruise on her bum that didn’t seem to go away, and after several tests and a biopsy it was confirmed that Ebs had a tumour growing on her lower spine. It was a solid mass and was growing rapidly day by day and had already spread to her lungs, putting Ebs in the high risk category.

Following diagnosis, Ebonie underwent six rounds of chemo which immediately shrunk the tumour, enabling it to be removed through surgery in January 2015. The surgery was a great success, however there were still cancerous cells active in her lungs. These proved to be tricky to treat- the 2nd line chemo Ebs was placed on wasn’t working, so it was decided a 3rd line chemo would be used. This chemo was rarely used in children and hadn’t been used at Great Ormond Street in over five years. The chemo had a very high ethanol content too – meaning as it was infused Ebs would actually get drunk!

After 3rd line chemo Ebs was able to have surgery on her lungs to move the solid masses, which took place in January 2016. This was successful and very tough on Ebs as she was a great deal of pain. Following on from the surgery, tests showed that there were still active cells in her body, but we couldn’t find where. Therefore it was decided that Ebonie would have to have high dose chemotherapy. This comprises of 2 chemo drugs that were previously successful, but in a much higher dose.

For this to happen Ebs had to have a stem cell harvest- this is the collection of her own stem cells, which are given back to her following high dose chemo, so her body is able to reproduce its cells as the chemo kills them off.

As it stands, Ebs has just finished her first of two rounds of high dose chemo. She is in hospital in isolation for around four months, but possibly longer. This is the fifth different type of chemo on her little body and the more she has the harder and harder it gets for her. This is the last attempt at getting rid of the cancer, as after this we would have to move onto experimental treatment options.

Update 27th May 2017

Since finding out our little girl was terminal in February and that we didn’t know we had long left. We knew we had to use every opportunity we would to make memories although this had to be put on hold until Ebonie had some palliative radiotherapy on her abdomen.

Radiotherapy all in all went well and we had an amazing response both clinically with Ebonie and AFP-tumour monitoring. We just didn’t know how effective and for how long. Unfortunately recent reading showed that although we had a great response it was very short lived and the disease is spreading.

We recently had a CT scan which has showed extensive lesions within the lungs and that cannot be radiated at all due to the risks it carries.

Three days ago Ebonie started seizing at home which lead to her being hospitalised. Thankfully we seem to have it under control now and hope that we don’t have anymore episodes but we simply do not know as this was completely unexpected and not even considered as a possible symptom.

Despite all of this, all the ups and downs, the sadness, the heartache, we have had no choice but to face everything head on, Ebonie has been absolutely incredible dealing with her new changes like medicine Intake, requiring oxygen throughout the day and dealing with her changes to her body.

We thank everyone who are a part of Post Pals. You can be assured that you are putting a big smile on Ebonies face and distracting her with all your post being sent.

Update 1st March 2017

With heavy hearts and tears streaming we feel it is now time to share the latest updated with you all. Wednesday last week, we were told that treatment will be stopped, that the disease has progressed too far, and that it’s very likely chemo resistant. There are no other options. Our baby girl will be forever 4, she will never get to start school this year, she will never meet or be the amazing sister she so wanted to be, and she will never grow old or have her own little family. Our family are completely heartbroken. We have been told that they don’t know how long we have left with our princess. It is now time to do as much as we can with Ebonie, tick off everything she has on her list of things to do- big and little and we would appreciate your continued support at this difficult time. We will fill our Ebonies remaining life with love and laughter like she has generously given us the past 4 years. Our days and nights are extremely difficult right now. We are trying to juggle our emotions as well as making our days as special as we can with our Ebonie, so please be patient with any replies.

Update 20th February 2017

A lot has happened since our last update! Yes we went into GOSH on the day planned for the molecular results. Thankfully the results showed what our consultant had hoped for warranting the start of a drug that had been previously researched- this drug we don’t know how it’ll react along side the chemotherapy and also what it’ll do for our Ebonie. But, at this present time we have no other options and everything is pointing to this pathway. Unfortunately these results also showed that Ebonie has a gene which drives cancer and is seen in other types of cancers. For this gene there is no targeted therapy and we need to hope that it’ll respond to this next combination we will start. Whether this gene has been there since diagnosis or developed during treatment- we do not know.

Within 3 days of starting this new drug Ebonie became very poorly, sickness, chest and tummy pains with a high temperature. Ebonie was immediately admitted into our local hospital. Baseline bloods were taken which showed a high infection marker, culture taken and a 48 hour was had for those results. During our hospital stay, the infection marker was increasing by the day, Ebonie was not herself, wasn’t doing much at all, losing weight too- she had chest X-rays and ultrasound which both showed something. After which ended up to be a 72hr wait for culture results they were negative but the infection marker was still there. The chest X-ray showed shadows- at this point we did not know if it was infection or disease progression and a chest CT would confirm this. The ultrasound showed pressure on the left kidney and an increased in tumour size- the pressure was seen as the tumour was pushing onto the kidney which explains the pain Ebonie was complaining about. We have to monitor Ebonies toxicity levels from her new drug, the results showed that Ebonies levels were high which could be the reason for some of the symptoms present but wasn’t the reason for the underlying infection marker.

After many talks with our care team, it was decided Ebonie would be discharged on oral antibiotics and supplement until we were due into gosh the following week for a MRI and CT scan.

The following week Ebonie was still too unwell to have a GA for the MRI, she was still coughing, very lethargic and not herself and it wasn’t worth putting her through it all.

A whole week had passed and we have a CT scan, Ebonie has this without a GA so it all went ahead, a couple of days later we had a MRI under GA. The results were hard to hear.

The CT showed disease progression, the known lung lesions  have got bigger, there are new lesions and it looks as though calcified lesions are waking up/active. The MRI was the hard hitting results- the MRI was on the primary site pelvic area. It showed that there was an increase in size, it showed the tumour is obstructing a tube that runs from the kidney to the bladder which explains the deranged blood levels we have been getting and explains the pressure seen and inflammation. It also showed that there are ‘hot spots’ in the liver meaning it has spread to the liver. Absolutely devastated. We knew that there would be disease progression as we have been monitoring the tumour marker but we didn’t expect it to have spread to a new area.

What now? We are still waiting for an in-depth meeting with our care team which is this week but as far as we know we are going to continue with the new combination and hope, hope so bad that it gets control of the progression and opens up other options.

February has been a very difficult month and I want to thank Post Pals for all your support, patience and love for our little Ebonie. We tried dearly to enjoy Ebonies birthday but she was just so poorly and tired, she did though receive so many lovely cards and gifts. Ebonie may have been very tired but she enjoyed opening everything and it did put a smile on her face. Please please keep Ebonie in your thoughts and hope we get control soon.

Update 5th January 2017

November was in all honestly a disappointing month. Ebonie continued with and saw her chemo schedule out. On 22/11 a port removal was requested, a procedure that so many have and one that should be straight forward – not for our Ebonie. We had the port removed as Ebonie has a double lumen line as well, that treatment can be administered through. There was uncertainty to the whole day but the removal went ahead and all was ok prior to theatre, but when she was in theatre there was a complication. The port line was embedded and couldn’t be removed the ‘normal’ way. Instead they had to make an insertion to her neck around the vessel to remove it. This was where the concerns lay as she could bleed out and have problems from here. After a careful watch and an admittance to the ward Ebonie was allowed home and on a strict recovery plan. No running or heavy lifting for two weeks. Now anyone who knows Ebonie knows this was going to be a challenge for her.

After a long and horrible November, we were fortunate enough to be invited to Chessington for a Christmas weekend. It was definitely what was needed and cheered Ebonie right up. She struggled with energy but we were made to feel very special and feel very lucky to have gone! Thank you Post Pals.

Heading into December and for a better month, hoping for options for our Ebonie to have future treatment didn’t exactly go to plan. As we all know, future treatment for Ebonie is unknown. We have explored all conventional treatment with the option to re-harvest previous drugs, not being an option. Ebonie’s long term 5 year survival rate is extremely low and even harder to come to terms with. At this point we are relying on a molecular analysis test to hopefully point us in the right direction – potential drugs that can be used or clinical trials that can be approached.

At the beginning of December we were called to GOSH for what we thought was to get these results and discuss our options and moving forward. Unfortunately, the bad news continued to fall at our feet. The sample that was run came back as failed and the only explanation to this was a technicality problem. So unsettling and frustrating because we waited 6 weeks for this result and we know the AFP is rising. After talking this through we agreed to have another sample sent off and another to see if Ebonie fits an ongoing trial that is being run in Germany. This is our only option at this stage, but there was also two options in relation to chemo. We could leave with no chemo, knowing we have an increasing tumour and have it increase more and possibly more aggressively. Or we leave with another cycle knowing the AFP is increasing, but in the hopes the chemo will slow it down. That will give us more time and hopefully have some results back in time for when the 21 days is up. We went with the latter so left with another cycle of chemo.

Throughout this cycle from the start, side effects kicked in. Ebonie’s hair was starting to fall out again, sickness, tiredness, bloating and upset tummy along with constant bad stools and mucositis. This was a constant battle and only when we managed to get new medication were we able to keep it at bay. It never settled, but it never got any more than it was with new meds.

To have chemo for anyone is difficult and even more so for a little child – 21 days straight, twice a day solutions are tough. We really did see the struggle with her throughout the month. So hard and unsettling, as there was nothing we could do except comfort, support and encourage her. Once she saw the cycle out and had her week’s recovery, Ebonie, the true fighter she is, was back to herself.

After this cycle we were called into GOSH on the 28th, feeling excited to get some answers for Ebonie. The Germany trial came back as negative, meaning Ebonie would not be suitable for the trial and this option was instantly ruled out. Ok, so what about the molecular analysis? It’s still yet to come back, so technically we are still none the wiser and any better off with giving Ebs a different drug.

So what to do … again? Looking at the whole picture and what the AFP is doing. It seems that the chemo is now starting to have some effect. Ok, it isn’t doing what we would like, e.g. bringing the tumour marker down, but it’s hovering around the same level with each reading taken.
So we agreed that it would be silly to stop the oral chemo now and it was best to go home with another cycle of oral and have until we get the molecule analysis back. We still need something else, as with oral chemo alone it won’t be enough for Ebonie.

Jan 4th and we’re on Day 6 of the chemo with a clinic appointment approaching. We hope that this is the right time for results and we will have a treatment option to follow, a different drug or to be a candidate for a clinical trial. Either way, we hope it’s the part missing to control and stop the growth to be able to explore the possibility of surgery again.

Thank you to everyone who sent our Ebonie post, to all the cards and parcels, not forgetting the emails. We had such a special Christmas and thanks to Post Pals we had a extra day of celebrations- Christmas Eve was a whole day of present opening because of everything sent in. We are very grateful for the Christmas we had this year. We didn’t take a minute for granted and appreciated it all. And that was all because of everyone within the Post Pals community. You made Ebonie smile ear to ear and laugh daily. Thank you.

Update 16th November 2016

Unfortunately we have had another unpleasant and upsetting results for Ebonie.

The Tumour marker had to continued to increase therefore chemo was changed again, it still continued to rise so the next action was to pursue radiotherapy- planning was underway and during planning we needed a CT scan. This CT showed that the lesions had increased in size and we changed chemo- now having twice daily oral chemotherapy. Following this and before we went into radiotherapy a PET CT was ordered, this shows not only formed masses but activity in areas around the body (diseases cells)

This was the news we did not want…

We were given the results that there is now a 4th area we are dealing with in Ebonies Lung and for this reason, radiotherapy is not an option at preset time. This is really upsetting as it is a different form of treatment and one we feel could be beneficial for Ebonie. We would be covering too much of Ebonies lungs and it not only carries a big risk because of a previous drug used but, it’s pointless targeting areas if others are going to appear after.

So what now? We will continue with the oral chemotherapy until we have an option with future treatment. We hope this oral chemo will start to hold the Tumour growth and give us control then with the option to possible explore other treatment such as radiotherapy again.

As Hard as it is to write, Ebonie is in a serious position. She is looking really well but the inside of her tiny body tells a different story and she is very poorly.

We want to thank everyone who continues to send Ebonie letters and parcels. She loves seeing her name on the letters and it’s even more special when gets to open the door to the postman who says ‘for Ebonie C’ her face lights up, she goes all silly and says loudly ‘Thank you’- So Thankyou to everyone who helps to make this happen.

Update 10th September 2016

August has been a very hard month for us all, especially on our Ebonie. Unfortunately the last chemotherapy Ebonie was on had to be changed, as it wasn’t working and her AFP tumour marker was increasing. This was extremely worrying, knowing we have already explored so many treatment options. Thankfully there was another regime that our consultant had in mind and that we could start. This new drug has only been used within adults and a few children. This is another harsh drug that comes with new side effects and obviously more damage to Ebonie’s tiny body. We pray that this new drug will bring Ebonie’s tumour marker down to allow for surgery.

With all of this happening, Ebonie went into hospital with a spiked temperature,and culture results – taken from her double lumen Hickman line showed Ebonie had an infection in both lines. We were told it was quite a significant infection too. After two weeks of antibiotics, we have today been given the all clear and discharged from our local hospital.

This month (September) Ebonie will continue with having cycles of chemotherapy along with a round of imageries. At the moment we’re hoping that this round of scans will show everything has stayed the same as the last lot and that there are is no new activity sites.

Thank you’s:

Thank you so much to everyone who have sent post. We love reading all the cards and stories sent. We have received postcards from all over the word that Ebonie is collecting. It’s fascinating for us all, just to name a few are from Singapore, Australia, New Zealand, America and Germany. There are many more too.

Ebonie is now on recovery from the chemotherapy she had last week and as always in my eyes, doing fantastic. She makes us all very proud.

Thank you to you all, we are so grateful that you think of our Ebonie and put so many magical smiles on her face.

Update 1st August 2016

After eagerly waiting for the plan, Ebonie has now started chemotherapy again. We are hoping it will only be two cycles which will last a total of 8 weeks, and that it will be enough for a surgical resection with minimal risks.

Thank you to everyone who has sent Ebonie post, for the gifts, the letters, the stories and cards. We are truly grateful. Ebonie runs to the door every morning to collect the post. She will sit and listen to everything read to her, it has opened a whole world of imagination, excitement and questions.

Update 19th July 2016

Thank you so much for allowing Ebonie to be a part of post pals. To say we are thrilled with all the support so far, is a bit of an understatement.
We have received so many letters and a few gifts so far. We’ve kept the return address’ to try our best with sending thank you’s. Actually Ebonie enjoys doing stuff like that, it helps to pass time.
She hasn’t opened it all yet, GOSH called me and asked for me to collect Ebonie’s deliveries, as she had so many. We had two boxes and a whole bag filled with cards and letters.
The assumption was to head back in for the second stem cell this week, as Ebonie has done so well in the first, but it never stayed to plan.
Scans showed new activity in the primary site (pelvis) and lungs, so we are awaiting the plan.
They are extending treatment again, so we will have more stays as an inpatient. So for this reason we have kept it all, so she has it to open once we are in.

Update 14th July 2016

Following Ebonie’s transplant, very sadly her cancer has returned almost straight away. Ebonie’s cancer has been detected in both her primary site and elsewhere in her body.

Story written 2016

In January 2016 we took Brooke to her GP due to swelling of her right lower thigh, which seemed to be increasing in size. The GP suggested an X-ray which showed a malignant bone tumour, so she was referred to a consultant for treatment. She had an MRI scan and a biopsy on the 27th of January which confirmed osteosarcoma. Her chest CT showed two small nodules in her lungs but they aren’t thought to be cancer at this time, so it’s being classed as localised osteosarcoma.

Brooke had a Hickman line inserted in February, to start three chemotherapy drugs for ten weeks before surgery, then followed by 18 weeks of chemotherapy.

After six sessions of chemotherapy, Brooke had her operation to remove her tumour, she had to have a new hip, knee, and a titanium femur. She is now recovering from the operation and learning to walk again. Brooke still has 12 sessions of chemotherapy left and 12 months of physiotherapy.

Update 25th June 2017

Brooke is well and off antibiotics it seems highly unlikely for it to return now, so she would like to give up her place on Post Pals to allow another poorly child to access the fantastic support. We would like to thank Post Pals and everyone that has sent letters, parcels, e-mails etc. Through a very sad and tough time all this post kept Brooke going and gave her hope.

Update 4th January 2017

Now we are back home and together, Jaye feels she doesn’t need to be a part of Post Pals any longer and feels that someone else can benefit from having her place. Brooke has only 3 more preventative meds to go then she can look at getting her central line removed.

Update 6th August 2016

As her hydrotherapy rehab was cut short due to illness, it took a good 12 days for the Doctors at QMC to get her well again. Because of this we are now having to stay in hospital until she finishes all the nasty chemo sessions, which is the end of September. She has already been in hospital for 4 continuous weeks, just another 8/ 9 weeks to go.

Update 7th July 2016

Brooke is still spending a lot of time in hospital, but she is now counting down the number of chemo sessions left to go. Brooke will be spending next week at the Birmingham Royal Orthopaedic hospital having intensive physiotherapy in the hydro pool and gym. We all have our fingers crossed that this will get her walking again.

Brooke and Jaye would like to thank everyone who has taken the time to contact them and sent amazing presents.

Story written 2016

Mason was diagnosed with a brain tumour in April 2010. Since then he has endured several operations and over two years of chemo. In April 2015, Mason and his family went to America for proton treatment. We have just found out that this hasn’t worked and Mason’s tumour is terminal.

Mason’s mobility and eyesight have become worse over the years.  Mason sleeps a lot now and his short term memory has been affected by the proton therapy. Mason now has seizures and is on a lot of medication. Mason has been through a lot over the six years he has been ill.

Update 25th October 2024

The family continue to adjust to life without Mason.

Amelie loves all things girlie especially hair bits and bath bombs. Scarlett loves make up and hair products. Kloie has just started university, studying midwifery and would appreciate things do do with this. Teddy loves BMX, rugby and cars.

Update 23rd July 2023

We’re sad to say Mason passed away last night with his family around him. 

Update 14th June 2021

Masons been struggling with his mobility and seizures and been very stressed about transition to college in September. Scarlett starts high school in September, Kloie starts year 11 and Amelie starts full time school in September too. Thank you for all you do

Update 21st April 2021

Mason is back at school 2 short days which is enjoying. His seizures aren’t great and his been struggling with mobility. We are glad the suns starting to shine so we can go out in the garden. 

Kloie has gone back to dance and Scarlett starts high school sept and Amelie is starting reception. Huge thank you to the lovely gifts that have arrived for the 4 of them

Update 20th August 2020

Mason has been struggling this year, mainly with seizures and mobility the most. His walking has taken a huge step backwards and he’s struggling daily with this now. Seizures are just a constant pain, we never get to have a break from them. Mason has monthly hormone injections and is due his 6 monthly MRI in early October.

Due to the amount of seizure meds Mason is on he tires very quickly and sleeps over 8/10 hours a day. This has a big impact on the girls and family life as obviously we then need to stay at home with Mason. So on a good day we try to do something nice, with all the children. Memories are the best, especially as a whole family 

Update 1st October 2019

Mason is still plodding on and we have an MRI coming up in the middle of October, this is always a anxious and stressful time. Masons mobility and seizures haven’t been great. 

Update 14th February 2019

Mason has been struggling with seizures and was very poorly before Christmas. He’s finally starting to regain some strength and having a few better days.  We have an upcoming MRI and appointments to discuss things further.

Update 20th October 2018

Mason had surgery yesterday on his eye, he had to stay in hospital due to his haemophilia and needing factors to help with the clotting. We have an MRI coming up in November and this will determine what the plan is next. Mason has been loving his post he has had. He is really liking speedway, police interception and listening to music. He had some amazing Ed Sheeran tickets for his birthday, so he’s extremely excited for this. Mason has nearly completed the whole 18 months of chemo. He has managed a few full days at school. Mason has some pretty rubbish days due to mobility and seizures.

Update 9th October 2017

Mason is currently on chemo. He is struggling with this and finding it very tiring. His moods aren’t great and doesn’t get to do much as he tires very easily.

Update 28th April 2017

We have been in Addenbrookes since last night. Mason had a bleed on the brain again and a large cystic growth so that’s the reason why he’s been so poorly.

Mason will undergo brain surgery first thing in the morning. Please keep Mason in your thoughts whilst he goes through all this and the recovery process.

Update 28th January 2017

Mason is pretty much the same, we have been trying to control the seizures and are struggling with getting the right mixture of medicines. Mason has been attending his new special needs school more and enjoying swimming at school. Masons mobility still isn’t great and he’s still having issues with his vision. He’s plodding along, he sleeps a lot now due to seizures medications and the tumour.

Story written 2016

Kennedy was diagnosed with acute lymphoblastic leukaemia (ALL) on November 25th 2015. She had been poorly for a couple of months with different infection such as tonsillitis and a urinary infection. During this time she had also been complaining about her knee hurting and her back hurting. We had a number of visits to the GP and hospital. Eventually on the 25th she came out in a rash that covered her legs. I did the glass test and immediately rushed her to hospital. The hospital were very quick to do bloods and that’s when they said the most likely outcome was leukaemia. Great Ormond Street Hospital confirmed this the next morning.

**Please do not send Theo any sweets**

Story written 2016

In July 2015 Theo was diagnosed with stage 4 Neuroblastoma. He started treatment straight away, which consisted of having a Hickman line inserted, seven cycles of induction chemotherapy, followed by surgery to remove the primary tumour.

Theo has now had high dose chemotherapy and a stem cell transplant and has just started daily radiotherapy.

Update 14th May 2016

We just wanted to say a massive thank you to all those who have sent Theo post. He loves every single one of them. He even had a lovely card all the way from Australia this week! Thank you everyone, it’s wonderful what you do for the children. So thank you all on behalf of Theo.

Story written 2016

**Henry is allergic to nuts and sesame so please be aware if sending food**

Henry was diagnosed with a primary immune deficiency in December 2014, having spent a lengthy ten weeks in our local hospital, with an infection that they could not get on top of.

Henry’s first problems started to appear when he was a small baby and we could not keep on top of oral thrush, which proved very hard to treat. He then went on to have more serious infections and had multiple bouts of pneumonia requiring high dependency, kidney infection with sepsis and orbital cellulitis with sepsis. Every virus he had would leave him back in high dependency, and by the time he was two he had had over 20 hospital admissions. In November 2014 we were admitted with a chest infection,then a cannula in his foot became infected and spread to the bone. We were discharged home on intravenous antibiotics for 16 weeks, which we were trained to give. This was a lengthy 13 hours a day IV regime. At this point he was started on immunoglobulin therapy, which we were trained to deliver once a week at home. Henry then stabilised for almost a year, but was admitted on New Year’s day 2016 with another infection, which took six weeks of IVs to treat. As quickly as we were home we were back in again with another infection for another four weeks. Finally home in March, we spent 12 days at home before being readmitted with a non-blanching rash, which turned out to be swine flu!

Henry is on daily medications and weekly infusions to keep infections at bay, but unfortunately this isn’t enough to keep him infection free. He is not allowed to go to the park, forest areas, sand pits, muddy areas and farms due to the infection risk. He is due to start school in September.

Henry is incredibly resilient and although he hates all the needles, bloods and NG tubes that are thrown at him, we try our best to make medical interventions a positive experience. We set up treasure hunts around the hospital, have picnics where we invite friends and family to join us when he is admitted, race remote control cars and make obstacle courses!

Update 6th September 2016

Thank you to everyone who has supported Henry, we feel as he is stable at the moment we would like to move on. The kind cards and thoughtful presents have been hugely beneficial to Henry at testing times and we are very grateful for everyone’s support. We wish everyone the best of luck

Update 22nd July 2016

Henry is back in hospital, in high dependency. He had been out of hospital for less than 2 weeks and now has sepsis.

Update 9th July 2016

Special thanks to Dottie the Dalmatian which has literally not left his side!! He adores his new puppy and the updates from Clare! Thank you. He’s in hospital at the moment and substituted his usual soft toy for his Dalmatian pup!

Thank you to Dylan and Amelie who kept a dinosaur party bag back for Henry and sent it to us! That made his day!

Sybil and Megan for their amazing colouring, fantastic artwork!

Thank you to the Discovery team for their thoughtful packages, they are brilliant.

Henry is currently in hospital in high dependency unit. We had a really good 6 weeks and thought we were on for a long stretch, we spoke too soon. He remains stable and upbeat in true Henry style. They changed around with his medication so hopefully once his body adjusts to the increase in drugs we might see another good spell!!

Thank you to everyone who is volunteering at postpals and for those that send post. It’s a fantastic organisation which makes Henry smile every time he gets post!

Update 2nd June 2016

Henry is doing well. He has an appointment at Great Ormond Street on Wednesday, so a nice day trip to London! Thank you to Carol for a beautifully made quilt cover, Rebecca for scrapbook, Abigail for writing 3 times, Chislehurst School for Girls and Bethany for the cards.

Update 3rd May 2016

Our first month has been amazing, people have been so generous. Henry spent a few days in hospital last week and a night in high dependency, due to breathing complications following a virus.

Story written 2016

In September 2015 Issy was sent to the hospital by her GP with a suspected chest infection. The next morning her parents were told that there was a 50% chance it was leukaemia and the diagnosis was confirmed two days later. The diagnosis was obviously devastating and came as a complete shock. She had been well until a few days before her hospital admission, apart from complaining of intermittent pain in her leg and stomach.
The first two months of treatment were the worst and Issy completely stopped walking for seven weeks. She is still not fully mobile, but is now walking and has recently started to try and dance again. Issy is nearly five months into treatment and so far she has had to endure 12 general anaesthetics and numerous hospital admissions. She has lost all of her hair from the different types of daily and weekly chemo she has to have. Despite all of this she is still a cheerful little girl, with a great sense of humour when she is well. Her six year old brother has also been greatly affected by this, as he doesn’t get as much attention as he used to.
Issy is responding well to treatment so far. She is currently on her most intense stage of treatment and hopes to go to nursery some afternoons, when she moves on to the maintenance stage.

Update 4th January 2018

Issy received her last chemo in November and had her line out and rang her end of treatment bell in December. She is now officially considered in remission which is amazing news. She is still receiving physio for nerve damage in her legs and feet and monthly blood tests with consultants and is doing well. We are hopeful that this is the end of treatment for her.

The time has come for Issy and Finn to move on from Post Pals. We can never thank you all enough for everything over the last 18 months. All of the post that Finn and Issy received made such a difference to them and to us all as a family. You cheered us up and stopped us feeling alone, especially during long hospital stays and times of isolation. The kindness and thoughtfulness of everyone has never stopped astounding us. Issy and Finn have received letters and cards from all over the world and some beautiful handmade gifts and truly generous presents. We even heard from someone whose child had had the same leukaemia as Issy and had been in remission for over five years which was so lovely to hear and gave us such hope.

Post Pals is such a wonderful charity and you are all inspirational 😊 We will be sending our own post as we know what a difference it makes. Thanks again.

Update 19th September 2017

Issy was hospitalised again in July for 3 days with a chest infection, but we managed to avoid a hospital stay for the whole of August, so we were able to have a lovely holiday by the coast for a week, which was great! Issy has been referred back to physiotherapy due to some weakness in her legs, so we are hoping that we can get them a bit stronger. She has struggled with them ever since the beginning when she stopped walking, but they don’t seem to be improving without help, so hopefully some physio will work. Issy has been coping quite well with the chemotherapy, but is still really struggling with the steroids and finds it very hard to sleep when she takes them. Finn seems happier at school so far this year, so fingers crossed that lasts!

Thank you so much for all of the post that Issy and Finn have recieved, it really cheers them up and brings us all a lot of happiness, especially when Issy is in hospital, taking steroids or feeling poorly. Your kindness and thoughtfulness continues to make a big difference in our lives, thank you.

Update 8th June 2017

Issy eventually returned to school after being off for 3 months, but unfortunately after 3 weeks she caught chickenpox. She was in hospital for 8 days and was very poorly, she also missed a dance show that she had been practising for (when well enough) since Christmas. She still has a chest infection, which 2 lots of antibiotics have failed to clear and is getting tired very easily, but she is back home now and her health is improving. This has all meant that she has missed nearly a month off her chemotherapy, which we are very worried about but the consultants don’t seem overly concerned so hopefully it wont make a difference.

A massive, massive thank you to everyone that has sent post to Issy and Finn. You make such a big difference in their lives, especially when Issy was in hospital. Finn has received more post this month and this has made a big difference to him. He seems a lot happier despite things being the same at school. We really can’t thank you all enough.

Update 22nd March 2017

Issy has been doing well recently, but unfortunately there has been Chicken Pox in her class, meaning that she hasn’t been back to school since Christmas. She has had had to spend the last 10 weeks at home, so she is feeling a bit isolated as she hasn’t had the chance to make friends in her new class yet. Issy is still struggling with the monthly steroids and IV chemo, one of her legs is very weak but we are hoping it improves when she returns to school and is more active again. We can’t wait for warmer weather and for all of the winter bugs to disappear! Issy turns 5 in April so we are hoping to get away to the coast for a few days if she is well enough. Issy’s hair continues to grow and is coming back curly again like it was before. There is a chance that it will fall out again on her current chemo, but so far so good.

Finn has been struggling a bit recently, he hasn’t been enjoying school and hasn’t got any close friends, school are trying to support him with a friendship group, so hopefully that works. He still finds the extra attention Issy has to have very hard and hasn’t been his usual smiley self for a while now, he sees Issy being off school as a treat for her, even though she is desperate to go back! Hopefully things will settle down when Chicken Pox disappears and she returns to school.

Thanks so much for the post we have received, Issy and Finn absolutely love the thoughtful letters and gifts that you send – it is the highlight of their week if something arrives for them

Update 4th January 2017

Happy New Year! Thanks so much to everyone who sent post to Issy and Finn over Christmas, they absolutely loved everything that they received and it made it very special. Their Elf parcels and other gifts were incredible and we have been amazed by the generosity, time and effort involved. Thank you so much to everyone. We wanted to reply to everyone who sent post but unfortunately Issy was in hospital for 4 days the week before Christmas and some of the names and addresses were lost in the chaos. So I am so sorry if you didn’t receive a personal reply, but please know that you created big smiles and made our Christmas. I will post some photos on the official Post Pals Facebook group.
As mentioned, Issy was admitted to hospital with a chest infection just before Christmas, for four days but we made it home on 23rd December, so managed to have a very special Christmas. Her antibodies were tested and found to be OK, so she just seems to have low immunity a lot and we will continue to have frequent hospital admissions. Issy and Finn went on the Post Pals Chessington Christmas trip which was fantastic, they loved it and still talk about it every day. They were also lucky enough to have a day trip to Lapland which was amazing too.
Finn had a lovely birthday. Thank you to anyone who sent cards and gifts. He was supposed to have a little party with a couple of friends, which had to be cancelled when Issy was ill, but we rearranged it for the week after Christmas and he got to see the new Star Wars Film instead, so he still had a great time!
We feel so lucky to be part of Post Pals, you all continue to make such a difference in our lives. Thank you, everyone.

Update 25th October 2016

Issy managed to start school and really loves being able to spend time with friends. She managed 2 and a half weeks before she picked up an infection, so at least she had a chance to settle in. Unfortunately starting school has meant lots of bugs and she has already been hospitalised twice in October with temperatures and a chest infection. Her consultant is now aware that her immunity drops quickly and suddenly when she is ill, which is the reason that she ends up in hospital quite a lot. They are going to have a look at her antibodies to see if she needs more help. She hasn’t been well enough to go to her dance class for the last 5 weeks, so that has upset her. Issy usually likes going into hospital but was very withdrawn during her last 2 visits. She refused to speak to or look at anyone other than her immediate family for both stays. She is also reluctant to talk while on steroids. Issy usually has something contagious when in hospital and we are never usually allowed in the playroom, so she gets very bored. Your post really cheered her up while she was in there, so thank you. Finn is enjoying school, but still finds the extra attention Issy gets difficult, especially when Issy is in hospital. Thanks so much for the post he has received.
A big thank you to everyone at Post Pals and to everyone who sends post. It is very difficult for us to get out and do things as we never know how Issy will be. Having post to look forward to, is everything to us all at the minute. Your kindness makes such a big difference in our lives and really helps us to get through everything, we can never thank you enough.

Update 15th August 2016

Issy continues to do well, apart from when she takes her monthly steroids. She was admitted to hospital for 3 days with an ear and chest infection, as she had very low immunity, but recovered quickly.  She is due to start school in September, which she is very excited about, we are hoping that she is able to attend regularly, but she missed a lot of nursery due to very low immunity and infections. Even on maintenance her immunity seems to drop to near zero every 4-6 weeks, which isn’t a big deal in the summer when we don’t see too many people.But in the winter months, in a packed classroom with lots of bugs around, it will be a different story! She continues to be very happy and accepting of the things she can’t do, she doesn’t see herself as any different from other children. Finn has struggled with the extra attention that Issy gets. This last year has been very difficult for him and we are hoping that things are more stable for us all now that Issy is into maintenance treatment and has less frequent hospital admissions. We have just managed to have a lovely break at the seaside which Issy and Finn loved and was just what we all needed.

Thank you so much for all of the lovely post we have received, we are truly overwhelmed by your kindness and generosity. Issy and Finn are so excited to open their cards and gifts. They have some mail from lots of different countries which is very exciting and some beautiful cards and letters. Sorry that we don’t get much chance to reply to people, if anyone includes an email address we would love to try and say thank you. They really appreciate everything that has been sent. There are too many to mention, but over the last few months special thanks for Issy’s Frozen watch, Snow White ballerina doll, homemade Snow White skirt and headband, also Finn has been sent some Lego, Star Wars hot wheel cars and also a joke book that he loved. Thank you everyone.

Update 6th June 2016

Issy is doing well at the moment (apart from breaking her thumb, when her big brother accidentally shut it in the back door). She has managed to go to nursery for a couple of weeks and even go to a few of her ballet classes.  Her monthly dosage of steroids affect her quite badly and she becomes very withdrawn for a week when she takes those, but she is coping quite well with her chemo. She is getting stronger but still gets tired easily and has quite a lot of weakness in her legs, which will hopefully improve soon.

A massive thank you to everyone who has sent letters and parcels. I am sorry that I haven’t had time to thank everyone individually, but each one means so much and makes a real difference to Issy and her brother Finn. The letters and parcels cheer Issy up when she is feeling unwell and are a great distraction from her treatment. Finn has also loved receiving post, he was feeling very left out, but Post Pals has made him a lot happier.  The post has brought the fun and excitement back into our lives again. It gives them both something to look forward to. I am overwhelmed by the kindness shown towards them both and I wish you could see the look on their faces when they open the post. Thanks again

Please do not send any Dairy products to Sam

Story written 2016

In the summer of 2009 Sam was born 14 weeks premature, making him a micro preemie.

He spent 15 weeks in the Neonatal Intensive Care Unit before going home on oxygen. However, this unfortunately wasn’t the end of our hospital life but, in truth, turned out to be the beginning of our new life.

Sam spent 2/3 years of his early life in and out of hospital, only managing a few days with us as a family before being re-admitted again. After many years of illnesses, operations and having had the ‘talk’ with consultants, it was discovered that Sam had a immune disorder. His immune system didn’t remember an illness so it was like having a newborn baby all the time. Sam’s body also didn’t know it was poorly and so didn’t fight off any bacteria or viruses.  Therefore, he remained on constant IV antibiotics for years, which we learnt to do at home.

In 2012, Sam had 60% of his right lung removed due to scarring caused by constant infections, and in the latter end of 2012 Sam had a sibling bone marrow transplant from his older brother.

Sam remains a very poorly boy, on constant oxygen, IViG (which is an artificial immune system), a ventilator at night time and many, many meds. However, Sam is a very happy, cheeky young man with an adult sense of humour. Sam will lighten up any situation and just has the biggest heart I can know in a child. His daily life is filled with physio and medical intervention, yet he never complains or asks ‘why me?’.

We do not know what the future holds for Sam, but we know that Sam will give it his all regardless of how he feels inside.

Update 29th May 2021

Little update on Sam. After much anticipation and us having to fight very hard for Sams needs he’s having a weeks worth of in-depth tests next week to confirm the need for his stoma bag. These tests aren’t pleasant but a must for us to move forward. Sams really looking forward to the day he doesn’t have any accidents yet of course is very nervous about next week. 5 day admission to GOSH is ahead of us.

Update 21st April 2021

Sam has had a weird few months what with COVID keeping us indoors. However we do have a busy time coming up over the next few months. Sam is starting tests to have a stoma bag fitted. This will hopefully improve his quality of life and give him more freedom and independence as he gets nearer to adulthood.

Sam is excited about  getting a stoma as at 12 he’s clearly embarrassed by having a non functioning bowel. Lungwise Sam is doing great and COVID has given him a chance to not only rest his lungs but allow them to grow without  picking up a virus and ruining the lining of the  new growth. This has been a blessing in disguise for him. We hope for it to continue as we all come out of lockdown.

Thank you to all those that have sent the boys mail, they have brightened up some dull mornings in the last year and given them a sense of normality. It’s unbelievable how much the post has become the highlight of the day.

Update 10th November 2019

Sam’s had a rough patch of it recently which all started with D&V about 8 weeks ago. Because of this he’s lost weight which in a skinny child isn’t great news. He’s had many tests to see what’s going on but so far no real answers. The best the team can come up with is left over from the D&V but can’t be sure. 

About four months ago we found out by pure chance that Sams blood sugar levels are a little out the norm. He goes both high and low but not enough to be treated, just enough to cause symptoms. We recently had the 24hr starvation test done and to say it was hard is an understatement but Sam completed it 🙂

Sam has also been in a lot of pain over the last six months in his legs and hips due to the scoliosis and leg difference. Sams wedge in his shoe is being increased with the aim to place an external wedge on his shoes which will hopefully level Sams hops out a little decreasing the pain. 

This has all had a huge effect on Sam emotionally and he’s had moments of struggling mentally but we’re working on this and it helps. He’s also missed 60% of his school year so far which isn’t good for him. We are managing to keep him current by working on it at home but nothing beats the social side of school. 

Update 2nd April 2019

Sam’s health has been up and down over the last few months, mainly from a gut perspective landing us in hospital a few times. His weight has been declining and his intestinal track is either way too fast or stops all together. We are awaiting a long stay in hospital to try and sort this out. 

Chest-wise, Sam’s been really stable and managed the last winter with very little issues which is unheard of for Sam. He stills tires easily and relys heavily on medication, but we finally have the right combination of drugs. 

Sam’s immunology bloods remain just under the normal level even with treatment but it’s enough to allow him to remain safe outside. 

Our main concern is Sam has started to develop ‘fuzzy’ episodes where he can’t move or talk, but can hear what’s going in around him. These episodes are becoming more frequent but we don’t know what’s causing them. 

Emotionally Sam’s doing much better and has accepted his limitations but has started to find ways around most things. This in itself has been the best gift ever as it’s been hard watching him be sad and know we can make it all better. The post he receives really helps lift his spirits and makes him smile. He especially likes the cards that come with personal info like cats’ names etc as he can relate. 

Update 9th September 2018

Sam has had a difficult few months and has struggled with many illnesses from shingles to tummy pain. We’ve been struggling to get his stomach go fully function again and his bowels are really playing up. Alongside this Sam has been having weekly (if not more frequent) episodes of not being able to move or talk. We have spoken to his team about these and we are awaiting a neurologist input where we will hopefully be able to get to the bottom of what’s going on. Until then we have to just support Sam through these episodes as there’s not much else we can do.

Chest wise Sam has not had a great summer and at times he’s struggled to even climb the stairs. Again this was mentioned to his team and some tests were performed and we will find out what the plan moving forward will be at our next clinic appointment.

As Sam had a rough summer break his moods not been the best but he’s tried to stay as upbeat as he can. We are hoping being back at school will help with this and Sams started the local youth group which he’s really enjoying.

Update 25th February 2018

Sams struggled for a few months now with pain, pain all over from muscles to tummy spasms to headaches. The drs are trying hard to find out why, what we’ve found out at the moment is that Sams hamstrings are tight and he needs to wear his glasses full time. He’s started horseridding in the hope to help his muscles and give him better core ability.

Since Sams stomach gave up in December it’s been really hard to get it going again. We are now venting his gastro button daily as he appears to be producing a lot of air which causes some of his pain.

We have an mri coming up to see if we can dig any deeper for clues as to what’s going on. For now we carry on with the pain relief and horse ridding lesson.

Update 23rd November 2017

Sam’s had a very difficult few months and in truth no one is sure what’s going on. He keeps having episodes of losing all colour, getting bad headaches and generally feeling unwell. These last anything from 30mins to 2hrs. His other issue is his leg is still giving way so he’s falling over frequently. Again no one is sure as to why as structural damage has been ruled out, along with cardiac. We are now awaiting a neuro input to see if this is the cause.

Sam’s also been suffering from a sore throat that he describes as his throat closing in on him. Again we are but guessing what’s wrong, though we do know that Sam has had  pseudonymous in his sputum samples so he was treated with IVs. Since stopping the antibiotics, Sam has noticed an increase in symptoms, along with an increase in mucous plugs which are becoming an issue again. We are hoping to go to theatre shortly for his team to have a look down and see what’s going on.

Since his birthday Sam has been struggling, mentally with his conditions. We have to remember he’s a 9yr old stuck in a 90yr olds body. He wants to be able to run around and play with his friends. In his words ‘I just want to be normal’. It’s so hard to help with this as I can’t change his medical conditions or even say there is an end to it all because there isn’t. We have however arranged for Sam to talk to someone who specialises in this type of treatment and hopefully bring Sam’s mood back up again.

Update 30th August 2017

Sams has had a difficult few months and we’ve had to ask our consultant to have a look at him earlier than his six monthly review. From an immunology point of view sam is stable and actually his numbers are the best they’ve ever been. However he had to overcome his needle phobia for this and I’m glad to report that after a few months of work Sam now just lets us get on with it and doesn’t even flinch.

Its the rest of his issues that are not going great. Sam has been suffering from a lot of symptoms that are thought to be connected to his cardiac problems and whilst the Drs have tried to not treat with medication they now feel they may have no choice but to start them. So we are waiting for extra tests to be performed as the problem with cardiac meds is that once you start them its hard to stop or reduce so it needs to be the last resort. Its hard watching Sam when he’s sat on the sofa in pain and looking really drawn in the face, knowing there is very little we can do to help him.

Sams other issue is his knee, recently sam has been falling over a lot for no apparent reason so again we asked his Dr to have a look. She in turn asked physio to give sam a quick once over and its a good job she did as it turns out that sam has a potential torn ligament in his knee. He has been walking around with it for some time and this is the reason his knee has had trouble locking. We have been given exercises to do and awaiting a review from ortho as to where we can go from here as he’s already covered in bruises.

Update 1st May 2017

Sam has had a really difficult month, since we found out that Sam’s dysmotility is throughout his intestinal tract we have been trying different treatments to help in making him clean during the day. He started on a new procedure called the peristeen however this caused massive spasms and even an infection (needing IV antibiotics) as all the stools whizzed through his tract and his body wasn’t use to it as he’s normally slow. Sam managed to lose 1.2kg in a week which is a lot for someone like Sam that has nothing to lose. We then moved onto daily enemas which were going great for a week, however they then went on to irritate his bowel and started to strip the lining causing him to lose lots of mucous from his rectum. So he’s currently on a break for the weekend and we will try something new from Monday. We can but hope this works as we are slowly running out of options before we head to surgery.

Sam’s found it hard emotionally over the last month as the spasms are so painful and it was really getting him down. We went to Alton Towers but the trip was dampened by pain and generally feeling rubbish. This was such a shame as we had been planning this trip for four months.

However, he still amazes me with the acceptance of it all and how he trusts us enough to keep trying. He did find the not having any accidents a real lift and this boosted his confidence.

Sam’s lungs have behaved themselves this month and his SCIG is going great and keeping his levels steady which is amazing news. Sam is so good with it all as it can be painful and uncomfortable even after the treatments finished, for up to 24hrs. But he just takes it in his stride and has a quiet evening watching TV or playing with his ponies on his bed.

Big news this month is we got Sam a new puppy called Bella. She’s raised Sam’s mood loads and he even takes her for a walk on his wheelchair. This is great as not only has it been so beneficial for Sam but it gets Bella used to the chair without trying to escape or get run over.

In the next month we are hoping to take up swimming as a form of physio and of course as Bella can go further and further, we can go on family walks.

Update 2nd February 2017

This month has been full of hospital stays, appointments and procedures, some very unpleasant procedures.

We have, however, gained a lot of answers and insight in to Sam’s illnesses. Unfortunately the answers have just opened a whole new set of problems with yet even more unpleasant procedures to come. We found out that the dysmotility that Sam has goes right through from his oesophagus to his rectum. GOSH are currently unable to move forward with the treatment needed, however UCLH are helping adults with similar issues so our team are seeing if they can get Sam over there to be seen. All medical science moves on with volunteers so why not Sam? 🙂

Sam has found all this extremely hard and for the first time ever Sam cried on his way to the treatment room. He’s normally so open and compliant with what we ask of him that it broke my heart to see him cry and not be able to help at all. The tests had to be done for us to get answers, so all I could do was hold his hand and try to get him through.

We had our 6-monthly respiratory review and are changing a few things in the hope of stabilising Sam a little more but should in the long run mean Sam has more ‘well periods’.

One of the major changes this month has been that Sam changed from IViG to SCiG. This is a massive step for Sam medically and emotionally as up to now Sam’s had a huge needle phobia (due to the amount of cannulas he had before we got his central lines) but has had to overcome this because SCiG means two small needles have to be placed into his legs every 2 weeks. The reason for the switch is that Sam is now getting older and this will mean we can give his immunoglobulin at home. He did amazingly well and we couldn’t be prouder, not only did he accept the needles, he allowed me to place them rather than the nurse.

So all in all January has been a big step towards Sam’s independence and future treatments.

Update 7th January 2017

Sam’s been very much up and down over the winter months, causing us some worry. All aspects of his illness has been effected from gut, lungs, heart rate, immunology, the works.

Sam’s going to have a busy month of tests and procedures and the outcomes are very much unknown, but will hopefully mean we can move forward and allow Sam to regain some control. Some of these tests are unpleasant and to be honest we have put off asking the doctors for help for this reason but as Sam grows its not appropriate that we ‘ignore’ the issues anymore but have to face them head on now. Sam is, as ever, facing them with a smile and sees the positive in it all.

Sam’s lungs were giving us a lot of grief just before Christmas with a lung function of just 68%, however a round of IV antibiotics has increased his exercise tolerance, so now we are waiting to see what happens over time and if whatever caused the decline returns.

In January, Sam will be starting the transition from IViG to SCiG as the doctors feel Sam’s immunoglobulins will now be for the foreseeable future and its always better to do things at home than having to go to hospital. This will be huge for Sam as he has a massive needle phobia and the idea of stabbing himself in each leg weekly is not high on his list of things to do. We’ve had a practise run and this went well so we are optimistic, however we have told Sam this is 100% his choice.

So January will be very busy and productive for us all and will be a big step in Sam’s independence and medical future.

Update 21st October 2016

Sam’s having a settled period regarding his chest and whilst he had a temp not so long back he has remained relatively well 🙂

Unfortunately we can’t say the same for his gut. It’s so up and down at the moment and whilst we have put off gastro suggestions for certain interventions I’m not sure we can for much longer. We are trying a long, long course of oral antibiotics in the hope to get get rid of any bacterial overgrowth that may be causing the issue. This will not cure any of Sam’s gastric issues but will hopefully make things a lot better day to day.

Sam remains oblivious to it all and just gets on with things that are thrown at him. He started in yr 3 this month and struggled with full days, but actually loves it so much he has been begging us to go in for half days. So after a month of half days we are trying full days again, with the intention of staying till at least 12:00. I never thought yr 3 would affect him this much and it came as a bit of a surprise to be honest.

Thank you to everyone that sent Sam a birthday card/gift, he read each one and was so excited when the post arrived. We managed to go ‘glamping’ which he just LOVED and said it was the best birthday ever lol. Phew, as it was not easy to set up when a child is on a vent.

Update 13th August 2016

Sam saw Gastro at Great Ormond Street this month and they are confused as to why his tummy is still playing him up. We are to be admitted for day testing on his hair (strange, I know) to see how many bugs are growing in his stomach and which ones so we know what antibiotic to use long-term. Sam will also have a special glucose test done which measures different aspects of his blood sugars. It’s all very in-depth and scientific.

Sam’s chest has been amazing this month and he’s managed to even climb a waterfall when we were visiting friends in Ireland.

However Sam appears to have a new problem. About once a month for the past year Sam has developed a petechiae rash on his torso. In recent months this is now a weekly thing and he’s bruising more easily. His platelet counts are all good though, so the doctors have requested a breakdown clotting and if this is ok we will be talking to haematology.

Sam finished infants school this month which is a massive achievement and he can’t wait to go up to big school.

July’s monthly project was very much appreciated during his routine 3 weekly hospital trip for meds. Kept Sam busy and it’s now hanging from his bedroom window. Sam takes the time to read every single postcard and letter that comes through and he enjoys hearing about how different people live.

All in all Sam’s had a good month and he’s looking forward to his birthday.

Update 7th July 2016

Sam is having a stable-ish period. The permanent oxygen has benefited him no end and he’s able to enjoy day to day activities without getting out of breath.

His tummy, however, is proving a bit more of an issue. He stopped his gastric antibiotics 4 weeks ago and already we are back to where we were months ago. So it looks like long term antibiotics are what’s needed. We are seeing GOSH next week so hopefully they will come up with a better plan. It’s such a shame as he was just starting to put on weight and was looking good for it, now he’s lost all that again.

Sam’s brothers are always so pleased to receive something in the post and makes them feel special. Even Jordan who’s 15 gets excited and helps his brothers read their mail too.

Update 3rd May 2016

Sam has, once again, been having a difficult month. His stomach is still a source of concern and he on a lot less calories than he should be. Therefore, he has lost a lot of weight and now most of his bones are sticking out. So, in an attempt to get on top of this, Sam is going to have to go back into his feed pump and start a new medication in the hope this works.

This, however, brings a new problem as Sam is 24/7 dependent on oxygen, which he carries on his back. But with only one back and two backpacks we are having to come up with new ideas on how to manage this.

Sam’s lungs have been up and down and at times he’s needed a lot of extra support when sleeping.

We are hoping next month’s update will bring good news, but please do know that each and every email/card/letter is read and brings a smile. Each gift is eagerly opened with excitement and happiness. Post Pals has brought so much to Sam that the first thing he asks now is ‘has the postman been?’.

We are learning all about the countries from which the letters arrive from and how far they have had to travel.

The other boys have received a couple of gifts too and they were so pleased to have something just for them. They ripped open the envelopes and intently read the messages inside. So thank you from each one of us.

Update 3rd April 2016

Sam’s had a difficult few months and had to deal with a lot of medical ups and downs. He’s tiring easier and his gut gave up for three weeks straight and even now he’s not back to normal.

We’ve only been part of the Post Pals family for a month and I really can’t tell you the difference it has made. He’s so excited every day when the post arrives and we sit and read every single one that arrives. We have even bought a world map to stick on his bedroom wall and marking off all the different places a card/gift arrives from. It’s teaching Sam so much more than we ever thought.

Story written 2016

Brooke was born on the 18/01/08 at 7:27am, as soon as she was born the midwife noticed she had a distended stomach and she was taken to the special care baby unit. However, things quickly turned serious and within a few hours we were waiting for a bed at any intensive care unit that had a bed. The only hospital that could take her was Sheffield Children’s Hospital. The following day Brooke was transferred via Embrace to there. When we were there nobody could understand why my tiny baby had not pooed and why her stomach just kept expanding. She had test after test but still nothing showed up. Finally at four weeks old she was rushed to surgery as an emergency case, where they discovered she had a perforated and twisted bowel. She had to have 10cm of her bowel removed and had an ileostomy fitted,this meant having to have a stoma nurse come in daily to ICU.   At five weeks old she was diagnosed with cystic fibrosis, this also happened to be my other daughter’s fifth birthday. At 11 weeks she had the ileostomy reversed. However, this did not stop Brooke from getting infection after infection, and she remained in ICU for five months, before finally being allowed home to her family. Throughout her stay she was hooked up to many machines, as she was also nil by mouth for four months.This was due to all the infections, surgery procedures and diagnosis of CF she had been through, so she needed lots of medication to keep her alive.

Since leaving hospital Brooke has suffered with an eating disorder, struggles to gain weight (currently weighs 2 stone 10lb at 8 years old) She also takes many daily medications, nebulisers, has physiotherapy and still after all this fights life like every day is her last. She is such a strong girl who enjoys every aspect of life.

Update 2nd November 2024

Update 26th October 2022

What can I say – Kaftrio has made such an impact with regards to Brooke’s health. 2 years she’s been on it and in 2 years she’s changed from a little girl into a young lady. She’s tall, put on a substantial amount of weight that’s makes her look stunning, she’s got a lovely glow about her, and she hasn’t had a single admission or even and infection or bowel blockage since starting it. If it continues like this, then we are truly blessed. 

Thank you to all who have sent awesome letters, cards, and gifts. It is extremely appreciated. 

Update 25th March 2022

Brooke us doing amazingly since starting the Kaftio in October 2020. She hasn’t had a single admission or bowel blockage since starting it. Brooke is back dancing now and had her first competition last week although she ended up in A&E as she sprained her foot, it was weird being at the hospital for something normal!

Update 15th June 2021

We are just plodding along watching Kaftio do it’s magic. Brooke has put on about 4 stone since starting Kaftrio in October , brilliant from a medical point of view but as she is nearly 14, weight gain is not something she wants too much of. She is due a full check up next month so hopefully we will have more news on the CF front. Regarding kidneys- all is stable and it’s just a watching game, we are waiting for gastro appointment regarding the thickning bowel – but last appointment all was well. Brooke is back dancing so hopefully she can build her fitness back up after being away from it for a year. Her first competition is online next month – fingers crossed.

Thank you for all your letters, cards and gifts – you’re all super stars! X

Update 26th March 2021

Brooke has been on Kaftrio for 6 months now and wow… weight has gone up 2 stone, she can actually wear age 11-12 clothes, usually we used to buy 6-7 leggings, but she can actually wear skinny jeans and they fit – no bagging anywhere. She’s just gone back to school and is doing great.  Her lungs seem great too. She hasn’t had a bowel blockage since starting Kaftrio, which is amazing as that was a regular occurrence.  All in all we are blessed to have Kaftrio.

Update 7th February 2021

Brooke started Kaftrio in October and the improvement is amazing- lung function is up 10%, her weight was up 1/2 a stone and her chest is clear! 

It was thought she had IBD but after further investigations it became clear that the thickened bowel wall found last year is actually just Brooke’s bowel and it should not cause any problems, the problems with her bowels are CF related – so that was a relief. Hope you are all staying safe, and thank you for all the cards/letters/gifts. You are all special people. 

Update 7th June 2020

We are still waiting for the results of her last set of tests for the gastro team to confirm the bowel issue. The Nephrocalcinosis department have confirmed they are happy is she is stable and the Cystic fibrosis team are happy with lung function, weight and over all with her cf at the moment. We are happy with the news this week regarding the amazing new drug Kaftrio hopefully being available to Brooke within a few months!! 

Brooke is not back at school until September but she seems happy with being at home and has handled lockdown and shielding extremely well! 

I hope you all are keeping safe and fingers crossed normal times are not too far away. xx 

Update 21st April 2020

Brooke is doing ok considering she’s an active child with the lockdown, health wise she’s grown pseudomonas again, so is on another 3 month treatment, which sucks! 

We are also waiting for gastro specialist appointment regarding the bowel issue that flagged up during the Nephrocalcinosis investigations, it is thought that maybe Brooke also has Crohn’s disease as well as Nephrocalcinosis and cystic fibrosis, which also sucks!! 

Thanks for all the post guys- and please stay safe during these uncertain times. xx

Update 28th November 2019

Where to start? Brooke is having a tough time lately, having recently been diagnosed with Neprocalcinsosis (can’t spell it ) kidney calcification, we also got tildes after a scan 2 weeks ago she has gallstones however these should pass without any help, during the scan they also found the lining/wall of her large intestine is thickening so this needs further investigation and then to top it off yesterday we got the call to inform us she has pseudomonas!! Which is not great for her lungs!! She was extremely upset yesterday as I think she’s starting to understand how serious her conditions can be!!

Thank you for your post it really does make her smile xxxx

Update 2nd October 2019

So the kidney specialist has confirmed Brooke has Nephrocalcinosis in both kidneys not just 1 as first thought. They think it may have been caused by the TPN she was on as a newborn but that can’t be confirmed. It’s a life long condition that needs to be checked every 6 months and there’s a few things we need to try and balance, as some of her CF treatments can worsen the Nephrocalcinosis, but obviously without the CF stuff it’s life-threatening so we need to try balance everything so that both conditions don’t cause anything for each other (confusing I know). Thankfully no medication is needed yet as it’s been found early enough to prevent it from worsening. Also instead of putting Brooke through the same sort of tests twice, the two consultants are going to do them all at the same time and use the same results, probably her CF annual tests!!! So that’s a bonus, my crazy child likes to mix things up that’s for sure.

Update 1st October 2019

We are just waiting to see the new specialist regarding the Nephrocalcinosis. In regards to her Cystic Fibrosis her weight is up, height is up and lung function in the 90% … go Brooke

Update 2nd September 2019

Brooke has recently been diagnosed with Nephrocalcinosis, so as well as battling CF she has this to contend with, as well as starting high school – but in true Brooke style she is taking it all in her own stride.

Update 10th August 2019

Brooke is having a great year so far, with some amazing weight gains and growth. The consultant actually said “in 11 years she’s weighed 3.5st, yet in 6 months she’s put a stone on, its amazing”

Brooke is now looking forward to the next adventure in her life in September – high school 

Update 16th June 2019

Brooke has had an awesome year so far health wise actually putting on a ridiculous amount of weight for Brooke anyway.

Update 10th February 2019

Brooke has had quite a year battling CF, but she’s a tough cookie who takes it and deals with it!! Her weight took a drastic drop over Christmas due to having the stupid flu bug thing, so we are fighting hard to try get some back on.She’s also suffering with a lot more coughs and bowel problems than normal, but again we’re just battling through!! She’s still in high spirits and continues to take part in her out of school activities!! Thank you for all the cards and gifts, much love.

Update 2nd November 2018

After a tough year with Brooke’s bowels ,yesterday was a shock at clinic, we had the best ever clinic with weight and height up ( now up to 4 stone at nearly 11 years old) and best ever lung function test at 97%!  We are still not out of the woods regarding her bowels, but we have had the best most positive clinic, which is an amazing feeling.

Update 15th September 2018

Brooke is struggling – this year has really tested her with her lungs and bowels, however she is a fighter and refuses to let CF beat her.

Update 18th July 2018

Brooke has a tough year with her CF, she’s been in hospital again due to a blocked bowel, luckily no surgery was needed, however plenty more medication unfortunately.

Other than that she’s doing good. Thanks for all your beautiful gifts/cards and letters

Update 8th January 2018

Brooke’s condition has really started to show its full extent this year- having her lung function up and down all year, taking longer to clear coughs, having blocked bowels, losing weight drastically and breathlessness more often. Brooke is starting to understand a little more now and for a 9 year olds parent it’s heartbreaking to listen to her say she just wants to be normal. Her daily medication is more than an average adults monthly intake which is hard for us to see her struggle with her “normal routine” when all she wants to do is get up and play.

Update 2nd October 2017

Brooke is ok at the moment- she had her first breakdown this week about having CF, lots of tears about her wanting to be “normal”!! This was truly heartbreaking for me. Her health is a bit hit and miss at the moment – needing treatments more and becoming more breathless after activities. We will be getting her checked at next clinic in next couple of weeks.

Thank you for all letters and gifts Brooke and siblings have received.

Update 22nd August 2017

Brooke is doing really well especially after the last couple of months, she’s got her lung function up into the 80’s again which is super considering the lung damage that was caused from that awful infection.

She’s continuing her activities and annoying her siblings this summer and is looking forward to going into year 5 in two weeks, thank you for all the post and gifts including a big thank you to the extra smiles team.

Update 5th June 2017

Brooke’s had a really tough time for the last couple of months, for the first time in 6 years CF took a grip and she is struggling to get rid of this infection in her lungs, it’s already caused some permanent lung damage to the right lung, which is really disheartening for us all.

She’s been in and out of hospital for about 5 weeks and is currently still on two lots of IV medication 3 times a day, as well as intensive physio sessions plus 3 x nebuliser a day. It’s taking its toll on the family but Brooke being Brooke is just taking in her stride and plodding along, even going to school and trying to be normal with her long line in. All in all a tough few months, but we won’t let CF beat us! Thank you for all the gifts and cards and an even bigger thank you to Post Pals Extra Smiles!

Update 1st May 2017

Brooke has started to feel the effects of CF recently – having a cough that won’t go, trying different antibiotics and back to twice daily physio and nebulisers. We’ve had clinic and the consultant says it’s the start of the decline. We were also shocked to discover that Brooke’s CF genes are class 1 and 2 mutations are on her records as severe.

She is still ok within herself so that’s a bonus I suppose. She also doesn’t understand the full extent of her condition which is a blessing.

She is still very active doing all her clubs to help her lungs try to stay clear.

Update 4th January 2017

Brooke has had a continuous cough for a month or so. We have tried extra antibiotics for 2 weeks like usual, but this hasn’t cleared it, so we are currently on the second 2 week course and hoping these will work. The next check up is February so fingers crossed it’s cleared before then, otherwise she might need to be admitted for IVs. We have all had a fantastic Christmas enjoying the sun of Cape Verde. Came home for Christmas Day to all her presents.
Thank you to every single person who has sent any post/gifts to all our family, including me 🙂 We really appreciate it and wish you all a super year xxx

Update 4th November 2016

Brooke has been to clinic again since our last update, she has put a very small amount of weight on but grown over a cm in height!
She’s been having a lot of aches and pains which is unusual and I’m quite concerned, I have mentioned them to her consultant who says to keep an eye on her.
She has recently started swimming lessons in the hope it will also keep her lungs clear! Other than that nothing major has happened, we are just plodding along trying to stay well. Thanks to all who have written and sent gifts

Update 2nd October 2016

Brooke has been doing quite well since our last update, she’s had a few coughs but nothing major, she’s still struggling with food and weight gain but that has become the norm. She’s still taking part in her dance and other activities, and recently took part in an inter school cross country competition – to take part is an amazing achievement for anyone, to come 2nd by been pipped on the line for 1st place for a young girl who has cystic fibrosis is an even bigger, amazing achievement and that is what Brooke did- she came 2nd out of about 40 girls from our district!! She did collapse over the line and did struggle to breathe but with me there we brought her round quite quickly so no hospital treatment needed!! I was the proudest Mum in the whole world that day, she just never ceases to amaze me!! She’s also had her dance exams this weekend and performed brilliant. Thank you post pals for all the kind encouraging words she receives, it’s very much appreciated!

Update 6th September 2016

Brooke is doing really well at the moment, at last clinic she had a little tickle so she is on extra antibiotics as a precaution. Her weight is still a concern, but I think we are all getting used to the idea that Brooke will only put tiny amounts of weight on each clinic visit. Thank you everyone for all your post.

Update 7th August 2016

Brooke’s doing quite well at the moment, she has got a slight cough which we need to keep an eye on. She lost weight at her last clinic, so we need to keep an eye on that too.
Other than that she’s doing well, enjoying the school holidays. Thank you for everything that the children have received, we are truly grateful.

Update 7th July 2016

We are having a tough eating month, for some reason Brooke seems to be eating less and less and the last thing I want is for her weight to drop, as she hasn’t got enough to lose. I’m going to let the clinic know when we go. She’s also been a bit chesty, but nothing I’m too concerned about at the moment. She is quite well in herself thankfully and has just had a dancing competition.She danced amazing and made it to the final in under 12 street dance, which is an awesome achievement at 8 years old! Thank you to all you amazing people for all the letters, cards and gifts that all my children have received, we are extremely grateful.

Update 2nd June 2016

Brooke has been to clinic this morning for a check up, her CT scan has come back clear so that’s a massive positive. She has gained 200g in 8 weeks, so there’s still lots of concern over that! In herself she is still doing well, lots of exercise to try keep her lungs healthy. She has recently started athletics as an extra activity.

However, she’s had a pretty tough bank holiday weekend, on the way to Chessington World of Adventures we were involved in a serious car accident on the motorway.Our car was a write-off, but somehow we all walked away with minor whiplash.Brooke and Kendall were in the back seats and took most of the impact, causing both to bang their heads and more serious whiplash!! However we tried not to let it spoil our weekend.

Update 3rd May 2016

Since our last update Brooke had to have a CT scan due to the drop in her lung function, we are still waiting on results though. She handled it very well, even having a cannula fitted without numbing cream. She has started to become more breathless after exercise, which is unlike her, so hopefully at next clinic we can get that mentioned. She has started another activity to try and help with more exercise- running, so hopefully this will help build her lung function back up. She is fine in herself, but she is starting to understand she’s different, and gets upset regarding her illness- which is awful for us.

Thank you for all the gifts/cards they’ve received, we are truly grateful.

Update 2nd April 2016

Brooke has been to clinic again since our last update, she had a small weight gain and a big height gain so we’re hoping that this means she’s getting enough nutrition. Consultants are still concerned about her weight though. Also her lung function has been dropping over the last year, so we are just waiting for a CT scan for her lungs, to see if there is any damage that may be causing this. She has also been falling quite regularly, but we have been advised to just keep an eye her, as it could be due to the massive height gain. Also we have  finally found out what her second gene is, it’s an extremely rare one and not much is known about it.But this will help the other 3 children when they are older to decide if they want to find out if they are carriers. Other than all the above she is doing well in herself and is looking forward to going back to school after the Easter break. Just want to say a big thank you to everyone for all the gifts and post that has made my brave princess smile.

Update 3rd March 2016

Brooke is doing quite well at the moment, she doesn’t have a cough which is great for her lungs.However, we are struggling convincing her to eat her meals. This is not good for her weight gain, because if she does get a cough it will be harder to fight infection. She has started to try do her own medication with supervision, which is fantastic.
She’s doing really well at school and is still dancing regularly to try and keep her fit.