Samuel M

26 February 2016

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 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.

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Brooke H

26 February 2016

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 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.

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Aidan H

26 February 2016

Story written 2016

Since he was born, Aidan has been in and out of hospital with regular chest infections and viruses which really knock him for six. He now has a portacath and goes into hospital for two weeks every three months for IV antibiotics to be put through his portacath to try and keep him well. He is also fed through a gastrostomy after it was found he had an unsafe swallow.

As yet, we do not have a full diagnosis which explains Aidan condition. It is believed he has an undiagnosed genetic condition. We do know he has Ehlers-Danlos Syndrome which makes fine motor things such as writing quite difficult. He has to use special pens to help him write. He has recently started to enjoy Lego which has been really good at developing his fine motor skills.

Due to the number and frequency of his infections and viruses it is thought he has an issue with his immune system. He goes into hospital for a day every three weeks to have an infusion of immunoglobulin to try and boost his system.

Despite all this, Aidan is a happy chappy and nobody who meets him ever forgets him!

Update 5th June 2017

Aidan has had another busy month of appointments but still continues to be unable to drink due to his swallow not being safe. He has also enjoyed another short course of hydrotherapy and we await a final assessment on the impact it has had and whether we can add this in as a long term treatment. June will bring another couple of big meetings to discuss a way forward/next steps. This month, we have also had Rhiannon’s birthday, so we have had parties and family time which he has thoroughly enjoyed.

Unfortunately, Mum has spent time in hospital again but is slowly on the mend now. We also have Rhiannon undergoing a minor operation on the 8th of June so hospital continues to be a factor for us as a family.

Post Pals continues to be a shining light for the children and we thank everyone who has sent cards and parcels. Sorry that we haven’t been able to thank you all personally.

Update 1st May 2017

Aidan can now eat, he has been doing relatively ok. He has restarted hydrotherapy for a month, which he absolutely loves. He has also had another swallow test to see if he can start drinking but unfortunately he failed this. As a result, he has ended the month with a chest infection. While he is feeling unwell with it, he is not allowing it to stop him and so far we have managed to keep him out of hospital. Once again, your letters and parcels have been a big highlight of another generally difficult month within the family. Each and every one received bring huge smiles to the faces of both children.

Update 2nd March 2017

Tough start to this month with Mummy in hospital. Aidan is doing quite well though. He has had a chest infection but for once we managed with just treatment at home. We have now also been able to progress from purees to some normal foods and he is loving it! We have yet to find something he doesn’t like!

Rhiannon has also found out this month that she will need her 6th ENT surgery, but we have yet to receive a date for that.

Your letters and cards continue to be a great source of joy and comfort to both children, so thank you.

Update 4th January 2017

Both children received so much Post in December! Aidan had both Christmas and his birthday to celebrate! Lots now coming up in the coming months for both of them. Lots of tests and a couple of new therapies. Thank you so much Post Pals for your continued smiles.

Update 4th November 2016

Good month overall for Aidan. Kicked off with a great weekend at Chessington!! It was great to spend time with other kids and parents who understand just how difficult it can be when your child is unwell, especially when it comes to chronic conditions. Thank you Post Pals. His infusions continue. We are still trying to persevere in getting him eating orally. This is proving to be very slow going though. Rhiannon has had extra referrals added to her list. November is going to be busy as we have lots of appointments, meetings and an admission for Aidan. We are hopeful that all this will give us a bit more direction overall in terms of treatment and care for both of the children.

Update 2nd October 2016

Nice quiet month for Aidan really. A couple of hospital reviews and back to school! The latter is wearing him out but we are monitoring this. Both Aidan and Rhiannon love receiving post and will sit together to open any that comes. It’s just about the only time they aren’t arguing! Thank you all.

Update 5th September 2016

August has been a fairly quiet month for Aidan. Still had a few appointments, but no real big ones! He has remained fairly stable health wise. One or two small blips but they have been handled without the need for admission! However, we have noticed a drop in his energy levels with fatigue kicking in much quicker than before. He does have a new wheelchair coming following a reassessment, so hopefully this will give him back some independence. Now counting down the days until the return to school.

Update 7th August 2016

While not 100% well, Aidan is currently in a reasonable spell for him, but is still having problems with moving forward in terms of eating. We do have a couple of big appointments coming up in the next month or so, which we hope will help give us some answers moving forward. Aidan is still loving receiving his post and we have to read them over and over to him!

Update 7th July 2016

Aidan started the month in hospital having IV antibiotics. While there he received his brilliant Minion balloon, which is still going strong! He has also had a difficult month with gastrostomy problems and is in pain.

Both Aidan and his sister received lots of lovely cards and letters as well as a few gifts so many, many thanks. They both love receiving post.

Update 2nd June 2016

Aidan is finishing the month back in hospital for his planned IV antibiotics. He has actually done pretty well this time, and even though he was starting to be unwell as he came in,  he wasn’t as poorly as he has been at this stage in the past. He is still loving receiving things from Post Pals so thank you all.

Sibling Rhiannon has also had a couple of appointments and will also now start to receive some of the support she needs.

Update 2nd April 2016

Aidan started the month in hospital, finishing off some IV antibiotics. He then had to go back into hospital for a gastrostomy change. We had a couple of fairly good weeks but he has ended the month with another chest infection. So far, we have avoided admission and have everything crossed, so we can manage at home. The post he has received in his first month as a Pal has been amazing and certainly put smiles on the faces of both him and Rhiannon. Thank you!

Update 3rd March 2016

February has been a very busy month for Aidan. The most exciting thing for him was being accepted as a PAL! He spent the last two weeks of the month in hospital for his antibiotics. This was a very difficult admission with lots happening. One good thing to come out of it was that he had a swallow test. As a result we can now start introducing tastes. This is the first step in a long journey to eating again. We look forward to seeing what March will bring!

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