Our Pal - Jack M

Story written 2005

Jack was diagnosed with A.L.L on 29th December 2003. He was normally a very hyperactive, happy, excitable little boy but had recently become quiet, tired and not happy. We put alot of it down to him just starting in reception at school as he was 4 years old. Throughout Christmas he felt unwell and we took him to the Dr’s on 29th December requesting blood tests. He had these done and within the hour we were told to get him to the local hospital as soon as possible. We were then told what they thought he had and that he had to be transferred to London. Our daughter Daisy was 9 months old at this time, our world was turned upside down. Jacks’ grand parents were amazing in every way you can think, we arrived at the Royal London he had the operations to confirm what he had and we were then told the following day his diagnosis. To be honest that is when everything crashed down around us and shock set in, we were taken for a chat about everything and on asking outcomes etc we asked how long Jack had? We were told maximum 8 weeks, he may not have seen his 5th Birthday, they were surprised Jack was not in a coma.

We kept a diary of every day from then onwards the separation of us all was immense making Jack take the medication holding him down, is something we never want to do again or wish on anyone. He has had many reactions to different drugs, the sores in his mouth, hips aching, joints seizing up, ear ache galore, but the worst side effect are due to the steroids, he gets very bad nightmares and obviously his weight and moods swings are horrendous, however our little man is still here!

He is our little hero, a typical 6 year old in many respects at the moment. He just wishes he could run properly and catch better, not have to keep having the operations and the needles in his port, but he understands why. We have never lied to Jack, there is no point and it is unfair, he knows he has cancer, he knows all he needs to know in the language he understands.

He is an amazing little boy, a fantastic big brother and the best son and grandson you could wish for. We dream of the day he can be “cancer free” and our little hero will make it, half way through now, keep going our little dude.

Story update March 2007

Jack has finished 3 and half years of chemotherapy, and is now “off treatment”.

Update 2nd January 2009

Jack is doing ok at the moment, although he has his pains in his legs which we are waiting to get a second opinion on. He has a rash around his mouth which is not nice and we need to get sorted, but other than that Jack is doing ok.

It is a weird time of year for us as the 29^th December 2003 was the worst day, but Jack is still here.

Thank you again Post Pals as you have always supported Jack and us. To the adults and children that look on the website who have no direct relationship with the families and send post, you are amazing!

We have many thank you’s which I will list and post soon, but we are overwhelmed by people who have sent our children cards and presents. We have taken photos so we will send you some of them. THANK YOU is not a big enough word.

Update 3rd November 2008

Jack is doing ok, we have our MRI date now for the 2nd December, and we will hopefully find out a week later if Jack has avascular necrosis. The Doctors have thought that he will/may need help with his feet as there is a possibility that he also has problems with the soles of his feet. We hope we will know more before Christmas.

Update 30th August 2008

The Professor is pretty happy with Jack. Luckily he could no longer feel a lump behind Jack’s nipple (big sigh all around) and he said this was possibly due to the port. When they place the port things obviously need to be cut etc. and to cut a long discussion short it could have been sort of fibres of skin that group together, a bit like ‘breast mice’.

Professor has finally got some joy back from the Orthopaedics. They emailed him 2 weeks ago confirming they were going to see Jack and that they had written to us, but surprise surprise, we have not heard anything, so he is ringing them today to speak to the person who emailed to find out where our letter is! He asked Jack to walk up and down the corridor, to see if he could still notice anything, and even with Jack’s jeans on he could see how ‘knock kneed’ Jack is and also how Jack holds his knees a lot as they hurt most of the time.

Jack’s skin seems to have got worse. The bigger patch has gone, but he has lots down his legs. The Professor says they are “pityriasis” and he wants to see if they go on their own without the capsule to help them go. Bless him, they are covering his legs now, they tend to mostly affect immunosuppressed people but anyone can get it.

He also brought our attention to Jack’s veins in his neck as one side is rock hard. He wanted to point it out so that we did not panic when we felt it. It is where the tube went through that vein to access the port and his heart and it feels really strange!

So we are still waiting for orthopaedics, but, we are one step closer now!

Update 30th July 2008

We took Jack to the Doctors yesterday (28th) and he has an ear infection, but a good dose of antibiotics should help him. It was calm this morning, then this afternoon he was screaming in pain bless him, so he is currently dosed up on calpol and ibuprofen.

Jack went surfing the other day when Daddy finished work early and he loved it. Daisy and I made sand castles instead.

We have clinic on the 20th with Jackson and we will ask again about the orthopaedic appointment. They are doing all they can to chase it though. Jack’s skin is not getting much better, so we will have to give the hospital a ring about that to get it checked out.

We took Jack to the hospital on the morning of the 19^th. Thankfully the consultant could not feel any swelling in Jack’s tummy, so phew for the spleen. He also felt around Jack’s hips and said if the pain continues or comes back worse then we are to go back.

When he looked at Jack’s skin, he said he has no idea what it is. I told him we have been using the cream given to us by the Doctor for 3 weeks now and nothing has changed. He has said to use nothing for 2 weeks and if it does not go or gets worse, then we are to go back in 2 weeks time for further investigation as to what this is.

Update 6th May 2008

Thank you all so much for your messages and emails.

We went to London and saw the professor and another doctor there. They were not 100% sure that is was the MMR that made Jack react in the way he did… although there was nothing different in the timescale other than the MMR. They were concerned about his reaction, but did not want to issue an Epi-Pen, due to the fact that perhaps then the mindset would just be that it was the injection. They want us to make sure he has not become allergic to something now, due to his little body really starting over again. We have been told that if this happens again we are just to give piroten, then to contact them and let them know.

Jack’s appetite is still not back, he is actually eating less than Daisy, and yesterday just had lunch, no breakfast and no tea! He also has a more prominent lisp now.

Update 17th April 2008

We had quite a surreal day today. We ended up being in Jack’s appointment for an hour and at first Jack was seen by one doctor who asked all the normal questions. He asked if Jack had any pains, to which we said yes, he complains of pains in his legs. They continued to ask us but we asked them to speak to Jack, he was very good and explained when it hurt, how often, how severe out of 10 (10 being severe bad pain) and he said they were 6 out of 10 pain a lot of the time and it keeps him awake or sometimes wakes him up. They did numerous tests on Jack, he failed most of them, he could not walk on his heels, he could not walk in a straight line toe to heel, and he could not get up off the floor without using his hands. He also has problems with his bowels and often (weekly) finds himself running to the toilet. They want a specimen checked out to see if he has a dormant problem, if there is no problem in his stools, then they think unfortunately Jack could now be suffering from Irritable Bowel Syndrome.

The professor was asked to come into the room and had a long look at him too; he said we need to get him seen in London by the Orthopaedic doctors. Depending on their results we will see what they will do next. He said Jack could have a problem with his pelvis and this is why his legs are completely turning inwards, thus giving him knock knees. He cannot put his ankles together without the knee going in completely behind the other one and it is getting worse very quickly, bearing in mind that he was only seen in London in February! He said to be assured that he is pretty positive it is not the Leukaemia returning, but we need to find out what is affecting his legs/pelvis and bowels. They have asked that we speak to the dentist regarding why Jacks teeth are falling out too.

If Jacks knees are considered bad by the orthopaedic doctors then normally they operate at about age 10. If his knees are still growing, the will bolt them or expand the gap. However, if they have set then they would have to chisel the bone, as simply wearing braces won’t cure the problem. They need to consider if his condition is going to get worse, as it has depleted rapidly now and if it continues it could really stop him walking as well as he does now. We have to wait and see what London says.

Update 9th April 2008

Jack is doing well, touching wood! He is continuing on the journey to be reimmunised, he is being booked in for his MMR booster at the moment and he also has checks in London on the 16th April, where they say they are going to thoroughly check him out more. Jack has lost 4 teeth in the space of 3 weeks, which is quite worrying as they literally are just falling out! We will mention it on the 16th, although I doubt there is anything that can be done about it.

Update 2nd February 2008

Jack is doing ok. He is due some more of his reimmunisations very soon and thankfully so far has not reacted to the first one! He is incredibly pale at the moment, but hopefully he is just tired. Thank you all for still checking in on him.

Update 23rd December 2007

We would like to thank you all from the bottom of our hearts and wish you all a very happy Christmas and a hopefully healthy and happy 2008.

This is our first year that Jack is not on Chemotherapy medication. A milestone is an understatement! We are both petrified, especially at the moment when he is very lethargic even though he is getting sleep, but we are telling ourselves it must be one of the many bugs that are going around. It is obvious why we are more anxious, as it’s nearly 4 years to the day.

The past 4 years have been racked with nightmares along with amazing experiences – a total roller coaster. We know a few of you know exactly were we are coming from.

Our little man at the moment is tucked up in bed watching ‘miracle on 34th street’ yet he is our little miracle, very apt isn’t it!

We have so many people to thank and we would hate anyone to think that your love, wishes, kind words, cards, messages, gifts, are unnoticed because they truly are not. We have a suitcase at least in the loft of ALL the letters and cards our Jack and Daisy have received. It’s phenomenal. In our hearts we cannot measure the love and words that are said, phone calls that are made and hugs that are felt.

Kevin and I are still together and still in our family unit, which is an achievement in itself. Many families do not make it through as the stress and emotions are uncontrolled, yet we have and we will all be smiling on Christmas morning when our 2 little children have smiles on their faces and we celebrate that we still have them BOTH!

We hope you have a Christmas time of memories and laughter and if you are fighting a battle, then DO NOT give up, keep going, give it your best shot, we send you our love xx

Update 3rd December 2007

Daisy is doing well! She loves school and is doing really well on her words, she gets lots of stickers and ‘excellents’ and she reads her own books now!! She also came home today with the “Headmasters Sticker” because of how well she is doing – she is very proud!

Jack’s spellings went a bit weird last week, which isn’t surprising, as he has so much going on in his head, but he is doing well on his practice sessions at home.

We have had to stop ikaewdo and guitar lessons to get Jack to concentrate on his school work and to help us monitor his concentration, frustrations and behaviour. We think he is fighting many demons at the moment.

They are both getting very excited about Christmas, as I am sure a lot of children are. Jack is racking his brains about what he would like and Daisy wants every advert! Christmas is always a happy yet emotional time for us, as obviously this was when Jack was diagnosed, but this is the FIRST year of him having zero chemotherapy over Christmas!!

Thank you to all of you really! I am sorry I don’t think I got back to you last month, we are still watching everything but things are just manic. Karen and Ellie you go girls!! Thank you to all of you who are keeping in contact – it is lovely and some of you have been with us over 3 years now xxxx

Update 8th October 2007

Jack had clinic today and it went ok, although we are getting a second opinion from London on the 24^th. This is due to a problem with Jacks feet. When Jack was on regular methotrexate the skin on his feet was constantly blistering and falling off, it was always put dowm to that certain chemo, we were told it effects the extreme points on the body, hence fingers and toes. However, Jack has skin falling off the soles of his feet and all around his toes again and it is pretty nasty. The consultant said it is due to the infection Jack had 3 weeks ago in hospital and said because it was so nasty this can happen… hmmm, we are not reassured by this and we are getting a second opinion 2 weeks on Wednesday.

Jack has been practising his spellings constantly, so I hope he can concentrate and do himself proud tomorrow in his test, fingers crossed. Jack is also really peeved as yesterday his television packed up! This is his life line at night, as sleeping is still an issue, so he has been going through the Argos book looking for a new television!

Thank you to every one, as usual, that sends Jack and Daisy letters, cards and stories. A special thank you to Karen and Ellie.

Update 30th August 2007

Jack has had quite a strange time lately, bless him. He was quite poorly the other week and was suffering from horrendous headaches that were so bad he would sit in the corner of a room covering his face crying, saying his head felt like it was going to explode. He was also having pains in his privates, so we got him checked out and we were told to monitor him and had open access to the ward as he was beginning to spike some nice temperatures too. Thankfully, that has all calmed down for now.

He has had a nice summer holidays and for the first time in 4 years we were not admitted to hospital throughout the whole break, which is brilliant.

Thank you for continuing to support us.

Update 30th July 2007

Jack is doing ok (I am touching wood) he went for his check up and they were pleased with him. We have been told his skin is growing at 3 times the speed it should be. This is because of the medication, hence why his skin is very dry, especially on his scalp and we have been told to seriously moisturise his skin. His molescum are still growing and new ones are appearing, though on mainly his legs. Thankfully a lot on his chest are healing.

He gained another banding on his aikwaedo belt; he is an orange belt with a green stripe now, so well done Jack! Jack also got a very good school report, woohoo, good boy!

Update 11th June 2007

Things are ok here, though we did have worries with Daisy as she has been complaining about pains in her legs, which really scared us last week. Also, with Jack’s check to London looming last week it was very hard. Still we are still going strong.

Molesum are still causing Jack distress and the nail is still falling off. Jack has been to London and has had a positive appointment. We are due in Margate hospital on the 18th of this month as well.

Thank you all for writing and checking Jack’s own page at Caringbridge. If you do pop in please sign even just to say you have been. Thank you Hayley – we really hope you get a deal when you are older for an autobiography or major stories, you are superb!! Thank you also to Kate Dee, Kate and Ellie.

Update 27th May 2007

Jack is doing well. We have not long been back from a brilliant holiday in America, which is one we never thought we would have, for numerous reasons.

Jack is very emotional still, but again, his face is so different since stopping the medication. It is very strange, a lot of the parents at the school have noticed too.

Jack has the dentist again as Chemotherapy really attacks your teeth no matter how much you brush and take care of them. So hopefully the ones it has attacked are his first teeth.

We have Jack’s check up again soon, so hopefully will all go well.

Thank you for the continued support and letters, they really do mean a lot.

Update 29th March 2007

Jack went to School today; he was looking forward to seeing his friends and brought home his class photo, which is really good.

He was all padded out over his stitches for the possibility of a “football” or an “elbow” landing there! Well, the inevitable happened, so thank goodness for the padding.

Yesterday was a strange day. Jack has suddenly started drinking a heck of a lot of water and we mean pints of water! Through the night he drank 3 pints of water and was also found filling his cup up in the bathroom sink by daddy at 3am.

We contacted the nurses this morning at 8.15am and explained to them that we are concerned at the capacity he is drinking. Is this a side effect? We have no idea, but it is not “normal” behaviour for Jack. He is not attention seeking, as we know that is one of the reasons that Doctors say some children drink to excess because it covers things or gains more attention. With Jack this is not the case, as it is all very discrete. He will ask if he needs to though.

They rung us back and asked for Jack to go into the hospital to have his sugar levels checked and yes, you guessed it, by the finger prick test.  Please understand that Jack is very scared of needles, and the finger pricks HURT! On Wednesday it took me, his dad and a nurse to hold him down, literally, to get a finger prick test.

We are due to get the results of the kidney test anytime; the diabetes check came back fine, thankfully.

Jack has had lots of bloods taken as they want numerous checks done, so he was again held down but was very brave as he had to have the needle in his arm this time.

We should get the results of Jacks Bone Marrow that was repeated due to the previous one being inconclusive, on the 4th April.

Update 2nd March 2007

TODAY WAS THE LAST CHEMO!!!!! Jack has had his last syringe full about 45 minutes ago. We told him just as he was about to take it, that this was the last one and his smile was massive!!!

To let you all know, Jack DOES NOT KNOW, but he is booked in for an operation on the 19th March, Daisy’s birthday, so we are obviously pretty upset. It is to have his Port removed, we have been told it needs to come out now, even though he will still need more injections etc.

Update 27th February 2007

Thank you all so much! Jack had a lovely birthday, grown up, 8 now! Jack got so many cards from different people all over the world – friends here, there and everywhere. Jack had a new bike, heelies and stickers, books, planes, hover plane, moon shoes, he got so much stuff, he was soooo chuffed. THANK YOU AGAIN!

Update 7th February 2007

We had an appointment today at 11.00 but our Consultant was off poorly so we saw another Consultant, which ended up being two consultants.

Jack’s Bone Marrow results returned inconclusive, which is not the result we were expecting to hear, or should we say hope to hear.

The results out of the Bone Marrow that they had were ok, but there are others that were inconclusive – questions were going backwards and forwards and we were totally confused and still are.

Nothing changes, except for the fact that they may be doing another Bone Marrow, to clarify the original Bone Marrow.

They discussed port removal times (when appropriate) there were some discussions about the Septrin. They did discus (which we had not been told about before, other than by karen, Liam’s mum) that they would re-immunize Jack after 6 months to one year after treatment and this completely blew our minds – that they will put these “things” back in Jack. We can see why, all to do with the lymphocytes etc, but my goodness! We will deal with that when it happens.

Tonight is a haze of immense headaches, tears and confusion. We knew it would be a hard day, but we hoped upon all hope we would come out positive, but to be honest we are even more anxious.

We will speak to Jacks Consultant when he returns; they said they would like him to see Jack in one month anyway.

Update 6th February 2007

Jack has been neutropenic since bloods last Friday; he was very poorly yesterday but has brightened up a lot today, thank goodness.

Big Day tomorrow, we are very anxious and nervous about it. We get the results of Jacks Bone Marrow and Lumber puncture and we will find out if there is any Cancer present in his Marrow. Hopefully after 3years 2 months (so far) of Chemo daily, weekly and monthly, the steroids, the septrin, the complete invasion, surely and fingers crossed it will have all gone away.

Update 29th December 2006

Just thought we would update you on Jacks blood results for today 29th, he is even more neutropenic now, so is on 50% chemo, still warm but not at 38 yet.

Update 28th December 2006

We hope you have all had a nice Christmas and Boxing Day.

Jack and Daisy were over the moon with all the presents Father Christmas got for them, all the presents the family got them, then also all the presents lots of you Post Pals people got them – to say they were over the moon, really is an understatement.

Jack has been alright, although he has been getting temperatures since Christmas eve just under 38 and as he is neutropenic, he would have to go in when it hits 38, so we all had our fingers crossed and still have! Today Jack’s temp is still 37.7, so we are just about to go out for a walk down to the beach with Roxy get some well needed fresh air, hopefully!

It’s a strange time here at the moment as 3 years ago on the 29th is when we were called into our local hospital to be told they “think” Jack has leukemia, but it had to be confirmed in London the following day by them doing a Bone Marrow aspirate and a lumber puncture. They then told to us in a definite factual way on New Years eve, so to be honest, at the moment I am not really “with it” and neither is Kevin, it is very surreal.

We are obviously very lucky that Jack is still with us, he was given 8 weeks and we are nearly exactly 3 years into Chemotherapy, we are blessed to still have our little man.

Well best go now, do not want to get upset typing, we send all our thoughts to our post pals families and all the friends we have made.

We cannot thank you all enough for the cards, presents, emails, letters and everything that you have sent to us, if only you could see the smiles on Jack and Daisy’s faces when they opened everything, they were so excited, so thank you. Many thanks to Jacks elf too.

Update 30th November 2006

Jack is getting a few headaches lately and he has also gone back to not sleeping very well. He is wide awake and apart from the odd hour, he just does not sleep! His 2nd oral medication increases on Friday so he will be on 125% of both; we will have to see if that has any effect.

Jack is very excited about Christmas. Thank you to whoever sent Jack from Israel some fantastic puzzles, they are great we don’t know who you are to say thank you to though! Thank you also to Allan Barrett – Jack looooves his advent calendar, you put a massive smile on his face!! Thank you Hayley for your never ending stories, we hope you go far in the future you are so admirable.

We would just like to wish you all a HAPPY CHRISTMAS. We would like you all to know that you all make such a difference to children’s lives, we know you already know this, but there is no way we could ever describe and thank you all. Everyone at Post Pals, who are so dedicated and caring and to all the people that send our Daisy and Jack love, wishes, prayers and thoughts, let alone the gifts. May we all have some “good things” happen, may we all have some “luck”, and may you all get the love we send to you all from our family xxxxx

Update 28th November 2006

We didn’t see the Consultant about Jacks nail as the Consultant did not turn up for his appointments – as you can imagine lots of unhappy people! We have managed to wangle another appointment on 6th December, so another anxious wait.

Jack is doing ok, we have to speak to London tomorrow about the possible increase of his Methotrexate as he has been on 125% chemo for ages and his bloods are so high but he is pale, so we are going to speak to them.

Jack and Daisy were both brave with their flu Jabs on Thursday and Jack had his Vincristine on Friday too, so he is “steroid boy” again now, watch out fridge!!! Five minutes after eating the whole Sunday dinner and pudding he was asking for cereal, we have to say no or he will be so poorly, so he was not happy but never mind.

Update 31st October 2006

Jack has done better since coming out of the Hospital thankfully. Other than having this dreaded cough that we are all suffering with, Jack is doing ok (touch wood). He is due his lumber next Wednesday (the 8th) and will be seeing the specialist about his thumb on the 15th. They had previously asked for the nail when it fell of again (it’s happened 5 times now) so that was sent of 2 weeks ago. They were anxious about a lump under Jacks nail and mentioned testing it to hopefully rule out Cancer, so we will see on the 15th when it is looked at.

Jack is counting down to Christmas; I think he could tell you the exact number of hours! Thank you to everyone who has sent post to Jack and Daisy this month.

Update 1st October 2006

Jack has not been very well the last month, we have spent 3 weeks in hospital and they were totally unaware of what was going on with Jack. He has been on Gentamiacin, teicploanin and tazocin, anti biotics as well as having blood transfusion; there is even talk of removing this second port for fear of the bad port infection!! We are still none the wiser as to what was going on with Jack although it’s very likely straplycoccus is a major runner in the diagnosis! We’re at home now thankfully and getting back to normal. We will be sending Jack to school gently this week as he will be very anxious about going. As we said it has been very tough on everyone but the support from family and friends locally and through Post Pals and Caringbridge has been unreal, thank you!

Many thanks to Karen and Ellie who have sent Jack and Daisy soooo much stuff it is unreal! Thank you also to Celia Raven, Eileen, Ellie’s parents in America. Kelly, Darren, Chloe and Charlie for visiting Jack in hospital and bringing them both some presents and Hayley for all the stories she sends Jack. Thanks of course to all you Post Pals as well!

Update 3rd September 2006

Vincrstine went well, that was the least of Jacks worries really…

He was playing with his cousin’s friend on Thursday and he ended up falling backwards straight onto the radiator with his head hitting it!

They came downstairs and said that Jacks ear would not stop bleeding. We didn’t know what had happened, and my sister and I were in the middle of sorting out her kitchen. He was very calm holding his ear, then he let go, OH MY GOODNESS how much blood! It was all down his t-shirt, his trousers, everywhere. Then he cried as the pain kicked in, we cleaned him up and there are 4 slices on his ear, he must have landed on the corner of the radiator. We bandaged his ear when it finally slowed down bleeding and then I went to mums to get her to check it. Mum checked it and Dad mouthed the word “OUCH” to me and said it looks clean but just to keep a watch on it.

We rang the hospital and were told we were doing the right thing, but if it continues to swell then we are to take him up to get the blood drained out of his ear, but not to tell him what will happen as it is quite uncomfortable. Anyway, it didn’t swell any more and we were going to the hospital Friday morning anyway, so when we got there I asked the Nurse to check his ear after she had done his Vincristine. She cleaned it up again, then went and got a Doctor, whom then said “Jack you are lucky you didn’t lose the top of your ear!” and on looking at it now he was very lucky. He said we did the right thing on it happening with the pressure etc, although as you can imagine it does not stop there! This is Jack we are talking about! He has lost slight hearing in his left ear, the outside of his ear is pretty blue through bruising, but it has affected his hearing and if he develops tinnitus we are to take him straight back. So let’s hope in a week his hearing is fully back. Jack is also intermittently very yellow so we are keeping a check on that too. Oh and Daisy fell over and put 2 teeth through her lip last night, just to finish it off!

Thank you’s to Kate and Ellie, to “daddy’s girl” who continuously sends Jack bits and writes to him. To all you posty girlies and boys, to Allan and Julie Barrett who are always sending Jack letters and cards and to Celia, Nick Robert and Stewart for postcards, emails, letters, you name it they send it!

Update 4th August 2006

Jack is doing ok but every now and then gets tummy ache and to me is looking a bit skinnier, but hopefully this is just “growing!” It was great because at the end of the month Jack met Chloe G, who is also a post pal. They all played, as well as Chloe’s brother Charlie and our Daisy, and Kelly and I had a good old chat!!

Jack had his vincristine this morning, so he is making the most of playing today with his mate Will while he can, as he legs will be hurting soon, probably later tonight.

Good bit of news though is that he is now yellow belt at aikaewdo. We are very impressed with him!!!

Thank you to Kate and Ellie and all the Post Pal girlies who constantly send Jack mail. Thank you also to whom ever sent Jack some pictures from Camp Agawak in Minocqua; there was no name in the letter.

Update 29th June 2006

We are very pleased with Jack at school at the moment; he recently received “Pupil of the Week” throughout the school, in which he went up in assembly to receive his certificate – we were very proud parents!!!

Jack has had high bloods for quite a long time and they suddenly crashed last week whilst he was on the steroids, which was very strange and also un-nerving. He has been complaining of earache, and has also been exceptionally tired and was neutropenic last week.

He has been camping with Daddy so has had fun, and has enrolled in Ikaewdo, so we will see how that goes when he attends.

We have contact with a few families who have sent Jack some bits through the post and they also have very poorly children whom we think and pray for daily. Their names are Ellie and Skyler. There are many more children too – if you want to find out more about them, go to Jack’s Caringbridge site and their links are on there.

BIG THANKS to all of you at Post Pals. We would also like to say thank you’s to Sue, Kate, Viks, Ellie, and everyone else that send Jack mail, he gets so excited.

Update 31st May 2006

Jack is sporting a new haircut, spiky now, not long anymore, sob sob! He has been good, taking his medicines as usual, his bloods have been baffling us all, they went exceptionally high, no idea why, as he is on 125% Chemotherapy too? They settled a bit last week just before his Lumber Puncture, which was good. We will wait and see what they are this week.

We now have a trampoline, so this will hopefully get Jacks leg muscles a bit stronger, all that bouncing. Thank you for the cards you send Jack and the pressies. Thank you very much to Kate Dee and to Ellie and Karen, Lorna and a few more, you are always sending things, may good things happen to you all xxxxx

Update 29th April 2006

Jack is doing ok and is back at school but he is still neutropenic though. He is due a lumbar puncture in May and his chemo keeps going up and down.

Update 30th March 2006

Thank you again to Post Pals for all your hard work. Jack has not been very well lately, he has very very low bloods so is looking so white, and does not have as much energy as normal. He has been missing a lot of school and therefore missing his friends. We’re waiting to see if he needs a blood transfusion at the moment, because his regime has him transferred very low, a lot lower than most we know. Three weeks of half term starts Friday, let’s hope Jack is well enough to mix and has enough energy to run around!

Thank you for the reply from the school in Japan, we answered them when they wrote and they have replied again, GOOD LUCK to them all with their exams!

Update 27th February 2006

Jack has been doing ok, although his temperature has been up and down as he has a nasty cough. His bloods are staying very high even though he is on 125% chemotherapy at the moment, hopefully we shall get some news when we speak to the Dr’s in London on Friday when Jack has his Lumber Puncture. His sore feet eased off a bit a few weeks ago, but are getting bad again. We are now being referred to another dermatologist locally and are waiting to see him, so we will see. His nail is horrid too and close to falling off again, bless him!

I’d like to say thank you to everyone that sent cards, presents, ecards, thoughts and wishes on Jack’s website, he had a lovely 7th birthday and you all made it even more special!!

Update 28th January 2006

Just to say a BIG thank you to everyone who has contacted Jack and any messages at all, especially Celia, Eileen and Ben for your contact with Jack – it’s been a weird month as you all know with “The Tree” incident, but all came out on top thankfully!!

Jack has now been the face of the new Cancer Research Campaign of Horses for Causes – so as much as he is our Little Star, he is also now a star of screen and newspaper!!

Update 16th January 2006

During a family day out, Jack climbed and then fell 7 feet out of a tree. He ended up being rushed to hospital on a spinal board. He was told he is very lucky not to have damaged his spine. Jack is obviously very sore and shaken, so I’m sure he would appreciate some smiles sent his way!

Update 30th December 2005

All of us received loads and loads of cards and quite a few postcards, we cannot thank people enough for sending them. The postman had a very busy time this month and we received 5 cards (well Jack did) from a school in Japan!! Jack is writing back to them and we also received some from Israel, Australia and America. This wasn’t even including the big parcel from the Jack’s elf! To say thank you seems so little but we were truly overwhelmed, THANK YOU ALL.

Jack is doing ok, he was ill Christmas Day night, a lot to do with the Vincristine he had on the 23rd December. He always reacts badly; itching, aching, crying, a lot of discomfort, and when you have been kneeling on the floor playing with toys even the healthiest person gets achy knees!! He has gone a bit downhill the last two days, but we did manage to go and find the snow and Jack and Daisy had a brilliant time. Daisy is very poorly at the moment, we are hoping she gets better very quickly and fingers crossed Jack does not get worse.

THANK YOU to everyone that emails us, writes, send gifts, anything. I just wish we could thank you all individually, sometimes we can, but please if you have EVER contacted Jack, this is for you – THANK YOU!

Update 19th December 2005

Jack’s feet are getting bad again and he has his Vincristine (bigger chemo) due on Friday, which usually takes a couple of days to effect his joints. He is now counting the sleeps until Christmas day so we’re just hoping the excitement on Christmas day relieves the discomfort for him.

Update 16th December 2005

Jack was back in hospital in November as he has been having lots of problems, including very, very sore feet and his body had rashes all over.

It has been a tough month for Jack and his family and now Jack has viral gastroenteritis and is reacting against a chemo, although the doctors don’t know which one yet.

Update 29th October 2005

Jack is recovering well after his port being inserted on the 24th of October and he is now at home. His bloods are lower so he is neutropenic, but he’s doing ok and is active and playing. He is still finding it tricky turning his head though as there are a lot of stitches and tape. We are up in London again on Monday (31st) to check how he is progressing, so fingers crossed all will be ok. The needle will be removed on Monday, this will then show us exactly where they have placed his port and how well it works (keep those fingers crossed!) Oh and it doesn’t help when he falls out of bed straight on his chest!! Never before has he fallen out of bed, how typical is that?!

Update 15th October 2005

Jack had his port removed on Monday due to it being infected, not everything went straight forward due to developing pneumonia, he is also neutropenic so has been on IV antibiotics and having a delay in his chemo. He was discharged on Friday. He will have another port placed in the near future.

Update 10th October 2005

Jack’s port has been coming through the skin and so he is due to have an operation this afternoon to have it removed.

Update 25th September 2005

We had a great family holiday to Butlins, where Jack had a lovely time.

His port is very very red and blue today. He is having his bloods done
tomorrow, so we will ring London and let them know how it is looking. To us this just proves he is not bashing it, as he has not been at school to rough and tumble?!

Update 18th September 2005

We went to London on Friday 16th September, for the Lumber Puncture and the obvious checks that go with it. He got the thumbs up for most, but we mentioned we were concerned about his “port”. When they had a look they realised immediately what we meant, we explained it had been getting worse over the last 4 weeks, and is very red and blue. Originally the Community Nurse thought he may have bashed it and caused it to bruise, which could have been the reason, but not after 4 weeks, and looking at it today it is worse still. They said if it has not calmed down in one week, they would like to possibly do a Lineogram. This is where they place dye throughout Jack’s line, to make sure the tubes have not moved or detached or twisted anything really. However, we are pretty sure this has not happened as the port bleeds back very very well at the moment! The skin is extremely thin now, but then whose wouldn’t be, considering as a rough “under” estimate, he has had 700 needles inserted into his port. Also with him growing, the skin stretching it isn’t good. We were told of the risks of having the port and one main risk, although extremely rare, is for the port to “come through” the skin. This is obviously what we are worried about, so when he has his bloods on the 26th we are going to talk to the Community Nurse and agree together how it looks. To be honest, WE will decide as his parents, but they may then want to finally at last resort to removing his port by an operation. Then they would have to put a brand new port in to the other side of his chest, as they cannot be put back in the same place, but this will be in a separate operation.

Jack’s bloods are still high and they are increasing his chemo next week once we’ve returned from holiday.

Update 5th September 2005

Well school didn’t go too well, he lasted until 1.00 ! They rang as he had a temperature and felt sick, so daddy had to go and get him as I was at work.

When he came home he rang me and was very sad, firstly at feeling sick again and secondly as no one would play with him. He is heartbroken, kids can be nasty at times. I have rung the parents of one of his friends to try and find out why and have also rung the school to see how he has been, so we will wait and see what tomorrow brings…

He doesn’t want to go back now though, so he could really do with some well wishes.

Update 4th September 2005

Well Jack’s bloods are still very high, but there seems to be crossed wires or indecisions at the moment as to whether they are going to increase the chemo or not.

He has been suffering from awful sickness and we are wishing it to be gone, for obvious reasons, but also because he is back at school tomorrow and really looking forward to it. He has NEW SHOES he wants to wear!

Update 25th August 2005

Update 22nd August 2005

Jack is doing O.K but is a bit up and down at the moment. He is having problems with frustration and anger and is seeing a Psychologist once a week which seems to be helping. He saw him about 6 months ago for 4 months then we started it again 4 weeks ago.

We are going to London today to see the professor to have a check-up and to check Jack over, he seems to have a lot of bruises at the moment, we don’t like bruises!! Will let you know how the check up goes.