For Now.....THE END!!!!

Well, today's trip to London was a good one! He had another ultrasound and the haemangiomas on his liver are shrinking, as is the one on the outside. Although, if caught or scratched, he could still bleed badly, he is just about healed. Hes fine without a dressing which gives both him and us so much more freedom. Hes been swimming (all of 5 minutes, wasn't too keen but we'll keep taking him and I'm sure he'll get to love the water) and he can be bathed properly every day! That might not sound exciting, bathing your baby but, its great to be able to put him in a bath and play and get him clean.
So, now we've been told he doesn't need to go back to GOSH until NEXT YEAR :o) He'll have another scan and check-up. Unless we have any problems in between, I will just update with photos every month or two to let everyone see how the haemangioma is disappearing.

Photos

Heres where we are at the minute and a photo of him at his first party where he could actually join in and play! Well......he danced and twirled a bit :p

Dressing Free!!!!!!

Fox was going to have his dressing changed as normal yesterday and his nurse just noticed, there really was nothing there, no small ulcers, no deep folds (most often caused by the dressing and his movement, then sleeping on it!) so suggested, if I was ok with it, that we try him with just a normal baby body suit and plenty of Diprobase ointment. So, its been 24 hours now and hes showing no signs of irritation (he often 'windmills' his arm when he has his dressing off, simply as it must just feel odd after having it on for so long) or danger. The haemangioma isn't folding of stretching. Everything seems normal. So, fingers crossed, we could be nearing the end the treatment for now!!! Its weird, but great. He could go swimming :o) Back at GOSH on 8th February 2010 so will update then if no problems before.

Ulcerated Haemangioma Dressing

The Dressing videos!

Part one is an explanation, Part two is a demo, actually doing Fox's dressing. Hope they're useful to someone :o)

Part 1 - http://www.youtube.com/watch?v=T9kkIDbdNx0
Part 2 - http://www.youtube.com/watch?v=YvMYWOs8cWg

Dressings

We hope to shortly put up a video of Fox having his dressing changed and talk through it. It has helped so much having the last two different dressings so I will go through the first dressing, which REALLY helped heal his big wounds, and also practically explain his current dressing. If you have a child with an ulcerated haemangioma at present and you can't get it to heal, this could help. Theres quite a lot to fit in so it could end up being quite long but will keep as short as possible!

Great Ormond Street, 2nd November 2009

We visited the team at GOSH again this week. Fox is keeping the same dressing on so we'll see if it changes over the next 8 weeks. I think we're pretty much aware of how there really is no more we can do now (short of raising £££££s and going to get it removed). I think it will ulcerate continuously until hes much older and its disappeared of its own accord. He is also coming off the Propranolol over the next four weeks. As said before, he didn't start this until he was 9 months old so it was already 'fully formed' in to what it wanted to be so it wouldn't help much. Propranolol needs to be given to very young babies while the haemangioma is still developing. After that he will no longer need any medication daily!
He will have another ultrasound to check up on the small ones on there too next time we visit or if we can get there beforehand. So, all in all, not much change right at the minute. it will be interesting to see how it copes with no Propranolol in 6-8 weeks time.

The pictures show how the wounds have now shaped his skin.

Ulceration

We're finding, although there is no immediate danger of him bleeding as he would before, ulceration of the haemangioma is happening easily. The dressing could be the cause, it may now be irritating the birthmark, it could be just 'one of those things' and will continue to ulcerate until its disappeared, we could be handling him too much in that area. Its really hard to know what to do for the best. After his dressing change yesterday, he had another ulcer to his side.
When will it stop?....We hope our trip to London is fruitful and we can report good news in the next post :o)

How Far Hes Come :o)

Fox's Haemangioma is now all but healed. This dressing we're using at present has done all it can do now and I think it'll soon be time for him to move on to something else on his next visit to GOSH on November 2nd. Hes doing great with all movement now and walking and climbing with great ease! The only thing he does do is rotate his arm a lot and appears to be in quite a bit of discomfort at times, especially when he doesn't have the dressing on. Scarring and also him growing will probably not help too. The photos here were taken on 16th October 2009 (please click on photo for larger image)

Obviously, healing the wounds was one thing but in general I feel the whole birthmark is still very raised and very vulnerable. If he did hit it or scratch it or even fall on something, I feel that it is still capable of bleeding heavily so we've still got years to go until hes safe.

New Video

I have just posted a video of Fox without his dressing on walking about. You can get a bit better idea of the size and area that the birthmark covers. You can also see the shape of his skin a little on his side now where he has quite bad scarring, this will become more visiable over time as the haemangioma disappears.
http://www.youtube.com/watch?v=NBEcAaXEJwk

Latest GOSH visit

We took Fox back to GOSH for his latest review on Monday (24th Aug) and Prof Harper was pleased with his progress. the only thing that has changed about his care is to reduce the dressing changes from three down to two per week. We'll try this and if we encounter any problems we can go back to three. I'll continue to send photos to Jane Linward when we do the changes and we're back again in either 4 or 8 weeks (unsure until we get letter!).

The troublesome area that was open for so long is almost gone. Hes still on iron and Propranolol.

I was browsing the web when I came across a haemangioma website www.hemangioma.com, Dr Barry Zide's site. Hes in New York. There was an email address to submit photos and I'm always willing to do this for medical professionals, anything to help teach. Dr Zide rang me first thing the next day to offer removal of Fox's entire birthmark. We're too scared to do anything like this at the minute (process can begin from 15 months of age) while its under control and of course it would need a heck of a lot of fund raising too! We're very grateful for his call though, and will definitely keep it in mind when Fox is bigger/older and the possibility of it becoming a cosmetic issue for him.

Fox celebrated his first birthday this week too. Thank you to everyone who bought him great gifts, he had a great day :o)

So, I'll add some pics too and you can see how great hes doing for yourself :o) Again, just click on photo for full size.

Update

Its always hard to remember something bad when everything is going well isn't it! Its so hard now to think of Fox screaming every time we changed his dressing, teetering on the edge of sanity, being careful not to fall - watching him scream in absolute agony. Waiting for him to wake up after another anaesthetic. Wondering if it'll be a 'good one'.

Fox is just a different baby to care for now. Hes still taking Propranolol at 8am, 4pm and midnight and iron morning and night but, hes 'able' now, he can do things and be happy. We can, rather gingerly I might add, lift him by both hands and swing him around to make him laugh now. He had his fist bedtime bath yesterday, obviously a bit shallow so not to wet dressings but its still nice to be able to do it, if only for three minutes.

Hes soooo naughty now too! Always in trouble climbing somewhere and running (crawling at speed!) away from us. Anyway, I've babbled now so I'll just put some photos up of this last week on of the Letchworth 50s & 60s festival were Fox proudly sat in his Marmet pram, one of Fox finally being himself and one of his birthmark, the Trimovate had worked great in just 4 weeks, the wound hes had for ages is now nearly all closed.

Happy Fox

Fox is doing really well at the moment. Hes completely pain free which is amazing. We feel quite angry that hes been through so, so much unnecessary pain from November 08 to May 09. I wish we had pushed to go to GOSH last December when we first wanted to.


We returned to London on 13th July 2009 for a review (a trip I will not be making alone again!!! Too hard on a train with luggage and baby!). Professor Harper, Dr Syed, Jane Linward and team all came to see his dressing change and we are now using Trimovate cream on the small ulcerated areas left and Diprobase ointment lightly over the rest of the haemangioma to prevent it drying out. Again, also using Mepitel, Sorbsan and Gauzes. The first few changes at home didn't bring much hope but with the last few it does appear to be reducing the large open area.

The photos are 10th July and 25th July. You can click on any photos to view larger image.





For all of us this whole this 'experience', apart from being emotionally and physically draining at times, has been quite hard financially too. We continued to use our savings to enable Eve to live with Fox during all his hospital stays. We do not get help with transport and also, not returning to work to care for Fox, we lost Eve's income. Luckily we haven't been so bad to the point where would lose our home or anything to that effect but we have had to cancel our wedding next April. Of course we did lose more money doing this but there was no way we could save the cash required in time and did not want to burden ourselves with a loan to then worry about for another five years, so little Fox will have to wait a bit longer to get a mummy and daddy with the same name! After everything we've been through, the wedding did seem to become less and less of a priority and maybe now isn't the right time to be piling another stress on to ourselves.



So, Fox is continuing to have his dressing changed at home three times a week and we email photos to Jane Linward every Friday so she can keep track of his progress and we're hoping to return some time in August but unsure when due to staff holidays at the moment. His progress is absolutely great. Hes up and about and all over quite happily now and never has any pain killers. He continues to take Propranolol and iron daily.



Again, thank you to everyone who has donated to Fox's just giving page, everyone has been more than generous! He got through to the finals of a local baby competition but didn't win. Top prize went to a very deserving little boy who is also donating some of his win to a charity.

Light!!!!

Finally! There may be light at the end of the tunnel. After 10 days in GOSH Fox's haemangioma is, I'd say, 90% better! The wounds are minimal and much cleaner. All it took was a simple anti-biotic cream and a dressing that would allow the junk to come away from his skin!

After saying I was a bit apprehensive of them using any kind of wet dressing, Prof Harper said they were going to use Mepitel, but to ''bare with'' them. I trusted them as the whole team seem very much used to and aware of what should be being done for him.

I've mentioned Maxitrol in two previous entries on here.....turns out it its possibly a very bad idea, due to the strong steroid in the cream so, thats probably a bad idea to ask for that! Trial and error!

The first day we were there Fox had another heart scan and a dressing change, where he again screamed and cried. Next day he had an abdominal scan, This showed he also had two small haemangiomas on his liver. This shouldn't cause any problems. Hes also just taking a simple oral anti-biotic again for a few weeks.

His dressing now consists of: Polyfax cream on Mepitel, then one wet and one dry sheet of Sorbsan, gauzes and bandage. Simple, but the most effective dressing hes ever had on. Within in one change (3 days) the difference of all the wounds/ulceration was amazing. Its clean and neat and whats even more amazing, after all these dressing changes (at least two a week since Oct 08) HE DOESN'T CRY ONE BIT!! HES NOT IN EXTREME PAIN!!! He also only needs paracetamol for this now (not even that really!).

There is no doubt in my mind, we should of asked to go to GOSH in December/January. He wouldn't of gone through all the pain and, I believe, he would never of had a skin graft.

So, hes home again now and we're changing his dressing Monday, Wednesday and Friday and hes returning for review on July 13th.

Professor Harper, Dr Syed, Jane Linward and the rest of the team at GOSH are the best at their jobs in this country, if you're experiencing all the difficulties we have had with Fox, try your best, take all the right routes (GP, asking your current consultant and The BSG) and hopefully your child will get the help they need so badly.

Hes no longer on constant pain killers and we can now look forward to Fox swimming at Centre Parcs next April!!! We were really beginning to think it was too much to hope for, but now we think its possible :o)

Maxitrol Eye Ointment

We went to AH today for his usual dressing change and just wanted to mention that any child who's haemangioma is just beginning to ulcerate may really benefit from this cream. It cannot be used for more than around 4 weeks at a time (with breaks) but if it helps stop the ulceration getting worse, mentioning it may be worth a try to help dry out and heal the affected area. As you can see in the pictures, the first is very 'raw' and 6 days later the edges are beginning to dry (black crusted areas). Fox is also using Acticoat at the moment to keep infection at bay but I don't think this is necessary to help it dry out, Maxitrol (http://xpil.medicines.org.uk/viewpil.aspx?docid=8858) has worked well alone before. Obviously we now worry about whats next when he has to stop the ointment again??? GOSH on Monday. We've also raised £285 so far for the BSG. Thank you to everyone who has given so generously :o) its great.

Referral

As we continue our trips to AH and he continues to be in pain our GP's surgery called to say the referral to Great Ormond Street Hospital (GOSH) we applied for back in April had been granted! We were a bit confused and didn't really know how to feel. We're very grateful to AH for everything they have done and are still trying to do, but we felt we couldn't settle until he'd at least been to see the people at GOSH, Just in case theres maybe another dressing or something that could help move on the healing.

He seems to be constantly battling infections, not great considering the only medicines he hates are anti-biotics! Mr Liew has given us some more of the Maxitrol ointment which works great, so this should begin to help.
Hes 9 months old now (Right) and had 13 general anesthetics. Hes still in pain and gets really upset when the dressing has been on a few days and begins to get very wet and uncomfortable.
We have entered him in a local Baby of the Year competition to see him smile and do normal baby things! He's had a couple of stories in his local paper and the story of his christening and first bleed appear in June 11th 'Pick Me Up' magazine (a tad dramatised but you know what these things are like!), all just in the hope that any parent with a niggling doubt about the doctors diagnosis of ''it'll go away'' will be strong enough to seek second opinions and get help elsewhere if necessary. Don't get us wrong, not every baby with a haemangioma needs intervention, but if you feel it does, push for help. These things need dealing with sooner rather than later.
Annette at The Birthmark Support Group (http://www.birthmarksupport.org.uk/) has been an absolutely priceless resource and we will always try and raise funds for them. To donate on behalf of Fox please visit www.justgiving.com/foxbisset
So, on June 8th Fox will travel to London's Great Ormond Street Hospital and we'll see where we go from there...keep following us :o)

Keep Trying

Fox came home in mid February and returned to AH once a week (thankfully, by now we had secured help with transport). Mr Liew gave him an eye ointment called Maxitrol, this worked very very well but, containing steroid, cannot be used continuously. We then went on to a simple hydrocortisone cream which made it quite wet again and we felt he went back a few steps. Right: Clearing and drying with Maxitrol and going back to hydrocortisone cream.

Back and forth again and another admission to Grimsby for some Oramorph, Mr Liew decided to admit him again on 21st April to deal with it once and for all. We asked (our GP and Mr Liew) for a referral to Great Ormond Street's birthmark unit, which we had considered before, in the hope they may use different dressings to help the wounds heal etc. We decided to stick with AH as we felt that something might be different this time that he'd stay in until he was 100% or near enough. Again his pain was managed with Oramorph for about a week (when thebody becomes used to it so it is no longer as effective). He had a few more dressing changes under general anaesthetic. One plastic surgeon talked of removing the entire mark and replacing it with Integra (synthetic skin) to rid him of all the problems (obviously this would need several ops when he was bigger to release but would end all present problems). They then decided to try Cryoskin, a acryopreserved sheet of cultured human epidermal cells (keratinocytes), to try and encourage healthy new cells to grow and heal the wound. This is commonly used on burns patients. He had two or three of these until it was decided it wasn't working and was making it too wet again and then he went back to his regular dressing of Telfa-clear, a non-adherent clear dressing, like a breathable, crispy cling film, and Acti-Coat silver anti-bacterial dressing. Mr Liew then said, once the infection had gone we can try another skin graft to the troubled area on his back. He was started on Propranolol, a drug to reduce the capillaries/birthmark. This is best used as early as possible, so at 8 months its really just to see if it had any effect. He had to have an ECG and a scan of his heart to make sure it was all ok to begin the drug, this showed up a thickened valve, although we were assured this is not a problem.
He now has a scar on his thigh from the donor site of the graft in January and this is very itchy indeed for poor Fox. He has Piriton all the time, two to three pain killers, iron, and Propranolol. He has to go through the immense pain of dressing changes two to three times a week. Right: Late April using Cryoskin. Fox also had another blood transfusion. This, along with the iron he was taking, took his HB into double figures for the first time.

Skin Graft

After the stress and pain of Christmas and New Year we returned to AH on 2nd January 2009. He was immediately put on a Morphine IV for the pain. Mr Liew came to see him as he had a dressing change and decided that it had broken down so badly that now was the time to do a skin graft. He would also remove some of the birthmark.

He had this done along with another two blood transfusions later in the week. He went home after the first dressing change and returned the following Tuesday. This time infection had taken hold in the new skin and he actually looked like a shark had attacked him. There was a hollow in his side and the grafted area was very wet. He was admitted again and stayed in for a month having a small amount of laser and several dressing changes under general anesthetic. Eventually quite a lot of the graft did take. Right: Fox after graft and first dressing change.

He returned home in mid February, again to go back every Tuesday after that. Right: Infection attacking new graft.

December

Fox was in AH around two weeks. Once returned home, the community nurses would come to him twice a week to help re-dress it and he would return to AH every Tuesday. He took a months course of Prednisolone (steroid) to try and reduce the birthmark a little.


He had several small bleeds during this period, some resulting in admission to either Grimsby or AH depending on where it happened. When this happened, the blood would literally squirt 6 or 7 inches from his body in a continuous flow. Of course we immediately applied pressure but this didn't stop his HB levels continuously dropping.
He had a laser treatment in early December where we had to get up at 3am to get him to AH on time, probably the most tiring day I have ever encountered!




Over Christmas and New Year Fox was in considerable, obvious pain. He would cry constantly, not eat or sleep. At 2.30am on Boxing Day I got up to feed him. While I was waiting for his bottle to cool he was screaming and squirming with discomfort. Withing seconds blood had come through all the dressings and his clothes, pooling the bed clothes beneath him. I shouted up to Mark (screamed the house down....he still didn't hear me though!) and cut off his clothes (not easy ones to remove in a hurry and there is simply no time to waste as he bleeds so fast) and applied several layers of gauze under pressure. He had again gone very pale and quiet and as he'd lose so much blood we called an ambulance. He spent Boxing Day in hospital and had it re-dressed by myself and a nurse, bloods taken

and with his new gift of a knitted santa, was allowed home.

Alder Hey - First Admission

He was transferred by ambulance on the Saturday and settled in on ward L1 (burns and plastics). All the right people came to see him as soon as they could and he was scheduled for his first laser treatment on the Tuesday. On the Monday night I noticed blood was on his gauzes. As ever, I am always concerned when he bleeds as he can lose a lot of blood without it coming through the bandage and I asked for this to be removed. My suspicions were correct and the gauzes had soaked up lots of blood. This was late on and results of a previous blood test also showed he needed another transfusion. They couldn't get a line in anywhere and had to call a matron to do this. This is the only person who has not let me be with him when something was being done to him, I've seen everything, nothing would make me turn into 'hysterical mum'. Instead I had to go outside when they put a line into his scalp. They kept the few strands of hair they had to shave off for me. He had more fluids and another blood transfusion in theatre when he had his laser treatment.

The pictures here show the birthmark as he arrived at AH and with the cap on his head protecting the line there. From what I understand since, speaking to other nurses etc, putting lines into the scalp is quite controversial these days and not favoured.

First Bleed

During October the wound under his armpit became more and more painful and was not clearing up with the dressing changes and cream. On 2nd November Fox was christened at All Saints Church, Waltham by the very caring Rev. Shelton. Fox was excellent throughout and looked beautiful.

We decided to have a family meal at The Haven restaurant on the other side of Grimsby as the children in our party could use the play area there. I went to change Fox and as I came out of the toilet I looked at my hand and blood was pouring down my arm. I shouted Mark to lay his changing mat on the floor and asked someone to get me some scissors quickly. My cousin is a vet nurse and advised me to not take off the dressing as it may be helping to stop the bleeding. This was probably the biggest mistake I made. I should have gone ahead and removed it to ascertain where the bleed originated from. Despite the dressing still being in place I applied pressure with a nappy, all I had to hand. Mark called an ambulance due to the speed he was losing the blood. Fox stopped crying and went as pale as he could possibly ever go. His body had gone in to shock and he began to shut down. In the ambulance he was just silent and sleepy. Thankfully, when we arrived at the hospital they had an entire team ready to work on him. He was still losing blood and anyone who has seen a haemangioma bleed will know it does not just trickle out. They took a good while trying to get a line in to him due to his veins closing. Eventually they managed to get one in his neck and he was then given fluids manually from several large syringes while they tried to order some blood. My blood was also taken to cross match. We were then told he would be transferred to Sheffield, Leeds or Great Ormond Street. Eventually he was stabilised and then we were told that he didn't need to be transferred as the bleeding had stopped. His arm was then bandaged to his side and he was admitted to a high dependency room for the night. The nurses in Grimsby are always very caring and friendly.

Fox spent a week in Grimsby where it seemed like nobody really wanted to remove the dressing and we were told by one doctor on his rounds that it ''wasn't really life threatening''....ok. His community nurse, Linda, helped us re-do the dressing on the Wednesday. Unfortunately, a non-adherent dressing had not been used so he squirted yet more blood out when this was done. Also, where his arm had been pressed against his side for 4 days, it had opened up another area of the haemangioma.

Several different doctors came to see him and he went down to see the Dermatologist again, this time he said it was really beyond his expertise now. We then saw a visiting Plastic Surgeon from Hull. He knew Mr Liew at Alder Hey and said he would discuss Fox with him. Later that day we were told he would be transferred to Alder Hey on Saturday.