Great Ormond Street Visit 2011

Having only needed to go for one check up in a year has been amazing!

We went back to London in early February for a scan and a check up with Prof. Harper. The scan was all clear so they couldn't even pick up the haemangiomas that were on his liver.

I was very surprised that Prof. Harper offered Fox a referral to the plastic surgeons at GOSH. I thought he would just be left now and perhaps the graft released as he grew but no. They may be able to laser the remaining visible thread veins away, make the graft more comfortable and take away the excess skin which is weighing down the area. The appointment will be within the next year and back again in a year for a check up.

Excellent!

A reminder to anyone reading this, a charity event to raise funds for the BSG will take place in Louth, Lincolnshire on Saturday 26th March 2011. Please share and invite, thank you!

http://www.facebook.com/event.php?eid=125648377503775

Charity Event

New photos, January 2011.

Saturday 26th March 2011 10am-10pm.

Please search on Facebook for the open event ''Tattooing and Music Charity Day''. Local tattoo artist, Drew Le Fox, has very kindly organised this event and given us his time and space. He will be tattooing for 12 hours and there will also be local bands and DJs to entertain. So, even if you can just pop by to drop a coin in a box we'd be very, very grateful. To book a tattoo on this day, with 100% of proceeds going to The BSG.

NOTE: AND HOW KIND HE WAS. THIS EVENT WENT AHEAD AS PLANNED IN 2011 WITHOUT  MYSELF OR MY MUMMY BEING PRESENT. THE NAME AND ADDRESS OF THE BSG WAS THEN PASSED ON TO MR POTTS TO FORWARD THE CHEQUE TO (OVER £400 WAS RAISED)...BUT, HE WENT AHEAD AND SPENT THE MONEY ON HIMSELF. IF ANYONE WOULD LIKE TO ENCOURAGE MR POTTS TO FINALLY PAY FOR THIS DROP-IN-THE OCEAN OF WRONGS HE HAS COMMITTED THROUGHOUT HIS LIFE. DO PLEASE POLITELY SHARE ....THANKS, FOX x

A New Life.

Fox is doing great, hes a very happy, naughty little boy and is now held back by nothing!

I have posted a new photo of his birthmark to show how its doing. Its rapidly looking better although still very 'pronounced' from the rest of his skin.

Join Facebook Group

http://www.facebook.com/group.php?gid=217300165814&v=photos&ref=ts#!/group.php?gid=217300165814&v=wall&ref=ts

Only a few people on so far but everyone and their dog uses Facebook so join us! :O)

How Hes Doing

I'm in the process of trying to put an up to date slide show of his recent photos on Youtube, here they are below (except a bit cut off!) Hes absolutly fine and been enjoying his life as normal :o)

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.