Day Minus 6 to Transplant Day.
This is Anabelle's last day on the Rabbit ATG and she is coping very well. She doesn't seem to have any of the known side effects of this drug, although she is sluggish, lethargic and a bit moody.  But there is no sickness or rashes. She had a low pulse rate the other night and a doctor came to see her and connected her up to an ECG machine but fortunately the readings were nothing to be concerned about.
We are trying not to go stir crazy by having play time, watching tv and videos etc.. She isn't happy with some of the routines though, especially the mouthcare. Part of the symptoms are breakdown of the tissues of the mouth and throat. To help alleviate this a mouth care routine has to be adopted whereby the mouth is swabbed 4 times aday. This has to be done by physically pinning her down, she can be a strong little thing.


Working on the laptop!!

The Olympic torch came into the hospital yesterday and our nurse manged to get her picture taken with it. The opening ceremony of the Olympics was impressive and we enjoyed it more than expected, especially the section on Great Ormond Street Hospital. (I don't know if any foreigners would get it though !!!)
Tomorrow is the start of the more aggressive chemo and she will be on Busulfan for four days.

Today is Day Minus 9 for Anabelle. The days are being counted down from day Minus 11 up to her transplant day.
We have now relocated to London (day Minus 11) so that both of us can be there for her treatment. As only one parent can stay on ward overnight we are going to tag team so that we can evenly share the lack of sleep. we also have a room at the Sick Childrens Trust. We are both staying strong for her and will deal with what ever is thrown at us.

Last week we had spent a few days up here whilst Anabelle had her PEG inserted. This is a tube which has been surgically installed into her stomach. From this we were able to inject her anti fungal medicine directly into her stomach. This might sound harsh and it felt really weird doing it but it saved a lot of heart ache by having to pin her down and try a get her to ingest this foul smelling liquid by her mouth. She had a raised temperature after the operation so was kept in an extra night as a matter of caution. We also met another child with Hurlers on the ward who is also awaiting his BMT. His parents were really nice. They were given the diagnosis the same week as we received our 'wonderful' news. Apparently its very unusual to have two hurlers in at the same time.

On Monday with our suitcases in hand and our back packs on we arrived at Waterloo and got a taxi to Great Ormond Street. We were given the protocol out lining Anabelle's treatment and details what drugs she will be having and when. This protocol is based upon treatment given through out Europe so we feel we are in really good hands. 

Still able to smile. Bring it on!!

Yesterday (Day Minus 10) after meeting various members of the BMT team Anabelle had her operation to have a Hickman line inserted. This is basically an additional two lines placed in her chest area so as to enable the speedy insertion of all her drugs. This was done via a vein in her neck. She will be having  an TPN infusion instead of food. This is an infusion that will last approximately 20 hours. As she is having a cord transplant they have found there is better engraftement if the patient refrains form eating for at least 3 weeks. I would struggle with 3 hours!!! One good thing is that she will no longer have to have a cannula fitted with all the hassles that go with that. She also had an infusion of Methylpredisolone which is a steroid to help the chemotherapy.
Now it is day Minus 9 her chemo will start with an infusion of Rabbit ATG (Anti Thymic Globulin) which will last about 8-10 hours. This is the less aggressive chemo and will be given everyday for 4 days then on day Minus 5 the stronger Chemo will be given. She is a little tired and grouchy but has still found time to play with her new toys.!!!

Hi there is a lot to convey today, mainly down to the fact that I haven’t posted for some time. There has been a lot of development in terms of Anabelle's progress, particularly her walking. She is now cruising around the furniture and no longer content to just sit there and laugh. She now needs to be on her feet and laughing.

 

Picking the winning numbers!!

We need to start off by saying a massive thank you to the good people of NATS where as we have mentioned previously Anabelle’s Aunty Sally works. They have been doing some more fundraising (do they ever stop!!) and have raised over £5,000.00. They have decided to split this three ways with a section going to the MPS Society, a section for research and a section for Anabelle’s needs. You have to say in this day and age where the word austerity is mentioned on a regular basis it’s good to see people giving.

There are also a lot of people running the Great South Run now. Apart from myself there is Paul B, Terry, Andy, Paul NZ, Kate, Marie, Kelly, Mel, Luke, Betty and John. Enough for a football team!!! This is a testament to Anabelle's personality as she seems to have a large impact on everybody she meets. If anybody wants to set up a JustGiving page they can join Team Anabelle by going through my link to the side where it can be found at the bottom of my page - sponsorship can also be done on this page.
 
Going back to Anabelle's treatment the 30th May 2012 was a normal ERT day. Leanne was at a works sales meeting so I went up with my other daughter Leah who was on break from college and after Leanne joined us at great Ormond Street I took Leah to see Damien Hirst exhibition at the Tate Modern. A bit of abstract art in our surreal world!!!

The following week after the Diamond Jubilee celebrations we met up with another family whose daughter has Hurlers. Their daughter is 6 months ahead of Anabelle in terms of treatment and is an extremely beautiful vibrant child. Throughout the whole time we were there she was running her dad ragged!!. I bet he slept well that night!!! It was reassuring to meet up with people who had gone through what we are going through, and I get that this is a lifetime condition but to see how active she was after her bone marrow transplant was superb to see.

Anabelle's tenth infusion that week was a normal with nothing of note to report.

The following week I had to work so Leanne went up with her mum and dad for the eleventh infusion. Again another normal infusion, the canella went straight in and there were no issues.



Leah and Anabelle at Terry and Pauls wedding

On 15th June 2012 Terry and Paul were married and Anabelle was flower girl. She almost stole the show. Congratulations to you both - we all had a fabulous day.
 
On 20th June 2012 before her normal ERT we met up with the Bone Marrow Team on Safari Ward. During this meeting the whole process was explained to us and it got very in-depth. We were also advised that this would commence possibly 3rd week of July. This was positive news and well ahead of the 10th August previously quoted. We had the risks of the transplant explained to us and also what would happen if she didn’t have the transplant. Although it is our decision to make we both feel that this is the only option available to Anabelle to give her the best chance of a life as close to normal as possible. Although this should help her produce her own enzymes it does not work particularly well on the bones so she will need corrective surgery as she gets older. The form of treatment is aggressive so she will also be infertile throughout her life and will almost definitively require hormone treatment when she gets to puberty. This all sounds nasty but the prospect of not having it done is even worse.

The good news is that there are actually two matches for Anabelle. She has a live 10/10 match in America and a cord match in Slovakia. (I did ask if she had the American match would she be entitled to a dual passport - but apparently not) We have been recommended to use the cord match as it seems to have the best results for Hurlers and we are going with their recommendations on this one. The basic outline of the process is she will have a Hickman line put into her chest and a port installed into her stomach. She will then have nine days of chemotherapy, 4 days less severe than the final five the aggressive form of chemotherapy. The stem cell transplant will then take place via an infusion. She will be given a whole host of drugs and kept in isolation. Between day 5 to day 21-28 will be rough then we hope to see the donnors white cells apear. We were told about all the drugs, their names and what they are for but I will go through them later as she is given them.

On 26th June 2012 we had the ENT investigation which confirmed that she has no issues with her ears, nose and throat. We were told that there were no issues for a normal baby let alone a Hurlers baby, superb.

On 27th June 2012 Anabelle had her thirteenth infusion. It was also confirmed that Anabelle will be admitted on the 23rd July 2012 for her transplant - 4 weeks away- scary stuff. She has been prescribed Sporanox which we are giving her daily to ensure that she has no fungal infections.

In the afternoon we met up with Nicki who took us up to fox ward to show us around. It was smaller than I expected and the rooms were a lot smaller to. As we already knew only one parent can stay on Ward overnight. We will both need to stay in London somehow and I'm not sure yet how we are going to do this. I have met up with the family accommodation Team to see if we can get accommodation and our name has been put on the list. bearing in mind the number of clothes changes required per day for the child and the parent and also the amount of times throughout the day and night when the nappies will have to be changed due to the medication we are both going to have to be around. I cannot see how this can be done by one person. We will see what happens with regard to that one. In the meantime we are starting to get the house prepared by finishing off the jobs that have been put on the back burner and thoroughly cleaning the house.

I think we are going to get OCD with the hand cleaning!!!!