Sunday, July 29, 2012

Leaving our appartment today

We are nearly all packed ready to leave our appartment in Kussaberg. Can't believe it's been 6 weeks.

We had a nice few days so far, going back to all the places around Kussaberg where the kids loved like the playground in the Forrest and the outdoor swimming pools.

Gavin is doing great and his belly where the tube was removed on Wednesday is now healed over. We changed his dressing every day and each day it got better.
So good that last night Gavin was able to have a bath with Conor and Lucy which was the first time he could have a bath in over 10 weeks, he was so happy it was brilliant.

So we are off now to a city called " Ravensburg which is about 2 hours away, there is a small theme park near the city where we have a few day passes so we can spend a few days there before we fly back on Wednesday night.

Wednesday, July 25, 2012

One very happy and super strong boy

The super nurses in PSI

All the beads done...


Gavin did it...finished today Wooohooo

Well we didn't think we would be celebrating this early but my god are we so happy right now.
Gavin finished his treatment this morning and then they also removed his supra pubic tube (one in his belly into his bladder).

We have to admit it was a very emotional day especially saying good bye to all the doctors and nurses at PSI who have been amazing to us and Gavin for the past nearly 6 weeks.
They have asked us to return again next year for a checkup and stay in touch with updates on Gavin's progress.

We wish this was the end of the treatment for Gavin but we still have a long road ahead, another 35 weeks of maintenance chemotherapy and MRI and CT scans ever 10-12 weeks also some radiotherapy on Gavin's lungs when we get home but right now we are delighted, it's a further step closer for Gavin's recovery please God..

We would like to thank all the staff at PSI especially Dr Carmen Ares and Rita the nurse who really made us feel so at ease and was amazing with Gavin, also the doctors in the oncology ward in Zurich Kinderhospital.

What this means for us, well:

1: No more having to wake Gavin at 6 am every morning to have his last bottle.

2: No more having to hide food every morning, Conor and Lucy especially.

3: being able to let Gavin have a drink past 8am ever morning and not fasting.

4: Gavin not being sedated every day
And so much more but they are the main ones...we are all looking forward to being able to have breakfast as a family tomorrow (small things really mean a lot )

We need to change Gavin's dressing every day now until Sunday and then it should be ok so we are staying close to the hospital till then, and then we can hopefully bring the kids somewhere until Wednesday when we fly back home to sunny Ireland:)

We have kept the Sat Nav we brought with us from Ireland updated and saved all the locations and places we have visited, so we will give this to the next family from Ireland who will be coming to PSI
We also donated all the toys we brought over and bought while in Germany to PSI this morning so they can put them in the playroom for all the other kids to use.

Ok now it's time to try enjoy our last week in Germany/ Switzerland.

Thanks to everyone who has supported us back home, all our family and friends and all the messages we have received they have really helped and kept our spirits high.

We look forward to getting home and possibly having a drink or two.

Monday, July 23, 2012

Some pictures from europapark

Great news today...

After a super weekend in Europapark with Jayne's mum and dad the kids had such a great time. It was great for them to see their granny and gran dad again and have a break from going into PSI every day. We have to say a big thanks to Coca Cola for arranging special passes and dinner for us while we were there. Thanks Thomas, Maren and of course my cousin Damian.

We arrived at PSI as normal for Gavin's treatment. We met with Gavin's doctor who had arranged for us to see the Proton Machine called the Gantry 1. We were dreading today for a while now as originally we thought she was just going to show us the machine etc but then last week she told us that we would be seeing Gavin getting the Proton therapy from being sedated , CT scan etc the lot.

But to keep us in good spirits she told us the we will be finished Gavin's treatment on Wednesday....this was unbelievable she explained that because everything has gone so well with the Proton therapy they have targeted all the areas they needed to with 28 sessions rather than 33...this was a shock but brilliant news, she also told us that they will remove his supra pubic tube on Wednesday as it will be no longer needed.

Ok back to the treatment. So Gavin was sedated as normal but then we stayed. The nurses undressed Gavin and then put some tape over his eyelids (this was so he has no eye movement when in the machine) not nice too see..

Next the machine came through the door on a laser guided line...this was like something from star wars...Gavin was then lifted over onto this trolley face down with his pelvis and legs in a mould.

Then Gavin was moved into the CT scan room on the trolly. The machine then docked at the CT scan and a robotic arm lifted Gavin from the trolly into position for the CT scan again unbelievable.

After a few minutes of the technicians analysing the scans and the dimensions of where the dosage would be delivered for today the laser trolly then was used to take Gavin into the Gantry where the Proton machine is located.

Now for the really mind blowing technology. The proton machine was massive Gavin looked so small beside it. Again another robotic arm lifted gavin from trolly into position under the Proton machine. Then we left the room and watched gavin on a video link from a room close by as the radiation was administered

It only took a few minutes and the machine moved Gavin a few times to different positions. Once finished we were able to go back in and then follow the machine as Gavin was returned to the recovery room.

I was allowed to video the whole process and take pictures so we will be able to show gavin when he is older.

We decided not to upload them to the site as some people may not like to see them as they are a bit scary but if anyone would like to see please just let me know we would be happy to share.

It was the most amazing day between seeing what Gavin has gone through ever day for the past nearly 6 weeks and knowing that we will be going home sooner to see all our friends and family again.

We will hopefully be home next Wednesday night if we can book flights as we need to make sure Gavin is ok after getting the tubes removed.

Well we will post more and uploads some pictures over the coming days.

See u all soon

Thursday, July 19, 2012

Wednesday, July 18, 2012

ironman pictures

Wednesday 18th all going well

All going well so far this week.
Gavin didn't have treatment on Monday as PSI was closed. Gavin has been much better since the tube was replaced.
We were back in the Kinderspital hospital yesterday for a checkup, bloods are still low and they have given us some more antibiotics (stronger dosage) for another 7 days to make sure the infection is gone. They will continue to change his dressing every day
We don't have to go back there until next Tuesday.

At the weekend we had a good friend from Ireland come over to do the Ironman Race in Zurich.
We all went in to see Rob Moran who was doing the race to raise money for Bray Cancer Support Group.  Rob asked if we could bring some ham rolls for him and meet him at a part of the cycle race called " Heartbreak Hill"...well it certainly was...
Some Pictures below of the day. It was truly amazing and I still cant believe that people can do that race.

Conor and I came back in to meet Rob near the finish line to cheer him on. We had a huge Irish Flag which Rob gave to us for the day. Near the finish we saw Rob coming and he ran over and took Conor with him (while the 2 of them held the Irish Flag) and ran across the finish line...It was so amazing to see Conor and Rob, and I think the memory will live with me and Conor especially forever. Rob is now Conor's Hero and all of us too.

Jayne's 2 parents are arriving tomorrow from Ireland to stay with us for 4 days, which will be a great help.
We are all going to a place called "Europa-Park" in Germany from Friday until Sunday. It is like the German Euro Disney. It will be such a nice break for the kids after how good they have been on this trip. My cousin who works in Coke Cola has arranged VIP tickets for us so no queues which is a real winner...woohoo
Only thing is since PSI was closed on Monday they told us that we need to make up the day of treatment so I have to drive up on Saturday morning with Gavin and then return to Europa-Park in the afternoon.

Saturday, July 14, 2012

Some pictures over last few days

The clown doctors were in the Oncology ward of the Kinderhospital on Thursday when we were there which was good timing..

Week 4 done but few hard days for Gavin

Another week done but we had a few hard days..on Thursday the doctors in PSI said that they were not happy with Gavin's Supra Pubic Tube(the tube in his belly that they use to fill up his bladder). They thought that it looked infected as the skin was very red around the entry hole and also they said he had another urine infection. So after his treatment on Thursday morning they told us we had to go straight to the Kinderspital hospital to get it checked. This tube has caused loads of problems so far and we know it is the best option for his treatment but it's still a pain and a real annoyance for Gavin. So we went to the hospital and the doctors in the Oncology ward open the dressing to see what was happening. We also saw how red the area around the tube was, they didn't think it was infected but they got a second opinion from a surgeon to be sure. She thought also not an infection but that the tube needed to be changed. They told us that the guys in PSI would be willing to "try" change it on Friday morning after his treatment and if not successful they may have to do a small operation and place the tube somewhere else around his belly..."shit" really didn't even sum up how we felt but we were confident that the guys in PSI would be able to do it. Gavin was in good form as usual but sore when you touched anywhere near his tube. They gave us some pain medicine for Gavin to take which would help.

Friday -PSI
A lot of prayers last night that all would go well this morning..
We arrived at PSI at 10am and spoke with the doctor. He advise that they will try replace the tube after his treatment this morning so they would not interrupt his Proton treatment. It would take about 45 mins longer today. At about 1pm we were told Gavin was in the recovery room so we went in and the doctor told us that he was able to replace the tube....WOohoo I nearly kissed him. So relieved that 1. They could do it and 2. That Gavin now could have a better chance of getting rid of the infection..
We started him on an antibiotic straight away and then we and PSI will change the dressing everyday for 1 week and see if it improves. They may change the tube again in 7 days when the antibiotic finishes as the infection may attach to the new tube also. We are glad the acted so quickly, they are really good in PSI and also the hospital.

We moved to a new apartment this morning, just to the downstairs of the building which is great. Gavin and the kids live it as they now have direct access to the garden. Gavin is already in much better form so hopefully the new supra pubic tube will do it's job.

Tuesday, July 10, 2012

Half way mark today...:)

Can't believe we are half way through Gavin's treatment already it's brilliant.
Everything went very well today, but Gavin's blood count has come back low again so we have to stop his chemotherapy. We thought this may happen as he wasn't himself over the weekend especially on Sunday, his potassium levels still have not gone back up either so we have to give him supplements now to try boost that back up. The break from the chemotherapy will be good, we have to go back into the Kinderhospital in Zurich on Friday to get his bloods tested again but I think we will already know what they will be...

Friday, July 6, 2012

More pics from today

1st: The 3 messers playing before Gavin went in for his treatment this morning

2nd: In the Kinderhospital Zurich getting IV Chemotherapy

Week 3 over but hard ole day for Gavin

All went very well the last few days but especially today. Gavin did very well with his treatment today and we had to bring his bloods again to the Kinderhospital in Zurich to check his levels and to our surprise his levels were up since Tuesday....So this meant they could administer his required IV chemotherapy today and we could start his oral chemotherapy also. We were very surprised. So Gavin was hooked up to the IV Chemo for about 1 hour in total, it didn't bother him at all and he just wanted to play with Conor and Lucy and never mind what he was hooked up too...he really is the best patient in the world...

So it has been a really long day especially for Gavin, Conor and Lucy..a lot of driving and waiting but they were all brilliant, think we will have to treat them to something nice over the weekend. Glad this week is over nearly half way there already:)
Some pictures below from today

Tuesday, July 3, 2012

Week 3 beginning 2nd July

Well super start to the week...ON Monday the nurses in PSI told us that that Gavin urine/kidney infection was now gone...woohooGavin's treatment is going very well and we now have figured out a way to make him more comfortable when getting sedated. We have his main Hickman "freddie" line out ready when we go into the room and hold him facing away from the nurses so they just talk to him while he is in our arms facing out back. It only takes about 20-30 seconds now and it is so much better and less traumatic.He is waking up from the sedation fine too, still groggy for a while but the jelly and juices seem to help him recover quicker.But his bloods are still very low so we have to make a trip into the Kinderhospital in ZUrich tomorrow to see the doctor. Tuesday 3rd JulyTreatment went all well this morning which was great then we went into the Kinderhospital to see the doctors in there.They also were concerned about his blood level and not being able to administer chemotherapy but as we thought the Proton therapy will always come first and if his bloods do not come back up we will just continue the maintenance chemotherapy when we get back home. The doctors explained that one of the major parts for blood production is in your back and also in the hip this would explain why Gavin's bloods are not coming back quickly since the radiation-proton therapy is being administered to his hip/pelvic area.It's funny to see Gavin now with his hair and eyelashes starting to grow which has been the first time since the end of October last year...he looks so weird, we are having bets between ourselves to see if it will still be blonde or darker...He is also saying new words every day and copying what Conor and Lucy are saying..the best one is "I'm BIG" haahaa I'll try see can I record and upload as its very funny to hear.So onwards and upwards with the Proton therapy and we will monitor his bloods every week to see if there is any change.
Below is a picture from today in the Kinderhospital. There is a green digger in the hallway so Gavin loves to play on it every time we go in..and Lucy and Conor too

Update week ending 1st July

We had a pretty busy week last week..Jayne's brother Stuart arrived on Wednesday to stay with us for a few days ( a very welcomed help). He minded Conor and Lucy on Thursday and Friday morning while we brought Gavin into PSI for his treatment. They loved having Stuart here especially Conor who was very upset when he left. They were both spoilt by their uncle Stu which was a nice treat for them both.Gavin's treatment in PSI went very well last week, he still had the kidney/urine infection on Friday and his bloods were still low so no chemo again this week. He was still in great form so it didn't seem to bother him too much...nothing ever does:)On Saturday it was Stuart's last day so we all went up to a playground/petting farm near Waldshut. It's a great place for kids- big play area and you can feed the animals too like reindeer, goats, birds, rabbits and wild boar....Then on Saturday afternoon Stuart and I took Conor and Lucy to one of the many outdoor swimming pools around where we live. They are called "freebad" in Germany and most towns have at leat 1, below is a link to one near us: are unbelievable....a few different size pools with slides etc and it only cost €5 for all of us...and you could stay there all day...amazing. Poor Gavin had to stay at home with Jayne as he can't go swimming with all his tubes.On Sunday we drove for about 50 mins to a town called "Titisee-Neustadt" which is located in the Black Forest. It is such a beautiful place also link below: kids loved all the shops and especially getting huge ice creams:)