Updates since we have been home 28th August

Thank you all for reading our blog so far.  We just wanted to give you a quick update on how Gavin is doing since our return from Switzerland.

As you can imagine we have been very busy since we came back to Ireland. One or 2 welcome home parties have been had :) Thanks Swanner and Jay for a super Welcome home party.


But most importantly our little hero Gavin is doing great. His hair has grown even more since we have been away. He has been very active - even since starting chemotherapy again. Our little Superman as below..

Gavin started back on his maintenance chemotherapy program on the 8^th of August.  This involves an oral dosage of Cyclophosphamide, given at home, followed by a weekly trip into St. Johns Ward Crumlin Hospital Day Unit for IV Chemo (Vinorelbine).

Gavin also had 1 small operation on the 17th August which was a procedure to put back his testicle as  it had been moved out of harms way before we went to Switzerland. He recovered so well from this procedure and within a few days he was back running around again.
 
Gavin’s Bloods were low last week (22nd), his Neutrophil levels were 0.2 so that means he had to stop all chemo until his levels come back up.

Last Thursday 23rd we met with Dr O' Sullivan in Crumlin Hospital, she is responsible for the radiotherapy planning for all children.

She told us that Gavin will need 10 sessions of radiotherapy in St. Luke’s Hospital Rathgar. They plan to blast Gavin’s both lungs as there were spots located on 1 lung, detected back in November last year. Thankfully the intensive chemotherapy killed them off before Dec 2011 but as a preventive measure like the radiotherapy of Gavin’s Pelvic area the lungs must also be radiated.

This is planned for October but we do not have exact dates yet.

It will be the same scenario as in Switzerland, Gavin will need to fast every day and will have to be sedated...

 We also have our 1st scans booked since our trip to Switzerland. Our consultant has booked an MRI and also a CT scan for September 11th.

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.

One very happy and super strong boy

The super nurses in PSI

All the beads done...

Wooohooo

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.

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

Motto for today Saturday

Today's Motto

Great motto of the day

This was in the board in our new recovery room this morning

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.

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.

Saturday
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.

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...

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

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 area...so 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:http://www.google.com/translate?hl=en&ie=UTF8&sl=de&tl=en&u=http%3A%2F%2Fwww.stw-waldshut-tiengen.de%2Fcms%2FFreizeit%2FFreibad_Waldshut_%2FFreibad_Waldshut.htmlThey 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:http://www.blackforesthighlands.info/Discover/Region-Towns/Titisee-NeustadtThe kids loved all the shops and especially getting huge ice creams:)

Gavins Blood levels very low..

After Gavin's treatment in PSI yesterday we had an appointment in Zurich Children's hospital again to get GAvins bloods checked. HIs levels are still really low and his levels are now at the stage they call "neutropenia" (Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. Neutropenia is sometimes called agranulocytosis or granulocytopenia because neutrophils make up about 60% of WBCs and have granules inside their cell walls. Neutropenia is a serious disorder because it makes the body vulnerable to bacterial and fungal infections.)...so we have to be very careful now for the next few days as Gavin could get infections since his body has no immune system. This can happen a lot with Cancer patients especially when they are getting chemotherapy or like Gavin chemo and radiation therapy, the radiation can kill the cells in bone marrow which don't generate as normal. So chemotherapy cancelled again for this week. We have to go back into the hospital next TUesday and get his bloods checked again to see if they are back up. They also confirmed he still has a urine infection could also be cause from the radiation treatment. These are some side effects that we knew may happen so we will just have to monitor them and hopefully they will go away soon.

Super day today

Day trip to Zurich Zoo today. We all had a super time as you can see from the pictures below..

Some pictures from this week in PSI

First picture is of me and Lucy sitting beside Gavin's bed waiting for him to wake up from his sedation and the next one is of Conor and Lucy holding Gavin's beads to show to end of week one

Week 1 over only 7 to go...

Week one is over..woohoo!! It has gone very quick. Gavin had Proton Treatment today as PSI was not open on Monday so we had to catch up on a day, (even though it was Saturday). Everything is going great so far, kids are all enjoying themselves and having fun which is great. Conor and Lucy seem to be in a routine now with what needs to be done every morning, (which is to not eat or drink anything around Gavin from 8.30am until we go in to get his treatment). It's so hard especially when the weather is hot but it's working so far.

We had to go into Zurich KinderHospital (children's hospital) on Thursday to bring in Gavin's bloods to be tested (this is to check his blood count to see if the oral chemotherapy which we give him every day has made his blood cells low). 
Zurich city is not designed for cars....It is a nightmare place to drive through. Even the Sat Nav got confused..never mind the co-pilot!!  Anyway we met with the nurses and doctors who were all really nice. A big surprise was that they tested and had the results of Gavin's bloods within 15mins....at home it takes a little bit longer:)

So the results revealed that Gavin's blood cell count was low which means we needed to stop his chemotherapy from Thursday until Tuesday and see if his levels have returned to normal. He also was complaning about the tube in his belly (super pubic cathater). The nurses also checked this as it was a bit red, the also took a urine sample. They said Gavin had a urine infection caused by the tubes. So he is now on antobiotics for 7 days. We would never have known about his bloods or urine infection if they had not been tested as he has been running around like a normal kid all week...Just shows us how strong he is. THE TANK:)

He is still very groggy for a while when he wakes every day after the sedation and can be cranky for a few hours but sure that's nothing to complain about considering what he is going through..after a few hours he is running around with Conor and Lucy which is great to see.

On Friday after Gavins treatment we brought the kids up to a playground and petting farm in Waldshut. It was an amazing place. Loads of playground stuff then goats, raindeer, warthogs and some birds which all the kids could feed. And wait for it...All the asked was that you leave a donation on your way out. Imagine a place like that at home...dont think so.. anyway great to have somewhere so close we can go to.
So just 1 day off this week tomorrow, we havent made any plans yet but we will try and go somewhere for a day trip.

Finally Internet access..

Some pictures we wanted to upload below..gavin and Conor sitting on balcony, and Lucy holding Gavin's beads in PSI today

All good day 1 over

Just quick update everything went very well. Gavin woke up fine actually looking for some juice and jelly:) we were all in the recovery room waiting for him to wake up. Conor and Lucy were sitting there on the bed and were brilliant. Thank god all went well we all feel better now. Day 1 completed

1st Day of Treatment 19th June 2012

Well reality has hit home yet again, myelf and Jayne felt sick last night with the thought of what was to come...
Gavin had to fast from 6.30am this morning. Last clear liquids from 8.30am then nothing...It was hard with the other 2 kids as you can imagine so I took Gavin for a walk while Conor and Lucy had some breakie..
Then it was nearly time to go. A quick 20mins drive to PSI.
We arrive on time 10.30am to meet with Dr. Carmen who will be the main doctor who will look after Gavin.
They all had a play for about 20mins and then it was time to start. I took Gavin in this morning (we will take turns every day). We went into the main room where Gavin remembered the box that had the beads in it...He looked and pointed at the box and knew what was in it. amazing that he remembered. So today he got 1 silver bead (for proton therapy), 1 small blue bead(start of the week) and 1 blig blue bead for CT Scan.
Then it was sedation time...I hate this...Especially when Gavin knows whats going to happen. The look in his eyes tells it all but I know thats just what has to happen..and it will have to be done every day now for the next 7 weeks or so.
I held him in my arms until he fell asleep then lay him on the table. I kissed him and said I love u buddy...
Know we have to wait about 1.30mins...Please god all will be well..

All good so far

Well we all arrived safe in Switzerland. We stayed in a hotel close to the airport on Saturday night and then went back to the airport to pickup our rental car. I have to say a huge thanks to Eilish Cunningham, Daniel Grothe from HERTZ car rental who gave us the best deal possible for a car rental for the 8 weeks we will be here, thanks so much.
Then on Sunday we travelled doen into Germany to our new appartment. It is very nice 2 bed appartment at the top level of a house. The kids have really settled in already which is great. We have access to the garden downstairs which has some kids toys which is great. Weather is pretty hot about 30 degrees so far so it will take a bit of getting used too but sure we cant complain.
Still trying to sort some internet access out, since we are right on the Swiss German border most mobile wireless internet dosent know which provider to pick...Work in Progress.
Big shop in LIDL yesterday, it was funny Conor said "this is the same shop as at home"...ha..haa.

Team Glynn ready to go...

Well after nearly a week of packing we are now in the airport bags checked in (thanks to stu and Nicola). Kids are in great form they are all so excited. Talk to u all soon from Germany/Switzerland

Last time in Crumlin for 8 weeks..

Well we had to go into St. Johns Ward day unit today for Gavin to have his last IV chemo before we head off tomorrow. And Lucy wanted to come too which was great. She and Gavin played around as they always do which was a great distraction for Gavin. You can see from this picture Gavin was hooked up to the IV Drip while in the little car, and Lucy was playing with the doll that they use to teach parents how to change the Hickman line. It was great to see our good friend Jane Garland today and of course Dr Capra before we go..now back to packing

Gavin's beads

The picture below is of Gavin's new beads he was given for his first day in PSI (Jayne's hand modelling).
Each child that undergoes treatment gets a bead for their first visit, the beginning of the week, each CT scan, each proton therapy session and the end of each week. This will eventually make a necklace for Gavin to take home as a symbol of his time PSI.
The picture below is where all the kids beads are hung up beside each other. Gavin now has his own spot..

Just back from our first meeting with the guys in the hospital. They we are so very nice and went through everything about the treatment and what is involved every day.
One thing that we didnt know is because the radiation will be close to Gavin's Hip area their is a risk that he will need a Hip replacement at some stage. This is becuase that one side of his hip where the tumour was located will not grow the same as the other side..We will just have to deal with that IF it happens...
Now back to trying to find somewhere to Live for us all.. 

Gavin Birthday Breakie with Mummy

All set to go..just waiting to board now

Prep Procedure for Switzerland

24th May 2012


Back into Crumlin this week for Gavin to have a small procedure done before we got to Switzerland on Sunday for our initial meeting with the team over there. Picture below Gavin in great form as always waiting for the operation.

The team in PSI (Paul Sherrer Institute) requested that before Gavin comes over for Proton therapy they wanted the Oncology Team in Dublin to do 2 things:

1: Place Gavin's right testicle up near his hip area..Yep for all you men out there..Ooouuchhh

2: Insert Suprapubic Catheter – means you have a urinary catheter inserted into your bladder through the abdominal wall (this will allow them to fill up Gavin's bladder which will then move his bowel)

The above seems drastic but the reason they asked for this to be done is that when Gavin receives the Proton (Radiotherapy) that it does not touch of anything that it shouldn't..any other organs