We created this blog to document our journey with Gavin (and all the Glynn Family) while he battled his fight against Embryonal Rhabdomyosarcoma (Soft tissue tumor)
Wednesday, June 27, 2012
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.
Sunday, June 24, 2012
Saturday, June 23, 2012
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.
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.
Tuesday, June 19, 2012
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..
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.
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.
Saturday, June 16, 2012
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
Friday, June 15, 2012
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
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