Keep Jamie Smiling

Round 4 ~ part 1

 

I apologise that for this particular entry there are no photo's. The camera is back in the RM house and I really wanted to get this entry done as I know that people are asking about Jamie!! I will download them asap! So much else has been happening in our lives, not directly linked with NB which will mean change in our family is on it's way again. All will be revealed!

So last week we began treatment again with just the IL2 running through on it's own. Luckily there was room for us at the RM House for Poppy and John whilst myself and Jamie did the first 2 days. Jamie spiked a few temperatures and had a minor episode of swelling lips but that was all!! He enjoyed playing in his room and painting his Spiderman mask that he made on the previous stay!

These are photos that the Child Life Specialist took of Jamie painting his mask. She printed them out for us!

A very proud Jamie with his Spidey mask!

Jamie and I played trains until about 1.15am!!

Poppy also loves Jamie's trains...well..anything thats Jamie's really!!!

A rare moment of sibling appreciation!!

It was lovely to see the Dutch family who are now on round 3. They arrived in Phili shortly after we did. Then, how amazing is this, another Dutch family were next door to us receiving the exact same treatment! It is so bitter sweet that we have the same hopes and confidence when we see other families choosing this option yet at the same time we have all travelled a huge distance. Then we learn that Germany is trialling this very same treatment albeit for a very small number of children...

Progress....it's happening so let's get the rest of Europe interested!!!

If ever a boost was needed that we have indeed made the right decision to take part in this treatment then the fact that the Germans are interested in this IS our boost! We can never praise the Oncology team in Dusseldorf enough for what they did for us and Jamie.

The first part has gone well and Jamie had the nurses laughing [as he always does] with his talk and comments. The funniest one being "When I'm a big boy, I will have a big dinkle!!!!" Honestly, the nurses are still talking about this! I think this is going to be known as a Jamieism!!!

On Monday Jamie was able to have a 2 day break so we went to the RM House and we were all happy to welcome back the first British family who had the antibody treatment. Robyn was back for scans etc and their news was wonderful! She also looked so well!

The heat here has been overwhelming so anything air conditioned is very welcome. On Tuesday we decided to take Jamie and Poppy to the Please Touch Museum. This was a great hands on exploratory toy playground! One of the best things was a real replica of a supermarket complete with trolleys and baskets and checkouts!! Jamie loved going around and filling up his trolley!! We had been given free tickets from the RMHouse and Poppy and Jamie enjoyed it so much! Thank you! 

The following set of photos were taken during Jamie's break in treatment!

What an adventurous girl, I think I might nickname her 'Dora the Explorer!!'

Jamie doing our weekly shop, we obviously like bread!!

Back to work in the construction zone! He even clocked in!

The Mad Hatter's Tea Party. Just another meal in our household then!

Each month the RMHouse holds a breakfast and open house for potential sponsors and groups/organisations who are interested in volunteering or donating items to the house. At such event they like to have a family who are in residence to talk about their experience and the support the House gives them. The social worker called us and asked us if we would be that family this week!

So I willingly did my piece and afterwards one of the group came over to me in the dining hall and thanked me. Lets hope we've helped in some small way to make people donate their time/resources to the House!

On Tuesday night we decided to go out  for pizza/pasta with the Higgins family before Jamie went back into hospital.

So the dreaded day arrived - admission for the 2nd part ~ combination of IL2 and ch14.18. Today Jamie decided that he didn't want to go to CHOP and fought everything, including me! Clinic days are stressful enough with appts, examinations, waiting around and trying to keep the peace with Jamie so I was not impressed! Results showed that Jamie was dehydrated and needed fluids and that his heart rate was slow. These are not a good way to enter the antibody therapy so Jamie was sent for a scan and an infusion was given to rehydrate.

When our room was ready Jamie was kicking and screaming as he didn't want to go :(. Once he had scratched both of my arms like a ferile cat, he was fine :)! So what a relief that the day was over but as they say out of the frying pan into the fire!

Do you ever get that feeling of being on autopilot and not having time to 'catch up?' I had a serious case of this on Thurs when after a couple of hours of the antibody starting the whole anxiety thing was at it's highest level! So began the usual pattern of Jamie's blood pressure, Drs and staff in and out, not concerned but a little concerned and I broke down in front of the Nurse. She was great and I recovered very quickly!! I just feel as though I am holding my breath all the time!

The staff decided that in order to prevent the blood pressure from dropping any further they would substitute the sleep inducing Benadryl with a different antihistamine. This worked and thankfully, Jamie got through the first day really well!! He had minimal pain, I think the level of morphine was just right as he only had to hit the PCA button once when he said that his head was sore.

Robyn, her mum and Nanny Pauline dropped by to say 'Hi' and 'Bye' to Jamie. I think Robyn agreed it was strange for her to come back to where she had been a patient only weeks before and to see the antibody stuff all over again. She is a wonderfully spirited young lady and after they had gone, Jamie said "I'm a bit sad that they are going." Poppy adores Robyn too and both of their faces light up when they see each other!

It's now Saturday and although Jamie has not had complications on the scale as before apart from fevers, he is keeping us on our toes. As I type, the antibody  restarted 1 1/2 hours ago [finishes late at night] and we are seeing some side effects already. His saturation level is dropping again when he is resting and he is on oxygen. During the night, he needed oxygen and respiratory team are coming in periodically to check him. They can hear what they think is fluid around the lungs - a side effect from the antibody BUT his breathing is comfortable. The cough looked as though it was making an appearance again so down came respiratory again to check! That has gone again now so now that Jamie's sats are at 98% I feel as though I can relax a little and get this entry completed!!

We've made it to Day 3 without visiting Intensive Care so things are going well. Today the side effects are happening much quicker but we find as the cycle continues the effects are more accute. Jamie is surprising the staff and at the moment things are going so much better than in cycle 2!!

A pub in York is holding a fundraising event for Jamie this weekend. I have tried to find out details but don't know the name of the pub or anything. Thank you and I hope it goes well!!

Will do another update once this round is over!

Thanks again for reading!

Love

The Inglis Family