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

"And the Winner [so far] is..."

What an anxious week, firstly we said "Goodbye" to Granny Inglis who enjoyed her time with us and then 2 days at CHOP for the all important scans. We took the train on both occassions as it's a nail biting drive into the city and with our stress levels already heightened, we thought this would be a better idea.

Whilst keeping up to date with England's fantastic efforts in the World Cup[!!!!] the only results we have been interested in are Jamie's disease re evaluation. 3 scans were performed: MIBG, CT scan and Bone Marrow aspirates.

Jamie coped well with the aneasthesia and we were reunited with our staff from radiology who had the pleasure of our company for 2 weeks every morning way back in March. They and us were so pleased to see each other. Robyn [one of the recovery nurses] even brought Jamie a chocolate pudding desert for when he woke up! We have this running joke with her as Jamie  would ask Robyn for food each time he awoke from anaesthesia! He thinks that she cooks the food to order!!!

So, the MIBG scan is designed to show any hotspots, ie any NB cells that are big enough to be detected. We received the phone call whilst waiting on the platform for the train home for the first result, MIBG scan.

MIBG scan = CLEAR!

48 hours later we received the final results;

CT Scan = CLEAR!

Bone Marrow Aspirates = CLEAR!

It's been 6 months since Jamie finished  dose chemo and received his stem cell transplantation. In many cases, children relapse within this short time.

JAMIE IS STILL CLEAR FROM CANCER, 6 months later! Jamie is thrilled as he truly understands what this means. He is a very bright boy who knows far too much about cancer, more so than you or I.

Of course he is by no means cured but this is the best news we can hope for!!! We will continue to hope and fight for as long as needed [probably the rest of our lives]. I often think back to the day of diagnosis and what a beautiful Spring day it was. I was 6 months pregnant, enjoying work and excited about the future. Little did I know how a couple of hours later this rollercoaster was about to start for Jamie and our little family. Along the way we have gained so many new friends and we know that people are following Jamie's progress and so it seems that our family has grown! We all share the same emotions as we hear and read about Jamie, just at different levels I suppose.

We have always said that our life is like a Soap Opera! Whilst out with John's mum, he took this picture which was rather fitting!!

Although Jamie and Poppy's Granny was only here for a week, we packed a lot in, amongst our hospital visits. In fact we spent a whole day at the hospital as Jamie had an ear infection so they kindly gave Jamie antibiotics through his broviac line which meant we didn't have to fight with extra medication on top of the Accutane!!

The surrounding countryside in Warminster is beautiful and in the evenings we get a free light show with all the fireflies! Granny enjoyed our walks and here are a couple of photos of us all just 5 minutes walk from our house!

Jamie was obviously not as interested in the deer as we were!!!!

I love this photo!

Saturday 26th June

You may recall from a previous blog entry the wonderful work that this Foundation does. A Childhood Cancer Symposium was organised by them at a hotel in the City. We travelled the day before so that Granny could see some of the historical sights.

The Liberty Bell

Jamie's history lesson. I teach on the go but poor kid can't escape his teacher!!!!

Poppy with her baby. This doll goes everywhere with us!!!

We all had fun on the 'ducks'

We relaxed in this street in the early evening

The Symposium was really useful. For the first time since I don't know when...both children were taken off our hands and entertained with lots of activities. This enabled us to focus fully on the presentations. One of the presentations about new trials and treatments focussed on the 14.18 antibody therapy so this was of particular interest to us!! We also learned this week form the NB conference in Denmark that there is now a lot more  talk about the treatment that Jamie is receiving. This is brilliant news and we really hope that one day soon, families can access this in Europe. Whilst we have good days out here and we try to make the best of our situation, it is a long time to be away from family and friends and without that support. Hey, we are getting towards the end now!!!!

We all found the Symposium interesting and enjoyable and Jamie and Poppy had  a wonderful day! Thank you to ALSF!

The following day, Sunday, we had been invited by Tina [Travis Manion Foundation] to the church that she attends as there was a concert and lunch afterwards. We were late in arriving as Jamie was being really difficult with his medicine and pushing us to the edge!! We saw the last 10 minutes of the concert, all about Hope and met and heard other families talk of their difficulties with serious childhood illnesses.

Most recently....

We have just celebrated Independence Day here with a jam packed weekend. We are aware that our time here is getting closer to the end so we want Jamie to experience as much as possible whilst he is well enough! On Friday evening, Jamie and I made Independence day cakes!

The end product!!!!!

Lindy and his family, who helped us when we first arrived, came over for a bar b que and it was great to catch up with them. They have had such an interesting life and it's always nice to hear their stories. They are so kind and their children are lovely.

So 4th July we met up with John's cousin and her husband. We all drove into the Country and they took us out for lunch. We are in the middle of a heatwave so it really was too hot!!! At one point it was 104 F!! The air conditioned restaurant was a huge relief! We travelled to a National park where their daughter was at camp, hoping to be able to meet her. Unfortunately we were just a bit late as the park was closed and help was limited from the Park Ranger!! We hope to go and visit before we leave so that their children can meet their extended family!! We saw some beautiful scenery and arrived back late at night and ended our day with a firework display in the garden. Poppy was transfixed by the sights and sounds and Jamie well, he's getting better. Those of you who have been with us to the JHQ firework display know that we end up coming home after 5 mins!!!!!

Jamie meets Spiderman Artist!

Yesterday, Tina, who helped us get furniture for the house, invited us to her house. Her house was gorgeous, set in 3 acres of land in the middle of the countryside. A pool and shooting range completed the house!! She called the night before and told me that she had arranged for us to visit some people that she knows that live 10 mins from her. Scott Hanna is the Inker for Marvel Comics who works on Spiderman, Iron Man and The Incredible Hulk!! Tina knew that Jamie is currently a fan of Spiderman and made a call for it to happen so that he could meet Scott and see his studio and do some drawing with him!!!!!!!! His wife [very nice lady] is also a fashion designer, well known in this area and has appeared on TV doing makeovers and has also taken part in Project Runway! They made us so welcome and we were there for over an hour and a half!

Jamie and Scott got down to business and both produced their own version of Spiderman. Bid for the best!!! We have some lovely memories to cherish of this visit and we have been given permission to share our photos with you all. They really were easy going and interesting to talk with. The artistic flair is an Inglis trait and Scott can see that Jamie already shows natural talent!

Jamie drew this eye shape by listening to Scott and copying his shape!

A huge thank you to Scott, his wife and to Tina who made this happen!!

Tina cooked us a wonderful meal and Jamie had a great day, meeting Scott Hanna and playing with Tina's children.

Back to reality now as tomorrow Jamie is admitted for cycle 4 out of 5 antibodies. This cycle is in 2 parts and is a repeat of the difficult cycle 2 where he ended up in Intensive Care. The first part is non eventful, it's when the IL2 and ch14.18 are combined that children experience the worst side effects. This combination starts a week Weds and tomorrow he is admitted for 4 days of IL2 on it's own.

We are bracing ourselves for a worrying time over the next 10 -12 days but Jamie is in very safe hands and we have complete confidence that any situation will be managed quickly and successfully. However, we won't be able to breathe properly until this cycle is over. Keep all of those positive vibes coming our way please as this is the most difficult part for Jamie. Once this cycle is over we are on the race to the finishing line!!!!!!!!!!!!!


Thank you for reading!!!
Love from us all in Philli!!

Cycle 3 of Antibody Treatment [ch14.18]

Wow! Cycle 3 is over and this blog might be quite short because there is nothing to say other than, Jamie coped so well, the best one yet...no pain, no cough...nothing!!!!!!!! In between his Benadryl sleeps he would be up and about playing. We still can't believe it!!! Only 2 more rounds to go! He just amazes us, seriously!

So here is a little review of our week!!

Admission on Wednesday went smoothly, no lengthy waits for a room and blood counts were good. Jamie was charming everyone as per usual, telling everyone that he loved them! All the staff laughed when he hugged me tightly and said "I love you so much mummy that I could gobble you up!!"

We spoke with the Psychologist about the workshop for Challenging Behaviour and it had to be postponed because only 2 families had come forward for it! We are hoping it will start next week. 

Our room this time was a little on the small side and in a different wing of the unit, a bit isolated really but to cheer ourselves up we set about the familiar task of making the room our own. Each admission we do slightly different things and this time round Jamie really wanted 'Spiderman' included. We tried with our limited resources!

Here we are having just arrived in the room - we need a makeover!

The flowers were returned to us from the

'Wishing Garden from the ALSF event

Even his door gets a makeover!

Treatment started and we were so nervous but the only issue Jamie had on the first day was an  increased heart rate. The Doctor was a little concerned but as Jamie was just an hour away from finishing the infusion, they just kept a watchful eye over him.

So that was it, the next 3 days were uneventful! Jamie got on with the job in hand and slept when he needed to, played when he needed to and eventually pooed when he needed to [days of being a bit stuck up there required his magic drops which loosen things very quickly!!]

The following set of photos show the remarkable Jamie playing whilst having antibodies going in!!!

                                             

                                                       

Decorating himself with a dry wipe pen. Came off very easily!!

Jamie also wanted to make a Spiderman mask, so here he is with Brittany, his Child Life Specialist. She is so lovely and is so good with Jamie and Poppy...

Just chillin!

The next few weeks are very hectic with hospital appointments with the dreaded disease re evaluation. This means that Jamie is at the mid point and will have all the scans done again to see if the cancer has come back. This will never get any easier and each time it is an anxious wait for results.

On Saturday we are attending a Childhood Cancer Symposium in Philadelphia which has been organised by Alex's Lemonade Stand. Lots of different sessions about dealing with cancer, survivorship and issues with this, nutrition and new treatments and trials.

Granny Inglis flies out from Scotland today. It's been a tough year for her too with other family events - not just Jamie's illness, so it will be lovely for her to see Jamie and Poppy and enjoy the hot weather!

2 weeks ago, Maj Lacey,  based at the Naval Station in Willow Grove, helped us in acquiring a mattress for the spare bedroom and some small pieces of furniture to finish furnishing the guest room. The Mess had a collection for us and also presented us with 2 gift cards to be used in the grocery stores! It was very unexpected and very kind...thank you!

Poppy is doing well, crawling and moving in every fashion possible but we just don't understand this crawling forwards business and so she gets herself stuck in the most awkward places! One of the children in the RM House who also has NB really likes Poppy's name and has called her the 'flower baby!' This has reminded me of our friend's daughter [the family we went to the theme park with] who on that day said to me "Miss Vicky [sooooo polite!] Poppy's eyes are like blueberries!"   Beautiful!!

Here is our flower baby with eyes like blueberries

Goodnight!

XXXX