Mission Complete...nearly!!!

Firstly, I need to correct a statement from the previous entry where I talked about the treatment being offered in Germany. A very well sourced friend in the same situation as us kindly brought it to my attention that the treatment in Germany is NOT the same as here in the USA. Currently the German trial is without GMCSF and with lower doses of IL2. The trouble with our NB world is that things are happening all the time. I guess you always want to hear the best news so I think I had convinced myself that this was beginning in Germany now. It is beginning but can not be compared to the study here in the States.

This entry is going to be jam packed as we near the end of our stay here :(   but   :)!

So the end of cycle 4 could not come soon enough for Jamie and for us. We could not relax at all whilst the infusion was running but somebody out there is looking after us as Jamie made it through! The staff really are brilliant and know what to look out for. They even let us read through their training protocol for the treatment that Jamie is having. Funny that as I was reading through and it was highlighting possible side effects and what to look out for, I was thinking "yes, we've had that, seen that and can mentally monitor and evaluate Jamie's effects!"

On the day of discharge we had so much waiting around. I had checked out of the RMHouse and arrived at the hospital by midday, hoping for a quick getaway back to Warminster,PA. O'h how wrong was I to be!! Jamie's blood levels and other counts were giving some concern so blood was ordered ready for another transfusion. This arrived about 2 hours later and was to take 3 - 4 hours to administer. After which, more blood was then tested for electrolytes and creatnin. We waited ages for these results and finally left the hospital at 7.45pm!!

Jamie was so tired and fed up after this round of treatment. The photo below sums it all up!

Relief that this one was over but exhausted from the strain




Jamie spent the next few days recovering although he had to go back to CHOP 2 days later for clinic. A few of the levels were a bit low but everything was good to start the Accutane!! Great!! The break from this medication seems to be over so quickly each time but I have to say, it is no way near as bad as the initial cycle! Jamie is happy for us to squirt the liquid out and for him to take it on a spoon. This is so much easier and quicker!! We are not supposed to do it this way but lots of people do! Interesting that today we saw a piece on TV about Accutane being linked to IBS! Jamie has no end of problems with his bowel so was rather alarmed by this. However, as fellow parents in this onco world know, you treat one thing and then this causes something else which needs treating, this then causes another side effect and so the cycle continues. The drug companies must be laughing at us because they know that chemotherapy and other meds needed create further problems with more drugs needed. This is really cynical of me and it's only now that as Jamie is nearing the end of treatment I have come to appreciate that it is not the end. Jamie will probably have effects from this for the rest of his life. We are in the process of getting a road map done of all the follow up and tests that are going to be needed as he grows up. For example, jokes aside, I know that John and I are not exactly the tallest of people but Jamie has not grown at all in the last 12 months. We are now talking about growth hormone injections but there are probably side effects from this too!! The issues of survivorship have been locked away as to be honest, we were a bit scared to talk about surviving, especially during the early months post diagnosis.

Jamie has put up such a huge fight with Neuroblastoma that he will face other obstacles from this in the same way. Just not sure whether we have any reserve left to do so!!!!

What treatment do we have left for Jamie?

1 more round of ch14.18 [antibody] therapy
GMCSF injections [I have to do these, yuk! Piercing your own child's skin is something I will never get used to!]
Oral meds ~ Accutane which will finish mid September
Bactrim [not sure for how much longer]

We will come back to Philadelphia at the end of September for the final scans!
Disease re-evaluation [MIBG scan, CT scan and bone marrow aspirates]
 

This means, having confirmed with CHOP this week, we will all be flying back to Germany middle of August!!!! We also found out today that an MOD organisation donated €10,000 to Jamie's appeal!!! It is so easy for people to think that we should stop fundraising as Jamie has almost had the treatment. I wish this could be the case but Neuroblastoma is unpredictable and aggressive. There is no way of telling whether the antibody therapy has been a success. Time is the only way that we can tell. The longer Jamie stays disease free, the better the outcome. IF this thing ever came back, we would be on that plane,  back to CHOP within hours. That's why we are so grateful for this huge boost to Jamie's Appeal. I haven't named the organisation as they may want to remain anonymous! We have also said that should there come a time when the funds are no longer needed, then other NB families will benefit.

So, our lives never stand still and in amongst all of this, we have found out that the Army are posting John back to the UK. We have lived in Germany for 7 1/2  years and both children were born in Viersen Krankenhaus so it will be very poignant to be leaving this country.

The best bit??? We are moving back to York!!! We can't believe that we are moving back to the city we left in 2003 and that this city have been at the heart of all our fundraising in the UK!! The people of York are still following Jamie's progress and we have tried where possible to stay in tough with the local radio station, Minster FM. We could be back in York by the end of October. Having lived away from the UK for this length of time, we are excited about moving back. We already have a date with Mr. Asda and Betty's - Yorkshires finest tea room! Get the kettle on Betty, we're coming for a brew!!!




As with all Army wives, I will be giving up my job and having to start all over again but for the time being, my priority is Jamie. He won't be able to start school until after Christmas so I can't look fo anything full time until Jamie is ready!

We are now trying to cram in as much as we can before we leave. It's our 11th wedding anniversary tomorrow and so we are all going away for the weekend to Lancaster - Amish Country. Well that's if Jamie is ok [Jamie and John have had to do an emergency visit to CHOP tonight as Jamie has an ear infection. Who knows what time they will be back!]

We have heard that this part of Pensylvania is beautiful. We are hoping for Jamie to get a ride on a horse and cart!!

There seem to have been a lot of first's to celebrate over the past week. Poppy's 1st haircut and 1st Birthday and Jamie's 1st visit to a pottery studio.


The following pics are of Poppy at the hairdressers!

The end product!!!

We had a wonderful celebration for Poppy's 1st birthday but it was a shame that we weren't with any of our families. My parents Skyped on the morning so that they could see the birthday girl!! I have never had so much fun preparing for a birthday. It could be something to do with the fact that I am still a little girl at heart!!!! Anyway, Jamie helped with the mixing of the cake and I was so proud of how Poppy's birthday cake turned out! I truly do not bake, I like to be creative but I usually get the cake part bit wrong. Thankfully it all worked out and tasted delicious [lemon cake and lemon icing].

Someone thought it was a teapot but as you can see it's a handbag and a purse!!

Both Poppy and Jamie had a lot of fun. This year has gone by so quickly but Poppy really is the most gorgeous, happy little girl and we all love her!! Saskia, you were so great coming round when I went into labour although I think you thought I wasn't going to make it to the hospital!!! Whilst you were trying to sleep, John kept calling you to keep you updated!!!!

Our beautiful 1 year old! She will hate me for this when she is older!!! 

She truly adores dolls, so she was easy to buy for! I think she liked it!!

We took the children to Sesame Place for Poppy's birthday, here she is enjoying her lunch. It was so hot, 104 degrees F, and there was no shade so after queing for 2 rides we called it a day. We had only been there for just over an hour!! We got in free with our mil ID so we didn't feel so bad about leaving early!

Cooling down and getting ready for the birthday cake!!!

Big brother to the rescue!

Ahhh!!

Where's my cake???

Now you see it...

     ...Now you don't!!!! She loved it!!!

Yay, full of additives and energy!!!!

Our friends from the Travis Manion Foundation [Tina and Geoff] invited us over again to their house so that the men could shoot and the ladies made jewellery! We had a lovely time with them [as usual!!] and they also had a cake to celebrate Poppy's birthday alongside gifts for both Jamie and Poppy. Tina has done so much for us and has helped us form some wonderful memories of Pensylvania!

Happy Birthday Poppy!!

Tina also had another surprise for us for the following week. She had organised for us to go to a ceramic studio where the children could make their own tiles. The Travis Manion Foundation have been involved with Katia Tile Company as they together, with their local community, built a memorial called 'Freedom Square.' This is primarily in honour of Janet's son,Travis but is a place where all cann reflect on fallen heroes. Lots of children have been involved in creating a star for the memorial and John and I made one too at the workshop with the statement "There is always HOPE." We also had the pleasure of meeting Janet, whose family have set the Foundation up and have helped us enormously. We know that so many people have helped us throughout Jamie's appeal and sadly we know that we won't meet everybody so it's always nice when we do get the chance!!!!

Poppy did her own hand and foot print and Jamie did a hand print. Here are the photo's and we should be bringing the tiles home with us!!!

Here is Tina, holding Poppy!

Poppy's turn!

Jamie's handprints!

Learning a few tricks with clay and water!!

A few more tricks as influenced by Daddy!!

After our fun in the workshop [another real life experience for Jamie!!] we went to Freedom Square and saw all of their work!!

This seems to be an entry of pictures but sometimes that is all that's needed, especially when you see Jamie's infamous smile. We have another week or so until we are back in CHOP for the pre admission checks, ready for the final round!!!!!!!!

I will update before we go in for treatment as no doubt there will be much to share with you all!!

A Special Message for my mum in Oxfordshire....

On 7th August my mum will be celebrating her 60th Birthday!! We hope she has a wonderful day and we will have some extra celebrations when we next see you! HAPPY BIRTHDAY!!!

Another birthday coming up is Jamie's!!! Jamie will be 5 on the 17th August, the day after he completes his inpatient stay!!!!!!!! He is so excited!!!! He wants a Spiderman cake which is really testing my creativity!!!! Wish me luck!!

Bye for now and thank you as always for reading!!!

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