Congratulations, you have successfully completed the Proton level. Are you ready to enter the next level?
Since Jessica got diagnosed, it feels like each day is another level completed in a computer game. We have jumped over obstacles, gained extra time, held our breath in anticipation and dodged this tumour. We will not be beaten. Now that Jessica’s Proton therapy is complete it’s now to the next level which could be the toughest yet… to wait.
If you have been following my blog, you will recall me writing about the eye test Jessica had before her treatment begun. Ben and I were so happy with the news that she had pretty much perfect vision (well, as far as they could tell in someone Jessica’s age). We had a follow up eye appointment last week and the news was not as great.
Since Proton started, we’ve noticed that Jessica has started bumping into large objects and that one pupil sometimes seems bigger than the other, so deep down we knew something had changed in her vision capability. Like us, the eye doctor also noticed these changes and added that her new habit of tilting her head slightly was possibly down to something wrong with her eyes.
The doctor thought it would be best to dilate her pupils to see what was going on at the back of those big brown eyes. To the doctor’s amazement, her optic nerves looked a picture of health. This baffled all the doctors along with us. The fact that she is bumping into things could be down to tiredness. She picks up the smallest bits of fluff of the floor and doesn’t miss a trick so surely her sight can’t be that bad, can it?
The tilting of the head could be a little quirk she has developed and the difference in size of her pupils could be a minor reaction to the radiation. I could be wishfully thinking again, but the doctors have told us to keep a close eye on her (no pun intended). It could be the start of her vision problems. Or, it could just be an unsolved reaction, which in time will pass. Let’s hope it’s the latter.
So today was Jessica’s last day. Typically, the machine had to go down so we were slightly delayed, but boy did the whole of Proton make a fuss of Jessica Rose. We had banners, cakes, and pictures, well-wishers and lots of lovely gifts. I think I can safely say she is going to be truly missed and to be fair we are going to miss the Proton team to. They have all been brilliant and part of our cure. We could never thank them enough.
With Proton now completed, it just leaves one more thing to do. To get our slightly bigger arses back home where we belong. I’m super excited to get back home and see all you guys. I’m so looking forward to seeing Jessica’s face when she gets reunited with all her little buddies. She has really missed her friends and I can tell she is getting a little homesick.
Despite the tragic reasons for our visit to the States we have enjoyed our stay here and fallen in love with America. Here are my top 10 things I’m going to miss.
- The friendliness of complete strangers
- Target (you won’t be surprised to know that this is a store)
- Buttermilk pancakes for breakfast
- Drive thru banks/cash machines
- The cost of fuel and everything else for that matter. It’s so cheap out here.
- Peanut butter ice cream
- Nice weather pretty much 99 per cent of the time
- America style pedicures
- American magazines
- All our American buddies, we are going to miss you guys.
This last part of my blog I would like to donate to all my friends and family who have helped us through this rough time. Together you have held our hands through the bad, jumped with us at the good, helped us raise money beyond our expectations, listened to us when we’ve wanted to talk or changed the subject when we didn’t.
I would like to thank those of you who helped with all our fundraising. We have had curry nights, auctions, cup cake sales, 10k runners, family fun days, and live music, quiz nights, pool parties, and random and extremely kind donations. This money ensured that the three of us could stay together as a family and made this trip a little less stressful. It will also play an important part in Jessica’s rehabilitation and ensure she doesn’t have to struggle her way through life. Simple things in life could be a struggle for Jessica if she doesn’t get the special help needed. Thank you so much, your kindness will stay in our hearts forever.
Now this is the part where you may want to get your sick buckets at the ready. I would be lying to you all if I said that Ben and I had got through this trip without the odd argument. Yes, we’ve argued at times. I mean, what couple wouldn’t? We have spent nearly 10 weeks together living in each other’s pockets and I can count the number of arguments we have had on one hand (pretty good, huh?).
Ben – despite the fact you have a tendency of being a bit grumpy from time to time, you have been a real gem on this trip. You’ve put so much energy into ensuring that Jessica and I are OK, that I’ve often wondered who is taking care of you? You have shown amazing strength and made Jessica truly proud.
You were there for me when I was seriously falling apart (around week seven) and made me realise what is important when I got lost in my thoughts. You took on the task of taking our daughter down to be put under anasetic every single morning for 10 weeks. I could not have done this. During our little trip I have enjoyed getting to know you even more, Ben. There is so much more I have learnt, but the main thing that sticks out in my mind is what a brilliant dad you are. You love our little girl more than anything in the world and it truly does show. From Jessi (this is not a typo, btw, ‘Jessi’ is a new spelling!) and I… THANK YOU!
Jess only has five more treatment sessions left. We can all now finally see the light at the end of that tunnel. Well, kind of…
Week eight has been very chilled for us all. The weather has been rubbish so we have just chilled out in our apartment and hung out with some of our wonderful American buddies. Oh, and tried to catch up on some SLEEP!
After weeks on end of very little sleep and trying every trick in the book, Dr Danny feels Jess has quite possibly developed a sleep disorder. This is due to her tumour pressing on the ‘sleep’ part of her brain. Jess’ doctors back home in Oxford are going to have to investigate this when we get home. I guess it’s just another condition we are going to have to deal with. Not a biggie in the grand scheme of things, but Mr Sleep how I miss you.
Despite her non-sleeping and the thick black circles under her beautiful big brown eyes, Jess is still doing well and amazes us every single day. We had yet more fantastic news from her weekly MRI last week. The tumour has remained the same size again. Like I’ve said in my previous blog, we will take no growth every day of the week. You go girl!
Jess had an extra special treat when she woke up on Sunday morning. The arrival of Nana Chris! Jess was just as excited to see her other Nana. She is so blessed to have fantastic grandparents. They spoil her rotten with love. I think Jess and Nana had missed their long walks together as Nana Chris was straight out taking Jess on a little adventure.
I had a treat of my own Monday evening. My whole family got together for a Skype call. It was so nice to see and chat to everybody. Mum, Dad, Gareth, Scott, Danielle and Hannah. They are all such jokers and managed to put a massive smile on my face for the rest of the evening. Thank you guys, I love and miss you all so much. We have had our ups and downs but I love you all so much. You have been such a tremendous support through all of this. I will NEVER be able to thank you enough.
The whole feel of Proton has changed this week as two of Jess’ buddies have finished up. We are so happy for the families as this part of their ‘cure’ is now over. However, we are sad as we are going to miss them all bunches. I ask you to say a little prayer for these two precious boys.
Cruise – After nearly a year’s worth of Chemo and two months of Proton, Cruise has ‘only’ a few more weeks left of hard core Chemo before the gruelling waiting game begins to see if treatment has worked.
You can poison me but you will never keep me down – Cruise Verdecchia
Cruise is two this month and such a smart, brave little solider. You go Cruise! (He seriously said that quote.)
Tucker – We have spent a lot of time with Tucker and his family. He and Jess could play for hours. I asked Tucker this week if he could marry Jess when he gets older and he replied in the most sweetest South Carolina voice “sure”. With every single word he says my heart just melts. He is adorable. Tucker, Carley and Tyler are simply awesome. (I sound more and more like an American each day.)
I wish I could say that Tucker is through with his treatment now that Proton in finished. However, he has a long journey ahead of him with a year’s worth of Chemo to tackle when he gets home. I ask you to pray for him and his wonderful family to get them through this tough time. They have so much faith and I admire them for this, God bless you Tucker.
I’ve never cried as much in my life as I have done since the moment Jess got diagnosed and I’ve aged by at least 10 years. You never expect to be told that your kid has a brain tumour and I struggle to understand why this has to happen to my beautiful baby every single day. On our journey we have met so many inspirational families who I would now class as our friends. I thank God every morning that we do not live in the shadow of cancer, as it would seem most of the children here do. Talking to these families makes me realise just how lucky I am.
I’m hopeful that this treatment will work on our little girl but only time will tell. I can now see the light at the end of that very long tunnel but the battle will never be over for Jess with an agonising MRI every couple of months.
However, I’m hopeful that we have found our cure.
Firstly, I would like to apologise for the delay of my weekly blog. It has been a very hectic week, as you will read below.
Another week has been crossed off and Jess’ star chart at Proton is filling up. Our little girlie is half way there. What a great way to celebrate the half way mark with the arrival of Nanny and Pops.
During the run up to my parent’s arrival, I couldn’t help wondering if Jess would actually remember who Nanny and Pops were. We have been doing regular calls using Skype with all the Grandparents, but it did get me thinking that after six weeks of not actually seeing them in the flesh, would she have forgotten them?
All my doubts quickly faded away as soon as I saw the look on Jess’ face when she clapped eyes on Pops at the airport. Her little arms and legs started flapping with excitement. Jess was desperately trying to undo the safety belt on her stroller in an attempt to get to him quicker. After greeting Pops we then found Nanny. Jess was just as excited to see her Nanny. She was giggling, pointing and shouting ‘Nana, Nana’.
Sometimes I really don’t give Jessica enough credit. Of course she would have remembered them. She’s not a bleeding goldfish. Come to think of it, she is actually quite a clever little thing despite all the set backs she has had in her little life. She must take after her Daddy, as I have to say, I’m not the brightest flower in the bunch, unlike Jess who most certainly is and in more ways than one too.
With each general anaesthetic she has, every doctor examination she goes through, every MRI she has to encounter and every single does of Proton beam her brain takes, I become more and more proud of her. She is so brave and a true inspiration. Yes, we have the odd spout of tears, but she really does just get on with it. Nothing seems to faze her. Nine times out of ten there will be a smile that brightens up the dullest day. Even if she does get upset when a nurse takes her blood pressure, it quickly becomes a thing of a past. Well, at least until the next morning when we have to go through it all again.
I’ve found myself thinking a lot this week about what a normal life would feel like yet I can’t seem to remember. Before Jess got sick I couldn’t believe what stupid, unimportant stuff I used to worry about. What I wouldn’t give to just have to worry about what colour to paint the bathroom. To get depressed because I can’t afford this season’s must haves. Be in a mood because I’ve missed Monday’s Eastenders. Swear at the TV because Strictly Come Dancing clashed with X-Factor. Boy, I had it good back then. Now, my days are spent worrying whether or not the next MRI will bring good or bad news. Can I have my old life back please? I’ve learnt my lesson now.
If I ever had to give anybody any advice I would say please don’t spend your days worrying about the unimportant stuff in life. Appreciate what you have. Don’t worry about what you haven’t got and enjoy every single second with your kids.
Learn from yesterday, live for today, hope for tomorrow – Albert Einstein
Week six was a good week for Jess as we had the results back from her second MRI since treatment started. It showed that her tumour had stayed at the same size as week five. This was brilliant news. In an ideal world we would have loved them to have said that it had shrunk slightly but we will take no growth any day of the week. Well-done Jessie! She had a bit of a meltdown last Monday but once she got it out of her system she was back to her happy little self again. A massive improvement on week five. Her sleeping leaves a lot to be desired, so sleep deprivation has kicked in for Ben and I. You should see the size of our morning coffees and I’m not even a coffee person.
It has been great having my parents about to help and they have really enjoyed spending time with their precious granddaughter (and daughter and son-in-law). It has been a rollercoaster of emotions this week for me. I’m so happy to see them, but yet at the same time, so sad. Them coming out has made me a bit home sick and made me realise what I’m missing back home. It’s going to be hard to say goodbye to them again. At least we only have a few weeks left until we see them again. I can’t tell you how much I’m missing all my family and friends back home. It is going to be so nice to see you all again.
Week seven was struggle at the RMH. Even though we were and still are extremely grateful for what all the house/staff/volunteers have done for us during these past seven weeks, I got to the point where I felt that we all needed our own space.
It didn’t help matters when we heard that a few people had complained about Jess crying in the middle of the night. This really pissed us off. So we packed up our things and moved into a lovely two-bedroom, two-bathroom apartment complete with a pool and a gym! All courtesy of the NHS. I’m very proud of us all for doing seven weeks at the RMH, as I’m sure a lot of people wouldn’t be able to handle it, but now we are on the home straight, we just want to have a bit of family/private time and act like a normal family – whatever that is – again.
Things such as being able to eat when and where we want to eat, sleep when we want to sleep and for Jess to make as much noise as she bloody well likes. She is a 19mth old receiving radiation to her brain ever day for God’s sake. I think she is entitled to have a cry every now and then. Don’t you?
We are so blessed to have this apartment but we will miss our dear friends Carley, Tyler and Tucker. These guys only have a week and a bit left and then they are off to be reunited with South Carolina and all their amazing family and friends. We are still going to hang out with them for the next week or so. Y’all didn’t think you could get rid of us that easy did you? Their little boy Tucker is such a treasure and doing so well. We are going to miss his sweet little American accent. Brightens up my mornings when I hear him say apple juice…so cute!
We all enjoyed last weekend with Nanny and Pops (even if it did make me a little homesick). The RMH held there 11th annual family festival that was kicked started by a 5K run at 8am. I’m proud to say that Ben and I did partake in this and were left blown away by the number of people who were taking part. There must have been over a thousand runners! Ben crossed the finish line in 36mins and I followed closely behind him in 38mins. Not bad considering we were running in 80 degrees heat (yes, 80 degrees at 8am). Mental note to ones self… do more pelvic floor exercises!
After the run, Jess then took part in the ‘tot around the block’ and received her first ever medal. So sweet. It made her Pops cry and it was a very proud moment for all of us! The RMH then laid on a few activities for the kids and a large buffet for the runners. I found the buffet a little strange as it consisted off pizza, cookies, cans of full fat Coke and slabs of chocolate cake. I mean this was at 8.30am!
However, I did find myself tucking into a few cookies. What? My sugar levels where low, what can I say? Pop’s enjoyed his first ever American cookie and it definitely didn’t turn out to be his last. Dad took to American food like a duck-to-water, much to Mum’s disgust. Mum on the other hand is struggling a bit being the size zero she is (why-oh-why couldn’t I have her genes).
So with week seven nearly in the bag we are on our family count down to coming home. It looks like Jess is going to finish Proton around October 17th so fingers crossed our flights home will be brought forward by a week.
Looking forward to seeing y’all soon!
So week five has been and gone and what a week we’ve had. Reality has really hit home now and with each dose of Proton every day gets harder and harder. Can we come home now please?
It’s been a tough week. Jess has been getting more irritable, suffering from morning sickness and she has decided to go on a sleeping strike. The irritability and the non-sleeping has been tough on all of us and the sickness was a massive worry for Ben and I. Morning sickness was one of the very first symptoms that Jess presented back in March, so you can understand why Ben and I were very anxious about it all.
Her weekly MRI showed that the tumour had grown 5mm since July. This could be the reason why she’s had the morning sickness, or it could be down to the radiation. Who knows? It all seems to be guess work with Jess at the moment as we also think she is teething (give the girl a break). The doctors here are keeping a close eye on her and if her MRI next week shows that the tumour has grown even more they may yet decide to operate to get it back down to a more manageable size. Alternatively they may just decide to adjust her treatment plan to ensure that the radiation covers a larger area.
I was really hoping the tumour wouldn’t grow any more. However, this is typical behaviour of a craniopharyngioma. I mean, come on Sam, did you really think things would actually run smoothly for Jessica? What a silly question. The news of the extra growth did not come as a surprise; I guess it was just wishful thinking. I seem to be doing a lot of that.
Daily general anaesthetics are taking their toll on the little lady and I think this maybe why she is becoming more irritable and not sleeping great. Poor little love doesn’t know if she is coming or going. I hate to see her go through this each day, only 21 more Proton days to go.
On a happier note, we have got to know some great guys this week, mainly fellow kids and parents at the Proton clinic. It’s so nice to chat to people that are actually going through the same thing. Most parents talk about their kid’s cold, whereas we find ourselves asking each other about types of tumours…
We really do support each other through the good and the bad. I’m sure we will stay in close contact with these guys. We have Carly and Tyler with their brave little solider Tucker (yes, what a cool name). Alan with is beautiful little girlie Alicia. I’ve never seen a girl laugh, smile and giggle as much as Alicia. I’m taking her dancing in a few weeks. I cannot wait. Nicky with her brave little man Kieran and what a tough cookie Kieran is. I’m hoping to have a girlie night out with Nicky in a few weeks time. Whoop Whoop! Kane with his lad James. That boy is going to go far with all his ambitions. Finally, Jo with her brave little boy Luke. There is NO stopping Luke, he is 100mph!
I ask you to keep all the people I have listed above in your thoughts and prayers. These people have been my inspiration this week. What each and every one of them have been through is truly amazing. I doubt any of them will get to read my blog, but I just want to say how much I admire you all. Together we can beat this!
Like last week, we haven’t really done much outside of Jessica’s treatment and appointments. However, we have a busy weekend ahead. We are heading to Amelia Island’s Jazz festival on Sunday. Then after a day filled with Jazz we are taking Jess to a play date with a little boy called Cruises. Their house is right on the beach. Cruise is a little boy who is also having Proton treatment. While Jess and Cruise play, the plan is for Ben and I to have a nice glass of wine or two with his parents ( Drew and Jennifer). They also seem like really nice people.
Next week Nanny and Pops are coming to visit… YAY! Mum and Dad are very excited to be coming out to see us all. They are even more excited about seeing Jessica. Isn’t it funny how your parents seem to love your kids more? I can’t blame them though, Jess is rather loveable. I’m also looking forward to seeing them being the home bird that I am. Missing you Ma and Pa!
FYI – Got my tattoo done on Friday. Let’s hope it brings us a bit of good luck. After all, that is what the Hand of Fatima is a symbol for. Good luck, good health and strength. Boy do we need a bit of three at the moment.
We have a new addition to the Duggan/Ward household – Sandy the dog! We arrived at Proton on our third day and one of the prostate cancer patients – who we had never met – had left a parcel for Jessica at the main reception. We opened it and out popped the biggest pink snugly dog.
At this point I would like to point out that Sandy is not an actual real dog but a toy one. Although, there is a notice at Proton saying that any unattended kids will get an espresso and a free puppy. That did make Ben and I chuckle.
Anyway, after receiving this kind gesture, we were left wondering who had left such a lovely gift and how very sweet of them it was! I was then left with the task of naming our new addition. As most of you know, we have some weird and wonderful names for all of Jessica’s toys.
Most of you would have met Rita by now. Jessica’s faithful friend who comes everywhere with us. So, I came up with the name Sandy. I don’t know why, but the name just popped into my head. The next day we actually met the lady who left Sandy for Jess and guess what her name is? Yep, Sandy… Must be the witchy side of me coming out again.
So that’s our first week of Proton done and dusted, only five more weeks to go. I think Jess is getting into the swing of it now and so are we. The first day was horrible, both Ben and I were having last minute doubts. Were we doing the right thing? It’s so easy to slip into panic mode when you have a sick child, but when we think about it, we don’t really have a lot of choice in the matter.
On our first day of Proton, Dr. Danny went through the risks and her treatment plan in much more detail. Jess’ tumour has re-grown to quite a substantial size, so the dose of radiation to her brain is pretty big. The beams are entering her head in three places; the top, the left and the right side. In these spots she will loose her hair, meaning she will have a funky mullet going on. The good news is that we have been told her hair will grow back fully.
He then went into the serious stuff. Jess’ pituitary gland will completely die off in due course, this we knew about. It will take a few months to happen so her team back home will monitor her and add further drugs as and when Jess needs them.
Her IQ level will be affected. They can’t say how or when but they have said that it will definitely be affected. Ben and I will keep on top of this and ensure she has all the help she needs. After all, this is where all the fundraising money will come into great use.
Dr. Danny doesn’t seem concerned about her eyesight or hearing although there’s a five per cent chance this could be affected. They are keeping a very close eye on Jess throughout her treatment with MRI scans and various tests on a weekly basis.
It is going to take up to a year before Proton will start working its magic on the tumour. We are all praying that the tumour doesn’t cause any problems between now and then. It may swell slightly just as long as it doesn’t start interfering with other parts of her brain we are all good.
Best-case scenario out of this treatment is that the Proton ensures that the tumour stays the size it is now. Best, best-case scenario is that Proton shrinks it slightly. The chances of this treatment giving us these scenarios is between 75% -80%, which is fantastic. Go on Jess you can do it! Lets kick this tumour’s big hairy ugly arse!
We have met some lovely families at Proton this week, some of which aren’t staying at the Ronald McDonald House. We met a lovely family on Tuesday. Their little boy was receiving Proton to help shrink a cancerous brain tumour.
I cannot remember what type of tumour he has, all I know is it’s a very aggressive form. Sadly, they didn’t have a very good MRI on Tuesday so they had to stop Proton and go home. This news really affected me as the parents were so positive that this was going to cure their precious little boy.
I can’t even imagine what they must be feeling right now. It makes me actually feel quite lucky which is saying something. So sad. This place is just full of heartbreaking stories. The kids are so strong and it makes me so angry to think there’s so many kids out there who don’t give a crap yet live healthy lives.
I try not to think about it as it gets me so cross. They need to spend a day here to show them just how lucky they are. That goes for some parents too. While I’m ranting I’m disgusted to hear that our Prime Minister has postponed putting a Proton clinic in the UK. Not by just a few months, not even a few years, but six years! I thought our country wanted to try to cure cancer…. er, hello.
Has he not seen the results walking out of Proton clinics here in America? Proton has given families hope and children back their lives. I realise it costs a lot of money and I know the UK is struggling at the moment, but seriously it’s a place that will not just cure the young, but also the old. A place that brings hope and comfort. A place where you are given the chance to say goodbye to cancer for good. This really could be a place where dreams do come true. That shouldn’t have a price tag, it should be a given.
We haven’t had any real adventures this week. We went to a place called Amelia Island last Saturday. This was so pretty; I was, however, a little disappointed that I didn’t find any sharks teeth on the beach as it’s famous for the teeth being washed up on the sand. Jess enjoyed paddling in the sea. Ben did a bit of body boarding and I soaked up some rays. Ben may have soaked up a little too many rays. He is only just getting over his sunburn. Man he was red….OUCH!
We will most defiantly be going back there. I haven’t yet managed to get my tattoo. I have a consultation next Wednesday so watch this space. I’m still keeping up with my dance classes and Ben is enjoying his nights out watching the football with some of the Dads here. NFL season proper starts this week so Ben is very excited and so is the rest of Jacksonville. They take their American Football very seriously out here.
We visited a place called St Augustine yesterday (Saturday) where enjoyed American style breakfast, mooched around the mass of quaint little shops and then hit the beach. We were all having such a lovely time playing on the beach until there were a few shark sightings not far from where we were paddling. I think it was safe to say that we packed up and hit the road quicker than you can say JAWS!
We are really trying to make the very most of our weekends now that Jess has started her treatment. We are limited to what we can do during the week. Jess is pretty grumpy after her treatments and if she doesn’t take a nap in the afternoons all hell breaks lose.
All in all not there’s much to report this week, although I seem to have written an essay. I’m so touched to hear that so many of you are reading my blog (feeling a little under pressure now). My Aunty Kathy (well, I say Aunty, but she’s is my Dad’s cousin) sent me a lovely email saying that I could write a book. Thinking about it, Ben and I would have enough material to write a book on our experiences and to tell our story. It most defiantly helps me to write it all down, all my thoughts and feelings and I’m pretty sure it has helped Ben given that writing is his passion, well that and cricket.
I actually used to read and enjoy reading weepy stories. For example My Sisters Keeper by Jodi Picoult. It’s such a sad story yet I couldn’t put the book down. Does that make me a weird person to enjoy these types of stories? I enjoyed the book so much that I dragged Ben along to the cinema to watch it, not the best film suggestion I’ve had. At the time I was two months pregnant, little did I know that I would actual be living it one day.
“Life sometimes gets so bogged down in the details, you forget you are living it. There is always another appointment to be met, another bill to pay, another symptom presenting, another uneventful day to be notched onto the wooden wall. We have synchronized our watches, studied our calendars, existed in minutes, and completely forgotten to step back and see what we’ve accomplished.” Jodi Picoult (My Sisters Keeper)
With week three fast approaching I thought I better get blogging to all you folk back home. I really wouldn’t want you all getting withdrawal symptoms now would I? It must be bad enough without me being there in person as it is.
Anyhow, as most of you know, we took the little lady to the place where dreams come true… Disney! It was the best medicine yet and Jessica had a grand old time meeting her heroes Mickey and Minnie Mouse and spinning around in the teacups. She loved it and I’m really hoping that our dreams do come true or I’m asking for a refund!
As you drive up to the Park there is the biggest Disney sign with their famous slogan, “The place where dreams come true”. I instantly thought I really do hope so! The whole place is truly magical and Jess just got caught up in all the magic and had a wonderful time despite the very odd and extremely hot weather. We arrived in Orlando on Friday afternoon and spent the whole of Saturday and Sunday walking around four of the Disney parks.
Magical Kingdom – Jess met her hero Mickey, flew with Peter Pan and took a little boat around the ‘It’s a Small World’ ride.
Animal Kingdom – Jess went on her first Safari and met a gorilla, oh and watched the monkeys for hours.
Disney Hollywood Studios – Here Jess danced and sang along with all the Disney Junior characters. For those of you who have no idea what characters I’m talking about (those who probably don’t have kids) they are: Handy Manny, the Mickey Mouse Club House, Jake and the Never Land Pirates and Little Einsteins.
I have to say I wish I filmed her. I’ve never seen her so happy, she loved it and it was definitely the highlight of the whole weekend for Ben and I. So nice to see our little girl happy. We also got to meet Minnie. Jess was more impressed by Minnie than she was Mickey. Mickey did freak her out a little. I don’t blame her as there is something about these life size characters that freak me out, but that’s a different story.
Epcot – Jess got to go deep sea diving with Nemo and explore the underwater world.
The whole Disney experience was truly spectacular and just what the three of us needed.
To top off our magical long weekend on Monday we decided to go to Sea World for the day. Apart from their impressive roller coasters and the Shamu show, I have to say we were all a little disappointed. Then came along a phone call from the hospital that added further disappointment.
After enjoying a few relatively normal days, reality came along and slapped us around the face with big wet fish – which it probably picked up somewhere within Sea World. The hospital was phoning to notify us that Jess had a MRI scan the very next day! This was the first we heard about it, so early on Tuesday morning we made tracks back to Jacksonville (a little earlier than planned) to be greeted with blood tests and a big fat anaesthetist… Welcome back from your vacation Jessica!
Ben and I were a little panicked about this MRI as we really didn’t realise she needed one. The only phone call we were expecting from the hospital was the one to say that they are ready to start Jessica’s treatment. Another MRI… Really? The poor girl has had about 20 in her little life so far. Yet there are many more MRI and tests to come, I just hate seeing Jess having to go through all of this as it must be so scary for her. The one thing that keeps us going is the thought that she won’t actually remember any of this.
After numerous phone calls we were rest assured that the MRI was just routine and part of the construction of her treatment plan. On the upside though, Jessica had her baseline hearing and eye test on Wednesday and she passed with flying colours. Just praying to God that it remains like that, we have been told that radiation could damage both her hearing and eyesight. Going to keep everything crossed, as I would hate for Jess to loose her sight at such a young age.
We have spent the last couple of days since getting home from Orlando just chilling around the house and enjoying the time with Jessica. She is on such top form! She has learnt a few more words like ‘no’ and ‘tea’ and she has learnt a few more dance moves to Beyonce and Foster the People which are a new band she quite likes. Ben and I are keeping well and are enjoying the lovely Skype calls with all our family and friends plus all the lovely messages we are receiving from back home. It’s messages like these that are getting us through this experience. So please keep them coming. We love hearing from you all.
I started my new dance class this week in San Marco, which was really cool. Not as much attitude as I thought there would be. We danced to some really cool music and after three weeks of eating non-stop, it felt so good to do some exercise. I haven’t danced like that in years and used some muscles I forgot I even had, so I felt a little sore the next morning.
Ben went to watch another NFL game on Thursday night with the other Proton Dads. They had a Tailgate party before the game started. Being the sporting fanatic that he is, Ben really enjoyed himself. He is really getting into the American sport. It’s so important for Ben and I to have a little ‘me’ time otherwise I think we would most probably end up coming home on separate planes.
While Ben was at the NFL game Jess and I went to play BINGO! It was so much fun, it took me back to 1996, Woolacombe Bay in Devon with the Jeffs family. That was the best holiday ever and one I would like to relive again with all the gang plus all the new additions. I will never forget loosing my brand new Reebok classics in the sinking mud… ha-ha! Oh to be 11 again with not a single worry in the world, apart from what heart top I was going to get Mummy to buy me from Tammy Girl. Jess enjoyed her first ever game of bingo and won two prizes. So cute, before each game the bingo caller shouts “one, two, three let’s play bingo” and Jess would cheer along with her. We will be going again next week so I might see if I can film Jess doing this. So funny!!
We are going to hit the beaches this weekend. We may go to Amelia Island. It’s only a 45min drive from Jacksonville but it’s supposed to be really pretty. Apparently you can search for sharks’ teeth there. Very excited about this and I will let you know about our adventure next week in part four of my blog.
We found out today that Jessica’s treatment is going to start next Tuesday so we are going to get in as much sea and sand action in before Jessica’s treatment starts. During the week while Jess is having treatment, she won’t be able to do things like swim and hang out at the beach as her port will be accessed and by doing so it may cause infection. The news of her start date brought a mixture of emotions for me. I’m happy at the fact that we are going to try to zap this tumour once and for all, but sad at the thought of the side effects that Proton may have on Jess. This is where I need to remain positive. So please send those positive vibes across the ocean to me.
I’m also thinking about getting another tattoo next week. Thinking about getting the Hand of Fatima tattooed on my wrist. This symbol is supposed to protect you against the evil eye and represents blessing, power, health and strength (I might get my whole body tattooed with it). My last two tattoos were done in the States and seeing as everybody is tattooed-up out here, I figured it’s probably a safe bet getting another one down while I’m out here. I’ve been wanting to get one for ages but couldn’t decide what to get. I’ve always liked the symbol of the hand of Fatima and the meaning is pretty relative at the moment. I might just go for it (sorry Mum and Dad).
So that was week two in a nutshell for you all. I hope everyone back home is good and well. Sorry to hear about all the wet and cold weather you are having. If it’s any consolation, it’s way too hot out here and I’m thankful when it rains. Just goes to show we are never happy with the weather. One of those things we love to moan about.
Take care xx
Thank God for modern technology (iPad 2), the wonders of YouTube plus the help from the beautiful Beyonce. With all those three things combined you get a very chilled out and happy little Jess.
So the trio-op went well on Monday. We went down at 8.30am and after being faced with a very odd anaesthetist, lovely caring nurses and a rather religious volunteer, Jess was all set and ready for her op.
The anaesthetist scared the crap out of Ben and I. Really hard to explain, but all I can say is, she was hard work. I can’t put my finger on which part of the world she came from, but communication between us was not that great. This left Ben and I worried about leaving Jess in her hands. However, the nurses were so lovely and Jess was having a ball of a time. A volunteer called Dana was also floating around and with every given opportunity she had, she would come sit next to me and tell me about God’s plan.
See apparently, the way he sees it, is that I’m weak and he is teaching me how to be stronger. Not to sure what to make of God’s plan. Guess I’m open to all suggestions as to why this is happening to us. I’m not overly religious, but since Jess has been poorly I do like my little chats with the big man upstairs. Guess you can say I have faith. Not to sure I liked a stranger preaching to me just before Jess was due to go down for her operation and telling me how weak I am, when all I’m really trying to do is keep it together because at this point, the very odd anaesthetist is really starting to stress me out big time! I’m sure Dana was only trying to help though, she meant well and was really sweet. Reminded me of Denise van Outen actually.
Jess was in the operating theatre for two-and-a-bit-hours. Felt like a lifetime. All Ben and I wanted was to give her a cuddle. We jumped out of our seats when we saw her being wheeled back into her room. She looked so tiny now that her belly had gone and she felt so light. They must have drained A LOT of fluid. The markers in her head you can hardly see and her port was inserted successfully too.
Jess spent most of the day recovering watching Beyonce live at Glastonbury on the iPad. We have it recorded at home on the Sky Box; she must watch it about three times a day. Jess loves dancing along with Beyonce. I have to say, my girl has rhythm. Which is more than I can say for her daddy. So with the wonders of YouTube, Jess was able to watch it over here too. This has been a godsend. It chills Jess out and makes her seem to forget all her pain.
Jess was discharged the next day and we had to go straight to the Proton Clinic for her CT simulation. They had to sedate her again as she needed to keep real still, plus they needed to make her a bespoke mask whilst she was sleeping. The mask will be used with each Proton session to ensure her head stays still.
This took about 45mins. While Jess was down, it gave Ben and I a chance to meet the recovery team at Proton – Kendra and Gina. This is where Jess will be coming everyday for six weeks. They were both so lovely, extremely caring and sweet. It also gave us the chance to see what the system is at Proton. We got to see two kids coming round from their Proton treatment. Think it really hit home just how much it drains the kids. Once they hit that half way point they really do get the life sucked out of them and the redness we have seen on some of the kiddies looks so painful. We have been told it’s like sunburn from where the beams enter the body so we have stocked up on a lot of after sun.
On a positive note, the Proton Clinic is very relaxed and the whole team seem amazing. I think we are going to make good friends there. Oh, just in case you were wondering why Jess needed another scan, it’s so they can come up with a tailored treatment plan for her. So, all being well, we should start treatment in two weeks time!
With two weeks off… Orlando and Disney here we come! Assuming hurricane Irene doesn’t get in our way that is. After the extremely bad year we’ve had we now deserve a bit of good and with Jessica’s love of Mickey Mouse, I’m sure this will be a massive hit for her. She bloody deserves it!
Oh, another thing that’s happened this week, I tried meatloaf for the first time. Think my plans for becoming a veggie have now been put on hold. It was so good! I have, however, put myself on a burger, fries and bread strike.
My eating has now got out of control. I’ve given up smoking but seem to have now picked up a 20-a-day eating habit. Super size Sammy, but have no fear, I’ve found a dance trance group to join so I can burn off those extra few pounds (cough, cough) I have seemed to have gained since being here. Really don’t think that X-large slice of Reece’s Chocolate Cheesecake at the Cheesecake Factory today helped much. Oh well diet starts tomorrow… again!
The journey begins Stateside.
We made it! After months of waiting for our date for Proton we finally made it. Now Jessica’s journey really begins.
We had a really good flight. Jess was such an angel. Ben and I were dreading the flight with a 17 month old, but Jess proved us both wrong. She played with her toys, ate numerous bags of Fruit Flakes and then thought; ‘bugger this, I’m going to sleep’. She just laid down on the floor and fell asleep to the sound of the plane.
The stop-off in Chicago was pretty good as it gave us all a chance to stretch our legs. We were there for a few hours and the time seemed to fly by. Jess then slept the whole journey from Chicago to Jacksonville….result!
We arrived in Jacksonville, got our bags and headed out to collect our rental car. Well all I can say is you should’ve seen the look on Ben’s face. We were given a seven seater, four wheel drive with only 12 miles on the clock. It’s going to be real hard to go back to our little three door automatic Corsa. After a few tantrums Ben is now getting used to the American way of driving. He is doing a really good job.
Our first night stay was at a nearby hotel. Yet again Jess was a little star and adapted to the time difference. While Jess slept her long day off Ben and I tucked into our first American burger of the trip. My body is probably still digesting it. Oh I think we are going to settle into this American life style a little too well…
Early Sunday morning we made tracks to the RMH which is to be our home for the next 10 weeks. And what a home it is. The place is so amazing, think we are going to settle in nicely here. The three of us share a massive bedroom with a private bathroom and the house has a lot of communal areas, big lounges, a kitchen which is as big as our flat, a games room, a gym, an office, laundry rooms, a dinning area, a play room and a big outdoor play area. We couldn’t ask for more. Oh and every night someone comes in and cooks for us. And the food is good! Our plan of coming back slim has been hijacked! And can you believe it, this is all thanks to Mcdonald’s! So next time you see a charity collection bucket on the counter of McD’s be sure to throw in any bit of change you have. We have now experienced where all the money goes too. Such a worthy cause. It’s collections like these that make such a difference to families who have sick children.
On Monday we got to meet Dr. Danny and a bunch of other medical people who will be working on Jess at the Proton Clinic. They all seem really nice. Dr. Danny ran through all the risks. At the lower end of the scale we have sight and hearing loss and at the higher end of the risk scale we have further damage to pituitary, affects to her IQ level and the risk of developing other tumours. Very scary to hear, but these are the risks we are willing to take to have our little girl with us.
And then this is the part when Jess took a massive u-turn. I woke up early Tuesday morning to the sound of Jess vomiting. I rushed over to her cot and I could feel the heat coming from her before I even picked her up. She was red hot. So we rushed her over to the emergency room (I later found out that this is what ER stands for). They ran some tests and with no findings they discharged us the next day. Jess seemed to have perked up so we all put it down to a viral bug. That day we decided to do a bit of exploring, so we headed down to Jacksonville beach to help cheer Jess up. This really lifted her spirits and it was so nice to see her splash around in the sea.
On the way home we got a call from Dr. Danny and he told us to take Jess straight back to the ER for her to be admitted into hospital. With Ben and I very confused we headed back there to be met with various tests. A full ultrasound examination of her abdomen which lasted two hours. Luckily Jess slept the whole way through this. Ben and I got to see what was going on in that belly of hers. It shocked us to see the amount of fluid in there. Her belly resembled a fish tank.
Then we went for a MRI scan, bear in mind the time was roughly 11pm so we were all so drained and tired. They didn’t sedate jess for the MRI so I had to try to restrain her. This was awful, Jess was screaming, I was crying. I Couldn’t help but think, why us? Why Jess? I must have done something really bad to have to see my precious little girl have to go through all this. I’ve never seen anyone look so scared as I saw Jess that night. The noise alone was very disturbing, let alone having to be in that machine all on her own. The girl was petrified. That experience will haunt me forever. Ha, just another one to add to my list. Like I say….why? I’m just thankful that Jess is too young to remember any of this.
The MRI confirms that the tumour has grown even more and is likely to be putting pressure on her brain. This explains why she was vomiting. The ultrasound confirms that Jess has far too much fluid in her tummy for the doctors liking. The reason for this is because her shunt is draining so much CSF from her head into her abdomen that her body just does not know how to deal with it all. Jess produces far too much of the stuff and to keep pressure down in her head the shunt needs to drain it away.
The plan is to operate and move the shunt so that it drains into her gallbladder. While she is under they plan to insert markers into her skull (little metal screws) and insert her port (central line). Can’t tell you just how much she needs this port. This will save her getting so distressed when they need to take bloods. All of this may have set back her Proton treatment, but it needs to happen.
I Just wish we put more pressure on the doctors back home to do something as deep down we knew all wasn’t working well with her shunt and that the tumour was pressing on parts of her brain. They should’ve tried to drain it, perhaps? The plan is to operate early Monday morning and as Jess has seemed to perk up we requested that we go home for the weekend. When I say home I mean the RMH. So we are going to chill out this weekend before the fun and games begin next week. To be fair the children’s hospital here is pretty amazing. All rooms are private with a bathroom and if you are lucky, the views are breathtaking. I know things like these can’t ever change the situation, but it just makes it that little bit better. I should also mention that the doctors and nurses are also really good out here.
Wish us luck for next week and I will update you all shortly.
Gutted I’m missing x factor and CBB.
A massive thank you to the electrical and electrical rigging department working on Snow White and the Huntsman at Pinewood Studios for the very kind donation.
A special thanks to Jim Busby for arranging this for our special little girlie.
Ok, so this is my first ever go at blogging. So please excuse the grammar and spelling mistakes (It’s bound to happen).
So for those of you who don’t know we have our date!!! We set of early on Sat 13th August. So we are very busy getting everything packed and ready (we only found out Thursday last week). Both Ben and I have a lists as long as our arms of things we need to do before we go. We have known for ages that this time would come, and that we really wouldn’t have much warning, so you would have thought we would have been more prepared!!
Jessica has had an amazing couple of weeks. It’s so nice to hear her little laugh again. Her little character is starting to come back after all those horrible visits in hospital. My fear is that sparkle is going to disappear once we get to America. She is going to be back in strange surroundings, with different doctors and nurses all wanting a piece of her. Not too sure how she is going to handle all these changes again! Think we are going to get through ALOT of chocolate buttons!! I’m hoping after a few weeks she will get into the swing of things and make some little buddies.
We still don’t really know much on where we are staying and when the treatment is actually going to start. So once we know I will post something on FB or the site to update you all. The support we have received from you all has been pretty amazing. We are so blessed to have people like you in our lives. So thank you so much guys. I’m sure we will remain in your thoughts and prayers! We ask you to send lots of positive vibes towards Jacksonville!!
Positive and open minded all the way……xxxxxx