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.