Our very special ‘end of treatment’ trip

[miss_piggy]

Hi and welcome to our May 2022 trip report

This is a very special trip for us as a family - it’s a bit of a long story so bear with me!

Myself (Claire) and my DH (Matt) went to Florida many times pre kids. We then had our DS (Will now 7) and took him twice in 2015 and 2016. In 2017 I was pregnant with our second child and our DD Emily was born early 2018.

After a few problems in the weeks after her birth, at 8 weeks old E was diagnosed with a hole in her heart. A very difficult few months followed before she eventually had open heart surgery at 6 months old to close the hole. It was a very difficult period in our lives and we were looking forward to putting it behind us in 2019 and returning to Florida.

As the autumn months went on E kept getting cold after cold but this was just put down to recovering from surgery but she got more and more run down and pale. To our absolute shock and devastation she was diagnosed with a rare form of infant leukaemia on Christmas Eve 2018. This started a 2 year treatment path, the first 9 months were entirely inpatient receiving 4 rounds of high dose chemo and picking up numerous problems along the way. She started maintenance chemo in august 2019 and came home. We then did 16 months of daily oral chemo and weekly blood tests before she finally finished treatment in December 2020 a month before her 3rd birthday!

Now we had hoped that she would be eligible for a make a wish trip to Florida. Unfortunately due to covid they have needed to stop granting overseas wishes and it’s not looking likely that they will return anytime soon so we had been looking at booking to go ourselves as returning to Florida was the one thing we dreamed about for those long months spent in hospital.

After much back and forth we decided to tie our trip in with my DH 40th birthday next year and we have booked our trip for May 17th to May 31st. We are staying in Bahama Bay which we have previously stayed in and loved and have upgraded to a 3 bed condo. Our flights are with VA and we will definitely be doing disney and possibly Legoland and thinking about DC for my DH birthday treat 😁

After spending most of 2020 shielding on top of the previous 2 horrific years we are so excited to have something positive to look forward to and plan and I’m really looking forward to getting stuck into planning - I’ve missed my holiday planning so much!

[miss_piggy]

Accommodation - we have booked to stay in Bahama Bay in a 3 bed condo. I think this will be our 5th or 6th return visit to the resort so it has a bit of a feeling of being ‘home’. We love the setting, the pools and the space of the rooms. The resort is beautiful and peaceful and the splash pad is fab for the kids! It’s in Davenport and near to Publix and quite a few restaurants/ take outs.

I’m so excited that we now have a countdown to return here! It’s been such a long hard few years that at times we couldn’t even begin to think about when a return visit might happen. The kids will be lovely ages to really enjoy it when we go (W will be 8 and E 4)

Flights: we are flying VA from Heathrow (which is much better for us than Gatwick as we are from S. Wales) we are on the 13:30 flight but plan on travelling up the night before to save the morning rush and to give us an extra holiday night 😁

We usually stay in a premier inn but I’ve realised I have £250 of Clubcard vouchers! We usually use them for days out/ theme parks etc but thanks to lockdown we haven’t used any for over a year and had a weekly delivery all lockdown from there. So I’ve looked on hotels.com and we can have suite in the Radisson Blu for one night in Heathrow which will be a lovely pre travel treat

I haven’t booked the Radisson yet but might thing about getting that done in the next few weeks.

A few other things I need to do is check the passports - I think only mine will expire next year and start pricing around for insurance to cover DD before I go booking anything that can’t be amended or cancelled (so far only paid deposit with VH which is fully amendable)

[Merligan]

Your trip sounds fabulous and very well deserved. Enjoy all the anticipation and planning

Xx

[Bootrip2]

I hope that you have a fabulous trip. You all deserve a lovely holiday. Being on the chemo journey with a child is awfully heartbreaking. Dont give up on Make a wish as they can do other exciting things for your child. Hopefully your insurance wont be too bad. One of the childrens cancer charities may be able to recommend some insurance companies willing to cover you.

Please keep us informed along the way eith your planning, its great to have a positive to focus on.

Our DD is now 9years from her last chemo - she is 12 now, so hopefully something special for next year!

[cornishfrogboy]

I really hope that you have the most awesome vacation in the history of vacations. You richly deserve it.

[tocpe321]

Fantastic to have such a lovely trip planned and you all definitely deserve it afer all you've been through.

[miss_piggy]

Originally Posted by Bootrip2

I hope that you have a fabulous trip. You all deserve a lovely holiday. Being on the chemo journey with a child is awfully heartbreaking. Dont give up on Make a wish as they can do other exciting things for your child. Hopefully your insurance wont be too bad. One of the childrens cancer charities may be able to recommend some insurance companies willing to cover you.

Please keep us informed along the way eith your planning, its great to have a positive to focus on.

Our DD is now 9years from her last chemo - she is 12 now, so hopefully something special for next year!

See more...

That’s great news to hear your DD is so far past EOT now I really hope she is doing well?

The first 9 months of intense chemo was very harsh, she had only just turned one and it was relentless. Thankfully the maintenance months were gentler on her and most of it was during lockdown so we managed to avoid picking up any infections etc that would’ve landed us a hospital stay! She’s 4 months off treatment now and doing well, we are really trying hard to put the last 3 years behind us and look forward- booking this trip was a big step in that process 🙂

We are really hoping she will still be able to apply for a wish of some sort, we are thinking maybe a hot tub or hydrotherapy bath but will see what they are able to help us with when they re open for wishes 🤞🤞🤞

[Bootrip2]

Originally Posted by miss_piggy

That’s great news to hear your DD is so far past EOT now I really hope she is doing well?

The first 9 months of intense chemo was very harsh, she had only just turned one and it was relentless. Thankfully the maintenance months were gentler on her and most of it was during lockdown so we managed to avoid picking up any infections etc that would’ve landed us a hospital stay! She’s 4 months off treatment now and doing well, we are really trying hard to put the last 3 years behind us and look forward- booking this trip was a big step in that process 🙂

We are really hoping she will still be able to apply for a wish of some sort, we are thinking maybe a hot tub or hydrotherapy bath but will see what they are able to help us with when they re open for wishes 🤞🤞🤞

See more...

Putting a baby through this is so harsh. DD was 18 months old at start of treatment, although we sort of knew a few months before that it was imminent. I will never forget getting THAT phonecall. The rest is a bit of a blur, some happy times mixed in with it all too, and sad times like when a child doesnt make it, it sends your fear into overdrive. Losing her hair was traumatic as it happened quickly, and she became allergic to one of her treatments, which caused a change in treatment after a year for the last 6 months. Our medical team was amazing and their kindness will never be forgotten. We still get invited (in normal times) to their annual day when past patients etc can meet.
Her first planned trip to Disney after treatment was cancelled as she was too poorly but we went about 6 months after treatment end. Do they still ask you for 4 wishes? DD had not much speech or understanding so her wishes were quite basic, to meet Oso and Hnady Manny, ride in Mickeys balloon, picnic with one of her other characters or a large version of her bunny (she still calls her bunny Chemo bunny, she has no idea of how ill she was but knows bunny got her through.). We stayed at GKTW and it is amazing if you can get to go. We visit whenever we go to florida and have volunteered for a day too, this is something i would like to do again. It feels like home and the peopke are so friendly, it really feels like a different world. It is worth waiting for that if you can. X

Time will fly by for you as you adjust to normal life, but it will never be the same as before, but can be good. DD has regular MRIs to keep an eye on things in her head, but she now does these without a GA, a decision she made several years ago and now takes it all in her stride, she barely blinks inside the scanner and is in there for an hour or so. Effects of chemo can last for years, DD has a multitude of other things going on, with learning disabilities and anxieties but on the whole she is a happy person. We are just so proud of her. Kids are amazing. Xxx

[LizzyBear]

Following Sounds like a very well deserved trip for all of you.

[MrsBC]

Sounds like a well deserved holiday for you all