Trip delay due to Leukemia diagnosis

[Wee Annie]

Hi everyone!

We had planned our "trip of a lifetime" WDW trip for this coming April (we were going for 10 days!), and timed it to include a birthday celebration for my youngest daughter, who will be turning 3. Sadly, she was diagnosed with leukemia at Thanksgiving, and we have been in and out of the hospital since then. I finally remembered that I had to cancel our trip, and did so the other day.

My two older daughters are reeling from the diagnosis, but are also really sad that we cannot travel anywhere for the foreseeable future. So I was hoping to start talking to them again about returning to WDW. Can anyone who may have experience with childhood leukemia give me an idea of when it might be realistic to plan to go? I will obviously ask our oncologists, but thought I might see if anyone here has been in a similar situation.

Her treatment protocol is for 3 years of chemo if (God willing) things go smoothly. However, she is due to start long-term maintenance this summer (again, if things go smoothly), so things should be a bit easier then. Also, don't know if this plays into the equation, but she is currently on a continuous feed through a gastric tube, so we will obviously have to wait until her gastrointestinal tract recovers.

Thanks in advance for any insights, advice, etc.! We want to be able to have something to look forward to, and I feel so bad for my other two children whose lives have been so irreparably changed. I'm sure if I searched I would find some similar threads, but with her being 2, on a continuous feed, and being in and out of the hospital, I don't get much "free" time!

Annie

 

[Sandy321]

I have no advice, but wanted to offer up prayers, positive thoughts! May you find the strength you will need in the upcoming days - may you find the answers you seek!

 

[Kirlinale]

My Daughter has an inoperable braintumor and had two years of Chemo (aged 2 1/2 when started now 7). We did Disney when in the middle of Maintainance and when her counts were good.

Your Daughter should be eligible for Make A Wish and in conjunction with your oncology clinc would be able to help you arrange a trip, ir your Daughter's wish would be to do so. I know it is overwheming but a Wish Trip could be healing for your family, especially the siblings. I have three kids and a cancer diagnosis is hard.

I personally know two children form our clinic who traveled to Disney within a year of being diagnosed with ALL and while on Treatment in maintenance, but, that depends on the individual and her health at the time.

We have lots of other medical issues too.. Not only does my child have a briain tumor, but also a Cortical Dysplaisa which causes intractible epilepsy and is unrelated and a host of other issues.

I have found Disney to be the most accomondating place to take her and where many of her very specific needs can be met.

I really hope you can have your trip soon. I will say there are many places, cancer retreats, all over the country that you can often go for free and have nurses for 'on treatment' kids.. The beach, Skiing etc.. so maybe one of those would be an option. Ask your clinic or hospitals social worker for advice.

Again, I am so sorry you have to deal with this!
Nicole

 

[buzz for boys]

Firstly can I just say and if you ever need to vent pm me.
My son was diagnosied with cancer when he was 20 months old he is now nearly 8 andhas been on and off treatment all that time.
When he was turning 4 we took him to wdw as part of a wish trip and they were fantastic at that time he was so ill and we were told to expect the worst.
As part of the wish trip we stayed at Give Kids the World where all his medical needs were met and we hada truly amazing time.
When we returned from our trip he was a different child and started to fight the disease and finally he won - we believe he picked up some pixie dust and that pulled him through.
I dont think anyone can give you any advice about when you will be able to return apart from your oncologists and when they tell you that dd is fit enough to go you canmake it soon !!
Seriously consider contacting your local make a wish and they will put everything in place just waiting for the oncologists to give u a go ahead to travel.
load of pixie dust coming your way-
Louise x

 

[Wee Annie]

Louise, Nicole and Sandy,

thanks so much for your replies and your supportive words!

And yes, I guess that what I was looking for was not so much experience specifically with childhood leukemia, but with any childhood cancer. It's the whole long-term chemo thing that really throws me. But your advice, and related experiences, are truly helpful. I am thinking that, if all is going well, a trip about one year into her Maintenance period would be good (and she will be 4 then).

Although her other medical issues seem not as serious as those you had to deal with Nicole (and thus your post is inspiring), she has already had a number of rare reactions to the chemo that have caused severe respiratory and gastrointestinal problems, so we will have to see how she handles the next several months of chemo. But your experience at WDW sounds very positive and comforting, Nicole, as to whether we will be able to go with things like a gastric tube in place, etc.

And Louise, yes, I hope that a trip like this might give her a way to turn her life around. It's so sad (and I know you've been there) to see such a young child suffer so much -- it truly breaks my heart. Since diagnosis, she has spent almost 2 months in the hospital, most in isolation in a room. Even a trip outside in the car gets her excited nowadays! I would so love to take her to WDW, and definitely need to get her older sisters there, so they can have some fun too. And who are we kidding -- I need to go to!

Thanks so much for the info and support!

Annie

 

[Leajess99]

Hi everyone!

We had planned our "trip of a lifetime" WDW trip for this coming April (we were going for 10 days!), and timed it to include a birthday celebration for my youngest daughter, who will be turning 3. Sadly, she was diagnosed with leukemia at Thanksgiving, and we have been in and out of the hospital since then. I finally remembered that I had to cancel our trip, and did so the other day.

My two older daughters are reeling from the diagnosis, but are also really sad that we cannot travel anywhere for the foreseeable future. So I was hoping to start talking to them again about returning to WDW. Can anyone who may have experience with childhood leukemia give me an idea of when it might be realistic to plan to go? I will obviously ask our oncologists, but thought I might see if anyone here has been in a similar situation.

Her treatment protocol is for 3 years of chemo if (God willing) things go smoothly. However, she is due to start long-term maintenance this summer (again, if things go smoothly), so things should be a bit easier then. Also, don't know if this plays into the equation, but she is currently on a continuous feed through a gastric tube, so we will obviously have to wait until her gastrointestinal tract recovers.

Thanks in advance for any insights, advice, etc.! We want to be able to have something to look forward to, and I feel so bad for my other two children whose lives have been so irreparably changed. I'm sure if I searched I would find some similar threads, but with her being 2, on a continuous feed, and being in and out of the hospital, I don't get much "free" time!

Annie

My little cousin (well she is 11 this year) is a leukemia survivor and was in your dd's shoes when she was 2 or 3. Many, many prayers go out for your dd and your family. There is a possibility that your dd could get a Wish Trip through Make A Wish. this is how my cousin got to go to Disney World. I think that maybe looking at planning when your dd is in longterm maintenance is a good idea but the summer so would not be a real good time to go with the heat (I would think anyway).

 

[Leajess99]

Prayers going out for your families as well Louise and Nicole. I so wish there was 100% cure for childhood cancer and brain tumors.

 

[yasuern]

Hi All,


First to all of you. I am an adult Who currently is in remission of Leukemia - I had a bone marrow transplant Sept 3,2008 and on the 100th day post transplant they did another bone marrow biopsy and found NO LEUKEMIA! I have what is called +philidephia chromosome so I am on sprycell a med that specifically targets this protein so HOPEFULLY my leukemia will stay in remission.

Having had chemo and radiation as an adult I can tell you it drains all your energy effects your GI system - foods you loved you can't even smell now

Having said all this I am feeling better now and my WISH AND PRAYERS is that your DD will feel better and be able to go on her dream trip.

We are going at the end of August - my counts(fingers crossed) are good and hopefully will continue to be so

Leukemia is a scary diagnosis and the treatment plans are hard but have faith that your beautiful dgt will come through this and have a long happy life

I will add her to my nightly prayers


Sue

 

[Kirlinale]

Yes, Long term Chemo is difficult at best. We started with High Dose Chemo then long term maintenance on a lower dose, along with treating her seizures and a host of other medical problems. My Child can't be cured now, but she has exceeded by miles any expectations we had and we have faith that will continue. Our trip this year is Celebrating Life and we leave in April for WDW just to see her be at a place where she feels typical and her differences aren't a barrier.

I don't know if you have seen this poem yet.. it is an oldie but goodie .. we are in Holland now appreciating everything... but it wasn't always like that.. there were ICU's, Long Hosptial stays, Weekly Chemo treatments, Surgeries and my child learning to walk by holding on to an IV pole.. Have Faith .. keep yourself strong (and make time for yourself , it is ok really) and try to keep things as normal as you can for the siblings.. my kids have grown (10 and 12 now) into remarkable children because of this.

Welcome to Holland...

Welcome To Holland
by Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



Gentle Hugs
Nicole

 

[mechurchlady]

I have read the Holland story and love it. For me it is more like Mexico but still not where I wanted to be in life.

I send you all lots of prayers, warm wishes, hugs,and chocolates. I have no wise words or witty sayings but do send you hugs. Faith is a victory.

 

[OneLittleSpark]

Annie, I can't find the right words to say, but all my love and prayers go out to you and your family.

I know that this is such a small thing to offer at this time, but I'd like to give you a few practical tips and reassurances for the Disney holiday, which you will go on. I don't have experience of Disney with cancer, but I'll give you what guidance I can. Sometimes, in times as hard as these, it helps to look over the parapet and plan some joy for the future.

I think that talking to Make a Wish would be a very good idea. They have so much experience planning special trips for ill children, they will be a huge help to you. Also, they can take a lot of the stress of organising away from you, managing her treatment for the length of the trip and arranging any special accommodations she might need.

When you do go, it would probably be a lot easier on everyone to go during Spring or Autumn. At these times of year, the crowds and temperatures are both lower, which will take some of the stresses off her and you.

You will be able to use a stroller as a wheelchair, meaning you can take it into rides, shows and pavilions, to help reduce her fatigue. Also, if you go with Make a Wish, you will be able to go to the head of the lines, without having to wait. I know it's only a little thing, but it should help to make the trip more manageable.

Don't plan to do everything on your trip; you simply won't be able to. Work out what are the 'must sees' for everyone, and plan your trip around those. That way, you can see everything you want to, without forfeiting your much needed rest time.

If she needed treatment while you were there, Celebration Hospital is very close to the parks, and I've heard many good things about them. They are used to receiving people who need routine treatments whilst at Disney, so should be able to co-ordinate everything with you daughter's doctors.

I know that these suggestions and tips are such a small offering, but I just wanted to reassure you that Disney will look after you. You will still be able to have your trip together, when your daughter is well enough to do it, and hopefully planning and looking forward to it will give you all a little extra strength.

My love, thoughts and prayers to all of you dealing with your childrens' illnesses. Stay strong and trust in miracles

 

[that's nice]

Annie,
My thoughts and prayers go out to your family. My daughter was diagnosed with a Wilms Tumor at her 1yr checkup. It is a cancer that attacks the kidneys. There are around 500 cases each year in the U.S. My daughter (who was only sick once from birth till 1 yr) spent almost two weeks in the hospital before and after her surgery. She had to have her kidney removed. She had a port and had chemo for 5 months. I don't know if this is a good thing but it came routine for her to go through this. As hard as it was to have a 1 yr old going through this, I think it was easier than if she was a little older.

She had fevers where we had to goto the E.R. at all times of the day and night. Those 2 and 3 AM trips were never fun. My daughter turns 3 on March 11th and still get fevers where we have to go get bloodwork done and get her counts. I know how my daughter is and how it rips your heart our when she says 'daddy i don't want to goto the hospital' 'daddy i dont want them to take my blood' Or the crying or having to hold her down while she is screaming.

I know that your daughters situation is different than mine and it is hard on her, you, and your family. There might be setbacks, but you will all get through it. Try to keep a positive attitude and it never hurts to pray where ever you are at any time even if for 10 seconds. Sometimes it gives you that little extra strength to make it through the day.

I'll be praying for her.

Tim

 

[Sandy321]

Hi Annie,

her being 2 - you have so much to concentrate on, and of course you have other children - and you have you - it is so overwhelming -

I hope you have a support system, some one in real life to let it out to -

again, I've not walked in your shoes, but I've felt your pain and so I lift you up in prayer and ask that you are surrounded by the peace of the Lord , may you feel His peace and know He is with you!!

hugs!
Sandy

 

[Wee Annie]

Just wanted to thank all of you for your wonderful support, prayers, and great advice and tips.

I've felt bad that I couldn't reply earlier, but we're back in the hospital. She got sick (yes, the trips back and forth to the ER for IV antibiotics and counts), and then she spiraled downward until they had no choice but to admit her. The poor thing has spent almost 2 months hospitalized since her diagnosis last Thanksgiving. She has, thankfully, been given morphine (she was experiencing severe pain), and is now resting comfortably (so mom goes on disboards!).

Leajess99: Thanks for the news of your cousin-- it's uplifting. Yes, we are going to definitely have to wait until long term maintenance (and then maybe some...). I wish there was a cure too -- for everyone afflicted with this horrible disease. My daughter is in the hospital now because her poor little body has proven over and over unable to handle the chemo they're pumping into her. I hope she gets stronger. They've had to stop chemo on her because she is too sick.

Sue: First, Congrats! That is wonderful. I know that that Philadelphia chromosome can make things difficult. I am so happy for you that you are planning a trip to WDW. I have read some about your planning. Pls keep us informed -- I'm truly so happy for you that you are well enough to think of going. But do take care of yourself and plan to take it easy!

Nicole, that's wonderful poem - thanks for sharing! And I am also happy that you are getting to WDW this April. Pls. keep us informed. I hope you all have a magical trip -- you deserve it!

OneLittleSpark: that's all wonderful advice. Yes, we would avoid summer. Probably have to go during a school break in the fall or spring, though because of my older daughters's schedules. Our dr already mentioned Make a Wish to us -- will look into it when the time comes around. And that's good to know about Celebration Hospital. My daughter seems unable to stay out of the hospital....

Tim: thanks for your input too. Yes, we're dealing with the port, chemo, gastric tube feeds, and ER runs too! I hope it becomes more routine. I already know to keep an overnight bag packed for her and me in the back of our car.... She HATES her port so far and gets hysterical when I even put cream on it because she knows that means that it is going to be accessed. But I hope that will improve.

Sandy and mechurchlady: thanks so much for your prayers. They are ever so greatly appreciated.

I find that thinking about something so normal as planning a trip to WDW keeps me going sometimes. So I will start planning (well it's actually just fantasizing at the moment). But maybe a year from April....

We shall see. God has His own timing.

Annie

 

[Mskanga]

My daughter was diagnosed with bone cancer at age 14 back in 2007 and to watch her go through the grueling chemo and then limb salvage surgery is something I do not wish to my worst enemy. Chemo really beats the crap out these kids bodies......and the more they get it the longer it takes them to recover. I lost count how many hospital stays and transfusions long before she was done , and we are one year post chemo treatment now and we are still dealing with the side effects , some of them permanent.
My heart goes out to you and my prayers too. I also know about the "guilt" of leaving the other kids in the back burner. You may have to wait for your trip but believe me in the end it will be so worth it. Best of luck to you.

 

[PrincessKsMom]

Prayers and pixie dust to all who are affected by this horrible disease of cancer. Hopefully we will find a cure and make things right for the children.

 

[jennydep]

My daughter, Michaela, was diagnosed with ALL in Dec. 2004. We went on her wish trip to Disney World in April 2006. She was well into long term maintenance and did very well. Hopefully that gives you a bit of a time line from another leukemia kid. Hugs to you and your family.

Jenny
www.deputyfamily.net

 

[nycsky]

My prayers are with you. I know the difficulties of leukemia, I was diagnosed with A.L.L. when I was sixteen in February 07 and put on high-risk protocol which I will finish in June of this year. After many delays due to infections and low counts, I entered maintenance in October 07. We went to WDW in January 08 when I was in maintenance. I know that leukemia is a very long, tough battle and the isolation of avoiding germs can be frustrating and difficult. WDW is doable while in maintenance and I am sure that after all of the hard times your family has had to face, you will appreciate this vacation very much. I will keep your daughter in my prayers. If you have any questions about anything, please feel free to contact me. God bless you and your family.

 

[saveaquarter]

I am so sorry to hear about this blow to your family. I wanted to join everyone else in sending you well wishes and good vibes!

And for what it's worth, a friend of mine has beaten leukemia THREE times, having just been given the official free and clear after a very long but successful chemotherapy treatment. His first round came when he was very young, as your daughter is.

Good luck with everything, and stay strong.