Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[maroo]

First let me say this is a WONDERFUL site and gives so much information!

My name is Jennifer and have been married to my husband for 14 years. I actually was blessed to marry my best friend! My oldest daughter will be 14 in May. My son is 11. Then my third child who I call my surprise will be three in February!

My husband...my best friend!

Our Three Blessings!


Let me start by saying, we had a normal family life up until 2008. My husband and I both were working full time. Our kids were in school and we were just going down the road of life as "normal parents" would.

Our Family!

When I found out in 2007 I was pregnant I was shocked, happy, and then excited. She was born February 27, 2008. We never knew this day would change our lives forever! She was born with jaundice. Nobody was concerned. I mentioned it several times to her pediatrician but was told it was normal and they would keep watching it.

Brooke shortly after she was born...

A long story short, when Brooke was 5 weeks old, I took her back to the pediatrician for her jaundice. The doctor said ok we will order a bili level. Another pediatrician walked by and said..”Oh NO, with her that jaundice we need to order this and this and this….” Thank God she walked by. She called me that night to tell me her liver functions tests were off and she was ordering an ultrasound the very next day.

We had the ultrasound and before I could get back into my car from the hospital, the pediatrician’s office was calling telling me to go to another hospital they were waiting on me to do a liver biopsy. We were admitted for two days. They told us on discharge that Brooke had biliary atresia. I couldn’t pronounce it more or less comprehend what they were telling me. They said I had to now drive to John Hopkins and talk with this team about a surgery that can buy Brooke some time but babies that have biliary atresia usually do not live past two! WHAT?!?!?!?!?

Brooke at INOVA when she got her liver biopsy and diagnosed with biliary atresia.

I was devistated! My husband and I drove over 3 hours to John Hopkins. When we got there what I thought was an evaluation was actually a pre-operative visit. We were allowed to go home for the weekend but return on Monday for surgery. I was scared to death!

After Brooke’s surgery, the next step was to wait…wait to see if this surgery was working and would buy Brooke some time. After four months of waiting, it was determined the surgery was a failure and we needed to start the process of a transplant evaluation.

Brooke waiting to see if the Kasai was a success...

We were at this point informed by our insurance company that we would not be able to have Brooke’s transplant at John Hopkins. We would have to go to Georgetown University. Another obstacle to the many we have hurdled in her short 6 months of life….but what an awesome amazing hospital facility and staff!!! Things happen for a reason; this facility is 2 hours closer and just amazing!

Brooke with her daddy and siblings days before her transplant.

We started our transplant evaluation and my husband and I were tested to be a donor for Brooke. We were both denied. My sister-n-law contacted me immediately and asked to be tested. She went through the testing and was a perfect match! God sure was with us every step of the way. Brooke and Jessica (our sister-n-law) are not blood related and she was a perfect match! On October 9th, my husband’s birthday, Jessica saved my baby’s life!

Brooke and Jessica Pre-Transplant

Brooke and Jessica Post-Transplant

Brooke and Jessica this past Easter


Jessica is doing great and Brooke is doing well. She rejected in November and December of 2008. She also fights EBV which in transplant patients can cause lymphoma. Her team is following this closely and watching and will intervene if need be.

Brooke shortyly after her transplant prior to her first rejection.

Brooke with one of her amazing doctors and another transplant friend.

Georgetown University recommended Brooke for the Make A Wish! She told them during our interview she wants to swim with the dolphins. I am not sure how well a three year old can swim with dolphins but they said they will let us know. She will be going to Disney and Sea World either sometime in April or May of this year. They also said we would be staying at Give Kids the World. My family is very excited and looks forward to this trip as we have never been! I do not know anything about Disney or Florida so any advice would be greatly appreciated!!


Brooke and her siblings have a beautiful realationship together! I love to watch them. Life is too precious and should never be taken for granted. Here are just a couple of those moments!

Welcome to the Wish Trippers thread!!

Wow...Jessica is a life saver!!!! How awesome is that!

Your family is beautiful and I am so glad you found us!

!!!

 

[jwallaceent]

Welcome, jwallaceent! Your children are beautiful! Brooke sounds like such a little fighter What had to happen when she rejected?

Thank you very much! She is a fighter she has taught me so much in her short little three years! She actually rejected in Nov and Dec of 2008. They caught it so quick and was a mild rejection they treated her with steroids and adjusted her medications. Her liver is happier now than ever! We are truly blessed! She still has her Auntie's liver!

 

[jwallaceent]

Welcome to the Wish Trippers thread!!

Wow...Jessica is a life saver!!!! How awesome is that!

Your family is beautiful and I am so glad you found us!

!!!

She truly is our life saver! We tell her that all the time! If you ask Brooke how she got her scratch on her belly she says Jessica...so Jessica one day showed Brooke her "scratch" and said well you gave me this one! It is so precious the relationship they have!

 

[luvmygrlz3]

She truly is our life saver! We tell her that all the time! If you ask Brooke how she got her scratch on her belly she says Jessica...so Jessica one day showed Brooke her "scratch" and said well you gave me this one! It is so precious the relationship they have!

Welcome Aboard! Your family is just beautiful! Brooke is such an adorable little fighter too!!

(P.S. LOVE the story of the "scratches"...absolutely priceless!)

 

[that's nice]

Judy- Thanks for finding that for me... I searched from Dec to August (about 100 pages) then I thought I was losing it.

Kelly- Thanks for your input too.

Mary- Very well stated. Your post makes much more sense than mine does. I guess that is what you get when I post after midnight.




jwallaceent!!!!

Glad you found this thread!

 

[that's nice]

I think you are daydreaming. Others have non MAW people posting on their PTR. I've been here since July and most of the post are mine. I just feel because Korissa is older and not cutesy(sp) like the others...we don't get the response. She is still a kid with a horrible disease that can strike at anytime. Just having a bad day and seeing this just hurts.

I totally understand. I'm sorry you are/were having a bad day.

Here is a little picture to cheer you up. In just over a month you will be seeing this for yourself!!!!

 

[jwallaceent]

Welcome Aboard! Your family is just beautiful! Brooke is such an adorable little fighter too!!

(P.S. LOVE the story of the "scratches"...absolutely priceless!)

Thank you!

 

[wishin' on a star]

Welcome! What a cutie Brooke is, and she is quite the amazing survivor! We must be from sort of the same neck of the woods...md/dc/va? We live in Olney, MD, but my wish child Catherine is a patient of some doctors at INOVA Fairfax and Hopkins, and last fall my son was hospitalized with asthma at Georgetown! Anyway, welcome to the DIS! We went on Catherine's wish trip last May, and had a blast!! Mid to late may was hot, but if your family is at all into Star Wars, the Star Wars weekends at DHS were a huge hit for us! Looking forward to following along with you as you plan.

 

[brookerene]

First let me say this is a WONDERFUL site and gives so much information!

My name is Jennifer and have been married to my husband for 14 years. I actually was blessed to marry my best friend! My oldest daughter will be 14 in May. My son is 11. Then my third child who I call my surprise will be three in February!

My husband...my best friend!

Our Three Blessings!


Let me start by saying, we had a normal family life up until 2008. My husband and I both were working full time. Our kids were in school and we were just going down the road of life as "normal parents" would.

Our Family!

When I found out in 2007 I was pregnant I was shocked, happy, and then excited. She was born February 27, 2008. We never knew this day would change our lives forever! She was born with jaundice. Nobody was concerned. I mentioned it several times to her pediatrician but was told it was normal and they would keep watching it.

Brooke shortly after she was born...

A long story short, when Brooke was 5 weeks old, I took her back to the pediatrician for her jaundice. The doctor said ok we will order a bili level. Another pediatrician walked by and said..”Oh NO, with her that jaundice we need to order this and this and this….” Thank God she walked by. She called me that night to tell me her liver functions tests were off and she was ordering an ultrasound the very next day.

We had the ultrasound and before I could get back into my car from the hospital, the pediatrician’s office was calling telling me to go to another hospital they were waiting on me to do a liver biopsy. We were admitted for two days. They told us on discharge that Brooke had biliary atresia. I couldn’t pronounce it more or less comprehend what they were telling me. They said I had to now drive to John Hopkins and talk with this team about a surgery that can buy Brooke some time but babies that have biliary atresia usually do not live past two! WHAT?!?!?!?!?

Brooke at INOVA when she got her liver biopsy and diagnosed with biliary atresia.

I was devistated! My husband and I drove over 3 hours to John Hopkins. When we got there what I thought was an evaluation was actually a pre-operative visit. We were allowed to go home for the weekend but return on Monday for surgery. I was scared to death!

After Brooke’s surgery, the next step was to wait…wait to see if this surgery was working and would buy Brooke some time. After four months of waiting, it was determined the surgery was a failure and we needed to start the process of a transplant evaluation.

Brooke waiting to see if the Kasai was a success...

We were at this point informed by our insurance company that we would not be able to have Brooke’s transplant at John Hopkins. We would have to go to Georgetown University. Another obstacle to the many we have hurdled in her short 6 months of life….but what an awesome amazing hospital facility and staff!!! Things happen for a reason; this facility is 2 hours closer and just amazing!

Brooke with her daddy and siblings days before her transplant.

We started our transplant evaluation and my husband and I were tested to be a donor for Brooke. We were both denied. My sister-n-law contacted me immediately and asked to be tested. She went through the testing and was a perfect match! God sure was with us every step of the way. Brooke and Jessica (our sister-n-law) are not blood related and she was a perfect match! On October 9th, my husband’s birthday, Jessica saved my baby’s life!

Brooke and Jessica Pre-Transplant

Brooke and Jessica Post-Transplant

Brooke and Jessica this past Easter


Jessica is doing great and Brooke is doing well. She rejected in November and December of 2008. She also fights EBV which in transplant patients can cause lymphoma. Her team is following this closely and watching and will intervene if need be.

Brooke shortyly after her transplant prior to her first rejection.

Brooke with one of her amazing doctors and another transplant friend.

Georgetown University recommended Brooke for the Make A Wish! She told them during our interview she wants to swim with the dolphins. I am not sure how well a three year old can swim with dolphins but they said they will let us know. She will be going to Disney and Sea World either sometime in April or May of this year. They also said we would be staying at Give Kids the World. My family is very excited and looks forward to this trip as we have never been! I do not know anything about Disney or Florida so any advice would be greatly appreciated!!


Brooke and her siblings have a beautiful realationship together! I love to watch them. Life is too precious and should never be taken for granted. Here are just a couple of those moments!

Wow, I love the story.... I have to say I'm partial to the name Brooke! LOL
I'm also partial to organ donation!
That is to say my name is Brooke and my son received a new kidney...so that's why! LOL and a friend of ours had a liver transplant....
I hope that you will start a PTR and I will sign up!
Brooke

 

[jwallaceent]

Welcome! What a cutie Brooke is, and she is quite the amazing survivor! We must be from sort of the same neck of the woods...md/dc/va? We live in Olney, MD, but my wish child Catherine is a patient of some doctors at INOVA Fairfax and Hopkins, and last fall my son was hospitalized with asthma at Georgetown! Anyway, welcome to the DIS! We went on Catherine's wish trip last May, and had a blast!! Mid to late may was hot, but if your family is at all into Star Wars, the Star Wars weekends at DHS were a huge hit for us! Looking forward to following along with you as you plan.

WOW!! Funny how close! We live near Fredericksburg Virginia a small town called Orange! Thank you so much for that information, my son loves Star Wars! Thank you for the kind words! Look forward to keeping in touch!

 

[jwallaceent]

Wow, I love the story.... I have to say I'm partial to the name Brooke! LOL
I'm also partial to organ donation!
That is to say my name is Brooke and my son received a new kidney...so that's why! LOL and a friend of ours had a liver transplant....
I hope that you will start a PTR and I will sign up!
Brooke

Thank you so much! Wow how wonderful your son received a kidney translpant! I NEVER heard of anyone with or needing a transplant until our journey began! I was always an organ donor but never had that personal experience! Now after meeting such amazing families who share the same journey or similar...it makes it so much more special and of course very dear to my heart!!! I wish your son all the very best! I hope he is doing good...and your friend too with the new liver!

Of course I am so very new how do I go about starting a PTR? Thanks again for the kind words!

Jennifer

 

[brookerene]

HI! Go to the first page and look under post #2... under fequently asked questions and that should quide you to creating a PTR!

 

[brookerene]

HI! Go to the first page and look under post #2... under fequently asked questions and that should quide you to creating a PTR!

 

[alaskanabbott]

I thought this was pretty neat- GKTW is using the name of my trip report now as a slogan!
We are going back as guests on Thursday, we can't wait, now we will actually get to do Epcot and Animal Kingdom

 

[wishin' on a star]

I thought this was pretty neat- GKTW is using the name of my trip report now as a slogan!
We are going back as guests on Thursday, we can't wait, now we will actually get to do Epcot and Animal Kingdom

So excited for you guys! Have a wonderful trip!!!

 

[my2girlsrock]

I have not posted on this yet... I was on part 3 still!!! LOL I'm a little behind... better late than never right?
I will have more time to catch up on everyone's PTR's & TR's this week because Taylor has chemo this week... Today is day 1 of her 6th round..... after this we will be halfway there... (hopefully)

I do have a question.... Is anyone else having issues with Photobucket? I am having a hard time with it the past week. Is there another program that anyone uses to upload pics?

 

[brookerene]

I just wanted to let you all know that I posted some winter photos of my kids on my PTR..if anyone is interested... Thanks!

 

[Mom2mitokids]

Whoa...I missed all this yesterday...


First of all... to you Kris! Please don't be upset.

Let me add to what I wrote above...


I do think the key to getting "regular" people to post is to join their TR's and pre-TR's. That is how I did it, I think...I had favorite TR's that I followed because they were fun to read and engaging. Just post as though you are a regular person that doesn't have a sick child or children in your case. Post on other TR's and join in their banter and eventually someone or a few will join you on theirs. Some won't...maybe most won't...but some will.

I think several things factor in...I think it would be naive to say that cute little kids don't get some followers because they are just cute to watch. But Lauren was older, so I know it isn't just the age difference.

Some caring DISers have followed the Wish Trips for a couple of years now...but don't post. And I know a few of them...and I think for some it is so sad to really get to know the family and walk with them down the road of losing a child...so some of those people have had to step back from the wish trips. Personally I find a comfort in walking with families down the impossible road of losing a child and hope that as a complete stranger I can offer some comfort, even though I am not really "there" with them...but I think some DISers just don't have the emotional energy or maybe even extra that comes with getting involved. I hope that makes sense??

It is easier, probably, for them (regular DISers posting), to identify with a family that is struggling with something they "know"...cancer, for example, is well understood and most people think the majority of kids with cancer die - which is far from the truth now (although we obviously have lost several - which is terribly sad).

It is probably also easier to identify with a child with obvious disabilities getting a wish. Lauren, for example, is obviously disabled. Although I did have one very, very cruel person on the DIS tell me that she didn't deserve a wish because she "just has CP"...nevermind how off based, mean spirited, and just plain incorrect that comment was...but for the most part, children in wheelchairs or with severe, easy to see impairments are probably easier to understand the wish, too.

The MITO community is growing and the awareness is getting out there. I know many Mito parents now (not just from the DIS) and it is becoming better understood...although it is harder since Mito can be more benign in its presentation or more severe in its presentation...which makes it harder to "follow" for someone with limited medical knowledge...

If you combine the three...her age, lack of physical characteristics to show obvious disability or impairment and the lack of understanding about Mito...then it seems to add a bit more to the puzzle that helps me understand it a little better.

But I feel your frustration. Hang in there!!! Hopefully voicing your feelings will help a lurker come out of the woodwork to support you guys and hopefully some other families on here, as well.

Thank you

It's a little more than the posting from the non members. It's actually a group I'm talking about. Not going to post it on here. It's childish and I'm just going to go on with our trip. I do see the older kids being ignored, but nothing we can do. Just having all these emotional issues right now and this one thing got to me last night.

 

[shruley]

I like using Picasa for loading pictures on here. Easy to use...it's part of Google. www.picasawebalbums.com

 

[my2girlsrock]

I like using Picasa for loading pictures on here. Easy to use...it's part of Google. www.picasawebalbums.com

Great!!! Thanks I will try that.....