Yippee! Our much needed MAW trip at GKTW Dec. 5-16

[kimmg]

Nice to see you.
I am excited you are going to start Dyeing again. I have one of your colorways (I think you did it and not Tina) hidden in my pile waiting for me to knit something with it. I just haven't found the perfect pattern for it yet.

Really? That is so cool! I'm waiting for some more yarn to come in and hopefully I can get some done. I found out I'll be watching a friend's newborn in a couple weeks during the day so that might slow me down but I hopefully can get some accomplished. I'd love to see it whenever you finish.

ENJOY your day!!!

Thank you so much Judy! I hope you had an awesome Mother's Day as well.

I was just so thankful that I finally have my children and they are healthy at this moment. Mother's Day is always bittersweet for me because my Mom was killed when I was 12 and it usually falls around the day(it was yesterday). It was such a hard day for so many years but now I get to just look at my kiddos and be happy.

 

[kimmg]

Wow. It's been too long since I've updated! We had a scare at the end of May and I was so worried E's cancer was back. He was complaining of stomach pain daily and we thought we saw an area protruding out in his lower abdomen. We called the Children's hospital and they wanted us to get him checked out locally. So off to the Dr. we went. The practice no longer has a pediatrician but we don't have many options so we so far has kept the same practice. I was really nervous seeing them since they missed the cancer in so many ways the first time. We went in and the Dr. didn't seem to think it was anything serious and sent us home telling us to watch him for a week and give him Tylenol. Well, actually she first said Ibuprofin but he can't take that since he only has one kidney and it's function is sketchy at times. That evening he doubled over in pain while in the bathroom. He was tossing and turning and crying in his sleep. We had gotten to the point none of us were sleeping because we were stressed with what ifs. We called the Children's hospital's Dr. on call and she said if he kept having pain that night to bring him right up(the 3 hour drive) and if not to bring him in the morning to get scanned but to call to let them know we were coming first. We waited out the night and first thing in the morning got ready for the trip. We planned for the worst and packed food, clothes, toys, etc in case we had to stay for awhile if something was wrong. We called when we were ready and they said we couldn't come. That we had to go through the process locally and we weren't their problem since he had his port out now. It was a holiday weekend and they were closing early. We were freaking out because we felt so sure something was wrong and no one was willing to put our mind at ease. Several of my friends that have cancer survivors said this was highly unusual and their hospitals were always willing to scan to put their mind at ease. We decided since it was still 3 weeks until his scans and he still seemed to be in pain to go to the local ER. They almost weren't going to but they ended up scanning him and everything was clear! We were so relieved. It was an awful, long day but it ended in great news. He did have some inflammation on his intestines which could be from chemo, radiation or even a stomach virus. The kids had an awful time waiting all day and were sooo cranky waiting for the news. We got up at 7 am and didn't leave the ER until 9:30 pm and we just had a few snacks all day.

I'm so glad we did it though. Piece of mind is worth so much! He's been much better since. We had his appointment at Children's a week ago and they looked at the scans and checked his blood and everything is good. He also got cleared from the physical therapist for being done with that treatment.

We went to two family cancer camps this past month and they were amazing! One was more like a 'camp' type experience. Bunks and all. It rained the whole time but that didn't stop the fun! Each family has their own counselor and we had a firefighter that has 3 sons. He was amazing with E and played whatever E wanted the entire weekend, including sports in the rain. I've never seen E have as much confidence as he did that weekend. I just can't even describe the love we ended up feeling there. It was very cathartic. K had a blast also and got lots of attention being the only baby. E showed off lots of dance moves and energy we had no idea he had. It was so amazing hearing 100 or more people chanting his name and 'GO'. Just an amazing moment that made us tear up. We definitely want to return next year.

The other camp was more like a resort. They had air conditioned rooms with comfy beds private to each family. We met lots of great families and people there. Swimming and water gun fights were a favorite of E's. They also had a bubble show and spa treatments for the parents. It was lots of fun! Meeting so many families it was such a realization of how lucky we are that E and the rest of us have health for today. So many beautiful and amazing families are put through so much. It was just so humbling.

While there we met a family that J got to talking about his unemployment with the Dad. It turned out he thought his son might have a job he would fit about 2 1/2 hours from us. It looked so promising and he called J a couple weeks ago and said they wanted to meet with him last week. As it turns out the Dad never called last week though. I hope everything is okay with his son and the rest of his family and nothing happened. He hasn't called back J or returned his texts.

Yesterday we drove to a lake to see a fireworks display. It was so nice and the crowds were spaced out. My brother and Dad came with us and the guys did some fishing and we had a picnic. It was nice and relaxing and while cuddling with E, watching the fireworks I realized that last year while watching fireworks we were gearing up for leaving the next day to start radiation. I'm so thankful we're in a different place this year. It's slow but we work on healing and moving forward a little more each day. Many prayers to everyone else that's still dealing with hard medical diagnosis's. His next scans are September and then December. We'll see how that coincides with his wish trip before Christmas. Happy Independence Day!

 

[blessedmom4]

So glad you are back!!!! The camps sounded like JUST what you needed!!!

 

[maroo]

Hey!! I was just checking on you guys!

I hope you are doing well!

 

[threelittlebakers]

hello my name is alicia. i read that your family is going in may of 2012. if so my family and my wish child matthew is going the 3rd week in may. maybe we could correrspond time to time.

 

[kimmg]

Hey!! I was just checking on you guys!

I hope you are doing well!

Thank you so much Maroo! We're doing great.

hello my name is alicia. i read that your family is going in may of 2012. if so my family and my wish child matthew is going the 3rd week in may. maybe we could correrspond time to time.

We actually changed our dates to December. I wish we could have met up!

Well, our tentative dates are December 5th-11th with five extra days after at my Uncles time-share. We just went to a belated memorial for my Grandma a couple weeks ago and my uncle offered to lend us days at his timeshare so that part is taken care of for us! We are so excited and now are just working on raising money for food, rental car and any additional Disney days we purchase.

I can't believe it's only 2 months away! We talked with MAW today and I guess they are just waiting to hear back from our Dr.'s to get the travel okay and a confirmation from GKTW for our dates and we should hear back from her early next week.

Not a whole lot of news otherwise (thankfully). E had scans a couple weeks ago and everything looked good. We just started homeschooling in early September and he is doing really well and loves science and reading. I have plans to return to my fiber dyeing business, but I was watching a friends newborn for a few months and then with E's homeschooling it's kept me really busy.

We used our season passes a few days ago to make a quick trip to Disneyland since it was our 15 year anniversary on Thursday and the kids had a blast and it was just a really nice, relaxing time. We loved watching them have so much fun and it wasn't too crowded. We watched WOC from the back-side of the pier and it was so pretty. K was so cute. We took her on the carousel in California Adventure and she didn't want to get off. She ended up riding it 3 times and cried when we left it. I'd have to pry her hands from the handles and she'd say "Uh-gen" (again) every time and point to the line. Now I know she is going to love GKTW and Disneyworld.

I apologize for not updating more and keeping up. I always want to take my time responding and K always likes to jump in my lap when I'm typing things out. (she's at the recycling place with Daddy and E at the moment)

 

[tehanig1974]

We too will be at GKTW in December! It is so exciting. My babysitters little girl had a Wilm tumor.....scarey stuff! If it is any encouragement....they found hers when she was 2 and she is now 13!!! Our daughters are all so excited as are we! Maybe we will cross each others paths!

 

[kimmg]

We too will be at GKTW in December! It is so exciting. My babysitters little girl had a Wilm tumor.....scarey stuff! If it is any encouragement....they found hers when she was 2 and she is now 13!!! Our daughters are all so excited as are we! Maybe we will cross each others paths!

I hope we get to join you! Thank you for sharing that about your babysitter's daughter. That is so encouraging.

I shared this on the Wish Tripper's unite thread but I thought I'd update here too.

I need some advice.

MAW approved us and we were waiting until September to call to get dates in early Dec. from MAW. We called and they suggested Dec. 5-11. We've been waiting and waiting and come to find out our Doctors won't sign off of it because he is a state insurance patient. I guess they had a family use services out of state, it wasn't covered so they sued the hospital. Now it's our hospitals policy not to sign for out of state wishes. The kicker is we called our state and they said we are covered for emergency services out of state but the hospital doesn't care.

MAW is trying to find temporary insurance for our family since the hospital is requiring it for our entire family but they haven't found anything yet. We're just so devastated and disappointed. We've been counting down, watching videos, making outfits and plans, even my uncle set up his timeshare so we could stay longer. Our hospital is suggesting Disneyland but we live about an hour away and it just wouldn't feel the same. I feel so blessed for him to get a wish at all but we were looking forward to GKTW so much. This was a chance for the healing experience of a lifetime and now it's looking like it won't happen. Any suggestions? The hospital social worker is saying that since he's out of treatment if he doesn't do his wish soon he'll become ineligible. I don't know if that's true or not. I've considered switching hospitals but then we'd have to start with a new chapter, start the wish process over again and risk being denied and losing his wish. E overheard us talking and said, "So they are going to cancel my wish?" with the saddest face. I hate that this is disappointing him.

 

[billwendy]

I hope we get to join you! Thank you for sharing that about your babysitter's daughter. That is so encouraging.

I shared this on the Wish Tripper's unite thread but I thought I'd update here too.

I need some advice.

MAW approved us and we were waiting until September to call to get dates in early Dec. from MAW. We called and they suggested Dec. 5-11. We've been waiting and waiting and come to find out our Doctors won't sign off of it because he is a state insurance patient. I guess they had a family use services out of state, it wasn't covered so they sued the hospital. Now it's our hospitals policy not to sign for out of state wishes. The kicker is we called our state and they said we are covered for emergency services out of state but the hospital doesn't care.

MAW is trying to find temporary insurance for our family since the hospital is requiring it for our entire family but they haven't found anything yet. We're just so devastated and disappointed. We've been counting down, watching videos, making outfits and plans, even my uncle set up his timeshare so we could stay longer. Our hospital is suggesting Disneyland but we live about an hour away and it just wouldn't feel the same. I feel so blessed for him to get a wish at all but we were looking forward to GKTW so much. This was a chance for the healing experience of a lifetime and now it's looking like it won't happen. Any suggestions? The hospital social worker is saying that since he's out of treatment if he doesn't do his wish soon he'll become ineligible. I don't know if that's true or not. I've considered switching hospitals but then we'd have to start with a new chapter, start the wish process over again and risk being denied and losing his wish. E overheard us talking and said, "So they are going to cancel my wish?" with the saddest face. I hate that this is disappointing him.

This just doesnt make sense?? I also dont think your social worker has their facts straight! Any new word on this?

 

[kimmg]

This just doesnt make sense?? I also dont think your social worker has their facts straight! Any new word on this?

The hospital's final word was that they were going to refuse to sign off on the wish. We've been going back and forth with MAW and they said their hands were tied so we asked if we could have his local Doctor sign off and MAW said yes so we're working on that right now. We have messages left so hopefully someone will get in contact with us today or tomorrow.

J just got a job 5 hours north of us. We're still behind until we can get things situated for a move. Another option is to speed up that process and switch hospitals and then MAW chapters. I hate to do that though because E is so comfortable with the process at our hospital and it's familiar. I'm not sure though with the recent issues we've had J and I will ever feel completely comfortable there again. We had problems with them denying seeing him back in June when we were worried about signs his cancer was back. They made a comment that he wasn't their patient since he was in remission. They said something similar to a friend of mine this month- he had something show up on a scan and they said since he was in remission he wasn't their main concern. So we're weighing our options at this point.


In other news, here's the kids in their costumes! E wanted to be an Angry Bomb Bird and I found this cute peacock costume on a blog that I made for K.

It's also J's birthday and he had the day off so he's home with us. Happy Halloween!

 

[kimmg]

I don't know what happened but one of the Dr's at the Children's Hospital signed his medical release! MAW is ordering our tickets today so our dates will be Dec. 5-16(my uncle is letting us use the timeshare to extend our time). I'm so, so happy and relieved right now! Saying a prayer thanking God for answering our prayers. Let the planning continue!

 

[billwendy]

I don't know what happened but one of the Dr's at the Children's Hospital signed his medical release! MAW is ordering our tickets today so our dates will be Dec. 5-16(my uncle is letting us use the timeshare to extend our time). I'm so, so happy and relieved right now! Saying a prayer thanking God for answering our prayers. Let the planning continue!

Woo Hoo!!! Sent ya a PM!!!!

 

[kimmg]

The kids had a blast trick or treating last night! It was so cute watching K follow her brother around and say 'twweeet!' at the door and say 'Biie'(bye) while waving. She really loved it. Now I'm just trying to keep the candy out of her hands.

I suddenly feel so overwhelmed trying to plan our trip! I researched and researched months ago and thought I had it kind of figured out and now I don't know where to start! We're kind of play it by ear kind of people and it seems like we're going to need to be more structured this time. If anyone has suggestions as I browse the boards I would love them. I think we'll probably add three days to DW, maybe four. I'll have to ask lots of questions and do some reading on the boards!

I came across this picture of K from a couple months ago. She just loves her Minnie ears. Way more than other hats!

 

[babynala]

Ohhhh, your kids are so cute and I love the Halloween costumes. Glad everything is coming together.

I saw your post about the car seat and I "think" at one point airlines would check your car seats for free. Or you can always bring it to the gate and have it checked at the gate. That way you can have it on your trip but don't have to use it on the plane. It might a little extra work but at least you know you will have a car seat when you arrive in FL and once it is in the car you don't have to worry about it again.

 

[weluvdizne]

Ohhhh, your kids are so cute and I love the Halloween costumes. Glad everything is coming together.

I saw your post about the car seat and I "think" at one point airlines would check your car seats for free. Or you can always bring it to the gate and have it checked at the gate. That way you can have it on your trip but don't have to use it on the plane. It might a little extra work but at least you know you will have a car seat when you arrive in FL and once it is in the car you don't have to worry about it again.

yes, when we last flew, they would check the stroller and car seat without charging you baggage fees as long as the child was flying. I would not trust the car rental car seats either!!!

Your family is so adorable. I bet you are getting excited. Your trip will be here before you know it. How generous of your uncle to let you use his time share to extend your trip. That is awesome. The time flies by so it will be great to have extra time!

 

[mom2pixies]

Just stopping by to say hello! It's been a long time since I visited and I see you guys are getting ready for the big trip! The first time we went to Disney (my hubby and I didn't have Brooke and Avie, then), was at Christmastime. I'm a Christmasaholic so seeing all the lights and decorations was just enchanting to me! Christmastime will make E's wish trip all the more magical! Best of luck with all of the last-minute plans.

And--your kiddos are adorable in their Halloween costumes. I'm going to need to check out that blog for K! (I've got one going myself, but lately, I've been so lazy with posting!) That peacock costume is gorgeous!!!!

 

[mommy2mrb]

what a couple of little cuties you have
so happy you will be going on E's trip during the Christmas season, what a beautiful time of year to celebrate his triumph!

 

[WDWRids]

Love the Halloween pics. The kids are adorable!! Can't wait to hear more as the trip gets closer.

 

[kimmg]

Ohhhh, your kids are so cute and I love the Halloween costumes. Glad everything is coming together.

I saw your post about the car seat and I "think" at one point airlines would check your car seats for free. Or you can always bring it to the gate and have it checked at the gate. That way you can have it on your trip but don't have to use it on the plane. It might a little extra work but at least you know you will have a car seat when you arrive in FL and once it is in the car you don't have to worry about it again.

Thank you so much! I think that's what we're going to do. That way they have the right seats and they're comfortable.

yes, when we last flew, they would check the stroller and car seat without charging you baggage fees as long as the child was flying. I would not trust the car rental car seats either!!!

Your family is so adorable. I bet you are getting excited. Your trip will be here before you know it. How generous of your uncle to let you use his time share to extend your trip. That is awesome. The time flies by so it will be great to have extra time!

Yeah, since J worked for the rental industry for so long I've heard a lot of horror stories and you just never know what will be available. I appreciate the input!

And thank you! We are so excited. I think we're already feeling rejuvenated. It's so nice to have something so positive to look forward to. I couldn't believe when my Uncle offered. I'd completely forgotten he even had them and within a day of talking to him, he had set it up! I'm sure it will be over and we won't want to leave.

Just stopping by to say hello! It's been a long time since I visited and I see you guys are getting ready for the big trip! The first time we went to Disney (my hubby and I didn't have Brooke and Avie, then), was at Christmastime. I'm a Christmasaholic so seeing all the lights and decorations was just enchanting to me! Christmastime will make E's wish trip all the more magical! Best of luck with all of the last-minute plans.

And--your kiddos are adorable in their Halloween costumes. I'm going to need to check out that blog for K! (I've got one going myself, but lately, I've been so lazy with posting!) That peacock costume is gorgeous!!!!

I was just thinking of your family last night and wondering if you gone yet and I see you have! I need to go check out your PTR again and read your TR!

I love Christmas too and I think it will add so much magic for the kids. We've been to DL during Christmas and it's so pretty. I've heard DW is even more amazing and have seen specials on TV about it. I never thought we would get to see it in person.

I'm glad you liked the costumes. I have to admit, once I was working on K's I kinda of thought I got in over my head but it just took some time and patience.

what a couple of little cuties you have
so happy you will be going on E's trip during the Christmas season, what a beautiful time of year to celebrate his triumph!

Thank you so much! I can't wait to see their eyes twinkle in awe of the lights!

Love the Halloween pics. The kids are adorable!! Can't wait to hear more as the trip gets closer.

Thank you so much! I've committed myself to use this to update and journal the experience. So if I fall behind anyone is welcome to use gentle(or not ) ways to remind me.

Thank you so much for following. I heard the plane tickets are ordered and the info is in the mail. MAW is ordering a rental for us to get to and from the airport too. Things are coming together. It's just the details that need worked on. I'm torn between making tons of plans and making very few and letting things happen as we get there. Hopefully I can land somewhere in between the two.

 

[Owensheart]

We are going to be at GKTW on the exact same dates! We will have to meet up for ice cream or something! We too are extending and added a few Disney days. I created an itinerary somewhere on our ptr if you want to check it out. We are trying not to overplan, but I did make all our dining reservations so we have them. I'm not so good at going with the flow. Ha. Can't wait to keep up with your plans...