Taylor's Once in a lifetime wish 3/13 ~ update 3/12 More BIG GIVES & time to go pg 30

[my2girlsrock]

Thanks for the tip Wendy.....

Well Sami woke up not feeling well yesterday, high temp, vomitting & now a BAD cough!!! Now I have to try to keep Taylor away from her so she doesn't get sick.... FUN!!!

Taylor goes to the doctor every Wed before she starts chemo & every Wed after her week of chemo so yesterday was her appt. Her blood levels are good right now so that is good news. She goes for her brain MRI on Feb 18th & she has her neuropysch testing also I believe it is on Feb 11th. 10 days later we will be in DIsney!!!!! She also has to have a couple of other things but we dont know if we will be able to get her in for them before her next cycle....

I figured I would share something with you that I am going to be doing.... Feb 28th is Rare Disease Day & Histiocytosis, which Taylor has, is a rare disease. With it being a rare disease that means is there are not enough doctors that know about it so our children go undiagnosed? Yes, unfortunately this happens often in the Histio world. It also means that government does not feel it affects “enough” people to warrant federal funding for research, treatment, and a cure. It is very frustrating as a parent when the doctor says to you "Unfortunately we are still learning about this disease so there is a "plan" set but we have to adjust it according to every child." When you have been told your child’s disease is “rare”, you feel alone, helpless, and most of all scared of the outcome. Some doctors feel that Histiocytosis is a form of cancer but it is not listed as a "cancer", it is a long ongoing "discussion" between many doctors & societies.

There is an organization that was started by Michelle S, her son lost his battle with a HLH, a form of hisitocytosis, called Liam's Lighthouse Foundation. They are organizing an event for Feb 28th, Rare Disease Day, in NYC at the Today Show & I will be there holding up my girl Taylor's picture. It is frustrating that this disease is taking the lives of these kids & our government doesn't seem to really care... God Forbid one of the top people in government had a child affected by this disease... I bet we would hear alot more about it then!!!

Anyway I try to do what I can to spread the word & there will be about 60 of us there holding up posters of "Faces of Histio".... we are all also trying to contact local media throughout the country to see if they can promote it... Hopefully we will make a difference

Last year our family, Team Taylor, hosted a fundraiser to raise $ for Histio research at a local bowling alley. We raised $9,000 !! We will be doing another fundraiser this year at the same place in July & we are hoping to raise at least the same if not more.... It may not be enough to change everything but we hope to do as much as we can. I can not just sit back & complain about Taylor being affected by a "rare disease" without trying to do something about it.

I just thought I would share a little bit of myself with you all... Thanks for listening.....

I hope everyone is doing well.....

 

[smileycrissy]

Oooh, thanks for sharing. I've got to mark my calendar to watch the Today show to see if I see you in the background with Taylor's pic.

I can't imagine how frustrating it is to have to deal with the"Unfortunately we are still learning about this disease so there is a "plan" set but we have to adjust it according to every child' comment. But at least you hait seems you have a support group to vent this frustrations and you know we're always willing to hear you out.

I hope Taylor starts to feel better throughout the day.

 

[Mom2Miracles]

I feel your frustration with being told by Dr's that they don't know enough, that there isn't a specific treatment so we will try as we go along. In the end, the only one affected is the child and its not always in a good way. I walk this path every day, and tend to feel more frustration then hope. I think its great though, that you have such a group of supporters around you, others who understand exactly what the disease is about. That can really make a difference in how you walk this path. I wish every day that there was something like that for us. Since my daughter doesn't fit in any one disease/disorder (just yet), there isn't much in terms of support for our family. While our family and friends try and be supportive, they really have no idea. While my daughter doesn't have histo I will be watching to support your daughter and family on February 28th.

 

[blessedmom4]

It is frustrating to constantly hear "This is rare. We don't know, I have never seen this before". Praying you can bring some national attention to Histiocytosis. We will be looking for you on the Today Show!

 

[mommy2mrb]

thank you for sharing a bit more of your story.....I can only imagine the frustration you feel not being able to do everything you want for Taylor....
keep hammering at the media, get your story out, call your state rep's and congress....make noise!
I will be watching for you on the 28th.....can we help you in any way???

You have our support here, so vent, scream what ever you need to do!!!

Hope Sami is feeling better soon and that Taylor stays healthy through it..sending a BIG DOSE of pixie dust, prayers and

 

[my2girlsrock]

OH MY GOSH!!!! I came home yesterday & there was a BIG GIVE package in the mailbox, I had to bring it inside before the kids saw it because I wanted to make sure that Johnny was home to see them open it. Sami is still feeling really sick, this virus is kicking her butt so I didn’t think she would really care either way but Taylor goes NUTS when she gets mail!!!

So Taylor opened the mail with Sami looking on from her spot on the couch it was sent by Sheri & Steve H (I don't want to post the last name & there was no DISname)…..and what Taylor pulled out absolutely amazed me, I started to cry like a fool, they were the most beautiful outfits & hair clips that I’ve seen for our dinner at Chef Mickey’s!!!! There was also a T-Shirt for Johnny & I. Guess what else?????? Matching outfits for their American Dolls!!!!! Taylor was beyond excited she put the whole outfit over her clothes that she had on because she couldn’t wait to get it on. Then she ran & got both of their dolls & dressed them. Sami LOVED the gift & she held the skirt in her arms but she was not up to trying it on…(I will get a pic when she is feeling better). Sami slept with her doll last night & Taylor brought her to school today to show everyone!!!

Sheri ~ the work & time you put into these gifts will never be forgotten, you will definately be getting a pic of them all dressed up at Chef Mickeys!!! We will stop by to see your daughter also!! THANK YOU THANK YOU THANK YOU!!!!

Thank you so very much for this… words can not express how amazing I think all you BIG GIVE people are!!!!!
Here are some pics~

Here they are opening it up, Sami was trying to get into it....

Taylor trying to figure out what it could be...

SHE LOVED IT!!!!!

She was so excited she put the outfit OVER her clothes!!!!

Her with her doll.....(without the outfit underneath) LOL

AMAZING doll outfits....

Shirts for Mom & Dad....

Here are both outfits... green is Taylor, pink is Sami....

Other side of skirt

Other side of skirt

Hair Clips

Thank you again for everything....

 

[billwendy]

AWESOME!!!

Hope Sami is feeling better soon!! 2 of my favorite little girlies are also sick - fever, puke, and just laying around!! We will see if we have anyone to come to our superbowl party this weekend!!!!

The girls are just adorable!

 

[Mom2mitokids]

What beautiful skirts and tops. The dolls are also so cute in there skirt and tops. I hope Sami is feeling better today. Praying Taylor doesn't get it. Oh... And mom and dad shirts are super cute too.

 

[smileycrissy]

Love the Chef Mickey's outfits!!

 

[mommy2mrb]

wow, you're going to be quiet popular at Chef Mickeys!!! what cute outfits and matching for their AG too! are they going to WDW too!

hope Sami is feeling better!

 

[sheridee32]

I am so glad the girls enjoyed the outfits I had ablast making them I wanted to make them a little older looking. Sorry I forgot to put my dis name on the card it is sheridee32. I hope Sami gets to feeling better. My daughter is looking forward to meeting yall. You asked the other day about rides some of our favorites are Toy Story at HS, everything at magic kingdom, and all the shows. Chef Mickeys has a great breakfast if that is when you going you can have ice cream for breakfast, but our favorite meal is at Whispering Caynon, never had breakfast but we always have supper there it is awsome and we go every 6 months and always wat at least once there, at epcot we always eat at least once at Germany, the new restaraunt in Mexico is really good too
you will be there for the flower and garden I think it is at Epcot and the flowers are just beautiful. I am really glad you enjoyed the outfits that is the biggest thrill for me I will stay in touch and if you have anymore questions just ask.
Sheri

 

[HeatherSP]

LOVE the chef mickey's outfits. They are sooooo cute! And for the dolls too .... absolutely amazing.

I am so happy that you are getting involved with the rare disease day and the today show. I really wish I could do it too. As a fellow histio mom I want to thank you so much for all that you have done to promote research for this disease. YOU ARE AWESOME!

 

[WDWCP96]

I love those outfits! They are adorable and the matching AG outfits are perfect. That is going to make an absolutely adorable family picture at Chef Mickey's!

I hope Sami is feeling better soon and Taylor doesn't get what Sami has.

 

[cogero]

totally love those outfits.

 

[kellyw8863]

Fantastic outfits! Those came out great, and the girls will surely look wonderful in them! I'm sorry Sami is still sick. I hope that she is on the mend soon, and that no one else gets it.

 

[tinytreasures]

The the outfits

 

[brookerene]

Those Big Gives are great... they are going to be the rage at Chef Mickey's!

 

[my2girlsrock]

It has been a VERY LONG week in this house....

Well let me start by saying Sami is feeling better as of Friday!!! She has a horrible cough but that will linger with her for a few weeks so she is on her nebulizer treatments. She still looks wrecked, Johnny noticed that Sami seems to keep getting sick the week after Taylor's treatment. I am wondering if she gets herself stressed out & rundown & maybe that is why she is getting sick

Taylor had what I would call a "small episode" the night before her last chemo treatment. She was in the bath & she called me in to wash her hair, while I was washing it she said that her hands felt weird. I looked at her & she said they feel funny. Then within 30 seconds her whole body tensed up & she just had a blank stare on her face, it lasted about 20 seconds. The doctors said that was most likely a "petite seizure".

She was scheduled for her Brain MRI on the 18th but they called & moved it up, we had to be there (at Cohen's) this morning at 8:30. She did start complaining about her throat being sore & having a cough yesterday but no temp. She said this morning that it hurt still & she was coughing a little bit but still NO temp. She did well with the sedation & the MRI we were home by about noon. She wanted to go to school & the nurse said that was fine, so I dropped her off & by 1:00 the nurse called & said Taylor was down there with a bad sore throat.

I went to pick her up & called the hemo/oncologist (because we have to call them before pediatrician) & her office said that I had to bring her back into Cohen's to have blood drawn & possibly IV antibiotics. Soooo back to the hospital we went (we were there by 2:45). They ran blood, did throat culture, did a viral panel test (flu test), & blood culture. We had to wait to see if her ANC was ok before we would know whether or not she had to get IV antibiotics. The lab couldn't find her blood so it took an extra hour & a half, but her ANC was ok & she had NO temp so she didn't need IV antibiotics. We were sent home with oral antibiotics & we will have all other tests back tomorrow. We got home around 7:45 tonight. Most of the time this afternoon when we had to go back to the hospital she was soooo upset. She was in the bed crying & pissed, she didn't want to do this anymore, she is tired of it. She is supposed to have this week off from doctors, she doesn't understand why this has to happen. I feel bad for her all the time but days like today when she has just had it my heart just breaks.

I am going to catch up on everyone's posts & threads now to get my mind back to Disney.....

 

[my2girlsrock]

I feel your frustration with being told by Dr's that they don't know enough, that there isn't a specific treatment so we will try as we go along. In the end, the only one affected is the child and its not always in a good way. I walk this path every day, and tend to feel more frustration then hope. I think its great though, that you have such a group of supporters around you, others who understand exactly what the disease is about. That can really make a difference in how you walk this path. I wish every day that there was something like that for us. Since my daughter doesn't fit in any one disease/disorder (just yet), there isn't much in terms of support for our family. While our family and friends try and be supportive, they really have no idea. While my daughter doesn't have histo I will be watching to support your daughter and family on February 28th.

I am sorry that you have to deal with all of this... I can't imagine how you must feel. We are dealing with one thing & we have an extremely hard time.. Thank you for your support....

 

[my2girlsrock]

Oooh, thanks for sharing. I've got to mark my calendar to watch the Today show to see if I see you in the background with Taylor's pic.

Thank you so much