Second Wishes and " Mommy, Mickeys Not Here!!!!"

[kayrosek]

Shardai,
I posted on the guest book over at Mya's caring bridge but I still wanted to get on here and tell you that I am praying for you and Mya.

 

[maroo]

Update on Mya from her CaringBridge site...


The past three days have brought a slight change in Mya's pain level. She is staying up more but is still in alot of pain and tires easily. She spends most of her days sleeping. Mya's doctor's have decided to try her on Methadone. I do not like this drug choice but will still give it a try. Mya's stomache has more than doubled in size and today her right leg is swollen and plump with fluid. I am told that this is from her tumor is leaning on her blood vessels and causing poor blood flow. She is no longer able to stand or walk without pain. As of right now Mya has no set discharge date. I am holding up okay. It's very hard to see my babygirl suffer like this. I want her to be the Mya I remember but she is totally changed in her behavior. I am so hurt but unable to put my sorrow in words. So many times when people ask me how I'm holding up, all I can say is "Fine." and "Okay" when I want to say that my heart is breaking and I feel like sorrow will overtake me sometimes. I want to talk about how I'm feeling but find myself becoming closed to everyone. M​ya enjoyed herself at the hospitals St' patricks day party and even got to go outside and blow bubbles and play with sidewalk chalk today. She had fun but tired easily. She also enjoyed being read to by her childlife buddy and a Comcast volunteer. We also recieved a beautiful Princess Tiana doll from Alex's lemonade stand and a box of cute clothes and toys from Mya's friend Alex from clinic. Mya enjoyed all these events in spite of her being in pain. I am continously praying that my babygirl will feel no pain and be able to rest comfortably and peacefully.


The situation with Mya seems grave. At this point it appears that they are just trying to control her pain.

Please pray for both Mya and her Mom.


And please feel free to leave them messages on her CaringBridge site:

http://www.caringbridge.org/visit/myaroseharris

 

[cajunfan]

Shardai,

I have been posting in your guest book at Mya's Caring Bridge site, but wanted to post here too to let you know that we are praying for you and Mya. Words simply can not express my feelings how sorry I am that you are experiencing this. I wish I could take all the bad things away.

Just know that your family here loves you two!

Lynn

 

[noahsketomom]

I'll also post on Caringbridge, but we all will be lifting you both up in prayer.

I'm so glad you guys got to go on the trip -- Praise God -- who works through fairy godmothers sometimes!

hugs and prayers to you both,

 

[llurgy]

I have been looking for updates on Mya's caring bridge everyday, I also make sure to post on there too.
That poor baby

 

[myasma]

To all who are keeping up with us, thank you. Mya is dealing with something that no child should have to go through and yes I am very sad. Also remember that while this is hard, I still feel joy. Mya is still spreading her joy and love to others and as long as she is here to love and cuddle in my arms, I will be there with arms wide open.

 

[luckylady]

Please know that you and your beautiful princess are in my thoughts and prayers always. I was glad to read that the meds are working and she has less pain.

 

[livndisney]

Shardai-I'm sorry to read about the troubles from today. (If I need to chat with a nurse just let me know. It was very good to hear your voice today and I am happy to hear Mya is in less pain.

 

[myasma]

Today was our Epcot day and the Flower and Garden Festival. My day started at 6 am and Mya and I hurriedly dressed. My mom is not a morning person, so we headed to breakfast while she got ready.

I had forgot to bring my Mom's order back so she ran to get her food then off we went to the future!!!!. We took our obligatory photos in front of the sphere and then headed towards rope drop.

Rope drop was fun and it was really funny to watch the crowd run for Soarin while we walked liesurely to our first ride with absoloutely no people!!!

Mya enjoyed the ride better than last time but was not too keen on it. Next was Turtle Talk with Chrush but we were a little early so we decided to give Mya a mini shopping spree. Mya got an ariel purse, cup, and a doll. She also got a Finding Nemo book set. We headed back over to Turtle Talk and was brought here.

Mya did not really enjoy this and may have liked it better if she was older. As it was Mya was cranky and irritated which made it hard for her to get comfortable. We headed into Mya's favorite ride, Living With The Land, which she still loves.

Next we headed over to figment of Imagination ride. Only this time we paid for the specialty picture and puzzle of Mya mixed with the princesses. After we left, Mya wanted to meet the characters and did not enjoy them at all. Some part of her was still scared even though she knew they were harmless. Afterwards we went to Club cool where the beverly was still horrible. Next we went through World Showcase and experienced its lovely gardens.

Up Next: Seriously, A playground in Disney?

 

[livndisney]

Would you believe M LOVES Beverly? The staff actually gave a her an award for drinking 3 cups of it (she wanted more and I made her stop).

LOVE the first pic of Mya in her hoodie. What a cutie!!!!

 

[kayrosek]

Living with the land was one of our favorite rides too. Adorable pictures of Miss Mya in Epcot.

 

[xanphylus]

Another great update! I haven't actually been on living with the land- or I may have when I was in middle school, but I certainly don't remember it! I think my DS will have some issues with the characters this time too- he didn't last time, but kids can be a little crazy some days! They change so much in such a little period of time. It looks like she got better about them by Donald Duck- good thing too- he's my fav! Its a cute pic with the two of you too!

 

[myasma]

Would you believe M LOVES Beverly? The staff actually gave a her an award for drinking 3 cups of it (she wanted more and I made her stop).

LOVE the first pic of Mya in her hoodie. What a cutie!!!!

No I cant believe it. Wow, I dont understand why but different ppl like different things. Figures M would like something that packed alot of punch.

Living with the land was one of our favorite rides too. Adorable pictures of Miss Mya in Epcot.

Thank you. I think that ride was so interesting and calm enough for Mya. The other rides were too stimulating.

Another great update! I haven't actually been on living with the land- or I may have when I was in middle school, but I certainly don't remember it! I think my DS will have some issues with the characters this time too- he didn't last time, but kids can be a little crazy some days! They change so much in such a little period of time. It looks like she got better about them by Donald Duck- good thing too- he's my fav! Its a cute pic with the two of you too!

Donald was actually Mya's favorite character on this trip and the only one she would get semi close to.

 

[jessica52877]

It was wonderful to see more of your smiling faces! She looks so cute running around Epcot.

Still praying for you guys!

 

[eyor44]

Also remember that while this is hard, I still feel joy. Mya is still spreading her joy and love to others and as long as she is here to love and cuddle in my arms, I will be there with arms wide open.

You are such an amazing woman and mother.

 

[cajunfan]

Great update Shardai!

We LOVE Living with the Land...even my 16 year old son...the last time we were there we even took the "Behind the Seeds" tour where you can go into the green houses in the ride...talk about a really neat experience...we got to wave to everyone on the boat ride!

I am glad you all rode Figment too! Figment is my FAVORITE character (Stitch is a very close second)...the very first time I went to Disney was right after EPCOT opened, and I fell in LOVE with that little mischeveous purple dragon!

Take care! I look forward to more updates!

Lynn

 

[es45]

You are such an amazing woman and mother.

Agreed

 

[revrob]

I just wanted to say how much I've enjoyed reading your report! What an amazing, fabulous mom you are, Shardai! What a joy it is to see Mya's smiles!

 

[HeatherSue]

It's so wonderful to be able to share your trip with you through your trip report. I love seeing all of your beautiful smiles and read about the fun you were having!

You are such a strong woman, Shardai. Mya couldn't ask for a better mother.

 

[TokyoDina]

I'm glad you guys got to have some fun~!!

I hate the Beverly. I drank some of it at the Coke Cola Factory in Atlanta and it was just horrid. I can't imagine every liking it. Haha but I think I would do it if I could get an award for it. BUhaha.

I can't wait to read the rest of your TR and I keep little Mya in my thoughts.