Tuesday, March 23, 2010

News on our daughter, Merikalyn *edit*

I am finally getting the opportunity to sit down and update my blog with the events of this week. It has been a crazy week, and we've just stepped into Tuesday. If you're my FB friend, then you already know what is going on, but I realize I have readers who aren't connected to me through my social network (and that's fine... I feel little weird having complete strangers on my FB!)

Because so much has happened since Sunday, I'm going to give you all "The Nutshell Version".

And, because I know some of you might be wondering, Merikalyn's name is pronounced like America + lyn (without the first A).

Sunday morning, my husband had to work and I didn't feel so hot because I was very nauseated and my sinuses had been acting up so the kids and I stayed home from church. Merikalyn mentioned she had a headache (although she didn't have a fever), so we lounged around all morning.

Around lunch time, she came to me and said she still had a headache and was trying to explain that the left side of her face felt funny, but she was very hard to understand. Her words slurred together.

At 1:30pm, we were sitting at the kitchen table, and the left side of her face started spasming. Her mouth was moving (without her permission!) and she managed to say, "Mommy, I can't make it stop!" I wisked her to my bed and laid her down while I called around figuring out what to do. I ended up calling 911, and EMS came out and looked her over. By the time they arrived (they were nearby, so it was quickly), the spasms had stopped. I wasn't sure what it was- stroke, seizure... I had no idea. Her stats looked fine so, while they offered to take her to the ER for our peace of mind, they said their recommendation was just to go to the doctor in the morning. (Afterwards, she started throwing up.)

Merikalyn seemed to improve when they left- her speech returned to normal, but she was still having difficulting smiling on the left side (although she was able to move everything else on the left side of her body- arm, leg, etc) just fine.

Brandon headed home as soon as I told him what was going on, and my dad made his way over too. Everyone hung out and we watched The Frog and The Princess. She seemed to be doing really well, so my dad decided he would head for home... and then she had another facial spasm. (We would later find out this was a partial seizure.)

After the seizure (which, remember, was on the left side of her face), we asked her if anything hurt, and she pointed to the right side of her head. Right then and there I knew something was definitely wrong- and I knew it was "a brain issue". (Afterall, the right side of the brain controls the left side of the body.) She had a total of four seizures- two at home and two in the ER.

We decided it would be best if I stayed home with the boys and Brandon and my dad took Merikalyn to the ER. They got her an exam room right away and took a CT scan. He contacted Texas Children's Hospital to be sure of what he saw, and then told my husband and father that there was a mass on Merika's brain.

I took the boys over to my friend's home (thank you Amanda H.!) along with the dog and headed to the hospital. They let us know they would be transferring her to Texas Children's, and so, while Brandon and my dad figured out our car situation, I rode with Merika in ambulance.

Let me fast forward, otherwise this will be a long message. Merikalyn has had an MRI (they put her under for it so she would be still and calm). We've had many, many doctors come through here. There's a team of them working together (Neuros, "Cancer doctors", eye doctors, etc) so yesterday (Monday) was very busy. Brandon and I didn't get any sleep for 36 hours, and Merika napped on and off.

She cried a lot and told anyone who would listen that she really missed her brothers. She was very emotional yesterday, and she overheard that they were going to shave part of her head when I was quietly discussing it with a friend and began to sob. (I'll get on to that part a bit later).

Yesterday evening, Merikalyn's main Neuro came by to show us the MRI (which basically shows "slices" of the brain) and explained what exactly they would do. Wednesday or Thursday she will go in surgery and they will try to remove as much as possible, and then they will biopsy it. This means that they will also be taking a small, miniscule portion of her brain as well (because this happens when they remove a tumor).

Her motor skills on her left side will most likely be affected. Fortunately, she is right-handed. Also, children are very resilient, so she will definitely "snap back". I'm sure of it.

Sometime early next week, they will sit down with us and explain what kind of tumor it is (it takes about 5 days for them to look at it every which way and come up with a plan). They will give us a "course of action". If she needs radiation or chemo, they will do that almost right away. She will also have physical therapy.

We have decided the best idea is to completely shave her head. The tumor is on the right side of her brain, sandwiched in the middle right side above her ear. (There is brain above, below, and to the left of the tumor- I'm pretty sure the right side of it is against the skull.)

She would be missing a big chunk of hair that would be obvious anyway, and, depending on the treatment, she may lose her hair anyway. I know she'll feel "weird" having half a head of hair.

This is a big deal to her because she has been growing her hair out for several years.



As you can see from this photo I snapped in January 2010, it has grown quite long. (She now has bangs, though.) She calls it her princess hair. She absolutely loves her long hair and wants it even longer (like Ariel!).

To make this process easier, we have asked friends to collect hats and thick stretchy girly headbands for her to wear so she feels pretty and girly (although, she is gorgeous with or without a thing on her head!).

A couple great friends of mine, Nina and Leslie, set up a caring bridge page. They are taking your donations of pretty little hats and thick, stretchy headbands with big bows or flowers on them (kind of like the kind babies wear, but really thick). You can send them in to the address they provide. (You can also send play wigs for her to wear.)

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

Another wonderful option: Hillary over at ORibbonal Bowtique sells gorgeous hats and headbands. She is also donating half of her proceeds to help our family with some of the expenses we have during this time. (Mention "Merika" during the checkout.) Because I don't feel comfortable giving my address to strangers, Hillary will have my address, so if you want to send a hat or headband to go to Merika, just let her know.

You can visit her online shop here: http://www.etsy.com/shop/luckygirl0408

If you don't see exactly what you are looking for, she takes custom orders. She's so creative and if you just tell her a color scheme or idea, she will work with you.

Others have asked how they can contribute financially. Right now we have a PayPal account available. You can send money to contact@mandymom.com through PayPal (if you have an account there).

My friends Jessica Cross and Christy Landry, along with Christy's mother, are working to put together a special bank account for people to donate to if they feel moved to do so.

We are so thankful for the outpouring of prayers, thoughts, wishes, and gifts of all sorts (time, effort, financial, food, goodies for Merikalyn, etc).



I know it sounds crazy, but this has been an amazing experience. I would never wish this on anyone- especially not my own children- but we have seen God do great things in this situation. He has kept our hearts lifted through the kindnesses of so many of you. We have had so many moments of laughing and smiling. Merikalyn had many visitors yesterday, and we enjoyed seeing so many who came to support and love on us.



We are all doing really well today. Brandon and I went at least 36 hours with only a "few winks" (maybe an hour or two total). Monday night, the effects of exhaustion wore off and I felt "normal", but I was very much ready to conk out last night! We all slept very well.

At around 6am, one of the doctors came in to check on Merikalyn. He woke her up, and I didn't expect her to be very coherent. When doctors talked to her yesterday, she sobbed through her sentences (a combination of missing her brothers and frustration over not being able to speak clearly and convey her feelings properly). I expected the same today.

Instead, as soon as she woke up, she was perky and cheerful. The doctor asked if her name was Merikalyn, and she replied, "My name is Merikalyn Taylor McGee! It's a long name, isnt it!"

I think today will be a good day.

Today, I plan on leaving for a bit to get my hair cut. I have been growing my hair out for about two and a half years, and like Merikalyn, I feel my hair is "my crowning glory". I also realize that it is just not right for me to be able to keep "my glory" when she is going to have to shave hers.

Brandon said he would shave his head so she wouldn't feel so bad, but anyone who knows him understands that's not a sacrifice as he is balding and keeps his head shaved!

I am going to have my hair cut pretty short. I've thought about shaving it, but I'm not sure I can stand hilarity of it all- since my husband has a shaved head, our 5-year-old son has a shaved head (currently with a mohawk down the middle), and our 2 year old just has light fluffy "chicken fuzz". Wouldn't we look like a silly bunch? I'm picturing the cover of that movie "The Coneheads".

We are hoping Merikalyn's hair is long enough to donate to Locks of Love. (It has to be 10 inches.) We would hate to "waste" perfectly "good hair" that she has worked so hard to grow out. (I'm almost positive mine is not long enough for L.O.L., though.)

She wants hair like the Disney Princesses, especially Ariel (The Little Mermaid), so we are trying to find a beautiful red wig for her to wear after she gets her head shaved.

Today, I hope to be able to have her see and talk to a few little girls here in the hospital who have shaved or lost their hair. I think that might make it easier. We are going to walk around the hospital and show her some of the cool fun things they have.

There is a girl here (Molly) who has a great job. She gets paid to visit the children on this floor and bring them whatever books, movies, and toys they want! She is very sweet and has a bright spirit. Yesterday, the only thing that got Merikalyn calmed down was these "Where's Waldo" type books (Seek and Find/ Look and Find books), so Molly found her four or five. They kept her busy... kept her mind off things.





We know you are praying for Merikalyn and our family. We ask that you would also pray for my brother, Chip (and his wife Tara), and my parents, Cathy and Charles. They live about five minutes away and have been here much of the way through this. (Dad was able to listen in when the Neuro showed us the MRI and explained everything.) This is a difficult time for this as well.

We had a hard time getting hold of Brandon's mother (who lives in Louisiana), but finally reached her yesterday afternoon and found out she was visiting a friend in NW Houston (Praise God! She was already nearby!). She will be taking the boys to Louisiana mid-week. (I know they will love that!) Please pray for her, and her husband Bernie Hatchett, as well as Brandon's siblings, Ryan McGee and Jennifer LaFleur.

I also want to thank Brandon's workplace for their kindnesses. He has the most amazing bosses (I am getting all teary-eyed just thinking about it!). He is still having to do a bit of work while he is here in the hospital, but we are thankful he is able to be here with Merika.

Merikalyn is currently on an anti-seizure medication and a steriod (for the swelling around the tumor). She is not in any pain right now.

Well, this has been long enough. (And, it's the nutshell version- remember?) Thank you again for your support, prayers, and love. We are indebted to you all.


*edit*

To answer a few questions I have received on Facebook:

-Merikalyn is 6, soon to be 7 (in May).
-She is able to wear her PJs (sometimes she wears PJ bottoms and a hospital gown on top) so this helps her feel comfortable. She is a petite 6, so for those of you who have asked what size PJs to get, size 6 would probably be fine (especially if it is a gown or shorts).
-She likes all colors.
-She doesn't have a "favorite" animal. She likes all animals.
-She loves Disney Princess anything.

*edit*

Merikalyn now has her own fan page on Facebook. It is under Merikalyn McGee. You can leave her messages there.

17 comments:

Meghan said...

Hi Merikalyn!
M​y name is Meghan. I wanted to let you know I am praying for you. I know to a certain point how your feeling. I had to have my head shaved too when I was about the same age as you. I had to have brain surgery as well. I was really upset that I had to have to get rid of all of my hair. I also know about having to stay in the hospital. It's not the funnest place to be is it? I played a lot of Monopoly Jr when I was in the hospital :) that was back in the late 90's though. I'm sure you have a favorite board game as well! See if your hospital has a playroom so​rt of area, the hospital I was at did. It was a nice distraction from all the doctor talk! Do you like to read? See if your hospital has a library, another place I spent a lot of time. Well Merika I just wanted to let you know that you and your whole family are in my prayers. Remember God only gives us things He knows we can handle, you are a strong girl! One of my friends and I have a little saying we go by. It's F.R.O.G. F.​ully R.ely O.n G.od.


Mandy and Brandon,
Merika is in my prayers constantly as is your whole family. Please let me know if there is anything anything AT ALL that I can do for you guys!
*HUGS*
Meghan.

mimi said...

I just wanted to let you know that your family will be in my prayers!

robin.christine said...

Mandy,
I don't know what to say, I'm just a stranger to you, but I feel like I've known you for years. I was a friend on Open Diary for several years, I was there when Merika was only months old, I've sorta seen her grow up through your photos and blogs. I always admired what a strong and creative person you are and I guess that's why I stuck around. I'm devastated to hear what you and your family are going through, I will have you in my thoughts and prayers. Take care!
Robin

Esther (Beaber) Austin said...

Merikalyn, I want to you know that I think you are a beautiful and brave young lady! God will definitely stand by you and hold your hand along the way. You are fortunate to have such a loving and strong family to be by your side also.

I want you to know that I will be thinking of you and praying for you that you feel better very soon!

Love, Esther

glenda said...

Hi, I followed you from a friend's FB posting. I'm sorry to read your recent events.

I just wanted to share my ds4 has a stuffed turtle he has slept with for years. He named it Merika when he was little- just like America but w/o the A.

I posted on my Mom's group to please add your family to their prayers.

MommyLovesStilettos said...

Mandy, I'm thinking of your family right now. Hang in there!!! *HUGS*

Me.. said...

You and ALL of your family are in my prayers. I know your faith is strong and will see you thru this. I will become your daughter's fan on facebook!
Marlene

mom said...

{{{Mandy}}} Just a little note to tell you I'm praying for you and your family! My heart is confident that God will give you the peace, strength, and grace to get through the days ahead!

Blessings,
Tammy ~@~
Garden Glimpses

Waterdreamer said...

*Hugs* Its Monique from OD "starts with good-bye" You and your whole family are in my prayers. You have a brave and beautiful girl. God Bless, and try and take care of yourself too during this hard time

Angela said...

Amanda, Brandon, & Merikalyn,

I've been following y'all through my friend Carey's FB page. I remember you from when you were @ Trinity. I want you to know that Texas Children's is an awesome hospital. We were there earlier this year w/ our son. We're keeping all of you in our prayers! Thanks for your blog!
Angela Walker

Amy said...

Oh my! Prayers will be lifted up for y'all!

Jeanette said...

Many Prayers for you and your WHOLE Family!

Sunday in Church we were asked to think about what our confidance is in. I pray that your confidance could and would be wholly in the LORD. May this experience bring your already 'close' family even closer.

Lots of Love to you all!

Miranda said...

Your family & Merika are in our thoughts and prayers. I just have my youngest daughter spend almost a month in Children's Hospital when she was 3 months old and it was amazing the support from people through channels such as facebook & blogspot. We can out an even stronger family. God really did keep us going. Faith is everything. I spent many nights in the chapel just praying for her health to be normal.

Renae said...

Thank you for sharing this. I can't imagine all that you are going through right now. Please know that we are thinking about you and praying.

May peace and grace carry you all...

Peace to you,
Renae
Life Nurturing Education

Linda said...

I found you on Twitter, and just wanted to let you know that I will be praying for Merikalyn and your family.

SANDRA said...

Our oldest son has gone through two major skull reconstructive surgeries at age two. As a mother who has been through having her child in the hosptial for weeks, I am praying for you, your family and your daughter.

Children's Miracle Network, Ronald McDonald House and Christus Santa Rosa hospital were a blessing to us.

Count on God for strength, love, and hope... God bless.

Dawn said...

Hi! My name's Dawn and I read about you on Quiverfull. Please know that I am praying for you and your family.

Love, Dawn
www.caringbridge.org/visit/susannahall