I hear myself tell my story, and it becomes new again. I hate that. I think whenever people go through something traumatic--like your child having brain cancer--it's best to leave the memory behind when you can.
Denial
Emma started aquatic therapy April 1st, weekly for 12 weeks. She has never had swim lessons, so its really wonderful to see her enjoy herself so much. We love our therapists, Lance and Rusty. She gets quite the work out and is literally a wet noodle at the end of the session.
I'm in a conversation at aquatic therapy on Wednesday, talking to another mom I've been trying to avoid for weeks now. (Oh man.) I hear myself telling her that Emma is now four years old and had a malignant brain tumor removed almost a year ago. (Ugh.) I also hear myself saying we are fortunate. And really we are. I almost feel guilty that this woman cannot have the same thing for her child. The one confined to a wheel chair, with a feeding tube and no muscle tone at all. Her beautiful 3-year-old daughter who is almost blind, doesn't walk nor talk much because of a brain bleed that occurred in utero. (Sucks!)
Here I am telling my story; my child is alive, and healthy and swimming. Yet I avoid this woman and other parents at hospitals, why? Not for lack of compassion. But only because I want to be normal. I don't want to admit, or even remember what happened last summer. I want to pretend that Emma a normal 4-year-old girl. Is that wrong? Sometimes I look at myself and wonder if this is how I should be handling the situation. Most of the time I don't have the answer to that. In fact, I don't know if I ever really will.
March MRI
The last MRI that Emma had in March was completely clean. Not even the "little spot" that the doctors were watching was evident.
Dr. Andrew Jea, our neurosurgeon, started by showing us the previous scans from January; then the new March scan. When the new images came up on screen, I gasped. There was nothing. No tumor, no spot, nothing at all. Amazing! I was speechless. Mike was standing next to me, so taken aback and relieved that he began sobbing. I had my doubts that this was correct, but the Dr. Jea assured me "Emma is tumor-free." I was beside myself.
So since March, we have been trying to be those normal people. To try and give our daughter the best, most normal life we can. This is an extremely difficult thing to do, especially for me. That "tough as nails" persona, the "strong mother" thing, it was all just temporary. I set my emotions aside--as I often do--to deal with the hard issues. I am more effective that way. I didn't cry, I didn't even let myself feel anything until it was done. Not that we are out of the woods yet with Emma. But in November, when we moved back into our house, when her cancer treatments were over, when I could finally relax a little, that's when I really found myself hitting rock bottom. The weight of every little emotion I had been collecting came crashing down on me. It was hard to breathe. I had terrible anxiety and mild depression. I still have issues today.
There. I said it out loud. So now you know. This is part of the reason I've been hiding far away from this blog. It's easier to forget the bad stuff if you ignore it. I choose to focus on the positive.
School is Cool
Emma started school in March at our local elementary. She's in a Pre-K Montessori program that seems to suit her well. She actually got accepted last year in the spring and was supposed to start in August. But God had other plans. In June she was diagnosed with a tumor and when school started in August, she still had more than two weeks left of radiation therapy. The school people were kind enough to hold a spot until October, but she was still quite fatigued and still suffering the lingering effects of radiation therapy, so we decided to pass on the opening. So when a spot in the program opened up in March, we jumped right in. We were encouraged by doctors and therapists to place her in a program that would more mentally stimulate her. She went from one day a week at daycare to a full-fledged, five day a week montessori program. It was a very tough transition, but she loves it. Today was her last day and summer vacation has now officially started.
Anxiety Issues
Currently, there is another MRI scheduled for June 1st, and the past few days I have been haunted by nightmares.
The first one was odd: a room full of random people, inflating balloons of all colors. It didn't make any sense. The next thing I knew all of those random people, including myself, were in the middle of a grassy field with balloons in hand. A man stood in the middle of the crowd, releasing them one by one into the sky while saying a name. The first one was "Emma Maltbie." I woke up immediately and was really shaken.
The next dream was even worse. All I remember was that she was in a child-sized coffin, open-casket, people sobbing all around her. I'll leave it at that. Just describing it is too much for me to handle. I woke up crying and really distraught and I can't get the image out of my head.
So hopefully those dreams don't come true. I know I'm not psychic; let's hope not. I ask you to pray that our little Emma has a clear scan on the 1st of June again. I don't ever want those dreams to become a reality. Can you hear me God? I hope you're listening.
Thursday, May 28, 2009
Tuesday, March 3, 2009
It's Been A While
Hey there blog, long time, no see. Sorry to have neglected you for almost four months; I hope you are not mad at me. And I hope your readers can understand where we've been. I've kind of been hiding out from the blog world and trying to slowly sort out the chaos that is my life.
So I just want to catch up by saying, "Happy Thanksgiving," "Merry Christmas," "Happy New Year," and "Happy Valentines Day!" Ha. So glad I didn't miss St. Patrick's Day too.
I will try to be a better blogger, I promise. I swear though, time just flies. This post will be a short one since I am exhausted from the day I've had, and exhaustion equals blogging gibberish. What I plan on doing is to recap you really quickly on the past 4 months and then later fill in the blanks with more in-depth posts (maybe). This is the plan, let's hope I stay on course. Any bets?
Emma's Progress
Mike and I are so blessed to have such an awesome kid! She is doing great, just wonderful. These days she is more physical, alert, has a better appetite, and more energetic. She still enjoys weekly dance class and now plays soccer at the local YMCA. Emma has skills with the ball, but then gets distracted by stopping to pick flowers in the grass. Go figure.
November
Shortly after Emma's birthday, we moved back into the house. It took forever to get things done. The roof was fixed, carpet replaced, and the ceiling dry walled. Liveable enough, we moved back in the day before Thanksgiving and hosted the holiday dinner the next day. Very tiring. The girls were elated to get back into the house. Since then, we've just been trying to get back on track with daily living.
December
I have been on hiatus from my photography business since Emma's diagnosis in June, which allowed me to spend more time with the family. Probably the best decision, as December turned out to be a wonderful month without the stress of my busiest season.
On the 20th, Emma was chosen as a "star" for Texas Children's Hospital's 2008 Cure Kid's Cancer Radiothon and got to speak live on-air with 93Q radio personality Cactus Jack. She sounded so cute and even read the 1-800 pledge number on-air. Future broadcaster? Hmmm.
They also aired our interview from October (set to music--"Higher" by Creed) on 93Q and 106.9 The Point. Of course I sounded like a dork, but Mike had the perfect radio voice. It was a nice story and was more uplifting and less of a tear-jerker than some of the others that were aired. Hopefully I can dig it up and post a link on here. The Radiothon raised more than $771,000 for the Texas Children's Cancer Center. Awesome. Thanks everyone.
Christmas was a great celebration for Em and Hannah; I have photos to prove it (likely in a later post). They now fight over the bike with training wheels that Santa brought for Emma. Darned Santa, he's not always the equal opportunity gift giver that we wish he was.
January
This month brought an MRI on the 10th. Emma did well with sedation and the trauma of getting her Port-a-cath accessed. We have actually been getting it flushed monthly, which involved her getting poked with a needle. Trauma isn't even the word! Apparently one time the numbing cream didn't work, and since then, I have to pretty much sit on her as she screams and wriggles in order for the nurses to do their jobs. Nice. Not looking forward to the wrestling match at the next one.
We were on pins and needles about the MRI since her balance was off and she had complained of her head hurting again. The MRI results showed the spot they were monitoring was still there. No longer deemed "blood product," the doctors felt that there was "no change" or "minimal change" (yikes) and decided to move the next MRI a month sooner, bringing us to March 4th. The headaches were caused by a nasty sinus infection, which I thought was just a really lenghty case of "the snots." Never underestimate the power of mucus.
February
Not much here, except Emmy started soccer season. Soccer has really helped her out; it has seemed to be very theraputic. Her balance is better, her appetite is back, she sleeps well. Too bad it only lasts for 6 weeks. The entire team is comprised of boys, so she is the little princess. She has great talent on the field, though she can usually be found picking flowers in the grass, or holding hands and dancing around with the boys. It's safe to say, the team rarely wins. But at least its cute.
Up To Speed
So that's basically it in a nutshell. I didn't give you any insight on how things are going with me emotionally, but save that for another day. I've got some heavy baggage, you know. Right now, I'm going down that path of restlessness that I find every time we have to do an MRI. I get quite a bit anxious, but I'm sure that is normal.
When we got the January results read back to us, it made me sick. I mean its true that "no news is good news," especially in this case, but I just was really expecting Dr. Su to tell me everything is gone and its fine. Instead I hear that we have to keep our eye on something. Not what you want to hear.
So I ask God tonight to let Emma have a good, uneventful, clear scan tomorrow morning. Please, God.
Though I'm sure it will be fine, it never hurts to ask, right? Fingers crossed.
So I just want to catch up by saying, "Happy Thanksgiving," "Merry Christmas," "Happy New Year," and "Happy Valentines Day!" Ha. So glad I didn't miss St. Patrick's Day too.
I will try to be a better blogger, I promise. I swear though, time just flies. This post will be a short one since I am exhausted from the day I've had, and exhaustion equals blogging gibberish. What I plan on doing is to recap you really quickly on the past 4 months and then later fill in the blanks with more in-depth posts (maybe). This is the plan, let's hope I stay on course. Any bets?
Emma's Progress
Mike and I are so blessed to have such an awesome kid! She is doing great, just wonderful. These days she is more physical, alert, has a better appetite, and more energetic. She still enjoys weekly dance class and now plays soccer at the local YMCA. Emma has skills with the ball, but then gets distracted by stopping to pick flowers in the grass. Go figure.
November
Shortly after Emma's birthday, we moved back into the house. It took forever to get things done. The roof was fixed, carpet replaced, and the ceiling dry walled. Liveable enough, we moved back in the day before Thanksgiving and hosted the holiday dinner the next day. Very tiring. The girls were elated to get back into the house. Since then, we've just been trying to get back on track with daily living.
December
I have been on hiatus from my photography business since Emma's diagnosis in June, which allowed me to spend more time with the family. Probably the best decision, as December turned out to be a wonderful month without the stress of my busiest season.
On the 20th, Emma was chosen as a "star" for Texas Children's Hospital's 2008 Cure Kid's Cancer Radiothon and got to speak live on-air with 93Q radio personality Cactus Jack. She sounded so cute and even read the 1-800 pledge number on-air. Future broadcaster? Hmmm.
They also aired our interview from October (set to music--"Higher" by Creed) on 93Q and 106.9 The Point. Of course I sounded like a dork, but Mike had the perfect radio voice. It was a nice story and was more uplifting and less of a tear-jerker than some of the others that were aired. Hopefully I can dig it up and post a link on here. The Radiothon raised more than $771,000 for the Texas Children's Cancer Center. Awesome. Thanks everyone.
Christmas was a great celebration for Em and Hannah; I have photos to prove it (likely in a later post). They now fight over the bike with training wheels that Santa brought for Emma. Darned Santa, he's not always the equal opportunity gift giver that we wish he was.
January
This month brought an MRI on the 10th. Emma did well with sedation and the trauma of getting her Port-a-cath accessed. We have actually been getting it flushed monthly, which involved her getting poked with a needle. Trauma isn't even the word! Apparently one time the numbing cream didn't work, and since then, I have to pretty much sit on her as she screams and wriggles in order for the nurses to do their jobs. Nice. Not looking forward to the wrestling match at the next one.
We were on pins and needles about the MRI since her balance was off and she had complained of her head hurting again. The MRI results showed the spot they were monitoring was still there. No longer deemed "blood product," the doctors felt that there was "no change" or "minimal change" (yikes) and decided to move the next MRI a month sooner, bringing us to March 4th. The headaches were caused by a nasty sinus infection, which I thought was just a really lenghty case of "the snots." Never underestimate the power of mucus.
February
Not much here, except Emmy started soccer season. Soccer has really helped her out; it has seemed to be very theraputic. Her balance is better, her appetite is back, she sleeps well. Too bad it only lasts for 6 weeks. The entire team is comprised of boys, so she is the little princess. She has great talent on the field, though she can usually be found picking flowers in the grass, or holding hands and dancing around with the boys. It's safe to say, the team rarely wins. But at least its cute.
Up To Speed
So that's basically it in a nutshell. I didn't give you any insight on how things are going with me emotionally, but save that for another day. I've got some heavy baggage, you know. Right now, I'm going down that path of restlessness that I find every time we have to do an MRI. I get quite a bit anxious, but I'm sure that is normal.
When we got the January results read back to us, it made me sick. I mean its true that "no news is good news," especially in this case, but I just was really expecting Dr. Su to tell me everything is gone and its fine. Instead I hear that we have to keep our eye on something. Not what you want to hear.
So I ask God tonight to let Emma have a good, uneventful, clear scan tomorrow morning. Please, God.
Though I'm sure it will be fine, it never hurts to ask, right? Fingers crossed.
Saturday, November 15, 2008
Emma's Birthday Recap
Emma had a great day on Thursday. Turning four was a big deal.
Truly, I didn't want to have a huge birthday celebration for her. My reasoning was we had way too much going on, just had a huge benefit dinner, and were still not in the house. But my Mom and a few other friends helped me to realize that I should make a big deal for every birthday. I really didn't want to think this way--as though any birthday might be the last--but I guess it's reality. I must be in denial.
I attempted to take her to school Thursday, but she just wouldn't have it. Somehow, school is not as appealing as staying home with Grandma and cuddling on the couch while zoning out to The Backyardigans. So we ran some errands and had lunch with her godmother Jessica.
We were in a rush to leave lunch so we could make it to our therapy appointments at Texas Children's Hospital. Emma got to play some special games in physical therapy with Ms. Michelle and Ms. Lindsey. Ms. Hazel in speech therapy threw her a little party complete with cupcakes and gifts--too kind. Thankfully, this little sugar rush got Emma through occupational therapy with Ms. Ashley, who worked with Emma on some birthday art to mark the day.
She had such a fun day that she passed out in the back seat before we even got out of the parking garage. The nap continued back at home (my mom's house) and lasted 2 hours, just enough time to prepare for the little family celebration we threw for her.
When cake and candle blow-out time came, Hannah was super jealous and threw a tantrum, "me too," she cried. Hannah's 2nd birthday is next Thursday, the 20th, along with my Dad. We had to sing the birthday song twice to calm her down, but it was so cute. There was definitely more drool on the cake after Hannah was done with it.
Photos for your viewing enjoyment--please excuse the wonky color!
Truly, I didn't want to have a huge birthday celebration for her. My reasoning was we had way too much going on, just had a huge benefit dinner, and were still not in the house. But my Mom and a few other friends helped me to realize that I should make a big deal for every birthday. I really didn't want to think this way--as though any birthday might be the last--but I guess it's reality. I must be in denial.
I attempted to take her to school Thursday, but she just wouldn't have it. Somehow, school is not as appealing as staying home with Grandma and cuddling on the couch while zoning out to The Backyardigans. So we ran some errands and had lunch with her godmother Jessica.
We were in a rush to leave lunch so we could make it to our therapy appointments at Texas Children's Hospital. Emma got to play some special games in physical therapy with Ms. Michelle and Ms. Lindsey. Ms. Hazel in speech therapy threw her a little party complete with cupcakes and gifts--too kind. Thankfully, this little sugar rush got Emma through occupational therapy with Ms. Ashley, who worked with Emma on some birthday art to mark the day.
She had such a fun day that she passed out in the back seat before we even got out of the parking garage. The nap continued back at home (my mom's house) and lasted 2 hours, just enough time to prepare for the little family celebration we threw for her.
When cake and candle blow-out time came, Hannah was super jealous and threw a tantrum, "me too," she cried. Hannah's 2nd birthday is next Thursday, the 20th, along with my Dad. We had to sing the birthday song twice to calm her down, but it was so cute. There was definitely more drool on the cake after Hannah was done with it.
Photos for your viewing enjoyment--please excuse the wonky color!
Birthday Egg Roll
Everyone has a birthday in November, except Mommy!
Party blower full of drool. Notice how many clothing changes Hannah goes through.
My baby is two soon!
Birthday spaghetti.
Yummy Cake.
My most favorite photo EVER!!! What a sweet look on her face.
Hannah's turn.
Spitting on the cake, er, I mean blowing out the candles-Hannah style. Oh, and clothing change number two.
Icing on the nose.
A very tired Hannah enjoys her Fairy Dress-Up Box gift. She wouldn't take the outfit off and slept in it all night long--so funny.
Thursday, November 13, 2008
Happy Birthday Emma!
Dear Daughter,
Today is your birthday. I can't believe four years have gone by in a heartbeat. I don't know if I will ever be able to express in words the love I feel for you. I thank God every day for blessing me by bringing you in my life. More importantly, I thank God for keeping you in our lives.
This summer has been a particularly hard one, but it taught me so much. Thank you Emma for teaching me how to be strong. And teaching all of us how important every day is. I hope you have the best birthday today.
Love, Mommy.
Today is your birthday. I can't believe four years have gone by in a heartbeat. I don't know if I will ever be able to express in words the love I feel for you. I thank God every day for blessing me by bringing you in my life. More importantly, I thank God for keeping you in our lives.
This summer has been a particularly hard one, but it taught me so much. Thank you Emma for teaching me how to be strong. And teaching all of us how important every day is. I hope you have the best birthday today.
Love, Mommy.
Monday, November 10, 2008
It's Never Too Late For Thank You
So it's been a few weeks since the awesome Benefit Dinner was thrown for Emma on the 1st of November. And I have to apologize for not posting a public "thank you" immediately.
Truth is I was waiting for Mike to hand over the speech he gave so I can transpose it. Though he had most of it written down, his prologue was from the hip and I wanted to include that too. I should've known not to wait on a busy husband.
So anyhow, THANK YOU. Thanks to everyone who attended and supported us. Thanks to those that met for weeks in planning, and worked so hard at the event. Thanks to those that donated items, funds, time or talent to make the event a success and a blast to attend. I would thank each individual contributor, but I'm not sure who did what.
Big Audience
A few days before the Benefit Dinner, I was prepping Emma so that she wouldn't be overwhelmed by the event. In the past, she has had a tendency to freak out when the "Happy Birthday Song" is sung during parties. "Too loud!" she would say, covering her ears and crying. This was the case no matter whose birthday it was.
So I tried to prepare her for the Benefit by telling her that we were going to have a big party for her. The conversation went like this:
Me: Hey Em, pretty soon we are going to have a big party for you, and all of your friends will be there.
Emma: Why? Is it my birthday?
Me: No, not yet. We just want to celebrate that you are getting better, that's all.
Emma: Oh. Will there be a big audience there?
Me: Well, sort of. We are going to see your friends, and teachers, and therapists, and neighborhood people. Everyone.
Emma: Oh. (She pauses to think for a minute.) Uh, sorry Mommy, I think I'm going to be tired that day.
Fortunately for us, she wasn't. No shyness--which I totally expected--and no fatigue. She was so happy and had so much fun at the benefit. She gave everyone a warm hug and ran around in circles playing "tag" with her little buddies. She and Hannah also tormented the poor balloon clowns and face painters the entire night.
Unfortunately, I was a bit too busy eating or chatting away with friends and neighbors that I didn't get to photograph my own event. Luckily, a few people have sent me their photos which I am posting here. If you took a few pics, please email them to me so I can include them in my keepsakes and post them to the blog. Thanks so much!!
Truth is I was waiting for Mike to hand over the speech he gave so I can transpose it. Though he had most of it written down, his prologue was from the hip and I wanted to include that too. I should've known not to wait on a busy husband.
So anyhow, THANK YOU. Thanks to everyone who attended and supported us. Thanks to those that met for weeks in planning, and worked so hard at the event. Thanks to those that donated items, funds, time or talent to make the event a success and a blast to attend. I would thank each individual contributor, but I'm not sure who did what.
Big Audience
A few days before the Benefit Dinner, I was prepping Emma so that she wouldn't be overwhelmed by the event. In the past, she has had a tendency to freak out when the "Happy Birthday Song" is sung during parties. "Too loud!" she would say, covering her ears and crying. This was the case no matter whose birthday it was.
So I tried to prepare her for the Benefit by telling her that we were going to have a big party for her. The conversation went like this:
Me: Hey Em, pretty soon we are going to have a big party for you, and all of your friends will be there.
Emma: Why? Is it my birthday?
Me: No, not yet. We just want to celebrate that you are getting better, that's all.
Emma: Oh. Will there be a big audience there?
Me: Well, sort of. We are going to see your friends, and teachers, and therapists, and neighborhood people. Everyone.
Emma: Oh. (She pauses to think for a minute.) Uh, sorry Mommy, I think I'm going to be tired that day.
Fortunately for us, she wasn't. No shyness--which I totally expected--and no fatigue. She was so happy and had so much fun at the benefit. She gave everyone a warm hug and ran around in circles playing "tag" with her little buddies. She and Hannah also tormented the poor balloon clowns and face painters the entire night.
Unfortunately, I was a bit too busy eating or chatting away with friends and neighbors that I didn't get to photograph my own event. Luckily, a few people have sent me their photos which I am posting here. If you took a few pics, please email them to me so I can include them in my keepsakes and post them to the blog. Thanks so much!!
Emma entranced either the live music acts (here and here) or the balloon clowns--I'm not sure which one. The following photos by Alisha Cunningham.
Mike's speech.
Holly on the phone.
The Cunninghams have fun.
Hannah's little partner in crime, Kat De Jong.
Andrew Karnavas plays for the crowd (not pictured, lol.)
Diane with the face painters.
Heather and Kate the Princess.
The Galindo's and friends.
Will and Louie taking a break.
Kristi and Noah partying down.
Laura and friends help with the food.
Little Katie gets her face painted.
The clowns were a huge hit!
This is our family on Halloween night. Photo by Alisha Cunningham. Thanks Alisha!
Emma with good friends Kylie and Clare. Photo by Mrs. Zugheri (Will's mom).
Speaking From the Heart
To avoid waiting yet another few weeks, I have decided to just blog the part of Mike's speech that was written. Sorry folks, you don't get to re-live his humor this time.
One day a storm came ripping through our lives, flipping everything upside down and knocking out our power. Getting through it took all the strength we had and we couldn't have done it without the support of our family and friends. Then three months later, (Hurricane) Ike came through Houston.
Early this summer, when life was "normal"--before "everything" happened--we never could've imagined that we would be tested by two very huge, very different types of storms rolling over our lives in the same few months.
Since Emma was diagnosed just over four months ago, time has taken on a surreal slowness and everything has been amplified: the love, the fear, the days, the minutes, the moments and the milestones.
As much as all of that, our deep appreciation and love for friends and family has grown, strengthened and solidified.
I am truly the luckiest man alive. Blessed with a beautiful, strong, amazing wife, three gorgeous, happy, magical daughters, a loving family and the most incredible, most unbelievably caring and generous group of friends, neighbors and extended family anyone could ever ask for.
You are the source of our strength and our positive attitude. You are the support and foundation that on those darkest days has kept us, and keeps us, from sinking into the quicksand of confusion and despair. You have literally and metaphorically been our shelter through these storms and we absolutely could not have made it this far without all of you.
Speaking on behalf of Emma, Hannah, Maysie, Jayne, myself and the entire family, we have been truly touched and humbled by the outpouring of prayers and support. We thank you with all of our heart.
Friday, October 31, 2008
Happy Halloween!
Just wanted to say Happy Halloween from our little cheerleading squad. (If you have enough daughters, you can have one of your own too!) The costumes were Daddy's idea.
We are grateful and excited about the benefit dinner for Emma tomorrow! We are looking forward to seeing all of our family and friends and to thank those who worked so hard on putting it all together, and also to those attending. I will be a wonderful party and a great way to celebrate the good news of her recent MRI. We hope to see you all there!
We are grateful and excited about the benefit dinner for Emma tomorrow! We are looking forward to seeing all of our family and friends and to thank those who worked so hard on putting it all together, and also to those attending. I will be a wonderful party and a great way to celebrate the good news of her recent MRI. We hope to see you all there!
Go Horns!
Thursday, October 23, 2008
Happy, Happy, Joy, Joy
Wednesday we met with Dr. Jack Su for our six week follow up and MRI results for Emma. I think I'm losing it. Stupid me forgot to ask the nurses after the MRI on Tuesday to leave the "noodle" in her port-a-cath. Emma calls it a "noodle" when her port is accessed. This means they stick a needle with a tube attached to it to administer anesthesia and other medicines.
They usually leave the needle and tubing in place until all procedures are done and don't recommend poking her more than once every few days. There is more risk for infection if they do. When she went into recovery, I had the nurse remove it not realizing that they were going to draw blood for labs the next day for our visit with Dr. Su.
I was really fretting about Emma getting a needle in the arm. I knew she would not take kindly to it, so I did what I had to do and put numbing cream inside each crook of her elbow. I put cream on her port too, just in case. I hoped for the best.
When you first get to the Cancer Center at Texas Children's Hospital, you sign in and get a pager. The pager is for the phlebotomy lab, also known as "Band Aid Junction." This is where you will meet the nicest phlebotomists anywhere. They are very gentle and patient--great people.
The order for Emma that morning was to draw blood from the vein. Oh no. The nurse asked her if she was okay with that and surprisingly, she agreed to it. Until of course the butterfly needle came out. Still sitting in my lap, with a blue rubber band tied to her arm to expose the veins, she turns to me and says with this sad little face, "Mommy, I don't want that." My heart broke as I assured her it wouldn't hurt. I covered her eyes with my hand and told her not to look, praying that the cream had done it's job and she wouldn't feel the sting of the needle. The nurse counted to three and Emma took a breath. To my astonishment, everything was fine. Thank you God! She didn't feel a thing and was so proud of herself. I was proud of her too.
Drawing Blood
An aside: One of the few times I clearly remember crying and feeling so heartbroken at my daughter's pain was the day of the surgery back in June. It was 6 a.m. and Emma was still asleep. A nurse came in to draw blood--again. This was about the thousandth time. And I was so emotional over it.
They had done countless blood draws over the past two days that we were there. Emma's veins are hard to find apparently. In a 48 hour period, they had poked her twice in each arm, once on the hand, twice in each foot, and once on the wrist. At some point she had two I.V.'s inserted into each little arm. And the poking was never quite successful the first time the needle was inserted. They would have to stick it in and dig around for a vein. It was no wonder she was so scared of needles.
So the morning of the surgery, she was sleeping so soundly, finally. I had to wake her up so they could do another blood draw. How would you like to wake up to that? I held her in my arms and whispered for her to wake up. I told her the nurse was here to take some blood. Emma was really groggy and barely awake. But when the needle went in, her little body lurched in pain and she let out a faint cry. Then the crying became louder. I lost it. I tried to be so strong for her, and here--on surgery day--I had lost it. My poor little child. That was a tough day. I don't think I've told that story before.
Back to the MRI
Sorry about getting sidetracked there. So Em's lab work was done and we were sent out to the waiting area to get called back to see our oncologist. We waited for quite a while and by the time we saw him, I had almost forgotten why we were there. Oh yeah, the MRI!
The first thing Dr. Su said when he came in was "the scan looks good, but there is still an area we need to monitor." WHAT??? Holy cow! So NOT what I wanted to hear. But there was good news.
Emma's six week, post-radiation MRI looked good. There was a spot that the doctors saw that they needed to watch over, but according to them, it is really nothing for us to worry about. The spot they saw was indiscernible, but likely to NOT be tumor. It was probably what Dr. Su called "blood product" meaning clots, scar tissue, or left over blood from the surgery. Over time, the area should heal and diminish and will be checked in the next MRI scan--scheduled for January 2009.
So is she "cancer-free?" I don't know how to really answer that. According to Dr. Su, yes in the fact that her tumor has been removed and she has received radiation therapy. But really "cancer-free?" I think we will be able to say for sure after a few more MRI's come out clean. For this we pray. Emma gets an MRI every three months for the first year (or two, I can't remember), then it goes to longer terms until they see at least five years of clean scans. Sounds like a plan to me.
As for the rest of the check up, Emma still is not gaining weight. She has lost whatever weight she had gained from the steroids administered during surgery, and was back to her original weight before surgery. A total of four pounds. I guess the french fries are not working well enough. We had a milkshake phase, but she is over that now. I need to find another fattening food to interest her with. But truth be told, no matter what it is, she just won't eat much--with the exception of the Cuban Chicken Plate from El Rey, her latest favorite.
I asked about the fatigue that she always feels. Poor Emmy gets so easily tired. Apparently, we are still dealing with the effects of radiation. Six weeks out and still that. But according to Dr. Su, it sometimes takes 6-8 weeks (or more) to see the symptoms pass. I'm still waiting to see her back to her spunky, vibrant self.
The next day we met with Dr. Andrew Jea, our awesome neurosurgeon, who checked her out. Dr. Jea was really happy with how Emma's recovery was coming along. He reassured us that the spot they saw on the MRI was in fact NOT the one percent (1%) of tumor left behind on the brain stem. Whew! I was worried about that one. The area of tumor on the brain stem was up high, and this spot--blood product--was somewhere on the bottom of the tumor bed. Yay! Indeed some good news.
Mike asked Dr. Jea how long he suspected the tumor was in Emma's brain for. He assumed that it might have been there since birth, growing right along with her brain. As she grew, the brain learned to "work around" the tumor. Amazing. This gave me complete hope, more than I had felt in a while. Somehow, I got my answers and I now feel relieved.
Rejoice
So really, please give yourself a pat on the back for praying so hard for our Emma! We gather our strength as a family from all of the love, support and prayers for her healing. Thank you so much. Please continue to send some good thoughts and prayers our way!
What's next? I'm not really too sure. We still continue with her therapy appointments twice a week for now. Emma's next MRI is scheduled in January, so hopefully we will have a good holiday season. Hopefully we'll be back in our house by then. Yes, yes, we are still living at my Mom's house. It has been a super slow process to get our home repaired. Day by day, I guess. Day by day.
They usually leave the needle and tubing in place until all procedures are done and don't recommend poking her more than once every few days. There is more risk for infection if they do. When she went into recovery, I had the nurse remove it not realizing that they were going to draw blood for labs the next day for our visit with Dr. Su.
I was really fretting about Emma getting a needle in the arm. I knew she would not take kindly to it, so I did what I had to do and put numbing cream inside each crook of her elbow. I put cream on her port too, just in case. I hoped for the best.
When you first get to the Cancer Center at Texas Children's Hospital, you sign in and get a pager. The pager is for the phlebotomy lab, also known as "Band Aid Junction." This is where you will meet the nicest phlebotomists anywhere. They are very gentle and patient--great people.
The order for Emma that morning was to draw blood from the vein. Oh no. The nurse asked her if she was okay with that and surprisingly, she agreed to it. Until of course the butterfly needle came out. Still sitting in my lap, with a blue rubber band tied to her arm to expose the veins, she turns to me and says with this sad little face, "Mommy, I don't want that." My heart broke as I assured her it wouldn't hurt. I covered her eyes with my hand and told her not to look, praying that the cream had done it's job and she wouldn't feel the sting of the needle. The nurse counted to three and Emma took a breath. To my astonishment, everything was fine. Thank you God! She didn't feel a thing and was so proud of herself. I was proud of her too.
Drawing Blood
An aside: One of the few times I clearly remember crying and feeling so heartbroken at my daughter's pain was the day of the surgery back in June. It was 6 a.m. and Emma was still asleep. A nurse came in to draw blood--again. This was about the thousandth time. And I was so emotional over it.
They had done countless blood draws over the past two days that we were there. Emma's veins are hard to find apparently. In a 48 hour period, they had poked her twice in each arm, once on the hand, twice in each foot, and once on the wrist. At some point she had two I.V.'s inserted into each little arm. And the poking was never quite successful the first time the needle was inserted. They would have to stick it in and dig around for a vein. It was no wonder she was so scared of needles.
So the morning of the surgery, she was sleeping so soundly, finally. I had to wake her up so they could do another blood draw. How would you like to wake up to that? I held her in my arms and whispered for her to wake up. I told her the nurse was here to take some blood. Emma was really groggy and barely awake. But when the needle went in, her little body lurched in pain and she let out a faint cry. Then the crying became louder. I lost it. I tried to be so strong for her, and here--on surgery day--I had lost it. My poor little child. That was a tough day. I don't think I've told that story before.
Back to the MRI
Sorry about getting sidetracked there. So Em's lab work was done and we were sent out to the waiting area to get called back to see our oncologist. We waited for quite a while and by the time we saw him, I had almost forgotten why we were there. Oh yeah, the MRI!
The first thing Dr. Su said when he came in was "the scan looks good, but there is still an area we need to monitor." WHAT??? Holy cow! So NOT what I wanted to hear. But there was good news.
Emma's six week, post-radiation MRI looked good. There was a spot that the doctors saw that they needed to watch over, but according to them, it is really nothing for us to worry about. The spot they saw was indiscernible, but likely to NOT be tumor. It was probably what Dr. Su called "blood product" meaning clots, scar tissue, or left over blood from the surgery. Over time, the area should heal and diminish and will be checked in the next MRI scan--scheduled for January 2009.
So is she "cancer-free?" I don't know how to really answer that. According to Dr. Su, yes in the fact that her tumor has been removed and she has received radiation therapy. But really "cancer-free?" I think we will be able to say for sure after a few more MRI's come out clean. For this we pray. Emma gets an MRI every three months for the first year (or two, I can't remember), then it goes to longer terms until they see at least five years of clean scans. Sounds like a plan to me.
As for the rest of the check up, Emma still is not gaining weight. She has lost whatever weight she had gained from the steroids administered during surgery, and was back to her original weight before surgery. A total of four pounds. I guess the french fries are not working well enough. We had a milkshake phase, but she is over that now. I need to find another fattening food to interest her with. But truth be told, no matter what it is, she just won't eat much--with the exception of the Cuban Chicken Plate from El Rey, her latest favorite.
I asked about the fatigue that she always feels. Poor Emmy gets so easily tired. Apparently, we are still dealing with the effects of radiation. Six weeks out and still that. But according to Dr. Su, it sometimes takes 6-8 weeks (or more) to see the symptoms pass. I'm still waiting to see her back to her spunky, vibrant self.
The next day we met with Dr. Andrew Jea, our awesome neurosurgeon, who checked her out. Dr. Jea was really happy with how Emma's recovery was coming along. He reassured us that the spot they saw on the MRI was in fact NOT the one percent (1%) of tumor left behind on the brain stem. Whew! I was worried about that one. The area of tumor on the brain stem was up high, and this spot--blood product--was somewhere on the bottom of the tumor bed. Yay! Indeed some good news.
Mike asked Dr. Jea how long he suspected the tumor was in Emma's brain for. He assumed that it might have been there since birth, growing right along with her brain. As she grew, the brain learned to "work around" the tumor. Amazing. This gave me complete hope, more than I had felt in a while. Somehow, I got my answers and I now feel relieved.
Rejoice
So really, please give yourself a pat on the back for praying so hard for our Emma! We gather our strength as a family from all of the love, support and prayers for her healing. Thank you so much. Please continue to send some good thoughts and prayers our way!
What's next? I'm not really too sure. We still continue with her therapy appointments twice a week for now. Emma's next MRI is scheduled in January, so hopefully we will have a good holiday season. Hopefully we'll be back in our house by then. Yes, yes, we are still living at my Mom's house. It has been a super slow process to get our home repaired. Day by day, I guess. Day by day.
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