Friday, September 4, 2009

Bad News/Good News

So my last post was right in the middle of our day Wednesday. During her blood transfusion Jael spiked a fever of 100.6. For a child with no immune system that is too high. They decided to admit her to the hospital. I was heart broken. The last thing I wanted was to have our family split up. They did blood cultures and found that one of them had some bacteria growth and so that meant that we would need to stay for seven full days to get the IV antibiotics that she needed. I cried and cried. I didn't cry because I was scared for my daughter's life, cause I really wasn't. She was in good hands at the hospital and also she wasn't hot to the touch, she was perfectly happy. It was just total disappointment of being seperated from Heidi and having Jael and I (plus Erik) trapped in a hospital for that long. And I think also just being sick of the process of all of this. Having hope and then having it crushed. Because of the bacterial infection she could not have her stem cells harvested - the entire reason we have been here for the last week. All this time away from home, all the money spent on a hotel room and food - for nothing really.

I will point out that we met some very nice nurses that day - Theresa and a girl that I can't remember her name. They were so nice to Jael and to me during all of that. And Jael had a great attitude through the whole thing.

On Thursday morning we were blessed immensely by good news. At Arnold Palmer Hospital Jael was diagnosed with Classic Medulloblastoma. It's a fast growing cancer that in kids older than 3 the standard treatment is chemo and radiation. We insisted that we did not want radiation and they came up with this alternate plan of doing a series of aggressive chemo treatments here at Shands. Because of the effect of this chemo on her blood counts she needs to have her stem cells harvested now to be given back to her after each of the aggressive treatments later. When we arrived here at Shands for the stem cell harvesting we met with Dr. Amy Smith, who is a neuro-oncologist. She informed us that Classic Medulloblastoma has only a 50% survival rate without radiation. Whereas we were told that it had 75% survival without chemo at Arnold Palmer Hospital. We were devastated by this news and also given a possibilty that it could be even worse than that. Ok, here is the GOOD NEWS. Dr. Smith came in on Thursday morning and told me that Jael's tumor was not Classic Medulloblastoma, but instead it was a much better form of Medulloblastoma that absolutely would not require radiation and had an 85% survival rate. It's the best news I've ever heard.

Then this morning we received more good news. Because Jael was doing so well, because her blood counts are so high, and because the bacteria was not showing up anymore - we get to go home tomorrow!!!!!!!!!!!!!!!!! We have to have a home health care nurse come and help us give her the IV antibiotics and will have to continue that through Wednesday. Home. Ohh...I just can't wait. :-)

I know this blog is scattered and jumbled, but its the best my brain can do right now.

Wednesday, September 2, 2009

Another Day...

So Jael and I came to Shands today on our own. Heidi needed some daddy time and really there is no need for both of us to be here unless she actually would be ready for her stem cells to be harvested. She did really well having her blood drawn and I was feeling hopeful that today they would tell us her white blood cells were up. Nope. Everything is down. Her red blood cells are so low that we need another transfusion. So dissapointing. I know what my little girl needs is to go home for a little while before her next chemo treatment starts next Friday.

I'm feeling a little sorry for myself and for Jael. And for that matter for Jan, Erik, and Heidi. Although the Ronald McDonald House is very nice, its just not home. We were hoping to go home by today and it looks like we could be here through the weekend. :-(

What really gets me is that we have so much further to go on this journey. I know I need to only take it one day at a time, but its hard to look ahead and be exhausted. God help me to rely on you for each day.

Tuesday, September 1, 2009

More Back Story

This is a continuation from my post on 8/31/09 about how this all started.

We were grateful to hear that Jael's tumor was in a good spot and the doctor felt really certain that she could get it out without doing any damage to the brain. Since then I have researched alot and have read a lot of stories about children who have not been so forunate. We spent the next day with lots of hope that this was going to be an "easy" fix that would only require surgery. Our oncologist, Dr. Guisti, came to visit on that day (August 5) and told us that the tumor appeared to be benign and he was hopeful that only surgery would be required. Again...lots of hope. We were lucky.

The day of surgery was, of course, hard. It was hard sending my little girl down a hallway without us. Fortunately, they had her pretty sedated and handled us leaving very well. The surgeon even gave us a picture of her right before they put her out of her smiling really big while looking at a video screen of herself. She was so tickled to see herself on tv. The doctor told me later that Jael's was, by far, the best reaction to it that she has ever seen. :-) The four hours we waited was torture. But even worse was the first 5 minutes and then the first hour after we got to see her. She woke up mad and writhing. We were so scared she was going to hurt herself. It was so hard to see our baby in so much pain and so confused about what was going on. All she wanted was water. She just kept yelling, "I want water!" over and over again. They decided to give her what she wanted just to calm her down, but feared she would throw up. The girl drank like 3 cups in 10 minutes and kept it all down. All the nurses were shocked.

She came out of surgery with an IV in both hands and both feet, a catheter, and a tube in her head that measure the internal pressure. Fortunately, after that initial freaking out she really didn't want to get out of bed at all. By the next morning they were able to take out the catheter and I think both of the hand IVs.

We found out that day that the tumor did not look good. It was not encapsulated and it was bloody (sorry). That is more characteristic of a malignant tumor. I was devastated. We didn't have the final word yet, but I knew it was bad. The next day they confirmed that she had medulloblastoma.

Her recovery went great. Each day she got better and better. I remember on Saturday (two days after surgery) being so excited to see her lifting her head up off the bed to play with a toy. The toy was her beloved Candy Land game that her Nanny and Grandpa got her. It was not the board game, it has big pieces that you pull a lever to get them out of this house thing. Anyways, she loved it and played it alot for that first week.

On Tuesday they did a CT scan to see if it was possible to take the tube out of her head that measured the pressure. Good news! They took it out that day. That was so freeing. Each time she went to the bathroom was so scary. It took two people - one to pick her up and hold her on and one to hold the tube so that it didn't pull on her head. We had actually had that happen over the weekend. Her pressures kept going up and finally they did a CT scan to see what was going on. The tube had been pulled out a little bit. The had to push it back in a little bit and then put more stitches in her head to keep it in more securely. They gave her a cocktail that was amazing! She was so loopy. At one point she looked at me and said, "Whats your name?" And then started laughing. The doctors said that we should probably leave because she was going to be really upset...we didn't leave and she didn't notice the stitches going in. I wish I had that whole thing on video. It was the best.

Now that the tube was out of her head the only thing she needed to do to go home was walk. She kept telling me that she didn't walk anymore. A physical therapist came in to try to help, but she would not put her foot that had the IV in it on the ground. I called our nurse to ask them to please take that IV out. They insisted that she had to have an IV in and I had to make the hard decision to have them put a new IV in her hand. I just knew that we needed to go home and in order to do that she had to walk and in order for her to walk the IV had to be out of her foot.

After it was out I tried so hard to coax her out of bed, but she kept insisting that she didn't walk anymore. Erik was really patient and kept telling me to calm down and I was so mad at him. All I wanted to do was take my baby home and he wanted to be patient! Well turns out he had the right idea. Late in the afternoon that day he convinced our nurse to let us take Jael downstairs in a wheelchair to the really cool boat that they had in an outside play area at the hospital. She wanted to get out of her wheelchair and sit on a bench on the boat. We started talking to her about walking and she insisted that she didn't walk anymore. Then we started talking about swimming, running, playing with Millie...all the things that she would need to walk to be able to do. Then suddenly she got up on her own and stood up. I was thrilled. She walked all over that boat and on our floor that day and the next. She was really unsteady and needed lots of help, but she was walking!

We went home the next day (Wednesday)! After a day or two her walking was really improved and today you wouldn't really be able to tell she had brain surgery.

I think thats enough for now. If anyone has read this far I'm amazed.

Ronald MacDonald House We Love You!


I’ll continue the pre-story later.



We are now at the Ronald MacDonald House in Gainesville. It’s a great place, albeit no WIFI in our room!! But Jael has already made friends with a wonderful little 3 year old boy who is here with his family. His sister is the one who is sick. Jael and Germaine played out on the park and had a wonderful time. It was great to see her just playing and having fun. Another perk of the RMH is that I just got a chair massage!!!! It was wonderful. I feel so relaxed. 

Last night I noticed that Jael’s bandage on her port was open on the top. This means that anything can get in there and cause an infection. This is especially bad since her white blood cells are so low. I taped it and decided we would be returning to the hospital today to get it redressed. Her port goes directly to her heart, so we don’t mess around with it. This would only be her second time changing the bandage. The first time was horrible. She screamed and cried the whole time. Very traumatizing for all of us. I knew going into it that it would be bad…and it was. One nurse volunteered to do it, but then quickly changed her mind when I told her about her reaction last time. Fortunately, the other nurse was up for the task and did a great job. Jael screamed and kicked and cried. It was horrible again. But as soon as it was over she was fine and we headed to Dairy Queen for her promised ice cream cone, with a spoon.

Our biggest struggle right now with Jael is getting her to eat. Jael has always been a great eater! She could eat two pb&j sandwiches and then ask for another. When she and her cousin Millie would eat together it was hilarious…Jael would be done in less than five minutes and Millie would still be struggling to eat it all 30 minutes later. She had a great appetite. Now…I feel fortunate if she will eat a bowl of cereal, which seems to be the only thing she is willing to eat right now. Besides the ice cream cone with a spoon. And she never even gets to the cone on her ice cream. I guess I better get to the store and get more Trix (ugh! – thanks to a nurse at the hospital, now all she wants is the red cereal) and almond milk (helps to make me feel better about giving her Trix for three meals a day).

Tomorrow is another day of going to the clinic to get her blood drawn and hoping that her white counts are high enough that we can start the stem cell harvesting. 

Monday, August 31, 2009

The Journey

I haven't posted in a long time. I have lots of good excuses, but none of them really count because even before I had good reason I still didn't blog.

BUT I now have a GREAT reason to blog. My family is on a journey that I don't ever want to forget. Someone gave me a journal to write in, but I know I won't do it. Typing is so much easier and I can say so much more than I would handwriting. So I'm going to use this blog as my journaling through this journey. If you've chosen to join me, I thank you.

I'll start from the beginning, even though we are nearly a month into this journey. I might do recaps from time to time so that I don't forget some of the more important things that have happened over the last 27 days.

At the end of July my little princess, Jael, started to complain of headaches. We thought it was weird because she had never said a word about her head hurting and also she is only 3. What 3 year old has headaches? After 2-3 days of mildly complaining I called the doctor. The next day we went in for a check and turned out she had strep throat, which commonly causes headaches. Ok...so thats why. After a few days on antibiotics she will be fine. Day after day after day goes by and her headaches just keep getting worse. Truly it was torture. I told someone during all of this that it was like watching someone physically torture your child right in front of your eyes and you can't stop it! She would cry, I would cry. Mostly the headaches were bad at night and then she would be fairly normal during the day. Finally after a week of treating her for strep throat our doctor decided to admit her to the hospital for a CT scan, to watch her vitals, and then we would get an MRI the following day. I didn't know what was causing these headaches, but I never expected what I was told. "Jael has a mass on the back of her head." A tumor?? "Yes, a tumor." At that moment my world spun and spun. I had moments of truly feeling like I was in a bad dream and that I would wake up. She was sleeping when they told us and she looked so perfect. How could my perfect little girl have a brain tumor? NOOOOOOO! I wanted to scream. I wanted to take her up in my arms and get out of that hospital.

Of course we didn't. Our amazing pediatricians who came to personally tell us the news and stay with us, arranged for us to go to Arnold Palmer Hospital in Orlando for treatment. I went with Jael in the ambulance and Erik came behind us with his dad. As soon as we got to the hospital they wisked her away for her first MRI. I'll tell that story some other time. Then about 4 hours later the nuerosurgeon, Dr. Keyna Johnson, came in to tell us about our daughter's tumor. Our surgeon is wonderful!! She brought us out of the room and showed us a picture of the tumor (which I now have and will post a pic of this when I can figure out the software the MRI photos came with). We got good news. It was right on the outside of the brain. "Best possible place to have a brain tumor." Surgery was scheduled for the next day at 9 a.m.

Jael is back from the store...so will continue my story later. :-)

Thursday, July 16, 2009

I'm baaaaaack....

Hopefully. My bestie Karen has inspired me to start blogging again.

Little Erik left this morning after a shortened summer visit. It was great to have him here again - though it truly always leaves a void for us in our home after he goes. Jael said tonight in the car as she looked at Erik's seat between her and Heidi's car seats (all 8 inches), "Why Erik not in his seat?" And I told her that he went bye-bye to Kentucky and that we won't see him for awhile and she says with a pouty face, "Yeah, we're gonna miss him." It was so sweet. This is probably the first year where she is really understanding what is going on. Today she spent the day at Auntie's house (where she spends every Thursday)so I don't think the reality of it has quite hit her.

Speaking of my kids...haha. Tonight Erik and I went to Publix to pick up some food for Bible study. We usually always go to Wal-Mart but we decided for a more relaxing shopping experience since we only had to get one thing. Jael quickly spotted their race car carts and the girls had so much fun in them. Heidi just sat there moving the wheel back and forth really fast and smiling huge. Everytime we went near the checkout aisles she would squeel in delight at the sight of all the balloons they had displayed. Seriously, with as much fun as she was having you would have thought we were at an amusement park. I'm definitely going to have to remember that one. One last Publix story and then I'm going to bed. As we were checking out Jael asked our cashier what her name was...the cashier was very friendly and replied to her and asked her what her name was. Then Jael spotted her fingernail polish and asked her if she had nail polish on and she said yes. And then Jael looks towards the cashiers feet and asks her if her toes were painted and she said yes. As I type that it seems so trivial and ordinary, but it was so cute to see her engaging this woman in coversation all on her own. I also think its interesting that she notices stuff like fingernail polish...she is so her Auntie's niece. I hardly wear the stuff myself.

I will try and post some pictures and a GREAT video and Jael, Millie, and little E from last night in the next day or two. Erik cancelled our internet so now I'm going to have to get creative to blog or do anything online.

Tuesday, December 30, 2008

A Picture and Two Videos

Here is my new favorite picture...although a bit blurry.

This video is from last night. Heidi and Gracie were being too cute. I think Jess said that Heidi's mannerisms reminded her of an ape, haha, but it could have also been her dad that said that.



Here is one more that showcases Jael's singing talents and her ability to boss her cousin, Millie (or Mae as Jael calls her), around.




Monday, December 22, 2008

Christmas Lights Adventure

We had our 2nd annual "Going To Walk Around A Neighborhood With Really Cool Christmas Lights." Lots of fun. Bittersweet since I think mom initiated the first annual "Going To Walk Around A Neighborhood With Really Cool Christmas Lights."

The first two pictures are from the first annualGTWAANWRCCL. On the first one I messed with the exposure so that you can see mom's face a little better - she is just filled with joy looking at Jael experience this for the first time. The second picture I think she looks so stinkin' cute. Like one of the kids so excited to be on Santa's sleigh and staring at Millie. It definitely seems like she likes those grandbabies.

I'm pretty sure if you click on the pictures you can see more details.

So last night was really fun. My girls and I, Rob & Jess and girls, and Doug & Tory and girls (minus Hannah) all went. When it came time to ride on Santa's sleigh Jael was too scared to get on. The first picture below is of Jael and the babies sitting the ride out. I tried to get Jael to look at the camera, but she was far too concerned with Santa's sleigh coming back around to possibly look at me. The second picture is of the group who went on the sleigh...well you can't see everyone. And the last is of Jael's Uncle Doug giving her a ride on his shoulders.

MERRY CHRISTMAS!

Friday, December 19, 2008

"Get back here, now!"

This is how we started the day this morning, only the words did not come from my lips. Jael declared this to me with a mother's tone as I walked away from my bed with Heidi in my arms. Apparently she wanted me to pick her up and carry her out of the bedroom as well. She also pointed right next to her to emphasize where "here" was. To make a long story short, she eventually ended up in her bed in tears. We did recover with a little love and a showing of Veggie Tales "The Christmas Star."

Sunday, December 7, 2008

New Videos

I know I'm a lame blogger, but I'm definitely not worse that my sister and brother-in-law. Here are some videos. The one with Jael being a pirate is from Halloween day. The one with Jael and Millie playing with the balls is from mid-November and the one with Heidi and Grace is from yesterday. Hope you enjoy.