Emotions and such...

Ugh. Tonight was a hard night emotionally. We are on day 2 of her chemo this round and the first half of the day was pretty good. By about 2 p.m. she started getting unreasonable and just all out demanding. I did really good coping until bed time. She hadn't had a nap and I could tell she was really tired. I so badly wanted her to go to sleep. Just emotionally I was exhausted from dealing with her all afternoon and evening. The word volatile comes to mind. She freaked out over wanting to have her new pink hat in bed with her. I at first allowed the hat, but she continually kept playing with it and would not listen to me about putting it down. I removed the hat from the bed, which sent her into a tailspin of complete hysteria. She hit me in the face at least twice and just kept screaming. Everything in me wanted to give her the hat back. But I knew that two things were true. One was that if I gave her the hat back she would continue to play with it and she would not fall asleep. Two was that if I gave into her tyraid that I would be encouraging her to react that way in the future to get what she wants.

I also know that there are all sorts of drugs in her body making her feel crazy things. Chemo drugs, zofran, mesna... I absolutely extend grace to her and do not hold her to the same standard as I did before. Not because I think that because she is sick she can act how she wants, but because I think that her being sick is causing her to act this way. She is only three. How is she supposed to handle living in a hospital, being hooked up to an IV pole 24 hours a day, and having people coming in constantly to check her and sometimes hurt her? How is she supposed to handle the way these drugs make her feel? It so unfair. The second she feel asleep next to me in bed I absolutely broke down emotionally. I felt guilt for the part I played in her getting so upset, I felt such sadness for my little girl who is having to handle things that she shouldn't have to. I feel cheated out of having my mom by my side, by my daughter's side, as we go through all of this. I could list so many more things.

Still I know that tomorrow will come. The sun will rise. And when she wakes up she will smile when she sees me. She will tell me she loves me at least 10 times tomorrow, just like she did today. We will get through her last day of chemo, and God willing we will get through this without any vomiting. And I will give God the glory. Thank you God that Your mercies are new every day. Heal our hearts. Give me the strength and wisdom that I need to be the best mom Jael needs for tomorrow.

Chemo Cycle 2 Starting

Today was crazy! Last time we started chemo it was following Jael's port surgery so we didn't have to come for it the normal way. Today was the normal way. And it really sucked. We start out in the clinic to be seen by the nurse practitioner, followed by the doctor. Then Jael had to get bloodwork done and a hearing test (will tell that story in a sec). Then we waited. And waited. And waited. Apparently they were waiting to hear from our admitting floor that a room was ready. We were done with everything by like 10:30 a.m., but didn't get admitted until 4 p.m. So lots of waiting around and trying not to lose my mind over it.

Also, Jael has to do a 24-hour urine collection before each chemo to make sure her body is hydrated enough to receive the medicine. We started on Sunday morning. I had to bring it in on ice. We started a little bit late on Sunday so we weren't going to be done until about 1 p.m. today. They set us up in a bathroom and let us keep her urine on ice until we were done. Well at 12:45 p.m. I went into the bathroom with Jael to do the last collection and someone had dumped the urine and thrown the container in the garbage. I was so upset. It was alot of work to keep her from just going like normal. We ended up finding out that one of the nurses sent it off and didn't know that it wasn't complete. We are doing another collection and hopefully will start the chemo by 2 a.m.

She is doing good and looking really cute in her new pink Arnold Palmer t-shirt and hate. Only paid $5 for both. All she wants to do is watch Spongebob Squarepants...haha. Makes me crazy, but keeps her happy. They rehooked her up to the IV, which she will have to stay attached to until we leave. She was not happy about that. She didn't yell or cry, just was sad and asking why. :-(



I'm soooo sad about leaving Heidi. She absolutely broke my hear this morning. She is supposed to be coming up with Erik tomorrow so hopefully we will get to see her then. She made quite an impression on the nurses here last time...they have all been asking where she is. So cute. We decided that one of us (Erik) should stay home with Heidi. It is very hard on her to be here.

God, please give us the strength to get through this week. Let the chemo kill any cancer and let it not damage my little girl. Help her to not have any bad reactions to the drugs. God let her do so good that the nurses and doctors have to ask the question why. Let us be bold in telling them about You and Your faithfulness. Amen.

And back again...

I feel like I should blog, but don't really have anything major to report. Jael is doing great...feeling great. We spent the evening over at our friends house tonight and they have three older girls. Both Jael and Heidi had such a great time. It makes my heart so happy to see Jael just having fun. Not being nervous, shy, sad, reserved, demanding. All these mostly new things about her. Well maybe not new, but they went from being rare to being the norm. But tonight she shined. She played and laughed and left there lighter on her feet than when we arrived. Thank you Olivia, Bailey, and Lindsey for loving my girls tonight.

Tomorrow a friend of mine, Jenna, is blessing us with her great photography skills. She is coming to our house tomorrow to take pictures of the girls. I really want to capture this time with some good photographs, not just my snapshots. Really looking forward to it. Then we are going to the Rainbow park with Grandma Jan, Trinity, Millie, and Gracie! Should be a great day. :-)

My chest is starting to tighten up at the thought of Monday coming. Cycle two of Jael's chemo starts on Monday. We have to arrive at 9 a.m. for her to get a hearing test (one of her medicines can affect hearing) and a battery of other tests just to keep an eye on her. Then she will be reattached to her un-friend the IV pole for at least 3 days, if not 4. And the anti-nausea regimen will make my little angel agitated, hostile, drowsy, and just plain not herself. I'm sorry. I guess I'm having a little pity party. I just hate that this normalcy will be wripped out of her grasp in just two days. God give my baby peace in her heart and understanding parents. Please God let her handle this chemo as well as she handled the last.

Thank you

Since the day we found out that Jael had a tumor, we have been amazingly blessed by our family and our church family. People have come out to visit us, donated money, prayed, passed on our story to others so that they can pray, encouraged us, and simply loved us through. As I write this my heart wants to explode. Throughout this we have been asked many times how we can get through this. I have two answers: first is that God gives us the strength and second that we are strengthened by the outpouring of love and support from our family, church, and friends. Every response to a Facebook status, text message, visit, financial help, phone call feels to me like God loving us through His people. So, if you are reading this - thank you!!! We love you and are forever grateful.

We have also been given the opportunity to pass this love on to others that we meet on this journey. My mother-in-laws Bible study class is taking up money each week that we will use to bless other parents and children who are also going through cancer and tumor treatment. We met an 11 year old girl named Ashley at the Ronald McDonald House. She is bald and she is beautiful - a smile that lights up the room. I was touched by her the first time I laid eyes on her. Her birthday was on Wednesday and I just knew that we needed to love on her. I bought her a birthday card and a gift card to Toys-R-Us. Yesterday morning she was having breakfast with her dad so took the opportunity to give her the gift. I explained to them that our church had been collecting money to bless other kids and parents. She loved her gift and smiled so big. Her dad was blown away that our church would do that. It was an awesome way to be God's hands that day. We also gave a couple of food gift cards to another family who is going through the same thing...but you would have to ask Erik about that one.

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.

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.

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. 

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. :-)

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.