Saturday, September 26, 2009

This is how I feel...

Gainesville Take Two

We are back in Gainesville for another try at harvesting Jael's stem cells. This time its just Jael and I; Erik and Heidi stayed home. We got in yesterday and started out in the hospital getting bloodwork done and waiting endlessly for the doctor (she apologized profusely, which is nice and rare). Her counts were where they had expected them. They scheduled us to come in tomorrow (Sunday) for a blood transfusion to hopefully have her set up to harvest as early as Monday. Could also be as late as Wednesday.

She has been complaining of a headache since the last day of her chemo treatments last week. She has been pretty consistently pointing to the bottom of her main scar when asked where it hurts. Yesterday she started saying it hurt at the top of her head. That is worrisome because it could indicate fluid on the brain. From everything I've read online it looks like the only fix is a shunt in her head that would then drain into her abdomen. Let me be clear that the doctors don't think that this is the problem - but is something that has been mentioned as a possibility. Praying against that. We go back again on Monday to get bloodwork and hopefully get on the machine. We will see the doctor that day so if her headaches are still in full force I will be asking for a "quick" MRI that the doctor mentioned would be able to see fluid.

Last night was the first night I had to give her a shot. Erik has been in charge of that since day 1 and I've been so grateful. Well since she and I came to Gainesville by ourselves it was entirely up to me. Oh wait...the first shot was on Thursday night so that I could do it while Erik was around the first time. Can I just say how much I hate it? I just gave Jael her shot and she was so brave, but it just sucks. Hopefully in a few days we can stop. Once her white blood counts go up we don't have to do the shot anymore.

We had a great day today! We played at the park twice...

This park is stinkin awesome. So many fun things to climb on, a merry-go-round, teeter totters, and tons of swings. Makes the rainbow park look LAME. ;-) It was great fun and wore her out wonderfully both times. Now we are chillin' out for the night. Here is a picture of her watching her new Dora movie (thanks Baby P) in her new Spongebob shirt.

Tuesday, September 22, 2009

Mean Boys

The girls were restless tonight and I really wanted to get them out of the house. Our usual parks are always very busy and Jael's blood counts are way down so they were out. I remembered a park in Port Orange near ball fields that only ever had a small handful of kids playing at them when we went.

We had so much fun! Swinging on swings, sliding down slides. It was great. There are two parks. One for younger kids and one for older kids. Jael asked if we could go to the older playground area. There were a few boys playing there, as well. After some swinging on the big swings Jael decided to go climb up the playground set where these boys were. When she got to the top they started staring at her head and I told them about what happened to her. One of the boys said, "ew." Then this one kid said very loudly, "Her head is disgusting." I instantly saw her joy get knocked out of her. She wanted to be held right away and we left. (We were planning on leaving anyways.) I told the boy that what he said was not nice and he tried to recover, but the damage was done. When we got in the car I said to Jael, "You know your head is beautiful." Her response, "Not it's not." I asked why and she said because of her owies! What??? I was totally convinced that she was unaware of her physical appearance through all of this. I kept telling her she was beautiful and she kept saying that she was not. I wasn't sure if she was completely understanding what she was saying so I asked her, "Do you think your head is disgusting?" And she said yes. I was shattered. I cried openly and told her that it broke my heart that she didn't think she was beautiful because of her owies.

I turned the music up and called Jess to recount the story. While telling her Jael joyfully yells from the back seat, "My head is beautiful mommy!" :-) Not sure if she was trying to say what I wanted to hear...I just hope that she believes me. I've said it a hundred times since then and will say it a hundred times more. Cancer sucks. Stealing my daughters confidence in her beauty long before she should even be aware that it matters to this world.

Thursday, September 17, 2009

Stories for today...

Today was a very full day. Started out with at 4 a.m. with Jael wetting the bed and then again at 8 a.m. They are filling her so full of fluids all day/night that she can't control it. She even managed to have three accidents during the day while she was awake. I'm not sure if that is a bladder control problem or a regressing emotionally problem. Nonetheless, she has been in a pull-up for most of the day.

She started her final day of chemo at around 10 a.m. Well, technically it started with medicine to prep her for the chemo. Today she got a chemo drug called cisplatin (sp?) and its the worst that she gets. Most likely to make her throw up, lasts for 6 hours (the rest don't last for more than 1 hour), and requires a ridiculous amount of fluids in order to flush it out of her system as quickly as possible so it doesn't damage her bladder or kidneys. Scary stuff. So far she is doing good, but they say that this medicine will make a person sick 12 hours after up to 72 hours after she has it.

Late this afternoon our nurse mentioned that her head didn't look great. I kind of brushed the comment off at first. Then I looked at it and saw that one of her scars looked swollen and she had a knot of sorts on the bottom of her head. Of course my mind starts going to the worst possible scenario - regrowth of the tumor. It seemed like forever before the nurse practitioner finally came in. She said that it looked like maybe a slight infection on the wound and a swollen lymphnode below. Better than a tumor, but really don't want to deal with another infection. The doctor came and said that we will just watch to make sure that the swelling doesn't get bigger on either spot and look out for a fever. A fever will keep us in the hospital. So far so good. Someone from the neurosurgeons office is going to be coming by tomorrow to look and they mentioned the possibility that they would have to extract some fluid out to see what it is. Hoping that is not the case. My little girl (and her mama) needs to go home and see Heidi and Daddy. At the same time I do not want to go home and then have to rush back here because of a high fever. God give us wisdom.

I had a great opportunity to talk to two moms today. I don't know the names of the moms, but their sons are Jair (maybe 7) and Ray (3). We started to talk about our children's sicknesses. We cried together and encouraged one another. At one point I asked Ray's mom about his prognosis. She choked up and asked me to give her a few minutes and she would tell me. I took that opportunity to go and get the Target gift cards that we purchased using the money that was collected during Linda's Bible study classes. I explained why I was giving the cards and Ray's mom began to cry and hugged me. She told me that I was filling her with the Holy Spirit. She reluctantly took the gift card saying that she was going to pass it on to someone in greater need than herself. She then translated to Jair's mom who only speaks Spanish. She too began to cry and said that she needed it very much. It was just wonderful to be with other moms who are going through similar situations and be vulnerable to each other and support one another. Please keep both of these kids in your prayers. I'm not sure of Jair's prognosis. I didn't get all of the information about Ray's cancer, but he only has a 50% chance of survival. They are doing 5 rounds and they are only doing that much because they don't know what else to do for him. He has some sort of rare cancer. They have been here at the hospital almost constantly since April, going home just three times an average of 10 days each time.

Wednesday, September 16, 2009

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.

Monday, September 14, 2009

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.

Friday, September 11, 2009

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.

Saturday, September 5, 2009

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.

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. 