Finally!

Hey, everyone! I know it's been quite a while since there's been any updates, and I'm sorry for that. We didn't have internet at home. However, I'm esctatic to say that.....DAXTER IS OFFICIALLY IN REMISSION!!! My baby is healthy even compared to normal kids now. He is running all over the house and starting to talk and letting us know that it's about time to start potty training. He's eighteen months old and developmentally on track. Daxter's even in the 93 percentile for height and weight compared to other kids his age. Plus, he has grown about two inches of BLONDE hair! There is a slight bone defect under his left eye caused from when he had cancer so he'll need to start seeing an eye specialist to make sure it heals alright. Daxter will also still regularly see his oncologist and will regularly have scans to make sure nothing is coming back. Daxter is living proof that God is in control! Thank you all for all of the support and love you sent our way; I am absolutely positive that it helped. There's no way I can adequately tell you how much your prayers and thoughts meant to my family and me. They were and are priceless.

Love always
Bailey

Burlington Coat Factory

Hey, this is Bailey writing again today. Earlier today I went to Burlington Coat Factory to see if they had any cheap shoes since I just had a pair of flip flops, and when I went to pay, the cashier made me cry. After she told me my total she asked me if I would like to donate any money to help fund cancer research. So, with tearing up eyes I said, "Yes, I would because my eight month old son was recently diagnosed with neuroblastoma, and we are living at St. Francis hospital while he went through chemo and is fighting infections." She said she was so sorry and then her eyes teared up, too. Whenever I think that my baby's cancer has finally sunk in something like this happens and it feels like another slap in the face that Daxter is sick. I know he's getting better, and in the last few days it's been such a turn around from how he was just one week ago that I know he's being blessed. He's playing again and he's more alert than he was. He hardly ever needs morphine. Last night he also had a tiny peice of a rice crispy treat, and he got so excited. After he chewed on it for a while and then dropped it on the floor he was just so full of kisses and hugs. He hasn't tried to give anyone a kiss since way before we even got to St. Francis so it was so heartwarming to see him try. I'm so excited to see him acting happier, but at the same time I'm terrified to see him down again. It breaks my heart to see Daxter hurting so bad that he doesn't even want to be touched, especially since he's usually such a snuggler, like he hurt a week ago. Right now the days are getting easier, but I know they will get hard again. However, I know they will get happy again, too. I also know that soon the days will get happy and stay happy. I love him so much and I am so thankful that you all are so supportive and full of love for not only him but the whole family. It makes it so much easier knowing that people are so supportive of our family.  Thank you.

Bailey

Daxter's big T.V. break!

 Sunday, October 24, 2010

Daxter was just on KAKE10 news! The article is on the KAKE10 news website and so is the video clip.

http://www.kake.com/home/headlines/Fundraiser_To_Help_Baby_With_Cancer_105639113.html

Who needs hair anyway?

Hey, this is Bailey writing again today. Since the last time I've posted, not too much has changed really. We do know that the doctors found ecoli in all three blood samples, however they think the strept or staph ( they've told us both) might be a contaminate because they weren't in all three blood samples. So they took more blood to try to find out. His platelets are up a tiny bit, but his white blood cell counts aren't. They've given him more blood and they've given him an IV for food. He also has some sort of bumps on the back of his head that they are treating with an ointment. His sodium and potassium levels are still out of order. He's also started throwing up. Plus, this morning his hair has started falling out. For some crazy reason this has been the most emotional development lately. I knew his hair was going to fall out, and I know that it's going to grow back. However, every time I pet his head and I get hair I cry a little. It's so silly though because, while I'm crying, I feel ridiculous because I can't quite pinpoint why I'm crying. I'm not sad because I know that it will grow back, and I'm not surprised or mad because I knew that it was going to. It's just hard. Other than that, not much has really changed. Thank you all for your comments and reasurances. It really does help to hear how supportive everyone is and it helps hearing that other people know exactly what we are going through. Thank you all again.

Bailey

Back In the PICU

Hey, everyone. This is Bailey writing. Finally, got my computer to let me on the internet. Well, we are back in the PICU like Kristin mentioned, and they found out that Daxter has an infection on top of everything else.  The infection is causing him to have a fever, 103.1 last time they checked. They say that it looks like a strept infection, but they haven't been able to discern for sure what kind of strept infection it is. They took a couple of blood samples from his arm and from his hickman on his chest trying to find out whether the infection is in the hickman catheter, too, or if it's still just in his blood. If the infection is in his hickman catheter, they will have to take him back into surgery to remove the old hickman and insert a new one. Currently, they are giving him several medicines trying to quell his nausea, bring up his blood cell counts (which is in the form of a shot in his leg every day), lower his heart rate, and a few antibiotics to fight the infection. They are also giving him pain medicine and an IV with sodium in it again (the doctor said he has to correct the sodium levels because the move upstairs messed his levels up) He's also on an IV full of platelets, because his platelet level is 6,000 and it should be 100,000.  His potassium levels are out of whack too, so they are giving him something to try to fix that, as well. Hopefully, my computer will cooperate with me better and let me post more frequently. Thank you all again.

Thank you,
Bailey

Happy Day

Hey, this is Bailey writing again. Today was a really good day. Daxter got taken off of the IV with fluid because he started eating enough that he no longer needed it. It's so exciting that his appetite is coming back, and it's reminding me of his appetite before he got sick. He ate everything you put in his mouth. Today, he ate at least one bottle every three hours! He's also been the happiest I think I have seen him in weeks. He just smiled and giggled and was so interactive with Ben and me. We played peek-a-boo and "gitcha gitcha gitchaa" game (which consisted of whenever he lifted his arm straight up I would grab his hand and wiggle his hand saying 'gitcha gitcha gitcha') He just laughed and laughed. It was so heartwarming to see my baby happy and not hurting as much. The doctor told us that Daxter caught a respiratory virus in the nose that showed up in his blood test. However, he shows no sign of a severe reaction to the virus. We're still not sure of definite days they are going to be doing the scans, but his tummy isn't swelling more. It's the same size it was this morning. Thank you guys so much for wanting to stay updated on my son; I can't say thank you enough. I am so grateful for all of you.

Bailey

Update

Hello, this is Bailey again. Daxter is officially off of the chemo IV now. They won't put him on another chemo IV for about three weeks depending on the scans they plan on doing. I havn't been told exact times for the scans yet but they plan on doing several in the next few weeks. Daxter's body is still handling the chemo very well, but the chemo won't be completely out of his system for  another 48 hours. Unfortunately, he now has a cold. The doctors are worried that it might turn into a very bad pneumonia since his immune system is pretty much nonexistant. However, he doesn't have any sign of a pneumonia yet, which is fabulous news. Thank you all again for all of your support and love.

Bailey

Pictures

Debby's thank you

Hey, everyone, this is Bailey again. Right before my mother, Debby, had to leave the PICU room she asked me if I could type up a post for her that she had written on a piece of paper. Here's what she wrote.

"Hi, my name is Debby, and I am daxter's grandma (Bailey's mom). I just wanted to say that with Bailey and I working with the public (Wal-mart) the way we do, we see so many people that are mean, rude, or just so wrapped up in their own life and their own problems that we sometimes forget there are still so many truely wonderful, caring people out there. Since we found out about Daxter's cancer it just blows my mind how many people we have came into contact with through the hospital, computer, or in person that are so loving, supportive, helpful, and generous. I just wanted to say thank you . THANK YOU. Not just from the bottom of my heart but from the whole thing.

Thank you,
Debby"

Complications

Hey, everybody, today it's Bailey writing. Today we found out that Daxter's blood cell counts are decreasing and are likely to keep going down for a couple of weeks. My mother, Debby, developed a fever blister and can no longer be in the room with Daxter and us. Also, my grandma developed a slight sore throat, whether it's from dehydration or a sickness coming on is irrevelant, therefore she can't be in the room any longer either. It's down to Ben and myself. I know we will be able to do it; we just have to work on our patience with each other. Ben was planning on trying to go back to work on an intermittent leave of abscense, but now he no longer can. He has to stay here with Daxter and me. Right now they are giving Daxter another blood transfusion to help stabilize his blood counts, and he's still getting regular breathing treatments along with his chemo. The doctors decided to extend the continuous chemo IV until Friday since his body is tolerating it so well. Everyone is still hopeful and we all still know that everything will be okay. Thank you, everyone, for all your prayers and words of encouragement and God bless you all.

Bailey

Rainbows

Hello, this is Bailey writing again today. Last night my husband went to look out of our PICU room window and right outside were two beautiful, bright rainbows. Huge rainbows that went clear across the sky. The rainbows really brought hope to my family and me. My Grandmother in particular was touched and just knew it was a clear sign that God is watching out for us and trying to tell us that everything will be okay.

Bailey

Finally a good day!

Hey, everybody. This is Bailey writing today. Daxter's chemo is going very well with no bad reactions. He's not out of the initial period of risk yet, but so far everything is good. Daxter was up whining almost all night, however he showed signs of his healthy self in the morning. He's dranken almost six full bottles! All the bottles have stayed down, which is even better! He even talked happy to the television for a little while. It's so exciting and heart-warming to see my baby returning to normal. Just hearing that babbling made the entire day so much better. Today, an eye specialist came to look at his eyes but we havn't heard anymore information about that yet. The doctor did tape his right eye closed so that it can have a chance to replenish moisture. I know everything will be okay. Thank you, everyone, for showing how much you care about my baby and my family. It makes a world of difference.

Love you all,
Bailey

EKG and Giraffes

Hey everyone its Bailey writing this morning. Daxter had a good night, he was still on the morphine through the night but is now completly off it. The doctor came in and said his sodium levels were very low and so they are starting him on sodium. They are also going to give him the other half of his blood transfusion this morning. They also did a EKG to determine his heart rate function before starting chemo so that they can determine if the Chemo starts affecting his heart. They are also going to do another Cat Scan to determine if the tumor behind his eye is growing. He has four tumors, one behind his eye, two in his chest, and one large one in his abdomen.  They biopsy is back and Daxter does have Nueroblastoma cancer and will start chemo tomorrow most likely.  They can not operate on him him because of how big the tumors are and they can't radiate the tumors. So they are starting the chemo tomorrow but they have to watch him for the next 24 to 48 hours because they are most critical. They say that once the tumors start breaking down that it could overwhelm his body so they have to make sure his electrolytes are good before starting which is why they are waiting 24 hours before starting chemo.   They think he may have a picked up a virus becuase he is coughing and has a runny nose.  They did a nose swab to check on this.
I am excited to see him more awake and playing with his giraffe and pink bug which are some his favorite toys. We are anxious to see the results from the Cat scan, swab, and to start the chemo. My husband and I are scared to death but we are not giving up faith and the hope we have in Jesus Christ. We know all things are possible through him and we believe in the power of prayer.  I want to take this time to thank you all for your prayers, love and support through this time. I am overwhelmed by the amount of prayers and love we have gotten and amazed at how God is working to spread Daxter's name all over the world. Please continue to pray for him especially during the next 24 to next 48 hours which are critical.  Pray that his body accepts the chemo and that he responds well to it and that it doesn't overwhelm his body.
We love you all!

Bailey