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Click here to go back to the main page. Saturday, July 22, 2006 9:29 AM CDT Hello to everyone! Sorry it's been so long since my last update. Everything is going great. Bailey had an MRI on July the 20th and the it was clear. We are now 2yrs out of treatment with no new growth. PRAISE GOD! He will have another MRI in January. He is growing so much. He will start a 3 day preschool in August and big sister Morgan will start kindergarten. We went to Myrtle Beach, SC for our vacation and Bailey loved the ocean. This is the first year he played in the water and sand and loved it. I just Praise God for His hands on Bailey I know that at anytime things could go bad. I will continue to have faith that God has healed Bailey and left him here with me for His purpose. We contiue to pray for our caringbridge friends and hope you continue to pray for us. Until next time...
Saturday, July 22, 2006 9:29 AM CDT Hello to everyone! Sorry it's been so long since my last update. Everything is going great. Bailey had an MRI on July the 20th and the it was clear. We are now 2yrs out of treatment with no new growth. PRAISE GOD! He will have another MRI in January. He is growing so much. He will start a 3 day preschool in August and big sister Morgan will start kindergarten. We went to Myrtle Beach, SC for our vacation and Bailey loved the ocean. This is the first year he played in the water and sand and loved it. I just Praise God for His hands on Bailey I know that at anytime things could go bad. I will continue to have faith that God has healed Bailey and left him here with me for His purpose. We contiue to pray for our caringbridge friends and hope you continue to pray for us. Until next time...
Monday, February 27, 2006 2:57 PM CST HAPPY BIRTHDAY BAILEY! Tuesday, November 8, 2005 8:26 AM CST Hello to all! I have GREAT news. Baileys scan was clean!!! The Dr said it looked good last time and even better this time so we couldn't be happier! Everything went well and he did much better with the sedation this time. I just thank God for another clean scan. God has blessed us so much with Bailey he is our miracle child. I will never forget those word from the Dr that Bailey would only live for 1 yr or so, and just look we are 2yrs and 4mo from that day. Praise God! I know that things can change in an instant, but for now we will live everyday thanking God for our blessings. Please continue to remember those who are still fighting this fight, and pray that Bailey will remain cancer free forever! Thank you so much for your prayers and support!
Tuesday, October 24 7:13 AM CDT MRI has been changed to November the 7th due to double ear infection and sinus infection. So I have a sick child plus another 2 weeks to wait on results. Thanks for checking in and for all your prayers. Will update on the 7th.
Tuesday, July 19, 2005 8:39 AM CDT Hello to All!! Hope everyone is having a great summer, and that all are doing well. I have a lot to update so I'll start with the best news first! On Thursday July 14 Bailey had an MRI that the Dr said was good if not even better than the one before. So we are so thankful for that report! He will have his next scan in October. On to other news we were able to go to Disney World from July the 5th to the 9th and had a great time. Bailey is still talking about the trip. He is a big fan of Thomas the train and we were able to ride a train at one of the parks and before it would leave the driver would say " all aboard" and that is one of Bailey's favorite things to say now. We were able to meet Mickey and Minnie and all the other characters, and Bailey and Morgan hugged and kissed them all. It was a great trip. We are now getting ready for out next vacaction to the beach on July 24th and we are all looking forward to that. Tuesday, June 21, 2005 8:44 AM CDT Hello to all! Hope you all are doing well. We are doing great. Bailey has healed up well from the removal of his port. He walked around to people and would pull his shirt up and say "they pulled it out!". I guess he was as happy as we were to have that gone. He has still not had any vomitting episodes so the medicine has worked. He will be taking it for a couple more months and then we will try to take him off. He will have his next MRI in August not sure of the day yet. Monday the 20th was his first year mark of being off of chemo. We are so thankful he has done so good. Saturday, May 21, 2005 12:57 AM CDT Hello to all! My computer has been down for a week so haven't been able to update. To those of you who don't know Bailey had surgery on Friday to remove his port. It was no longer working so it was time for it to come out. He done really well, and hasn't showed any signs of pain. He was in rare form after surgery. I guess it was the meds. he was very hard to handle. He was kicking, screaming, and even hit me in the eye, but as soon as we got him in the van and turned Jay Jay the Jet Plane on and gave him some juice he was fine. He hates any part of a Drs office or hospital, but I can't blame him. So now we will just have scans every 3 to 4 months. I can't believe that finally after 2 years of going back and forth to the Drs that we only have to go once every 3 months, what a blessing. I almost forgot about the vommiting episodes. Praise God Bailey has now went 26 days without having an episode after starting his medicine. He was having them every 14 days, but the meds seem to have stoped that. While everything is great here I am sad to report that some of our other buddies are not doing so well. I ask that you please pray for Gage and Spencer and their families. It seems that there are no other options for them except to keep them comfortable. I am so heart broken for both families... please just say a special prayer for both families. Thanks for checking in on us and always remember you never know what life holds for you and your family so hug your loved ones and let them know you love them.
Tuesday, May 3, 2005 4:16 PM CDT Hello to everyone! So sorry it has taken so long for an update. On to the good news... The Drs at Duke said Bailey's scans looked great! They said his tumor cavity was still empty, his ventricles looked fine, and they also did a shunt series while we were there and it was fine as well. So I am satisfied now that this vommitting thing is totally something different. Thank God for good news!!! Our next step is to try the amytripyline to try to break this cycle of vommitting. I'm just so thankful this is something we can just medicate and will not involve surgery. Tuesday, April 26, 2005 9:11 AM CDT Hello to everyone! Hope you all are doing well. Since my last update Bailey has had 2 more vomitting episodes. They are coming every 13 to 14 days. He started last night vomitting and we were up most of the night. They have given him zofran, but it dosen't seem to help. He will have an MRI on Thursday and we will be traveling to Duke on Sunday. It takes around 3 to 4 hrs. so we decided to go down on Sunday since his appointment is at 10:00 am. Hopefully we will get some help from Duke about these episodes. In between episodes Bailey is great. He loves to be outside and loves to watch Thomas the Tank Engine. We are planning to take him to see Thomas in June. I will update as soon as I get results from the scan. Thanks for checking in on us. Please continue to remember Spencer and Gage who are fighting their fights. Thursday, April 7, 2005 4:56 PM CDT Hello to all. Bailey went for his upper gi today and it was not pleasant. He refused to the drink the stuff for the test so they had to stick a tube down his nose and throat and then to the stomach. It was awful, but the test were all good. I thought they would be and I wish I would have never put him thru it. On Wednesday the pediatric gastro dr called and worked us in on his lunch break. We went and that is probably one of my favorite Drs now. He was so good with Bailey and seemed to know what he was talking about. He suggested that Bailey had Cyclic Vommiting Syndrome. This is basically a stomach migraine. Bailey has most all of the symptoms, but thankfully a milder case of them. Most cases that I have read about say the children suffer with 3-4 day vommiting episodes and thank God Bailey's just last for a day. He said we should still talk to his Drs at Duke and if they agree then we could put Bailey on amytripyline which is used for migraines. He said that after being on the medicine for a month or two that we could take him off and see if the cycle is broken if so then he's cured if not then we could put him back on. From what I've read it is very rare and children usually grow out of it, but have read cases of children having it until there in their 20's. So it is still hard to make my brain think that his problems are not at all related to CPC of shunt issues. It's hard to say ok I believe this is it when I know that his symptoms fit both shunt and this other syndrome. I just pray I make the right decisions for Bailey. So continue to remember us and Spencer and Gage who are fighting their fight. Thanks for checking in.
Monday, April 4, 2005 6:19 PM CDT Hello to all! Hope this finds you all doing well. Bailey is back to normal again. We had a visit with pediatrics today and she is sending us for other test. We will go Thursday for an upper gi so pray that goes well. He dosen't like the Drs or any kind of test so I'm sure it will be a challenge. She also referred us to a ped. stomach dr in Asheville and we don't have the appointment for that yet. After these appointments if nothing is found she suggested we gather all his scans and journals of his episodes and go to Duke. She said they would look closer if I was there telling them what was going on instead of scans being sent. So hopefully we are on the road to finding out the problem. So continue to pray for us and also pray for Gage and Spencer who are fighting their fights. Thanks for checking in! I'll update as soon as I have some results. Wednesday, March 30, 2005 12:03 AM CST Hello to all! Hope you all had a good Easter! Sorry for not updating sooner. I had strep throat one week and then we all had the stomach virus the next. We have all recoverd from the virus and have started to enjoy this nice weather. Bailey ended his antibiotics on Wednesday of last week and has been fine until yesterday. He was really fussy yesterday and started his vomiting thing again last night. He slept all night, but woke up still vomiting and fussy this morning. His peds Dr is off until Monday and I don't want to see another Dr at this point. I called Asheville and they called Duke and asked what they thought about his scans and both Drs feel like his shunt is working fine and that his ventricles are fine. So that leaves me with the ? what is wrong with my child? Why does he continue to vomit and feel bad every couple of weeks? Hopefully his peds Dr will do futher testing on Monday. We have got to figure something out. I feel like I did before his dx. The Drs then didn't know what was wrong and we were repeadidly sent back home with no real answers. Hopefully we will find something out soon. I will not stop until somebody somewhere can fix Bailey. His next MRI will be April the 28th. Please continue to keep us in your prayers. Also remeber Spencer and Gage, who have the same thing as Bailey, in your prayers. Pray for God's healing for them both and all the others who are fighting this fight.
Tuesday, March 1, 2005 4:50 PM CST Hello to everyone. Bailey had a MRI and gallbladder ultrasound done today. The MRI showed he had another huge sinus infection and thankfully no tumor growth. The gallbladder ultrasound was good. The Dr said he may not have gotten rid of the infection to start with. She also said his ventricles were smaller than they were on the previous scan. She seems to think he may have slit ventricle syndrome. This means that his shunt is working to efficiently and he dosen't have enough fluid around his brain which could cause all the symptoms Bailey has had. She said she would send the scan to Duke and see what they think. If they agree he will probably have to have surgery to replace the shunt. He will have to get rid of the infection before he can have any surgery. I'm just glad Drs are finally trying to find out what is causing this problem. So we will start another round of antibiotics and hopefully get rid of the infection. Please continue to remember us in your prayers. Also say extra prayers for Gage and Spencer who have the same tumor has Bailey. Please pray that their treatment is working! Thanks for checking in on us and all your support. Thursday, February 24, 2005 6:21 PM CST Update 2/28 Went to Asheville today and Dr wants to have an MRI done at 7:00am tomorrow. She said she wanted to be sure there was nothing growing before she called Duke. He will also have a gallbladder ultrasound done just to rule that out. They did more blood work today as well. Pray for goog results.
Sunday, February 13, 2005 2:38 PM CST Happy Valentines Day to all of you. Sorry I haven't updated sooner. Bailey is doing great. He had a CT done and his sinus problem is gone. He has had one more episode of vomiting all day and then he'll be fine. Not sure what that is all about. This makes the 7th time and the dr says well the scans are clear so must be a bug. I really don't think he could have the same bug 7 times, but I guess they just don't know what the cause is. If it happens again I will take him back and hopefully get a differnt answer than it's probably a bug. He will turn 2 on the 27th and Im just so thankful to be able to celebrate another year of his life. It seems like for a little while I have put all of CPC behind me, but I was quickly reminded when one of our CPC friends found tumor growth after being clean for several years. I've cried for two days now for them and for my own fears of one day it could be us. Please pray for Gage and his family. Also please pray for Spencer who is also fighting CPC. My heart breaks for both families. Thanks for all your prayers and support.
Tuesday, January 25, 2005 8:29 AM CST Hello to you all. Hope all are doing well. Sorry it takes me so long to update just hard to find time. Bailey is doing great. He just finished his 21 days of antibiotics and I am so glad of that. He dosen't have a runny nose or anything any more. He will go to the doctor on Monday January 31 for a ct and port flush. Hopefully the ct scan will show that all that sinus junk has drained and he want need tubes. If all is well we will discuss removing his port. Tuesday, January 4, 2005 9:30 AM CST Happy New Year to you all! We brought the new year in at our house with friends. Bailey stayed up until 1:00 with the rest of us, and had a great time. It was so nice to see him play and be normal with all the other children.
Monday, December 20, 2004 4:20 PM CST Hello to everyone! Hope you are all doing well. Bailey is doing fine. He went for his check-up/port flush today and he did so much better than before. He was such a big boy. The Dr checked his ears and said he had fluid on both ears so we will start another round of antibiotics and dimetapp to help drain the fluid. He said if the fluid did not drain he may have to have tubes. I hope he dosen't because he's definatley already had his fair share of procedures, but if he does I'm so thankful that we are dealing with normal childhood sickness. We go back January the 17th to check his ears and for his next MRI. Please pray that both are clear. I will be having my post surgery MRI tommorow, and hopefully everything will be clean on mine as well. We are all looking forward to Christmas. It is so much better this year without the worries of being in the hospital for the holidays. We wish you all a very Merry Christmas and pray that you are all home and with family this year. Please continue to pray for all the others who are still fighting thier battles. Wednesday, December 1, 2004 8:17 AM CST Hello to all! Hope you all are having a good week. We had a big scare with Bailey on Monday. He went to bed fine, but woke up crying and holding his head. He then started puking and falling asleep. These were all the same signs that he had before dx. He was so lifeless and seemed to be in a lot of pain. His daddy and I took him to Asheville and they did a ct scan and shunt series, and both came back fine. Thank God! I haven't cried or been that scared since dx. The Dr said his ventricles did seem smaller and that his shunt may be working to efficiently. The scans were sent to Duke to let his Dr there look at them. We should hear from that sometime this week. Bailey also has double ear infections which could also cause these symptoms. They gave him some antbiotics and he seems to be feeling better. He has only puked one other time. Hopefully it is only the ear infection and he want have any more puking. His next MRI will be in January. Please continue to pray for us and we will pray for you.
Tuesday, November 16, 2004 9:46 AM CST Hello to everyone! Sorry I don't update more often. Bailey had a doctors appointment to flush his port on Monday. He has had a cold and broke out with a bad rash on Sunday. The Dr said the rash was from a virus or from the medicine he was on. He seems to be feeling better today. He hated being at the Drs office. He use to be fine with going there, but now he cries as soon as you put him in a room. We were there about an hour and he probably cried 45 mins of that hour. I guess he knows that the Drs office is not a fun place to be. He got his first busted nose on Sunday. He decided to slide down the small slide in the nursery at church belly first and slid right into a toy nose first. He is growing up so fast. He gets around everywhere. I could let Morgan down and walk with me in a grocery store and she would stay right with me. Bailey on the other hand goes the opposite way and then laughs and runs when I try to get him. It is such a blessing to see him be a normal child. I feel so blessed that he is doing so well. I pray everyday that CPC is a thing of our past. Please continue to pray for us and we will also be much in prayer for you.
Wednesday, October 20, 2004 8:27 AM CDT Hello Everyone!
Wednesday, October 13, 2004 8:29 AM CDT Hello to everyone! Hope all are doing well! Sorry it has been so long since my last update, but all is well. Bailey is doing great. He is growing up and is no longer being called a baby, but a todler. His hair has grown out and you can't see his scars or shunt anymore. So he is no longer looked at strange and people don't ask, "What happened to him!?" He is walking everywhere and loves to play outside. He has also learned how to express himself, especially when he don't get his way. He can also defend himself to his big sister. It is just amazing to watch him be a normal child. He was dx at 4 months so it's like we are just now getting to have real fun, and finding out what Bailey is realy like without all the chemo. I feel so blessed that we have made it to this point. He still has his port and we have to have it flused every 4 weeks, and he will have MRI's every 3 or 4 months. His next MRI is October the 18th. This will be the first MRI since we have ended treatment in June. I feel like the scans will be fine, but you never know until you get those results. So please pray for clear scans on Monday. Thanks for checking in on us I will update as soon as I know the results of the MRI. Hopefully I will have new pictures soon.
Tuesday, August 31, 2004 9:10 AM CDT Hello everyone! Wednesday, August 18, 2004 9:08 AM CDT Hello everyone, hope you have had a good week. Bailey went to Asheville on Monday, and all went well. He just had to have his port flushed and the Dr checked him over. He wasn't to friendly with the nurses at first, but then he warmed up to them. He will go back next month to have his port flushed and then he will go in October for his MRI. He continues to feel well. He seems so much happier and calm since being off the chemo. Just keep praying that this tumor will never come back. Thursday, August 5, 2004 7:43 AM CDT Hello everyone! Well I made it through my MRI. It wasn't that bad just nothing I want to repeat. The good news is the scan showed that this tumor has not spread. He said the scan looked great except for the one tumor. He said the tumor was back father than he thought so he was going to refer me to an oncologist in Asheville. He said the tumor looked ok, but there was no way to tell if it was malignant until it was looked at under a microscope. The Dr in Asheville wants to stick a needle in to do a biopsy before he does surgery so he knows what he is working with. My appointment in Asheville is Aug. 17th. I'm not sure if he will do the biopsy then or if I will have to make another appointment for that. Just continue to pray that it will not be malignant. Monday, August 2, 2004 5:26 PM CDT Hello everyone! Hope you all have had a great week. We had a wonderful vacation. We sat on the beach or by the pool all week. It was nice to just do nothing. Bailey didn't care much for the ocean or the pool, but maw-maw was there and she don't like them either. So they had some bonding time while we were soaking up the sun. I am already looking forward to next years vacation.
Tuesday, July 20, 2004 3:50 PM CDT Hello everyone! Monday, July 12, 2004 3:18 PM CDT Hello everyone!
Wednesday, June 23, 2004 9:02 PM CDT NO MORE CHEMO! NO MORE CHEMO! NO MORE CHEMO! NO MORE CHEMO! Thursday, June 3, 2004 8:44 AM CDT Hello to everyone, Sunday, May 30, 2004 8:46 PM CDT Hello everyone! Monday, May 17, 2004 4:38 PM CDT Hello everyone, Thursday, May 13, 2004 10:14 AM CDT Hello everyone! Monday, May 10, 2004 12:33 AM CDT Hello everyone! Wednesday, May 5, 2004 9:29 AM CDT Hello everyone! Tuesday, April 27, 2004 12:25 AM CDT Hello everyone! Tuesday, April 20, 2004 6:34 AM CDT Hello everyone! Monday, April 12, 2004 2:34 PM CDT Hello to everyone and hope you had a great Easter. We had a good Easter at home. We were able to go to church on Sunday as a family and spent the rest of the day with each other. Bailey is doing great! We had an appointment today in Asheville, but the dr called and said we didn't have to come because Bailey's counts looked great on Saturday. That just made my day! We don't have to get his blood work done again until Friday so we have a week without all the running up and down the road for dr's visits. We went to Asheville last Thursday and Bailey had to have some platelets and antibiotic for his ear. He said his ear wasn't fully infected, but was on its way so I'm glad we caught it before it got bad. If his counts are ok on Monday the 19th we will go in for chemo #11. He will also have a routine MRI that day. Im sure it will be fine. Please continue to pray for Bailey and all the others fighting this battle. Tuesday, April 6, 2004 8:03 PM CDT WE ARE HOME! WE ARE HOME! WE ARE HOME! THANK YOU GOD! Monday, April 5, 2004 11:18 AM CDT Hello to everyone!
Thursday, April 1, 2004 2:16 PM CST Hello everyone! Monday, March 29, 2004 10:08 AM CST Hello everyone!
Thursday, March 25, 2004 6:03 PM CST Hello everyone!
Monday, March 22, 2004 6:42 PM CST Hello everyone! Tuesday, March 16, 2004 6:52 PM CST Hello everyone! Thursday, March 11, 2004 8:12 PM CST Hello everyone! Tuesday, March 2, 2004 3:43 PM CST Hello everyone, hope you all are doing well. We went to our appiontment on Monday and the Dr is going to do an EEG to make sure there is no seizure activity and if not he will then take Bailey off his medicine slowly. We had went to have blood work first so we wouldn't have to wait for results after. It was not pleasant Bailey had to be stuck 3 times before they finally got a vein. We were late for our appointment, and Bailey was tired. After our appointment we went back for the results and was glad to see that his hemoglobin was up and his ANC was up to 700. So we thought we were home bound until the doctor done his normal check and found that Bailey has a double ear infection. Bailey then had to be stuck again to receive IV antibiotics. I wish I would have just let them access his port first and then he would not had to go thru all of that, but you never know with him. He had a good day Sunday and you would have never known he had the ear infection. He is truly a trooper. He hardly ever complains about anything. We will go back for blood work on Thursday and probably chemo on Monday as long as his counts remain stable. Please continue to remember us in your prayers. Friday, February 27, 2004 2:16 PM CST HAPPY BIRTHDAY BAILEY!
Tuesday, February 24, 2004 3:18 PM CST Hello everyone! Wednesday, February 18, 2004 2:26 PM CST Hello everyone! Tuesday, February 10, 2004 6:03 PM CST Hello everyone!! Monday, February 9, 2004 6:03 PM CST Hi everyone Friday, February 6, 2004 4:47 PM CST Hello everyone! I hope you each had a good week. Bailey has had a good week even though his counts are low. His ANC is 0 which means he can't fight off anything, but you sure can not tell. He's crawling everywhere, getting into everything, and eating like there is no tommorow. If he gets fussy at all just put food in front of him and he is fine. He is only 5lbs less than Morgan who is 3. I'm just thankful he wants to eat and play as a lot of chemo patients don't or can't. We have been so blessed that Bailey has tolerated his chemo so well. He will have his next MRI on Wednesday, Feb. 11th. Please pray the scan will be clean. Also continue to pray for Spencer and Marcel, who are also going thru treatment. Thanks for all your prayers and support!
Thursday, January 29, 2004 8:58 PM CST Hi everyone we are back home! Bailey finally got to have his 7th treatment. It was different this time because Bailey is now crawling. They gave us a big mat to put in the floor, and Bailey was everywhere. I had to chase him around pushing his IV pole. It seemed to be a lot less stressful this time. We usually stay in the room the whole time, but this time I took Bailey to the play room so we didn't just see the same four walls for 3 days. I'm not saying I'm ready to go back, but I guess it's just getting easier or I'm just getting use to it. We will have bloodwork on Monday at Rutherford and on Thursday in Asheville. We will also schedule an MRI on Thursday. Please pray it will be clean! I have met another family whose 10 mo old baby boy, Marcel, has the same tumor. Please pray for them as he to is going thru treatment like Bailey. If you have a chance visit his page and leave a word of encouragement. (www.caringbridge.org/ma/marcelhill) Also pray for Spencer starting radiation next week. Thanks so much for your prayers and support! We are so blessed to have family and friends who care so much. Sunday, January 25, 2004 7:01 PM CST Hello everyone! Bailey had blood work on Friday, and his counts are up. His ANC was 748 on Tuesday and over 2000 on Friday. I guess the vitamins and taking him off his medicines really helped. Now that he is ready the weather is terrible and I am not sure if we will be able to travel up the mountain or not. I will call the Dr in the morning and see what she wants us to do. Hopefully we will be able to go sometime tommorow. Please continue to pray for Bailey and others fighting this battle. Especially pray for Spencer his MRI of the spine showed tumor on his spine. He will be starting radiation soon. Thanks for all your prayers and support. Wednesday, January 21, 2004 7:58 PM CST Hello everyone! We made our trip to Duke, and everything went good. We saw Dr. George first and he said Bailey looked great and wanted to see him again in 6 mo. We saw the oncologist, and he wants to take Bailey off all his daily meds. He thinks the septra and zantac may be affecting his counts also. He also wants to take him off his anti seizure med, but we will have to wing him off, and see how he does. He said as long as Bailey's organs and counts could handle the chemo he wanted to do 6 to 8 more treatments. He has already had 6. His ANC was still not high enough for chemo this week. We will go Friday for more blood work to see if he can have chemo on Monday. Just pray he will be ready! Thanks for all your prays and support! Thursday, January 15, 2004 10:36 AM CST Hello everyone! Bailey's counts are still not high enough for chemo. He feels fine, but his counts just are not high enough. Today is Morgan's Birthday and she is real excited about her birthday party on Saturday! We will go to Duke on Tuesday and if Bailey's counts are good we will go for chemo on Wednesday. Now for prayer request! Please say a special pray for Spencer and family. He has the same type of tumor as Bailey. He went for his gamma knife procedure on Tuesday, but his MRI before the procedure showed that Spencer now has 5 tumors so they could not proceed with the procedure. His next step will be full brain radiation. Please pray that the radiation will work and will not cause any other symptoms for Spencer. Also pray for his parents it is so hard to watch your child go thru these procedure and to watch them suffer. It's also hard to understand why they have to go thru it. So please pray for strentgh and courage to face each day! Thanks again for all your prayers and support! Tuesday, January 13, 2004 7:46 AM CST Hello everyone! We packed up and went to Asheville on Monday for chemo, but Bailey's counts were not high enough so we were sent back home. His ANC was only 300 and has to be 1000 or higher. I guess the flu just really hit his counts hard. We will try again on Thursday. We will be going to Duke on the 20th to see his neuro-surgeon at 10:45 and his oncologist at 12:30. I'm not sure yet if we are going to do an MRI before we go, or if it will be at the end of the month. Just pray that the MRI is clean and we can get his chemo treatment done. I was able to watch my aunt deliver a precious baby girl, Kimerson Grace, on Monday at 6:45 P.M. Congratulations to Tommy and Kim, she is beautiful. Pray for this new baby to be healthy and pray for all the other children who are fighting their battles. Especially pray for Spencer who is having his gamma knife procedure today. Thanks for all your prayers and support. Monday, January 5, 2004 4:33 PM CST Hi everyone! Bailey is doing some better, but still has a cough and runny nose. He had blood work on Friday at Asheville and at Rutherford today. His counts have taken a hit from the flu. His ANC was down to 400 on Friday and has come up to 750 today. It has to be above 1000 to have chemo. He didn't need blood or platelets on Friday. His hemoglobin however has dropped since Friday, but not enough to have blood. He is also trying to cut some teeth so that dosen't help either. I'm just thankful we haven't had to be in the hospital this time. I have to take him back for blood work on Wednesday to see where he is. The doctor said she may still do chemo at the end of the week, but we would just have to wait and see how he does. I took Morgan to the doctor today and she either has a bad cold or the flu. She has the same symtoms as Bailey. They have both done well and not seemed to sick. Just pray it will pass soooon. Bailey has a follow-up appointment with his neuro-surgeon, Dr. George, on January the 20th at Duke. He also has an MRI coming at the end of the month. Please pray it will be clean. Morgan has a birthday on the 15th, she will be 3. It's going to be a busy month, but we will make it with your prayers! Please don't forget to pray for Spencer having his procedure on the 13th. Thursday, January 1, 2004 3:25 PM CST Happy New Year! I bragged to soon on Bailey. He woke up Tuesday morning with a fever of 101.5 and a runny nose. We went to Asheville and they gave him some iv antibiotic and fluid and sent us home. I was up most of the night checking on him. His fever went up to 102.9 during the night. I had to take him back Wednesday and his cultures were negative, but his hemoglobin and platelets were dropping. His nose was still running and she said he had an ear infection. She decided to do a nasal culture to test for a virus. She said we could go home, but to call her today for the results and to let her know how he was doing. He seems to be doing better and his fever has broken, but he did test positive for the flu. I couldn't believe it. He hasn't acted to bad and he hasn't been any where, but church Sunday and out to eat. The doctor said she thought he could fight it. We have to go back to Asheville Friday morning to see if he needs blood or platelets. His counts have taken a hit from the flu so I don't know if he will be ready for chemo or not. Just pray he will get better soon!
Monday, December 29, 2003 3:13 PM CST Hello everyone, I hope you all had a wonderful Christmas! We most certainly did, the children got more than they needed. Bailey had blood work Friday and his counts were high. He also had blood work today and his counts are normal. He will go to Asheville on Friday for blood work, and probably chemo on Monday. Please continue to pray for Bailey as he continues to fight his battle. Also pray for Spencer. He will have a gamma knife procedure on January 13th. I have added his and 2 other links of children with the same tumor to this page. I hope you all have a Happy New Year! We are looking forward to this year in hopes of completing chemo and moving forward. We will never forget what God has brought us thru this year! Monday, December 22, 2003 8:49 PM CST Hello everyone! Bailey had blood work today in Asheville and his counts are down. His ANC was down to 30 last time a week after chemo and this time it was down to 200 which is better. His hemoglobin is 8.9 which is low, but not enough to receive blood. He seems to be doing a lot better this round! Tommorow is the day that will be the test. For the last two chemo treatments the Tuesday after chemo he runs a fever and we end up in the hospital. We have faith that this Tuesday is going to be fine, and we will be home for Christmas. If we are not we will be fine. We feel like we have experienced Christmas since July of this year. We have been so blessed to have Bailey here on earth with us. God could have taken him, but he didn't and we thank Him for it. We have also received so much support from our family, friends, church family, and community. We feel more blessed this Christmas than we ever have. We wish you all a very Merry Christmas and a Happy New Year. Always remember that Jesus is the reason for the season, and don't forget to count your blessings and thank Him for it.
Monday, December 22, 2003 8:49 PM CST Hello everyone! Bailey had blood work today in Asheville and his counts are down. His ANC was down to 30 last time a week after chemo and this time it was down to 200 which is better. His hemoglobin is 8.9 which is low, but not enough to receive blood. He seems to be doing a lot better this round! Tommorow is the day that will be the test. For the last two chemo treatments the Tuesday after chemo he runs a fever and we end up in the hospital. We have faith that this Tuesday is going to be fine, and we will be home for Christmas. If we are not we will be fine. We feel like we have experienced Christmas since July of this year. We have been so blessed to have Bailey here on earth with us. God could have taken him, but he didn't and we thank Him for it. We have also received so much support from our family, friends, church family, and community. We feel more blessed this Christmas than we ever have. We wish you all a very Merry Christmas and a Happy New Year. Always remember that Jesus is the reason for the season, and don't forget to count your blessings and thank Him for it.
Monday, December 22, 2003 8:49 PM CST Hello everyone! Bailey had blood work today in Asheville and his counts are down. His ANC was down to 30 last time a week after chemo and this time it was down to 200 which is better. His hemoglobin is 8.9 which is low, but not enough to receive blood. He seems to be doing a lot better this round! Tommorow is the day that will be the test. For the last two chemo treatments the Tuesday after chemo he runs a fever and we end up in the hospital. We have faith that this Tuesday is going to be fine, and we will be home for Christmas. If we are not we will be fine. We feel like we have experienced Christmas since July of this year. We have been so blessed to have Bailey here on earth with us. God could have taken him, but he didn't and we thank Him for it. We have also received so much support from our family, friends, church family, and community. We feel more blessed this Christmas than we ever have. We wish you all a very Merry Christmas and a Happy New Year. Always remember that Jesus is the reason for the season, and don't forget to count your blessings and thank Him for it.
Friday, December 19, 2003 7:04 AM CST Hello everyone! We came home from the hospital on Wednesday and Bailey is doing great! God was watching out for us while we were in the hospital. It was on Tuesday and it was time to start his 2nd round of chemo and for some reason we were delayed. It was a good thing because the needle in his port had backed out and his fluid was going under his skin. Bailey was real fussy and I couldn't figure out what was wrong until his pump started beeping. I raised his shirt and it looked like he had a tennis ball under his skin. The nurse said thank God it wasn't the chemo and it was just fluid. The chemo would have burnt his skin underneath and it would have had to been removed with plastic surgery. God is good all the time and all the time God is good! Continue to pray for Bailey and all the other children fighting this battle.
Sunday, December 14, 2003 3:15 PM CST Hello everyone! We had blood work done today, and everything is normal. So we will go in tommorow for our sixth round of chemo. I just pray that our cycle dosen't continue and him wake up next Tuesday morning with a fever. Just pray we are not in that hospital for Christmas! Please continue to pray for us and all the other children and families who are fighting this battle. Especially pray for Spencer, who relapsed and is facing treatment in January. Monday, December 8, 2003 4:53 PM CST We went to Asheville today to have blood work. His ANC went from 500 on Friday to 2280 today. His hemoglobin was normal so he didn't need blood. His platelets are still low, but was not low enough to receive platelets. We will have more blood work at Rutherford on Wednesday to make sure his platelets are on the rise. If all remains stable we will have his 6th chemo treatment on Monday the 15th. Thanks for all your prayers and support. Friday, December 5, 2003 8:03 PM CST We are home. We have been in the hospital since Tuesday afternoon. Bailey woke up Tuesday afternoon at 4:30pm with a fever of 100.5, and since it was so late we had to go straight to the hospital. When we got there they done blood and urine cultures and the doctor checked him. She said his right ear was red so we think that was all that was wrong. She started him on a different antibiotic than what they had given him last time. On Wednesday his counts were 0 and his hemoglobin was 7 and the doctor said he was going to have to have some blood. He had a third of a unit of blood and seemed to feel much better and his color was better also. I thought for sure we were comming home on Thursday, but Bailey's Counts were still 0 and his platelets were dropping so they wanted him to stay. His platelets are still low, but not enough to receive platelets at this time and his ANC is up to 500. His normal ANC is above 1300 so he is still low, but are on the up-hill side of things. We have to go back to Asheville on Monday for bloodwork and to see if he needs any platelets. This is the first time he has had to have blood since starting chemo. The Dr. said he will probably need it everytime as we go further into treatment. I'm just thankful we are home for now!! Please continue to pray for Bailey and the rest of us we continue on this journey. Also remember a boy name Spencer who has the same kind of tumor as Bailey and has relapsed.
Monday, December 1, 2003 8:07 PM CST Bailey had blood work today, and its down as usual. His normal ANC should be 1300+ and it is 30. His WBC should be 6.0+ and it is 0.2 which means his body can't fight off anything. His counts should start to climb by the weekend. We are just praying he dosen't get sick like the last time. Morgan has to have her second flu shot tomorrow and I'm dreading it. We will go to Asheville on Thursday for more blood work. Please continue to remember Bailey in your prayers. Saturday, November 29, 2003 12:49 AM CST Hope everyone had wonderful Thanksgiving! We had a great day! Bailey is doing really good! He will have blood work on Monday at Rutherford and Asheville on Thursday. I'm going to keep him home to make sure he dosen't get sick this round. He may still get sick, but we are going to take all the precautions we can. Please continue to pray for Bailey and all the other children who are fighting their battle with cancer. Wednesday, November 26, 2003 5:43 PM CST Happy Thanksgiving everyone! We are back home from the hospital and Bailey did great! Thanksgiving day will mark 5 months since Bailey was diagnosed. We have so much to be thankful for. Tears come to my eyes when I think of how blessed we are. Five months ago we were told our precious baby boy had a mass on his brain that he may not survive from. It has been a long road, but thank God he has survived! I will never forget how good my family, my church family, and this county has been to us. I am so thankful for each and everyone who has sent a card, said a prayer, gave money, and just been there for us. I remember 11 years ago on Thanksgivig day I lost my father, and I didn't feel I had anything to be thankful for especially on Thanksgiving. This year I feel like I can't say thank you enough. Even though I have a son that is in and out of the hospital, and a daughter that gets left with friends and family, and a husband that has to pick up where I left while I'm in the hospital, I can't praise God enough or be thankful enough! I could be left here without my son. I just can't stress enough to be thankful for what God has given you, and to live everyday like it could be your last. God could have taken Bailey 5 months ago, but He left him here for a reason. I don't know the reason, but I'm sure thankful for it. If I hadn't said already I am so thankful everyday for what I have, and for how God has blessed our lives. My prayer for you is to feel as blessed and thankful as I do. Happy Thanksgiving!
Friday, November 21, 2003 4:03 PM CST Bailey's blood work wasn't as high today as it has been, but it's still high enough for chemo. So we will have to be at the hospital at 10:00 am on Monday. This will be his fifth treatment with 7 more to go. We are looking forward to the day when we don't have to have anymore treatments. I just feel blessed that Bailey has made this far and has done as well as he has. He is living proof that God still performs miracles!
Thursday, November 20, 2003 4:36 PM CST Hello All! It's been a rough week. Bailey woke up Tuesday with a fever of 101.9 so I had to take him to Asheville. They ran cultures and gave him some iv fluids and an antibiotic and he was ready to go. However I have been sick with a stomach virus since then. I feel some better and was able to get their pictures made today, but still not able to eat. He seems to be fine. We will have blood work on Friday, and if all is well chemo on Monday and Tuesday. Please continue to pray for Bailey. Saturday, November 15, 2003 12:32 AM CST Bailey's counts are back up! His ANC went from 0 on Tuesday to 2139 on Friday. He is amazing!! We will have blood work on Monday and Thursday next week. If his ANC stays at 1000 or above we will have chemo the week of Thanksgiving. Thanks for all your prayers!
Wednesday, November 12, 2003 3:26 PM CST Bailey had to go to the doctor in Asheville on Tuesday because he was running a fever and had a runny nose. I packed a bag because a thought they would keep him, but they said he looked so good that they thought it would be ok to go back home. So they gave him an iv antibiotic and some fluids and we came back home. We had to go back again today for another round of antibiotic and more blood work. He dosen't have anymore fever or runny nose so maybe we are all better. However his blood work is still down. His ANC is 100 and should be 1300 or above. So we will be home until his counts come back up. We go to Rutherford on Friday for blood work. Morgan also went to the doctor today for runny nose and congestion and she is also on an antibiotic. Maybe they will both get cleared up soon! Until then we will be at home. Please continue to pray for our family. Wednesday, November 5, 2003 6:18 PM CST Bailey had chemo on Monday and Tuesday. He did great! He hasn't been sick at all! Praise the Lord! His eating has slowed down, but thats normal. We will have blood work on Friday at Rutherford. Then we will start again with blood work here on Mondays and in Asheville on Thursdays. We are getting use to this and it seems almost normal. We thank God everyday for blessing us with Bailey, he is such a joy to have around. Until next time. Wednesday, October 29, 2003 3:14 PM CST Bailey's MRI was sent to Duke, and the Dr said that the scans were fine! I haven't talked with Dr Bottom to know exactly what was said, but she wants him to go ahead and have chemo on Monday so everything must look ok. We are so thankful! Morgan had a well check at Rutherford Peds. today and she is fine. That was the first time they had seen Bailey since he was diagnosed and they couldn't believe their eyes. They said he looked amazing and was truly a miracle. Thanks again for all your prayers and support! Monday, October 27, 2003 5:26 PM CST Bailey had an MRI today and PRAISE THE LORD IT WAS CLEAN!!!! There was no new tumors and no regrowth. However his ventricles seemed to be enlarged which means his shunt may not be working right. We will know for sure on Wednesday. The Dr is going to fed-ex the MRI to Duke so they can compare it to the last one. I'm just glad they are not enlarged because of a tumor like last time. If they are truly enlarged we will be going to Duke to see what we need to have done. If they are not enlarged we will be going back to Asheville on Monday to have chemo. We thank God for answered prayers! Bailey is truly a blessing from God! Thanks for all your support and prayers! Please continue to remember Bailey!
Saturday, October 25, 2003 8:04 AM CDT Bailey's appointment with the therapist went really well on Thursday. They could not believe how well he was doing. They called him the miracle baby, and we of course said he most certainly is. They didn't feel like he needed any therapy and said he was doing great! The only thing we have to work on is to put him on his stomach more so he can start to crawl. We went to Asheville on Friday and Dr. Bottom wants to do chemo on Monday, however his counts are not high enough yet. I'm going to take him Sunday for blood work to see if he is ready. On Monday and Tuesday of last week Bailey vommited after his morning bottle and has been a little more fussy. It may be nothing, but this was the symtoms he had in the begining. The Dr said with him doing this in the morning that it was more worrisome because that is when his pressure would be higher. If he has anymore vommiting she is going to do an MRI before his chemo just to make sure the tumor hasn't come back. Bailey was put into God's hands from the beginnig and that is where We are going to leave him. It is still an everyday struggle not to worry. Please continue to pray for Bailey and for us to keep our faith. If you haven't signed the guestbook lately please do so, we could always use some encouraging words. Wednesday, October 22, 2003 8:18 AM CDT Bailey had blood work Monday and his counts were good. PACT( Parents and children together) are coming over tommorow to assess Bailey. It is an early intervention program for children from birth to age 3 who have special needs or who have been through surgeries like Bailey that could cause developmental delays. There will be a speech, physical, and occupational therapist and a pediatric doctor. I'm so glad they can all come to our house, and we don't have to go to several different appointments. We will go back to Asheville Friday for more blood work. Thanks again for all your prayers and support. Please continue to pray for a clean MRI on November the 6th. Thursday, October 16, 2003 8:22 PM CDT Bailey went back to Asheville today and everything went well. His counts are low, but not as low as they were last time. His ANC had dropped to 0 the week after his last treatment and it has only dropped to 1100 this time. PRAISE THE LORD! His normal level is between 1300 and 8100. We go back to Rutherford on Monday and Asheville on Thursday for blood work. They finally got his MRI scheduled for November the 6th. We should already be in the hospital having chemo so that will be convenient. Please continue to pray for Bailey, and always thank God for what He has done. Wednesday, October 8, 2003 2:59 PM CDT We are home from the hospital. Bailey was able to receive his chemo treatment this time, and done very well. The doctor came in while he was receiving the treatment and said that Bailey wasn't supose to be so happy during chemo, but he was sure glad he was. We will have to have blood work twice a week and then chemo in 4 weeks. He will also have an MRI done at the end of the month to make sure the tumor hasn't come back. Please start praying now that he will have a clean MRI. We thank God for what he has done for Bailey and our family. Monday, September 29, 2003 11:49 AM CDT We went to Asheville again today, but his counts are still not high enough to have chemo. Doctors said not to worry we would try again next week. Just keep praying! Please pray for Donnis and family. Her father passed away last night.
Tuesday, September 23, 2003 1:07 PM CDT Bailey went to Asheville today to have his 3rd chemo treatment, but he could not have the chemo because his counts were to low. The doctor said that the shots make his counts rise artificially and then they bottom out again and then his body produces new ones. He said they should start coming back up on their own. We are scheduled to go back on Monday to have the chemo done. I was ready to get it done, but I was glad to come back home. Please continue to pray for Bailey! Monday, September 8, 2003 2:19 PM CDT Bailey had blood work today, and thank you Lord it is back to normal. We don't have to stay stuck in this house anymore. I Praise God that we didn't have to be in the hospital this round. God is so good to us. Thank you all for praying for Bailey. His next chemo will not be until September the 23rd. We may have to have blood work done, but shouldn't have any other doctors appointments until then. Thursday, September 4, 2003 8:54 PM CDT Bailey went to Asheville today. The good news is his hemoglobin was normal and he didn't need any blood. The bad news was that his absolute neutrophil count(ANC) was 0. This number tells us how well Bailey can fight infection. His number should be between 1300-8100. Since Bailey's ANC was 0 the doctor said we should stay at home with no visitors until Monday. We go to Rutherford on Monday for blood work, and hopefully his counts will be back up. Just pray that his counts will rise quick, and that he dosen't get sick before they do. Tuesday, September 2, 2003 8:18 PM CDT Bailey's counts were low on Monday. Hopefully they will start to climb soon. He has a neupogen shot for 10 days to help his counts increase. We go to Asheville on Thursday for more blood work. Bailey has no signs of being sick. He is a happy growing baby. Thursday, August 28, 2003 11:15 AM CDT We are home again! Bailey is amazing. He done great with his chemo and being in the hospital. We will go to Rutherford on Monday for blood work and to Asheville on Thursday. While we were there the physical therapy person came by and done an assesment on Bailey. He scored 91 out of 100. She said Bailey did not need therapy and that he was not behind at all. Praise the Lord! Thank you all so much for your prayers and support. Friday, August 22, 2003 10:24 AM CDT Bailey has had a great week! It has been wonderful to not have to go to the doctor this week. We have to be in Asheville @ 8:00 a.m. Tuesday. They will access his port at the doctors office to do blood work and probably a kidney test. We will then go to the hospital and he will receive fluid, and then the chemo will run for over 4hrs. Please pray that Bailey will do as well as he did last time. Hopefully we will be home late Wednesday or early Thursday. Saturday, August 16, 2003 8:41 AM CDT Bailey's lab work came back normal on Friday. He will have his 2nd chemo on August the 26th in Asheville. He does not have to have any blood work or Doctors visits until then, PRAISE THE LORD! This will be the first week that we will not have had to see a doctor since June the 20th, our first visit to Rutherford Peds. It's hard to believe that it has been 2 months since we got the horrible news of Bailey's illness. I just thank God that he has spared Bailey's life. You just never know what God has instore for you so like our Pastor said on Sunday we better have quite time with God before the storms hit so when they do we will be ready. I don't know how we would have made it thru without God by our side, and having the best church family praying us thru it all. Even though we have had to watch our child go thru so much we have truly been blessed with Bailey's presence, and the out-pouring of so many peoples love. We can't thank each of you enough for all you have done. We love you all! Tuesday, August 12, 2003 5:01 PM CDT Bailey went back to Asheville today. His counts were normal. We have to go Friday to Rutherford Hospital for more blood work. I think he is getting use to it he didn't even cry this time when they stuck the needle in his arm. The doctor wants him to see a physical therapist to work with his legs. Bailey don't seen to want to stand up on my lap, he draws his legs up when I pick him up. Monday, August 11, 2003 6:47 AM CDT We are home again! Bailey is doing fine. Bailey's neutropil level went from 200 on Thursday to 8900 on Saturday. The doctor said WOW! She couldn't believe that Bailey had done that well. People were praying and God answered! He will go back to Asheville on Tuesday to have blood work done. I'm sure it will be fine. Friday, August 8, 2003 6:42 PM CDT Bailey has not had a fever today and his white clood cell count is climbing. Thursday, August 7, 2003 5:26 PM CDT Becky had to take Bailey to Rutherford Hospital this morning for more bloodwork. His blood count was at 200 and is supposed to be 500 or above. Monday, August 4, 2003 6:04 PM CDT Bailey's appointment went well today in Asheville. His doctor, Dr. Bottom, use to work with the brain tumor center at Duke. She was really good with Bailey. They faxed me the results of his lab work after I got home. As expected his white blood cell count was 2.2 which is low. The normal count should be between 6.0 and 17.5. This means his immune system is very low. If he runs a fever of 101 or above he will have to be hospitalized. We believe God is watching out for Bailey, and he is going to be just fine. Thursday, July 31, 2003 9:47 PM CDT We are home! Bailey done great with his chemo. He slept right through most of it. He will get his next chemo on August the 26th. He has an appointment on Monday in Asheville with the doctor who will give him his chemo treatment in September. He will have to have blood work done every Monday and Thursday at Rutherfor Hospital to keep a watch on his blood counts. The doctor suspects that Bailey's white blood cells, which fight infections, will be at its lowest on Tuesday of next week. We will probably be staying at home all of next week to avoid any germs. The only restrictions we have are to avoid anyone with or who has been around anyone with a cold, and to avoid contact with small children.
Tuesday, July 29, 2003 4:27 PM CDT MRI SHOWED NO MORE CANCER! CATH IS IN PLACE. SPINAL TAP HAS BEEN DONE. GOING THROUGH TEST FOR KIDNEYS. HAS TO RECEIVE EXTRA IV FLUIDS BEFORE CHEMO IS STARTED. CHEMO WILL PROBABLY START AT 8 P M. Sunday, July 27, 2003 1:02 PM CDT Bailey has had a great week! To see him you wouldn't know he was sick. We have to be at DUKE on Monday the 28th. He's surgery will start at 3:00. They will put in the porta-cath and do a spinal tap. He will then receive his first chemo treatment. Wednesday, July 23, 2003 8:26 PM CDT Bailey went back to DUKE today. He had an MRI of the brain and spine. We will know the results on Monday. He will be admitted on Monday the 28th to have a porta-cath put in and to get his first round of chemo. We plan to enjoy the rest of the week at home. Tuesday, July 22, 2003 5:46 PM CDT Bailey went back to DUKE today. He had all of his stitches and bandages removed. He will go back tommorow for a MRI. On Monday he will have a porta-cath placed, spinal fluid drawn, and will be admitted for his first chemo treatment. Hopefully he will do fine and we will return home on Tuesday or Wednesday. He will have chemo treatments every 4 weeks. Some will be at DUKE and some at ASHEVILLE. Sunday, July 20, 2003 9:59 PM CDT Bailey was discharged today and was able to come back home for a couple of days. They will be headed back to DUKE on Tuesday as long as everything goes ok the next couple of days.
Saturday, July 19, 2003 10:46 PM CDT Scott and Becky had to make an unexpected trip back to DUKE today. Fluid started leaking where the shunt was put in. They are not sure if it is a blockage, infection or something else. Friday, July 18, 2003 10:20 PM CDT Bailey is at home and everything is going great. Just being at home after three long weeks in the hospital, is a great relief for the family. Thursday, July 17, 2003 11:10 AM CDT Bailey gets to come home today. He will return to Duke in a week or two for testing and chemo.
Wednesday, July 16, 2003 9:15 PM CDT This has been a long road so far for the family. Still in ways it is hard to believe that this can happen to your family.
Wednesday, July 16, 2003 8:28 PM CDT Bailey has a successful shunt placement today.
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