History

Friday, October 14, 2005 9:52 AM CDT

I know it's been months since there were any updates, but that's a sign all is well. Michelle has lost all of her steroid weight and is wearing some of the clothes she wore before everything happened. She decided she wanted a pet so she got herself a minature dachshund which she named "Buster". We really don't get to see her much since it looks like she's trying to make up for lost time and just constantly going. She goes for her 1 year post transplant scans the latter part of this month so that's another milestone reached. We'll try to do better with the updates but in this case no news really is good news.

Thursday, June 30, 2005 2:40 PM CDT

Hey everybody, It has been awhile since I updated. Michelle is doing well. Her ingrown toe nails are all better. Her neuropathy continues to improve also. She is getting stronger everyday. I suspect it will be a long time before she is at full strength. She died her hair red and got a small haircut. She only goes to clinic once a month now. Her bext visit is mid-July. Her next scans are probably in November. Well I will take a picture and post it so you can see her.

Sunday, May 22, 2005 8:43 AM CDT

We have been to the clinic and the ER this past week. Michelle will not be able to take the acutane. We hope that the chemo got all the neuroblastoma cells because she can not tolerate the accutane which was supposed to be the "clean up " drug. She will be having her 6 month scans in the next week or two. These are very important because she has been six months without treatment and hopefully the cancer will have not come back. Please pray that she feels much better this week. She has several graduation activities to attend and graduation is the 29th. We are so proud that she was able to finish school.

Wednesday, May 11, 2005 9:44 AM CDT

I know it has been a while since I have updated Michelle's journal. Alot has happened. Last week she got her IV out. This is the first time in a year that she has not had one. Her platlette coune has finally started coming up by itself. We hope that in a couple of weeks all her blood work will be normal again. She is getting alot more energy and is able to drive her car again. She no longer needs so much medication for her nausea so she is not impaired to drive. I think that perked her up more than anything. Her hair is growing nicely and she is losing about a pound a week. She has more test coming in June to see if her cancer has returned. Everyday that it stays away is a blessing. Everyone's prayers and thoughts have done miracles. I will try to update about once a week.

Wednesday, April 20, 2005 1:30 PM CDT

Michelle went to clinic yesterday and had a test to see if she is producing the natural steroid that our bodies make. This may be the reason that she feels weak all the time. Her body aches and she has a constant head ache. If the test is positive she just has to take another pill. If it is negative I do not know what the next step is. This has been a long year. She was diagnosed on April 15th last year. Her stem cells are doing their job. Her platletts are increasing on their own.

Tuesday, April 12, 2005 8:11 AM CDT

Michelle went to the ER on Sunday night. She needed two units of blood. She was feeling very weak. After the blood transfusion she felt sooooo much better. She took her last dose of steroids yesterday so maybe she will lose some of the weight that they caused her to gain. She is working hard on her school work. Graduation is coming up and it is her goal to walk the line with her classmates. I am sure she will get her work done, but she has to get stronger to be able to walk that distance on her own steam. Please continue to pray for her recovery. She still has a long way to go.

Saturday, April 9, 2005 6:51 PM CDT

Michelle went to the clinic yesterday and we got some great news. Her platletts increased on their own. The nurses were so excited. Her blood count however is still on the low side. Hopefully that will start to increase too. It has remained steady for about ten days but it is still too low. Michelle is tired and some of that is from her low blood count. Her hair is really growing. Her daddy styled it in a short mowhawk yesterday. ( Michelle said no way) In a couple of weeks she will start on a medicine that has been shown to neutrelize neuroblastoma cells. This is a big milestone because only half of all neuroblastome patients make it to this step. We are so thankful for her progress.

Wednesday, April 6, 2005 12:08 AM CDT

Well, it's been a while since we last updated so I'll try to get caught up. Two weeks ago, Michelle ended up spending 2 nights in the hospital with a stomach virus. She mainly needed fluids because she couldn't keep anything down. Then on her last visit, her platelets actually went up on their own! This is a first since her last chemo back in November. Starting next week, she begins once a week clinic visits. It looks like things are really starting to go on the upswing for her. The medical and especially the prayers are paying off.

Thursday, March 31, 2005 11:44 AM CST

Hey just wanted to update everyone. Michelle spent this weekend in the hopsital due to a stomach virus. She is doing fine now. She went to the clinic on tuesday and needed platletts AGAIN. She is taking a very long time to start producing platletts on her own. She is still needing red cells perodically. I discussed with her transplant nurse my concern that she is taking so long to recover. She said that she and the doctor are starting to discuss that same issue. I will update with new info when we return from the clinic on Friday. She is in good spirits but still missing her friends from school. Please call or come by to see her. She is coming to the steak dinner at the school on Saturday. Please continue to pray for her.

Sunday, March 20, 2005 2:41 PM CST

Michelle is doing well. She has managed to stay out of the Hospital since early march. We still go to the clinic twice a week to check her blood and give platletts if they are too low. Sometimes she needs red blood. The doctors have taked her off two of her medications. Hopefully they will keep doing that. She takes a large amount of pills a day. She is almost off the steroids so all her swelling will start to decrease. She is working on her school work, but it is hard for her to do because her eyes are not focusing like they should right now. Her goal is to be able to graduate with her class. I know she will do it.
Keep praying for her and please give blood when you can. The children at the children's hospital really need it. Someone still has to stay with her all th time because she is still very unsteady on her feet.

Monday, March 7, 2005 6:07 AM CST

Well we came home from the hospital on the 5th. The second stem cell transplant went well. She did not get sick except during the procedure and even then it was just extreme nausae. The gave her some good IV medication after that and when she woke up she wanted taco bell. We did stay the night because the transplant was later in the day. She had another fall and hurt her back pretty bad. It is all bruised up but the x-rays are fine. She says the neuropathy in her feet is better. Her hair is really growing and hopefully by summer she will hve a cute little hairdo. It is growing back a dark blond color, I am sure she will color it as soon as possible. Pretty soon she will only be going to the clinic once a week. She is just having hard time recovering. She is feeling well enough to tackle some school work. Well I have got to go to work. I will keep you updated.

Saturday, March 5, 2005 9:55 AM CST

Well Michelle ended up back in the hospitl on Thursdy night She did not look right. She was cold and clammy and chilled.When we got to the er we noticed tiny blisters all over her body. They put her in isolation incase it was the chicke pox. ( Kathryn had the shingles so they were concerned about Michelle.) It tutns out that it is clogged up sweat glands and sweat was trying to surface causeing blisters. All of her scans came by perfectly normal. She did receive the rest of her stem cells Friday bacuse her platletts and red cells were not coming in fast enough. She go almost as much this time as she did in November. She did not have to go through the chemo so she should have no side effects. We are going to go home sometime today. Hopefully this will reduce the amount of visits to the clinic and she will be able to get her central line out. ejust praise GOD that all her scan are normal We will keep yall updated again. Thanks for all your prayers. Please pray for Matt and Sydney. They will both be having transplants very soon.

Tuesday, March 1, 2005 6:27 PM CST

Sorry we haven't updated in while but there hasn't been much to report. But I guess that's a good thing. Michelle went to the clinic last week and had another bone marrow biopsy. We got the results today and everything was normal. Today she had her 100 day post-transplant scans. For those who don't know, 100 days after transplant is a major milestone in cancer treatment. Friday she goes back to the clinic for the reat of her stem-cells. Hopefully this time she won't get sick from them. She's dealing with a bit of pain which is a result of her steroids. Another result of them is her appetite! She is eating us out of house and home and we love it!

Wednesday, February 23, 2005 7:42 AM CST

Michelle came home on Friday. She maybe had a virus that caused body aches. There was nothing that they could do at Vandy for her. She is fine. She went yesterday and had her fourth bone marrow biopsy. This is routine post transplant work up. Sometime soon she will have to repeat all the scans. We return to the clinic on Friday for another check up and blood work. Thanks for all your prayers. I will continue to update.

Friday, February 18, 2005 1:08 PM CST

I am sorry i haven't updated but there wasn't much to say. She was doing very well most of this week. However she was admitted last night. She just doesn't feel well. She needed blood and platletts and she was very nauseas. We will probably go home today. Her hair is staring to grow and we are very excited for her. When I get home I will take a picture and post it for everyone to see. She is on steroids so her face is swollen. We are decreasing the dose a little at a time so hopefully the swelling will go away. She is eating and no longer needing IV feedings at night. Please continue to remember us in your prayers. She still has a long time to go before she is out of the woods.

Friday, February 11, 2005 9:23 PM CST

Michelle is feeling pretty good. Nothing exciting happened at the clinic today except they doubled her blood pressure medicine. She has had some trouble with it since her transplant. Other than that she is doing well. We saw some old friends at the clinic today too. Everybody have a good weekend.

Thursday, February 10, 2005 7:59 PM CST

We survived a whole day at home!! Michelle is feeling much better than she did a few days ago. Her nausea is almost completely gone. She still has some pain in her feet from the neuropathy but we hope that will get better soon too. She is still very weak and gets out of breath easy. Her lungs are pretty junky right now but she is on medication for that too. hopefully whe is on her way to recovery now and she can concentrate on her school work so she can graduate with her class this spring. It will mean so much to her and all of us to see her walk the line with her glassmates. I will update tomorow after she sees the doctor.

Wednesday, February 9, 2005 2:02 PM CST

YEAH!!! Michelle is coming HOME... Today. She is able to take all her medicine and she is feeling better. We go back to going to the clinic every Tuesday and Friday for check-ups. I hope she does not have to be admitted again. Please be very careful if you come to visit that you have not got the Flu or a cold or anything. If you are well she would love to see her friends.

Tuesday, February 8, 2005 5:50 AM CST

Michelle is eating little and trying to take all her medicines by mouth. She is keeping them down. Dr. Frangoul called in a Lung Doctor to see if he can make sense of her x-ray. They are going to do chest Cat scan today. Robbie stayed at the hospital overnight for the first time last night. I haven't talked to him about it yet this morning. He usually can sleep through things though. We hope that there is nothing major wrong with her lungs. She continues to need oxygen and gets short of breath. Please pray that her lungs are going to be healthy. We really appreciate the visits from preachers from other churches as well as our own.

Sunday, February 6, 2005 4:12 PM CST

We had a very busy night at the hospital. The Doctor came in and said that her potssium was too high. This could be dangrous because it can change the rythym of the heart. We spent all night getting it down. It is now within normal range. Her oxygen level dropped again this afternoon and another chest x-ray was done. The steroids seem to be giving her somewhat of an appetie. We have to work on gettng her to take all her medications by mouth before we can go home. I really hope this is the last time we have to be admitted. Please keep those prayer coming!!

Saturday, February 5, 2005 1:29 PM CST

Well the results are in. Michelle does indeed have graft versus host disease. This is basically where the grafted stem cells treat the host body(michelle) like a disease and try to destroy orans and tissue in her body. It can range from mild to severe. It is almost unheard of in her type to stem cell transplant so you know she had to get it. They atarted her on IV steroids last night and hopefully in several days we will see a remarkable change in her appetite and energy. Her blood counts remain pretty good.
She will probably need a platlett transfusion on Sucday but for today she is OK. We do not expect her to go home until early to mid-week. She is still very nausaus today and I hope that starts to improve somewhat by tomorow. She had a fall yesterday will getting off the bedside toilet. She ended up hitting her back and the back ot her right arm against the legs of the computer. She is OK but will be bruised.

Friday, February 4, 2005 12:29 AM CST

Michelle's procedure went well yesterday. We expect results today I hope. If it is graft versus host disease then she will go on steroids for a short period of time. This should make her feel lots better. She should be able to eat more and not be nausuas. Her spirits are better today but she is so tired of not feeling well. I will update later when we get the results of the biopsy.

Wednesday, February 2, 2005 6:32 PM CST

Michelle had her Cat scan last night and it seems to be normal. She will have a stomach biopsy tomorow to check for a disease called "graft versus host" disease. If she has it the treatment is simply steroids for several weeks. She is still asking for a lot of nuasua medicine but whe was able to keep a few bites of chicken noodle soup down this afternoon. Her feet are hurting her alot because she has neuropathy in them. That means they are numb and painful at the same time. That gets better with medicine but she has not been able to take it. We still don't have a definite answer on her lungs. Today the doctor said it could also be some scar tissue. I doubt that it is pneumonia, but that is just my opinion. They are treating her for pneumonia just in case. She hasn't ran a fever with it. Just keep those prayers coming.

Tuesday, February 1, 2005 9:02 PM CST

Well Michelle is still in the hospital. She still uses the oxygen because it makes her feel better. but she really doesn't need it. She does have fluid in her lungs so they are giving her medication to try to draw the fluid off. She continues to be very nausuas, and is vomiting alot. The doctors are going to run some test on Wednesday to see if they can find out why. She is staying out of it alot because the medication they are giving her makes her sleepy. But the good news is her hair is starting to grow back. You can see her hairline. It looks dark right now. She is hoping for red curly hair. But you know her she will dye it any color she want anyway. I hope we can come home soon but she has to be able to take her medicine and eat and drink a little bit. I suspect we will still be there next week. Please pray for her recovery. We made a little backward progress but God knows why and we have to trust in him.

Sunday, January 30, 2005 5:03 PM CST

Michelle needed two units of blood and one unit of platletts on Friday during her clinic visit. On Saturday morning she started throwing up and she was unable to keep anything down, including her medicine. We went to the ER around 6:30pm and the decision was made to admit her. We had to wait until they could move someone off 6A. We got to her room around 1:00am this morning. She is able to drink small sips of water but nothing else. Also this morning she complained of chest pain and shortness of breath. She needed to be put on oxygen and a heart monitor. They also did a chest x-ray. I am waiting for those results. Her room number is 6303 and the phone number is 936-4169. Hopefully we will only be here for a few days. We were able to stay out of the Hospital for 11 days. Maybe when we get out this time we will not have to come back!! More than likely we will but we can wish can't we. Keep us in your prayers and God Bless!

Friday, January 28, 2005 8:50 AM CST

Hey everybody, There were some entries in the journal from people who do not know Michelle and they had some guestions. Michelle is 18 and her diagnosis is neuroblastoma and she just jad jer stem cell transplant on November 21. She is at home and doing well. Physical therapy is coming three times a week. Her muscles have to learn all over how to work. She is still very week and continues to be sick to her stomach, but she is soooo much better than she was. We go to the doctor today. Maybe after today we will only have to go once a week. Her homebound teacher came on Wednesday so now she has her school work to do. Please continue to pray for her and her friends at school are more than welcome to come visit.

Wednesday, January 26, 2005 5:35 AM CST

Michelle went to the doctor yesterday and all was well. She did need platletts again though. I think by Friday she will need blood. Otherwise she is improving very slowly. Her foot pain is getting better as she is moving around more. Her kidney function is fine. She still is pretty much homebound. She can go to the clinic and home and nowhere else. I am not sure how long we have to be that careful about infection. I will probably update about every other day. Hopefully she is on her way to a full recovery. Please keep praying for her. God Bless

Monday, January 24, 2005 5:08 PM CST

Well, it's Monday and we are still at home. Michelle is still doing fine. We go back to the clinic tomorrow for her checks. We want to thank all the people who visit and call her. It really makes her day to see or hear from her friends. The doctors are slowly cutting her meds. Hopefully soon they will be down to just a very few.

Friday, January 21, 2005 10:30 PM CST

Michelle's appointment went fine today. She did need platletts but otherwise everything is going well. This is the last night of IV antibiotics. We will keep this website up for awhile to keep everyone updated on her condition. It is great to have her home. Hopefully she won't have to go back to the hospital but if she does there are wonderful nurses to take care of her.

Thursday, January 20, 2005 7:05 PM CST

Well it is Thursday night and we have managed to keep Michelle out of the Hospital. She has had no fevers at home. She has felt real tired today so I suspect that when she goes to the doctor tomorow that she will need blood and possibly platletts. Physical Therapy came yesterday. Hopefully she will get stronger soon. I have returned to work three days a week. Robbie is taking off work for those three days because she is still too sick to be left alone. I probably already wrote about that but I can't remember. After being out of touch with the "real world" my thought proccess is a little sluggish. Michelle loves to have her friend drop by so don't be shy. Please continue to keep her in your prayers because she still has a long way to go.

Tuesday, January 18, 2005 2:57 PM CST

Michelle came home yesterday afternoon. We still have to do IV antibiotics and IV feeding at home. Before this is over her daddy and I will be nurses. She is doing well. She is still very week and is only able to walk short distances with a walker or with help. Physical therapy will be coming to the house. Hopefully she will not have to go back into the hospital any time soon. We will follow up very frequently with the clinic. She is in good spirits and we are glad to have her home.

Monday, January 17, 2005 4:17 PM CST

Michelle is HOME! This is her dad and I'm really excited about it. She is doing great and waiting for visitors. Tomorrow we have to go back to the clinic so be sure and call first. We will be home all night tonight.

Sunday, January 16, 2005 8:16 PM CST

Michelle had a good day today. No fever and no vomiting. If tonight goes well we will come home Tomorow. She will have to return to the clinic on Tuesday. For awhile she will have to come to the clinic a few times a week. Then it will be less frequently. Sometime in February she will start radiation. She will be able to have visitors at home.
We will see you in Pleasant View.

Saturday, January 15, 2005 8:39 PM CST

Well this is SAturday night and Michelle has not ran a fever, maybe we really will get to go home on Monday. She did however throw up her feeding tube last night. She is trying hard to eat enough and drink enough to satisfy her doctor because she does not want to get another tube. She has done pretty good today. The oncologist on for this weekend ordered supplement drinks for her. She can't wait to get back home. We have been here since November 15th. She has been through alot this time, but it will be worth it. She will have to come back and forth to the clinic several times a week for check-ups. She will hab=ve to have more blood/platlett transfusions until her marrow is producing all her blood cells at an acceptable level. This is completely normal. Please keep praying for her full recovery, without prayer I don't know how we would have come this far.

Friday, January 14, 2005 11:33 AM CST

I went home last night and Michelle's Nannie is with Michelle right now. The doctors have decided to take her central IV line out today and put in another one that is placed in her upper arm and advanced up her arm and into a vein in her chest. This type of line is called a pic line. They decided to do this because her central line is still infected and they do not want to take the chance that the infection will spread to any organs. The antibiiotics were not working fast enough. So if she does not run anymore fever this weekend and no more complications occur she should come home on Monday.

Wednesday, January 12, 2005 1:10 PM CST

Michelle is feeling more nausuas today. She threw up this morning. Her blood cultures were still positive this morning. The Doctor said if she does not have a temp between now and Monday and her cultures are negative she will go home on Monday. She had to have two units of blood and one unit of platletts this morning also. So anyone who is physically capable please go to the Red Cross and donate blood regularly! Her stem cell transplant was successful but it takes awhile for it to completely work and then she will not need the transfussions. Her immune system is not so fragile but when we go home she will be home bound until the doctors tell us it is OK. Please check out the link I put on the home page to learn about neuroblastoma.

Tuesday, January 11, 2005 8:19 PM CST

Michelle had a good day today. She was able to eat half an apple and then tonight she had some baked potato. She really hates that feeding tube so she is trying to eat but her stomach is really small and not used to food. Her blood cultures are still positive so we are still in the hospital. Maybe by Thursday we may get to come home.

Monday, January 10, 2005 10:31 PM CST

Another day at the hospital. Michelle ate a little bit more today. She has to take in at least 75% of her caleries before they will remove her feeding tube. It will probably take several weeks. Physical therapy walked her around the unit today. She did well until the end and her legs started shaking. Everyone here is impressed how well she is doing. The infection in her blood is one that is easily treated so maybe we can go home in a couple of days and finish her IV antibiotics at home. We have done that once before so we know what to do. Everyone have a good Tuesday and God Bless.

Sunday, January 9, 2005 1:04 PM CST

Well this is day 56 in the Hospital. We really did not think that we would still be here. Michelle did well last night. She went to bed with a temp of 100.3 but it got no higher and then went down to normal. She is still nausuas but she did eat a little lunch today. She has an infection in her blood and when they determine what kind they will narrow down the antibiotics and maybe we can go home and I can give her the medicine through her IV at home. We have done that before. Her blood counts are good today, not normal but very good for her. Just keep praying for her and I am sure she will be fine and able to go home soon.

Saturday, January 8, 2005 11:48 AM CST

Well we have hit another bump on the road. Michelle has a fever of 102.3. That means we start back on IV antibiotics and we will not get to go home on Monday. Hopefully it will only mean a few more days in the hospital and we can go home later in the week. We also can not get her nausua under controll with her tube feedings. I don't know when she will be able to tolerate a regular diet.

Friday, January 7, 2005 11:05 AM CST

They are getting Michelle ready for discharge. It will be on Monday. All her medicines have been changed to liguid so we can put them down her feeding tube. As soon as she can eat enough the tube will be removed. She just has no appetite right now. She still gets nausuas alot. Her spirits right now are not the greatest. She hates the feeding tube. We cannot wait to get home!!!.

Tuesday, January 4, 2005 2:11 PM CST

Well we are just a few steps closer to coming home. Her catheter was pulled from her bladder and she was able to go to the bathroom. She is walking with assistance. She will go home with tube feedings(through the nose). She just has no appetite yet. She can eat as much as she wants to but her main nutrition will be her tube feedings until she is taking in enough food. She does not feel very well today. She has an upset stomach. We hope tomorow will be a better cay.

Sunday, January 2, 2005 9:39 PM CST

Michelle walked more steps today and is looking pretty good on that walker. They continue to switch her medication slowly to pills. She still does not have an appetite. She will have to be taking some food by mouth before they let her go home. The nurses here continue to be such good cheerleaders for her recovery. Please keep those prayers going, I see God working here and I am so grateful to him.

Saturday, January 1, 2005 8:33 PM CST

Happy New Year! Michelle had an OK day. She is still on bladder irrigation because she continues to have alot of blood in her urine. We are hoping this will resolve soon. Physical Therapy brought a walker to her and she has used it once already to take about 6 or 7 steps. She said it is hard to walk again after so many weeks in bed. She is getting stronger and is able to sit up and bring her legs to the side of the bed without help. This is a major improvement. She still has that sense of humor and has the nurses laughing. She is still very nausuas and is umable to eat. She can drink. She will come home on intravenous feeding. We will have to learn how to do that. We have learned so many things since this started. Her kidney funtion levels are very good, just about normal. Happy New Year!! and continue with those prayers.

Friday, December 31, 2004 10:03 AM CST

Michelle is continuing to get better everyday. We expect to get her catheter out sometime today. Also she has an IV called a pic line in her arm and that will probably be out today or tomorow. She will have the IV in her chest for awhile. She will need to be fed at night through her IV for a little while after we go home. She also gets her blood, platlets and medicine through it. She did not get to do her physical therapy yesterday. She threw up after two excersizes. We really hope to be home late next week, but we will see day by day. Please continue to pray and visit.

Wednesday, December 29, 2004 10:10 PM CST

Michelle is doing OK. She sat ina chair for two hours today and had physical therapy. That took alot out of her. She still has a couple of blisters on her tongue so it is hard to eat anything. She really doesn't want that much to eat. Also food does not have much of a taste to her. Her taste will come back when her tongue completely heals. All the medical staff who stop by her room remark on how much better she looks. She will be home before we know it. Please continue to pray for her. God is really working here.

Tuesday, December 28, 2004 1:24 PM CST

It has been a few days since I have updated and she is doing much better. She has not needed dialysis since she left Intensive care. The Doctor said that she may not need any more. I feel that all the prayers have been answered for her Kidney's. She is getting her since of humor back too. Physical therapy got her into a chair today. She was very weak but it was good to see her up in a chair. Her platlets continue to be low. She really need my platlets but my iron was low today and they would not let me give. I am going to try again tomorow. I encourage everybody who can to consider being a regular blood donor or platlet donor. You don't realize how much blood products are needed until you are in this situaton. If she continues to progress she may get to go home as early as next week sometime. She have to come back to the clnic everyday for a while and he also has to have radiation but at least she will be home. She would like to have visitors.

Saturday, December 25, 2004 12:59 AM CST

Merry Christmas!!!! Santa clause came last night to the hospital. Everyone here tries real hard to make it special for the kids and parents too. Santa came to her door around midnight and left a bag full of presents. I could not believe the generosity of the local stores and Faith and Tim McGraw gave a fifty dollar gift card to Target. I am truly impressed with Vanderbilt Children's Hospital. Michelle's kidneys are still producing urine. She will have a short session of dialysis tomorow and then we will just wait and see what her kidney'd do from there. The kidney Doctor said that if she did not already have a vascular catheter in place they would not feel the need to place one because it was not that bad. They are just going to remove a little fluid and filter her blood a little. She had a rough night, she was throwing up about every two hours. We don't know why. I am sure that will improve once she can tolerate some fluids better. Every one have a Merry Christmas and God Bless!

Friday, December 24, 2004 9:27 PM CST

Christmas eve finds us still in the hospital. Of course we knew that she would not be going home anytime soon. I really have no idea when that will be. We should have some idea I guess next week. Her blood pressure and temp are up tonight so they will do more blood cultures and give her blood pressure medicine. Sometimes kids in her situation get fevers for just a small bug that you or I would never even know we had it. Her high blood pressure is probably related to her kidney problems. There are about nine kids on this wing of the sixth floor. I know that stefany has a sign on her door to remind Santa Claus to stop at her room tonight. Please continue to pray we see small improvements all the time, although sometimes it is two steps back and one step forward at times we will get through this with God's help.

Thursday, December 23, 2004 7:02 PM CST

Michelle was more alert yesterday. She still had a lot of blood in her urine and they continued the irrigation until about 2 am. Her urine is now a normal color and it looks like quite a bit to me. She went to surgery last night for placement of a new dialysis catheter. The first one was in the leg and they needed a more stable place. Now she will be able to get out of bed and participate in PT. She was moved to the oncolgy floor today about lunchtime. WE WERE SO HAPPY. We loved the nurses in the ICU but we are glad to be back home on the 6th floor. Her room number is 6310 and she is wanting to see her friends. People are welcome to come in very small groups and only if they are healthy. No colds, stomach aches or any other illness that she may get. Please keep praying for her full recovery and full kidney function. All the prayers are working. Her kidneys are really trying hard to work. Merry Christmas everyone.

Tuesday, December 21, 2004 9:05 PM CST

Well I haven't updated in a couple of days. My onlt excuse is emotional exhaustion. They kept telling us that they were going to take the tube out and then something or someone would happen. Finally today all parties agreed and the tube was removed at 5:30pm today. She did fine. Her throat is VERY sore and very little noise comes out but that will get better soon. Her bladder is filling up with blood and it is clottin. The doctor says it is from low platlett count and an irritated bladder. Her bladder is being continously irrigated until it improves otherwise she will clot and no urine will come out and that is very bad. She looks really good right now and I hope she can get out of ICU soon, although the nurses love her in the ICU. The nurses on the floor are anxious to have her back as well. The nurses at the Children's Hospital are great.

Saturday, December 18, 2004 9:58 PM CST

Well guess what? Michelle is still on the vent. The ICU doctor is reluctant to take it out bacause of the possibility of bleeding and or swelling in her mouth or throat. They also don't really want to leave in in for much longer either because of excess swelling that may occur when you have a tube dowm the mouth like it. We are going to have a "conference" with all the different doctors on Monday. We will discuss the possibility of placing a trachiostomy in order to still have an airway while her throat and mouth continue to heal. They can cap that off so she can talk and eat and when they feel that all the danger has passed they can simply remove it and it will leave a small scar. Otherwise she had a good day. She produced more urine. She is aware of her surroundings and is able to respond appropriately wiith head nods and hand signals. She is aware of what the doctors concerns are. She is not happy about waiting until Monday to find out what they want to do. We will I guess all make the decision together but ultimately will do what the doctors feel is best for Michelle.

Friday, December 17, 2004 9:59 PM CST

Well Michelle is still on the vent. Her mouth started to bleed early this morning. The ENT doctor used silver nitrite on it and we expect to take her off the vent in the morning. She will most likely stay in the ICU overnight and be moved back to the sixth floor sometime Sunday. She is much more alert and anxious to get all the tubes out of her mouth and nose. She tried to smile as best as she could today at alot of people. The nurses can tell she has a sense of humor and has alot of spunk. Her kidney's had an increase in urine output also. Everbody just keep on praying for her full recovery. I can see God working right before my eyes. I know that he is the reason that I am still going and not just colapsing from exhaustion and/or despair.

Thursday, December 16, 2004 8:12 PM CST

Today was an excellent day. Michelle's bleeding from her mouth seems to be under controll. If she has a good night and no bleeding the doctors will take her completely off the vent Friday afternoon. I guess that they will keep her Friday night to make sure she is OK and then I hope she is in a room on Saturday. Her urine output was a little bit better. Just keep on praying that they fully recover.

Wednesday, December 15, 2004 2:57 PM CST

Yes we are still in the ICU. Her mouth continues to bleed, but we found the source. She somehow bit a chunk out of her cheek and since her platlets are low it is unable to clot properly. The ENT guys are going to inject it with epinephrine/lidocain to constrict the blood vessells. Hopefully that will work. Everything else looks good. Her kidneys are still producing some urine so we are still hopeful about that. I hope to have her in a room in a few days. I know I say that everytime but maybe it will happen now. Thanks for all the prayers and support.

Monday, December 13, 2004 12:49 AM CST

Michelle has had a good couple of days. She continues to be more aware of her surroundings. She tries to communicate
but with the tube in her mouth she can not do that very well. She continues to have some uring output so keep on praying for her kidney's. Her mouth is still bleeding so they can not take the tube out until that stops or she will be right back on the vent. Her blood cultures are negative so we don't have to worry about that. I realy appreciate all the thoughts and prayers, and I thank all of those wonderful people of Pleasant View and Ashland city whoi have helped us in so many ways. It means a whole lot to us. I am getting mushy so I'll quit this journal page for today and will update tomorow.

Friday, December 10, 2004 9:45 PM CST

Sorry I did not update yesterday. Michelle is able to open her eyes, nod her head and squeeze my hand. Her ventilator settings are being lowered and she is doing most of the breathing now. The plan is to get her off of it and get her back to her room. She had a blood infection too that seems to be clearing up. She is still on dialysis. I have told everybody I know to pray for urine. She is producing a small amount but not near enough to get off dialysis. Everybodies prayers are working because she is improving. Thanks to everybody for all you are doing.

Wednesday, December 8, 2004 9:37 PM CST

Michelle had a very uneventful day today. Her mouth ulcers are healing and they will scope her throat in a few days to see if that is better too. They will try to take her off the ventilator if her throat has healed enough. They put her on a machine today that will continiously and gently filter her blood 24/7 instead of dialysis for a few hours everyday. She is looking much better and not so much like she had been in a fight. Please keep up the prayers.

Wednesday, December 8, 2004 6:52 AM CST

Michelle stayed the same yesterday. Although there was some improvement in her mouth ulcers. I did learn that she has an infection in her blood. The infectious disease team came in and changed her antibiotics in order to fight it better. They are trying their best to keep her skin in good condition. This is a hard task when a person is in the condition she is in. She does have some breakdown on her bottom. Physicial therapy comes everyday and works her muscles and they have fitted her with special boots to wear on her feet several times a day to keep her feet and ankles muscles from shrinking and causing foot drop. They take her off the drug that paralizes her everyday for a little bit to make sure that she is able to come out of it. When she became awake a little bit I told her that I loved her and she tried to say it back. That made my day. Keep on praying for her full recovery.

Monday, December 6, 2004 9:33 PM CST

Michelle is still in intensive care and probably will be for some time. They are taking really good care of her. All we can do is wait for her to heal and take care of her until she gets better. They stopped the medication that was paralizing her today for a short period of time but still kept her sedated. She awoke enough to shake her head no at the nurse while she was trying to suction. The put her back under. They will do that from time to time. They tell me she probably hears everything we say. I loaded a new picture of her in intensive care. Keep praying for her.

Sunday, December 5, 2004 9:00 PM CST

Michelle had a good day. She is still in the ICU and on the ventilator, but she is stable. Her kidneys are producing a little more urine than they were yesterday. Tomorow they are going to stop the medicine that has her paralized to start the weaning proccess. That way they will be able to see how much she will try to breath on her own. I am sure that she will be in ICU for about a week or more.

Saturday, December 4, 2004 4:48 PM CST

Michelle was moved to the ICU last night. She was having a real hard time breathing today due to the bleeding in her throat and mouth. Her body finally said enough and her blood pressure and her pulse dropped very rapidly so she was intubated and placed on the ventilator. She is stable. I do not know how long she will be in ICU. We had to give up her room on the sixth floor so I will be sleeping in a sleep room off the ICU unit. I will update later to let yall know how she is. KEEP PRAYING!!!!!!

Friday, December 3, 2004 3:58 PM CST

We have the preliminary report on Michelle's CT scan. It is normal but we have to wait for the final report. She continues on dialysis, but she is producing a little bit more urine. She continues pretty much the same today.

Thursday, December 2, 2004 8:33 PM CST

We had a "good" night for the first time in a while. An airbed was brought in today so she would not have any skin breakdown. Also a CT scan was done this afternoon to rule out any stroke that could be causing her mental status changes.
The Kidney Doctor came by during her dialysis this morning and told us that she did not think that her kidney failure was permanent. It will probably be weeks thought until her kidneys funtion normally again. The nurses here are fantastic and really care aboutMichelle. They have told me that they have seen this before and the kids pull out of it. They still get nervous with each patient. There have been kids that they really thought were minutes away from death and they are OK. The chemo for stem cell transplants are especially hard on anyone. All these things are happening because of the chemo basically. Her cells are starting to work. Her white blood cell count is excellant. The other types of cells take awhile longer. I am going home tomorow so I will try to add some pictures on the web site. Thanks for your prayers I think that they are starting to work.

Wednesday, December 1, 2004 11:02 AM CST

Michelle returned to her room yesterday at 5:30am. She is about the same. She hd another episode of not being able to breath this morning. There was alot of blood in her mouth and she could not breath. The nurses got out the blood and she was OK. Please continue to pray for her full recovery. She is not doing as well as she should be at this point. She is continuing with dialysis everyday and when she can tolerate being flat they will do a CT/MRI of her head to make sure there is nothing wrong with her brain to be causing this confusion. They have seen this before and it was simply the drugs and toxins in the blood and it resolved with dialysis and time. We are praying that iis what happens. Thank for the prayers.

Monday, November 29, 2004 9:58 PM CST

I has been couple of days since I have updated. Michelle has had a rough time. Her breathing has been bad. She has been on oxygen. She was struggling to breath. Today a HUGE blood clot fell off the back of her throat and blocked her airway. They called a lot of people to her room STAT. They removed the clot in her room and sent her to the Intensive Care Unit. The ear, nose and throat Doctor scoped her airway to see what else might be going on deeper. Her throat actually look OK, just swolled and a little irritated. Her mouth looks really bad due to the mucasitis. They are going to keep her in the ICU until tomorow. She is on dialysis now on a daily basis. Her kidneys are now the major concern. Her white count is coming up some so her mouth will heal. Her kidneys will have to recover on their own. I will try to update tomorow.

Saturday, November 27, 2004 11:35 AM CST

I did not update yesterday because we had a rough day. She was running a temp. Then she did not have very much urine output. This has been an issue for several dys. We have been watching her blood work for toxins that are usually urinated out. These levels have risen dramatically. She also has some fluid on her lungs. So last night we put a catheter in her bladder to determine exactly how much urine there was ( not a lot ). She also had a dialysis catheter put in her groin area. We are starting dialysis today. Her kidneys need to rest and heal. Hopefully this is only temporary. Her physical appearance is not attractive right now, but that is all expected side effects. She has bruising around both eyes, the whites of her eyes are almost entirely red, and she is basically red, and bruised looking on most of her body. She is showing signs of confussion but the doctor told me that is because of the level of toxins in her blood and that will improve with dialysis. Thanks for all your prayers and cards. We continue to believe that her outcome will be good. The road to recovery is hard.

Thursday, November 25, 2004 9:59 AM CST

Michelle is more alert on this Thanksgiving day. She needed more blood and platlets during the night and this morning. She looks like I have been beating her. Her eyes are black and blue and the whites of her eyes have busted blood vessells. I have been told that this is normal and not to worry about it. This is what they call day 4 after transplant. Transplant day was Sunday the 21st and it was day 0. Dr. Frangould said that in several days she should start to feel a little better.
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Thursday, November 25, 2004 9:51 AM CST

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