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Nicholas' Journal January 2005

January 31, 2005 Monday - ( Day +60) Outpatient - (Day 17)

What can we say, but Nicholas had another wonderful day today. He is now eating about every 3 hours. What an appetite. I wish he liked more variety of foods though. He laughed and played all day and did not take a nap. He is showing some more of the 3 year old attitude the last couple of days. Mr. Independent!! It is great to have him feel so good. He is really keeping us on our toes. He has a doctors appointment tomorrow that should go just fine. He really feels good. I will update with all of this tomorrow. Please keep him in your prayers. Thanks

January 30, 2005 Sunday - ( Day +59) Outpatient - (Day 16)

Nicholas had another awesome day. He was showered with gifts from his mother, grandma, and aunts. Every time someone enters his home they have surprises in their hands. He gets so excited. He continues to eat and talk like a trooper and is slowing down on the "quesas." His food of choice now is chicken McNuggets from McDonalds and double cheeseburgers. He just loves them. He did so good yesterday, playing, talking, eating and he really enjoys the family here. He is having so much fun. He has another routine check up on Tuesday and things should be fine. Please keep him in your prayers!!

January 29, 2005 Saturday - ( Day +58) Outpatient - (Day 15)

Nicholas has had another great day eating, singing, and dancing. His appetite has really increased and he tore into our hamburgers today along with his chicken nuggets. Tonight he ate chicken and mashed potatos with gravy. He has had alot of fun with the relatives today and he was very glad to see grandma and gave her a hug as soon as she got here. He has been wound up all day and has not had a nap, too much going on to sleep, he thinks. Nicholas continues to repeat everything that he hears, and it is very funny sometimes. Nicholas is really having a great time with the relatives and he is doing very well also. It is beautiful to see him so healthy. Please keep him in your prayers. We love you Nicholas. 

January 28, 2005 Friday - ( Day +57) Outpatient - (Day 14)

Nicholas woke up early this morning hungry and he ate a whole bowl of cream of wheat before 8:00am. He was ready to go, wound up tight and very happy. He had a doctors appointment today that went very well, all of his numbers look great. The doctors are very pleased with his progress. He has been taken off another food pump because he is getting all of the calories that he needs through the food that he is eating. His appetite is doing very well. He now is off all pumps except for the 8 hours at night that he gets a liter of water run through him. This is just because he is just not drinking enough right now, but if we know him this will probably change soon. We will continue to  introduce water to him to speed up the process, and also just 1 hour at night for a antibiotic. Other than that he is free to run all day. He is still on a lot of oral meds and this will probably not change very soon. 

     We asked the doctors why they all seem so surprised as to his progress and they told us that he is their "miracle transplant." They cannot believe his progress and his body should not be progressing this well. They are so surprised that he is doing so well and they just want to come into the room when we get there because they are so happy with his progress. They just cannot believe it especially for a genetic transplant. His speech is progressing so rapidly that the doctors just want to come in to the room just to talk to him and watch him dance. They all smile and tell us "that he is doing wonderfully and we will see you in a couple of days." We just cannot ask for a better staff and treatment that we receive here a Primary Children's Medical Center in Salt Lake City. Woohoo keep up the good work Nicholas. We all love you!!

     Nicholas' grandma, and 2 aunts (K.K., and Leslie) are here to visit him this weekend. He will have so much fun and will be glad to see them. He will have more attention that he know what to do with for the next couple of days.:):):):) Please keep Nicholas in your prayers and thoughts for a continued speedy recovery. Thank you!!

January 27, 2005 Thursday - ( Day +56) Outpatient - (Day 13)

Nicholas continues to amaze us everyday with his speech, and his appitite. He continues to want food and grazes all day. He is always talking now and learns new words everyday. We are amazed at the things that he picks up. He will mimmick the television, his parents and just about anything that he hears. He is amazing!! His energy level is great and getting better everyday. He likes to run into the kitchen and the bedroom and run back. He is still dancing to his videos and the cartoons on television. This is such am amazing process what the doctors have done for him. Thanks for reading his posts and I will continue to update this website daily. We will be going to the doctor for another check up tomorrow and his IVIG infusion. Keep him in your thoughts and prayers.

January 26, 2005 Wednesday - ( Day +55) Outpatient - (Day 12)

Again, Nicholas had another great day!! The fever that he was teasing us with has seemed to go away. Whatever he was fighting is gone as far as we know. He is eating more and has drank more water today. He needs to keep on drinking if he wants to get off one of the pumps that gives him a liter of water through IV for 8 hours of the night. He continues to talk more and more everyday. It just amazes me how much he learns everyday. We continue to have great conversations with him, and no fooling us now when he does not talk. It is funny though he will not talk on the phone, but will answer it and just breath on it. He likes to give a good bye kiss though. All in all we had a great day and on to tomorrow. Thanks for all of you who pray for us and want to ask for the continued prayers. Thanks

January 25, 2005 Tuesday - ( Day +54) Outpatient - (Day 11)

Nicholas continues to do well. He is eating his cream of wheat and chicken nuggets. Nick is not drinking enough water though, but he is getting better. Nicholas had a great doctors visit today. All of the doctors were in the room with us. Sometimes it is hard to see a doctor, and today we had them all. They are all very happy with the progress that Nicholas is doing in his recovery. The bug that we thought that he had is gone and his numbers are returning to more of a normal level. His platelets are a little low so the doctors are going to watch them this week. (87,000) His body fluid level is also a little low so Nicholas is going to be put on a 8 hour IV of a water solution everyday until he starts to drink more. He is going to be taken off his TPN which is the fat and vitamins that he has been on for 20 hours a day. So, basically 1 pump down. His liquid feeds have been pushed up and he is only on them now for 16 hours a day. This is great. He will be off all pumps now for 8 hours everyday. It will be easier for him to run and play. Nicholas has gained 9.5 pounds since we have been here. His weight went from 27 pounds to 37.5 pounds yesterday. WOW!!! He is outgrowing his clothes everyday. Please keep him in your prayers for a continued great recovery.

January 24, 2005 Monday - ( Day +53) Outpatient - (Day 10)

Nicholas slept in a little today and did not wake up until 8:30am. He is sleeping through the night now and is playing hard in the mornings. He ran through the halls and gave out a lot of hugs. He was in an exceptional mood. Nicholas went down for a nap around 2:00PM and slept for a couple of hours. He had a bath and we changed his bandages this morning and he did a little better with it. He always cries during the bandage change even though it does not hurt. He just does not like it. We will have a doctors appointment tomorrow morning for his regular blood checks to see how his new bone marrow is producing. He is doing very well so I think that it will be great. I will update later tonight if there is any changes. Please keep him in your thoughts and prayers!!

January 23, 2005 Sunday - ( Day +52) Outpatient - (Day 9)

It is Sunday and Nicholas is still having a great day. He continues to eat well everyday and his feeds have been increased to 20ml/hr. He is tolerating this very well and the feeds will probably be increased again in a couple of days. The inversion layer still keeps us indoors here so we just do a lot of dancing, and watching his DVD videos. Late last night he was still very awake and had a great night. Nicholas will have another check up on Tuesday and will probably go very well. Please keep him in your prayers!!

January 22, 2005 Saturday - ( Day +51) Outpatient - (Day 8)

Another great day for Nicholas!! Yeah. His high temp that he was teasing us with has come down a little. We are definitely resting a little easier. He is still eating very good for the time that he has been out of the hospital, but still thinks that he needs to live on "Quesas, and bowls of cheese." He is so funny. We are having to make him eat other foods before the quesas and cheese. He just loves this. He was pretty active today and very happy. His smiles keep on getting bigger if that can happen. There is a nasty inversion layer here in Salt lake City and we cannot take Nicholas outside until this inversion lifts, so we just spend out time in the house. He deals with this pretty well. We just have fun everyday and he does not seem to mind. Please keep him in your prayers and continue to check back for updates!! Thanks

January 21, 2005 Friday - ( Day +50) Outpatient - (Day 7)

WE HAVE NUTRAFILLS =  9,000

WHITE BLOOD CELLS =  11,000

RED BLOOD HEMATOCRIT = 35,000

PLATELET =  115,000

Nicholas woke up this morning and had another great day. He has a scheduled doctors appointment for a check up, and also to see why his temp continues to go up at night this last 3 nights. We have not reached the fever yet, but getting close. If Nicholas gets a fever we will be admitted until they find out what he has. The doctors drew blood cultures today and we should know by tomorrow what is up if anything grows out of them. His white cells and ANC were elevated today so they want to try to figure it out early if they can. Nicholas does not act like he feels bad and has not slowed him down of the quesadillas. He is eating other foods now like chicken mcnuggets, and cream of wheat, but he always wants a "quesa, with ranch dressing." He just loves cheese. Hopefully his body will quit teasing us with this potential fever and just go away so he can just keep getting stronger. I will update with the changes if any later. Please keep him in your prayers!!

UPDATE: Nicholas ate some chicken tenders tonight and is slowing down on the cheese quesadillas. He was in a great mood, but his fever tried to come around tonight. The fever was down later in the evening and I hope that it stays gone. Basically, he is still doing great. Thanks for the prayers.

January 20, 2005 Thursday - ( Day +49) Outpatient - (Day 6)

Nicholas is enjoying another great day. He cannot go outside due to the Salt Lake inversion layer. The news says that the air is very bad when this happens, and has warned people that are immune compromised to stay in, so we do. Nicholas is still wanting to eat and is getting hungrier everyday, and is trying some new things, but not without bribing him with a quesadilla after. He loves those quesadillas.:):):) He also continues to talk more everyday and learns more words. He knows most of his videos by heart and is mimicking them. Nicholas had another great night sleeping through all night. Everything seems to be going great. He has another check up tomorrow and I am sure that it will go great. Please keep him in your prayers.

January 19, 2005 Wednesday - ( Day +48) Outpatient - (Day 5)

Nicholas has not had as much energy as he has for the last few days. He ate some macaroni salad and I do not think that it settled very well. He is taking a nap now and he is trying to get a fever. Hopefully this will pass and go away on his own. It is hard to build up your system after a bone marrow transplant. He is still talking a lot and learning more words everyday. It is great that he is able to tell us what he wants, and even sometimes he will get things himself without telling us. Please keep him in your prayers. We still have a long road ahead of us.

UPDATE: Nicholas' tummy ache went away last night early in the evening. He felt much better and wanted to play. He had great energy and I do not think that he realized that he went through a bone marrow transplant by the way that he wants to play. We have to try to keep him calmed down and not let him get too worked up until he is better. For now he is doing great and is happy to be out of the hospital.

January 18, 2005 Tuesday - ( Day +47) Outpatient - (Day 4)

WHITE BLOOD CELLS = 7,000

RED BLOOD HEMATOCRIT = 34,900

PLATELET = 123,000 Yes!!

Nicholas finally slept through the night and only had one bad diaper in the night at 3:00am. He is still tolerating his feeds and continues to eat a little food. He wants it now, and will sometimes walk to the fridge to get something. When his calorie intake is high enough to sustain he will be taken off at least two pumps. Right now the pumps are only pumping food and some medications. Nicholas went to the doctor this morning and had a great check up. His numbers are great and they are impressed with his recovery. His numbers are higher than he has ever been able to do on his own in his whole life, even after transfusions. He is going to be scaled down from the steroid slowly, and this will start tonight. He ate another quesadilla for lunch with a couple of bites from some nuggets. He went with us for a ride in the car and loved it. He did not like to go back to the doctors though, and he cried for a little while. Hope that this goes away and he realizes that he is not staying and it is only a check up. We will have check ups two times a week, so lets hope that they get better. He had a very runny diaper while we were at the doctors and needed to change his clothes and socks. This was very upsetting, and he needed his new socks so I went to the car to get them and he was very happy.

January 17, 2005 Monday - ( Day +46) Outpatient - (Day 3)

The day went very well with  Nicholas. He has started to get more energy now and is continuing to eat. He still loves quesadillas, coffee, and chicken McNuggets from McDonalds. He is back to himself "a wild man" He really wanted to wrestler last night and he got playing so hard that we accidentally blocked his line for his feeds and the alarm pump started to go off. We did not figure out what happened for a couple of minutes. I do not think that Nick realizes that he just has a bone marrow transplant. He wants to go, play, and walk. He only took about a hour nap today and went to bed after watching Jay Leno. All in all Nick is doing wonderful. He has a check up tomorrow at the hospital. Please pray for good results. Thanks

January 16, 2005 Sunday - ( Day +45) Outpatient - (Day 2)

Nicholas woke up to having a very good day again today. He was singing and dancing all morning. His smiles are larger than ever and we did not think that was possible. He always had big smiles and was always happy. Now he is really, really happy with really, really big smiles. His hair is still white and he is losing a little more of it. Still not all though, but thin. He wanted to go and run errands with us today and get out of the house, so he went. We drove around town while he looked out the window and found the McDonalds, Burger Kings, and Taco Bells. We bought him some chicken McNuggets, and at first he turned them down, but while he watched me eat he decided to take a bite of them himself, and then continued. He ate 9 bites in all. This is great and we are on our way to Nicholas feeding himself solid food. When he starts to eat on his own and can get enough calories through the day he will be removed from 2 pumps and will be mobile all day. The only thing that will be left is the oral medicines. Lets keep on praying that he continues to eat more everyday, and his health continues to do well. What a trooper. We love you Nicholas.

Update: Nicholas took a hour nap this afternoon and woke up in a great mood. He has showed some signs of our old Nick throwing a fit if he did not get his way. (Pretty funny)!! We tae at taco bell tonight and he told us that he wanted a quesadilla. I did not even know that he knew that word, but he did. We even asked him a couple of times and he continued to say "Quesadilla", so I bought him one. I gave it to him when I got in and he ate 1/2 of it dipped in ranch dressing. He definitely has not lost his taste for quesadillas, chicken nuggets, and coffee.

January 15, 2005 Saturday - ( Day +44) Outpatient - (Day 1)

Nicholas fell asleep last night before Jay Leno ended. He had a great night and did  not even wake up at all. He was ready for a busy day today. He took all of his morning medicines without a problem. We had to go to the hospital this morning at 9:30 for a blood test to see what his cyclosporin and platelet levels are. We are very pleased to find out that his levels are great and he has a platelet count of over 90,000, and this is completely on his own. The last time his platelets were this high it took 3 transfusions to get there. This is great his body did this all on its own. Yeah!! He is all settled in to his new place and we went for a drive this morning to see the town. He really enjoyed it. It is a beautiful day here in Salt lake around 50 degrees and blue skies. Nicholas decided that he wanted McDonalds this afternoon (chicken nuggets w/ranch) so we bought them for him knowing that he would not eat them, but guess what!!!He did!! he had 1 bite of a nugget and 1 french fry and about 10 drinks of coffee. This is huge since we are tryin g to get him to eat so he can be removed from the feeding tube. The process for the kids to get them to eat can be long, the doctors say, so anything that he eats on his own is a great step for all of us. He is also drinking more water on his own. He continues to surprise us everyday with the conversations that he has with us. It is incredible. Well, we have another round of meds for tonight and the home health nurse will be coming over at 6:00pm to answer any questions and help us with them. Please keep him in your prayers and check back for the updates!!

January 14, 2005 Friday ( Day +43) Outpatient (Day 0)

Woohoo! We are getting released today for the 100 day stay in outpatient care here is Salt Lake City. Nicholas will be leaving the hospital on his own today around 5:00PM. We will have to learn how to take care of his feeds and IV medications. He has a lot of them and it will be a little over whelming, but we will get the hang of it. It is exciting and scary at the same time. Nicholas is doing great and looks awesome. He is very active and is ready to leave the hospital. This is a new phase of his bone marrow transplant, but it is a good one.

UPDATE: Nicholas left the hospital today just after 5:00pm and walked out on his own like a big boy. He said good bye to some of the nurses, but he did not really want to leave. We have been here for 9 weeks and I guess it just became home for him. When we arrived at the apartment Nick was a little nervous but eventually settled down. Home health came over to help us set up the pumps and get the medicines ready. After Nick took his medicine he watched wiggles and began to get comfortable in the new apartment. I left him watching Jay leno (his nightly routine) and will see him in the morning. He has a doctors appointment at 9:30am to check the levels of his anti rejection medicine then back to the apartment. He should do real good in the new home environment. Please keep on praying for his continued success.

January 13, 2005 Thursday ( Day +42) 

WE HAVE NUTRAFILLS =  2,300

WHITE BLOOD CELLS =  3,400

RED BLOOD HEMATOCRIT = 28,200

PLATELET =  41,000

Well it is the morning of the 13th are we are getting ready for a press conference with the channel 5 news here in Salt Lake City. The news team have continued to follow Nicholas and his recovery and we are going to be interviewed along with doctor Ash today at 12:30. I will report when the interview will be aired. Nicholas will get to leave the room with a mask on for the interview. This will only be the second time that he has left his room in 8 weeks and the other time was for his surgery last week. He will definetly be excited to get out and walk and see peoples with out going to surgery or something. The packing has started and we will be out of the room at the hospital by 2:30pm on Friday January 14, 2005. We are excited, but it is a little scary. Well, I have to go but I will update later tonight on how he did today.

Channel 5 KSL News Jan 13, 2005 SLC

January 12, 2005 Wednesday ( Day +41) 

WE HAVE NUTRAFILLS =   2,200

WHITE BLOOD CELLS =  3,100

RED BLOOD HEMATOCRIT = 28,700

PLATELET = 38,000 

Nicholas has continued to do very well today. We have been told that we are definetly going to be released on Friday at 2:00pm to outpatient care and the start of the 100 day road to recovery in outpatient here is Salt Lake City. Nicholas' skin looks great and all around he just looks awesome. We played all day. He is taking almost all of his meds either by his feeding tube or by mouth and is doing good with it. His numbers are a little up and down, but this is to be expected because we are switching him to oral, meds and they should level out. He is very ready to get out of the hospital now. He gets upset whenever more than one nurse enters the room because he thinks that they are going to put a tube in his nose or something. He is very aware of what is going on now and wants nothing to do with it. He is still not eating yet, but the doctors say that this is a long term deal because he has not eaten bu mouth for 6 weeks now and his tummy needs to stretch out. He is taking drinks of water and a little coffee so we have a start. Hopefully he will start to eat soon so we can take the feeding tube out. Please continue to wish Nicholas good luck and a fast recovery.

January 11, 2005 Tuesday ( Day +40) 

WE HAVE NUTRAFILLS =   1,700

WHITE BLOOD CELLS =  2,600

RED BLOOD HEMATOCRIT = 27,800

PLATELET = 54,000 Yes!!

Nicholas is having another great day. More meds are being taken away and converted into oral for the possible discharge on Friday of this week. The doctors have started him on his feeds which is just a type of baby formula full of vitamins so his stomach can continue to work and the rest of his system and body. The scope of his organs shows that all of his organs are in great shape with no visible damage from the chemotherapy. His mouth is still sore and there is still a little mucusitis around his tongue area. He is in a great mood and his speech is getting better everyday. He is picking up new words all of the time. He does not stop dancing to his videos and it is a joy to be by his side everyday. He is such a strong little boy with a great drive. Our son Nicholas has done a very great job fighting through this process and it is amazing. What a pumpkin. We love you!!

Getting discharged to the Ronald McDonald Apartments here is Salt Lake City on Friday is pretty scary, but it will be good for him and everyone else. This will start the 100 day process to continue to build his immune system and return to Idaho eventually. He is rid of the disease CEP and running on the donors bone marrow. Now we need to keep him healthy so his immune system can continue to be strong. What a trooper. Please keep him in your thoughts and prayers for a continued process of healing and looking forward to coming home in about 100 days. Thanks

January 10, 2005 Monday ( Day +39) 

WE HAVE NUTRAFILLS =  1,000  

WHITE BLOOD CELLS = 2,000

RED BLOOD HEMATOCRIT = 26,400

PLATELET = 50,000 Yes!!

Nicholas' numbers are still looking good. The doctors like the fact that they are holding. They decided to take Nicholas off the pain pump today so there is another line and pump gone. Most of the medications have been converted to oral to get ready for our discharge in a week or so. Nicholas needed another feeding tube put up his nose today so he could take his oral meds easily. The first line that was put in was a size 8 and it ended up being too big and all he did was choke and throw up, so it was pulled out and a smaller one was put in. This was a size 6 and was the same size that he had last week and he has been tolerating it all day pretty well. Nicholas even did very good when it came to putting it in his nose. I was impressed. He is such a trooper. He had diarrhea pretty bad tonight, but despite it all he was singing and dancing. He has been in such a great mood this last couple of days and it has been awesome. He gets disconnected from 12:00 every afternoon until 5:00pm because he does not have any meds flowing and he can walk around his room freely. He really likes this and especially standing in the door and "looking at the peoples", he says. It has been wonderful to have him feeling so good. Please keep him in your thoughts and prayers!!

January 9, 2005 Sunday ( Day +38) 

WE HAVE NUTRAFILLS =  1,300  

WHITE BLOOD CELLS = 1,800

RED BLOOD HEMATOCRIT = 26,000

PLATELET = 54,000 Yes!!

Nicholas' platelets went up 20,000 on their own and we are told that this is not driven by the steroids. The numbers can be all over the board being on the steroids, but the platelets are not usually affected by them, the doctors say. We cannot wait to see what the numbers are on Monday. His nutrafills and white blood cells also went up. This is a great sign of recovery. Nicholas is a "wild man" He is getting back to his normal self. He has a ton of energy and wants to dance and play all of the time. They have taken him off a couple more antibiotics and put him on oral. His pain machine dose will be cut in half today, and probably tomorrow be taken away. This is a good thing unless he is still in pain at night. He still has some stomach cramping, but only seems to be at night. Nicholas played so hard today that he had two naps. It is a lot of work feeling good. The nurses detached him completely from the machines that he has been attached to since November 20, 2004 and he got to play, walk, and drive his little car without IV lines to worry about. This was great, but scary since this has been his life line for so long. He will get his feeding tube again today to start feeds and keep his stomach working. He seems like he really wants to eat, but does not. This morning he took our donuts and took a very little bite of them and he drank some of my coffee, and keeps on drinking water from his cup a few times today. This is a great sign that he might be recognising that he is hungry. Nicholas had a very great day today, and all of the family is gone now except for him mom and dad. Nicholas has began to tell me to "change my pants" when his diaper is full. I was very surprised since we tried to potty train him for so long before we came to Salt Lake City. He also said tonight "Go to Starbucks and get a white chocolate mocha." His speech is really picking up. He really tries to say everything that he hears. He has been so much fun today and so funny that it is great. Our Nicholas is back!! The doctors say that we might get moved to out patient as early as Friday this week as long as he continues to do well. He still needs to eat and take his medicines by mouth and not get sick at all. If he continues at this pace it might happen, if not probably by mid next week. This is awsome, but a little scary. This will start his 100 day count down in out patient and recovery to eventually be able to go home to Idaho. Please keep up the prayers for a continued fast recovery. Thanks to everyone!!

January 8, 2005 Saturday ( Day +37) 

WE HAVE NUTRAFILLS =  800  

WHITE BLOOD CELLS = 1,400

RED BLOOD HEMATOCRIT = 31,200

PLATELET = 35,000 

Nicholas has started to do better since we started the steroid treatments to fight the possible GVH. He has still had mild low grade fevers, but they are coming down as the day progresses. His energy level has gone up and he wants to feel better so bad. He has been playing, walking, and changing videos through out the day. Grandma Daleen, Aunt Becky and Doug are here so he has a day full of family to see and play with him. His numbers went down but the doctors are not worried about this because they say it is steroid driven and that we should expect that the numbers will be all over the map. "If anything gets too low we will help him" the doctors say, but he is doing great. "Lets look at his numbers tomorrow before we get to excited." Please keep Nicholas in your prayers for a great and fast recovery.

January 7, 2005 Friday ( Day +36) 

WE HAVE NUTRAFILLS =   2100

WHITE BLOOD CELLS = 3,400

RED BLOOD HEMATOCRIT = 25,300

PLATELET =  78,000

Nicholas had a much better day than yesterday. He still has low grade fevers and stomach cramping that they think is GVH except for the fact that it is not showing up on any biopsies. All tests are negative, but the doctors have decided to start him on steroids to fight the GVH since he is showing all of the signs of having it. The steroids will also help heal the mouth, and stomach that are still sore and upset. He was in a great mood tonight talking and singing to wiggles. Gramdma Daleen, Aunt Becky, and Doug are down here to see him this weekend. He still had some cramping and itching in the night and this is also a sign of GVH. Nicholas' fevers did not go as high as last night, but still has low grade fevers. Hopefully the steroids will help to heal this also. Please keep him in your prayers!!

January 6, 2005 Thursday ( Day +35) 

WE HAVE NUTRAFILLS =  1,700  

WHITE BLOOD CELLS = 3,400

RED BLOOD HEMATOCRIT = 23,000

PLATELET = 12,000 

Nicholas has a pretty rough day today. He had to go to surgery to be scoped to check for GVH and other things that can come up with bone marrow transplant. He was sedated and biopsies were done on his throat and stomach.  The doctors also did a nose wash to check for the Para-influenza. During the procedure the doctors were very happy with most of the operation. They thought that his organs were not affected by the chemotherapy, except his mouth. There were still a lot of sores in the back of his throat. They did not see any visible GVH but the biopsies will tell the story tomorrow. He has been having a very bad day trying to get rid of the gas in his belly, and he is feeling a little bit miserable. He has been on oxygen all day and we hope that he will not need it tomorrow. His fever did hit 104+ today and we are still having a hard time trying to keep the fevers down. Nicholas had a chest x-ray, a stomach x-ray, and they both looked good along with his lungs. We should have a better day tomorrow and hopefully the fevers will start to go away. We should also get some answers on the biopsies that were taken today. Please keep him in your prayers!!

January 5, 2005 Wednesday ( Day +34) 

WE HAVE NUTRAFILLS =  1,900  

WHITE BLOOD CELLS = 3,400

RED BLOOD HEMATOCRIT = 27,100

PLATELET = 16,000 

Nicholas has had a pretty rough day. His fevers are back and made it up to 38.5 cel. tonight. Nick is going to go into surgery to have a scope to see what is going on down in his stomach. The doctors will biopsy his stomach, intestines, and esophogus. His surgery will be at 9:00am. This will hopefully tell us what is happening with his stomach and if he has GVH or not. The flu might be back also. While his fever was down he was in a pretty good mood. The feeds quit today to give his tummy a rest before surgery. They started him on a antibiotic today in case he needs it with the surgery. He took it pretty well with no reactions. He will have a pretty rough couple of days so keep him in your thoughts and prayers. I will be at the hospital most of the day tomorrow, but will try to post a update.

January 4, 2005 Tuesday ( Day +33) 

WE HAVE NUTRAFILLS =  2,000 yeah!! 

WHITE BLOOD CELLS = 3,300

RED BLOOD HEMATOCRIT = 28,000

PLATELET = 20,000 

Nicholas had a wonderful day today. His numbers really came up. He went on the feeds (pediatric formula) to try to get his stomach to work. He tolerated it all day and did not throw up at all. He was very happy singing and dancing all day. He took a nap at 12:00 but only for about 1.5 hours. He continued to get woke up for vitals and x-rays. At 4:00pm he took another nap and woke up with a low grade fever. He has not had a fever for a few days now so this was a little upsetting. He was still in a good mood and looks great. Hope that it is nothing, but blood cultures were done and we should know in the morning. Hopefully it will just pass and will see what the doctors say in the morning. For all that are reading please pray for a continued recovery. Thank you.

January 3, 2005 Monday ( Day +32) 

WE HAVE NUTRAFILLS =  1,300 

WHITE BLOOD CELLS = 2,900

RED BLOOD HEMATOCRIT = 28,700

PLATELET = 24,000 

Nicholas had a wonderful night. He slept through for the first time in weeks. His numbers fell a little today and the doctors will get a little more aggressive with the medications. His tummy still is having a hard time with the foods, but we hope that they will get better soon. The doctors are switching some of the IV meds to oral and putting them through his feeding tube. He does not seem to have the energy level that he had last night, but he has tried to dance a little and do a little talking. He is taking a nap now and hope that he feels a little better when he wakes up. It was so nice to see him with so much energy last night hopefully it will return tonight. His numbers are down a little today, but the doctors do not seem to be very worried about it today. They will review them in the morning. 

His vitals are great.  Nicholas had a very playful day. He wanted to sit in the window and look at all of the people walk by and talk to them. The nurses got him a chair to stand on so we did not have to hold him. He had a blast. He walked to and from the DVD closet quite a few times to change his DVD. He jumped up and down on the bed and danced. His energy level is really coming up. Just before we went to give Nick a bath we stood him up to take off his diaper and the nose tube got caught on the edge of the chair and was pulled out. It did not seem to bother Nicholas too much, but it really bothered his parents. It had to be put back in because this is how he is being fed to try to get his tummy to work. The doctors increased his pedialyte and he did very well with it all day. There is still a threat of GVH, but that is why the doctors are trying to get his tummy to work. Nicholas did great when the nurses put the tube back in. He swallowed a couple of times and it was all done. What a trooper. Hopefully his numbers will come up tomorrow. For now we need people to keep praying for his recovery. Thank you!!

January 2, 2005 Sunday ( Day +31) 

WE HAVE NUTRAFILLS =  1,700 

WHITE BLOOD CELLS = 3,200

RED BLOOD HEMATOCRIT = 29,500

PLATELET = 36,000 

Nicholas has done very well today. His skin looks great today. He is really starting to look like himself everyday. The extra puffiness and water weight is starting to go away. The doctors have started him on pedialyte to try to get his tummy to start to work. They give him a medication to coat and sooth his tummy 4 times a day. Nicholas had the pedialyte running all day and night and seemed to do OK with it. At 8:00pm he decided to start to jump and dance and was full of energy. He laughed, wiggled, giggled and jumped up and down on the bed to one of his favorite wiggle videos. It was great to watch him sing, dance and laugh so much that he did not want us to put him down and sit with him. He wanted to keep on shakin. Maybe it is the pedialyte in his tummy that is helping him to feel so good. He is healing and getting better everyday and we are moving toward outpatient all of the time. Nicholas still has to be able to eat, have no infections, no threat of GVH, and be able to take some of his meds by mouth. It is great that he is healing so well. This whole process is amazing. Thank you for your continued prayers for the fast recovery of Nicholas.

January 1, 2005 Saturday ( Day +30) 

WE HAVE NUTRAFILLS =  1,800 

WHITE BLOOD CELLS = 3,000

RED BLOOD HEMATOCRIT = 31,000

PLATELET = 16,000 

Nicholas had a great night last night and he decided to dance to Jay Leno this morning. His color and his skin is looking great as his rash continues to heal. He had to have a feeding tube put into his nose today because he has not started to eat yet. He still has some lingering mouth sores and despite the fact that he has had a few sips of water and coffee he need to be eating consistently so the doctors can remove the TPN (Liquid food) and the Fat that he is receiving through his port. He needs to get his stomach working again so they will start to drop in some food for him through this new feeding tube very slow so his body gets used to food being in his stomach. This is the start to getting him ready for discharge and outpatient care. This is a little scary but he is doing great. After his food was started tonight he vomited twice and this was also expected. The doctors told us that this would probably happen due to the fact that he has not had any food in his stomach for a few weeks and that this would be normal. It will be a slow process but he will be eating again on his own soon. This is just the next step in the recovery process. Please keep nick in your thoughts and prayers for the continued recovery process.

 

Nicholas Ashby Donation Account US Bank (714-529-3983) Or just walk into any US Bank   Make a Donation through Paypal:

If mailing please send to: Nicholas Ashby Donation Account P.O. Box 1817 Lewiston, Idaho 83501