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Nicholas' Journal December 2004

December 31, 2004 Friday ( Day +29) 

WE HAVE NUTRAFILLS =  2,200 Going Up!!!

WHITE BLOOD CELLS = 3,600

RED BLOOD HEMATOCRIT = 31,700

PLATELET = 19,000 

Nicholas was in a great mood today. The doctors are starting to take down some of his medicines and are going to start to prepare him for outpatient in a couple of weeks. He needs to start to eat or they will put a tube in his nose because they need to get his belly working. He just does not want to eat yet, but he did have a few sips of my coffee this morning. His pain medicine was also shut off but we can give him a push if he needs it. The continuous was just shut off. He took a 4 hour nap in the afternoon and woke up playful. He walked to the DVD closet to change the show. His numbers look great and he seems to be on a road to recovery. He looks and acts better everyday. He was very funny yesterday - we have are old Nick back!! It is wonderful to see him smile. Please keep up the prayers for a fast recovery. Thanks

December 30, 2004 Thursday ( Day +28) 

WE HAVE NUTRAFILLS = 1700 Going Up!!!

WHITE BLOOD CELLS = 3,300

RED BLOOD HEMATOCRIT = 32,500

PLATELET = 21,000 

Nicholas had a rough night after 1:00am this morning. He started to itch where his rash is and the doctors could not seem to get it under control. They will try a new medicine for it today to see if it works better. His numbers are great, but his platelets fell and he had a fever last night also. His blood hematocrit is great due to the transfusion he had yesterday and hopefully he will n ot need another blood transfusion. His pain medicine was lowered yesterday and he is doing pretty good with it. His rash seemed to get better today and he started to talk and sing as the morning went on. Nicholas took 5 steps last night to and from his DVD closet to pick out a new movie, and he had a few drinks of some water and a few drinks of coffee. This is the first thing that he has had for a few weeks now. He needs to start to eat, so this is a great sign. He is trying very hard to feel better and looks better everyday. The doctors are still looking at GVH as part of the skin rash, but they will wait for the weekend to see if it just heals. So far so good and he is taking a nap now. Please pray for a better night.

December 29, 2004 Wednesday ( Day +27) 

WE HAVE NUTRAFILLS = 1500 holding!!!

WHITE BLOOD CELLS = 2,800

RED BLOOD HEMATOCRIT = 24,000

PLATELET = 36,000 awesome!!

:):):Just was told this morning that Nick has been free of Staff Infection for 5 days and Para-Influenza as of today:):):):):)

We had great news today about Nicholas' staff infection. His cultures have tested negative for 5 days now and his test for para-influenza has also come back negative as of today. This is awesome!! The flu has been a fight for him for 2 weeks and now it is gone. Nicholas started to itch last night due to the dry skin that he has from the healing of the rash that he broke out in when he reacted to some medications in the last 2 weeks. At 3:00am this morning the doctors gave him a cream to put on and it seems to help. He has not felt as good as he did yesterday, but I think that this is from just being tired. He is getting a blood transfusion today and hopefully it will be the last one. The more that his body produces that less transfusions he will need. His platelet count dropped last night so he will probably get a platelet transfusion tomorrow. The doctors are still pleased with his counts and say that we are also getting through the bumps in the road. His TPN (food) that he has been receiving 24 hours a day went to a 18 hour day in the hopes that he starts to want to eat. He needs to start eating so some of the IV medications will continue to stop, and some of them will be given by mouth. This is the process of outpatient care that we are on our way to. Nicholas is looking better everyday and is resting well. His color is good and now he has very light hair, almost white. This is weird, he has always had brown hair. He never did lose all of his hair, and we are glad that we did not shave his head. He still has a full head of hair (a little thin) but looks great. Please keep him in your thoughts and prayers.

December 28, 2004 Tuesday ( Day +26) 

WE HAVE NUTRAFILLS = 1500 yeah!!!

WHITE BLOOD CELLS = 2,700

RED BLOOD HEMATOCRIT = 25,000

PLATELET = 62,000 awesome!!

:):):):):)Just got word that Nicholas is 100% Porphyrin free and is rid of the CEP that ailed him.:):):):):)

Nicholas woke up at 5:00am this morning and thought that it was time to party. He was in a good mood and watching teletubbies. His number are awesome and his nutrifill count went up 400 today. This means that he is producing on his own with no help from meds. He looks great and the rash seems to be going away. The doctors are still concerned about the infection, and it may be in his port. If so, he will have it removed in surgery for awhile until he heals and then the doctors will put another one back in. They are still interested in GVH and will start to test for it in 2 days. They have not found any in his stools, but they want to make sure and get it early if so. The doctors are still keeping an eye on his rash, but it has healed 100% in the last 2 days. Nothing is going to change for now since Nicholas is healing so well. The meds will stay the same and with great hope the flu and staff infection will just heal and go away. He has been very playful today and has been able to enjoy his videos. Right now he is taking a nap and is getting ready for the second half of a wonderful day. 

Nicholas continued to do well through out the evening. He continues to look good and the rash looks better all of the time. he blew his first kiss at me tonight that he has for about a week or so. It is nice to see him in such a great mood. We will find out today if he has to go to surgery to remove his port. I hope not.For everyone that is reading Nicholas' daily journal we thank you and hope that you continue to pray for a fast recovery for our precious son Nicholas. 

December 27, 2004 Monday ( Day +25) 

WE HAVE NUTRAFILLS = 1100

WHITE BLOOD CELLS = 3,000

RED BLOOD HEMATOCRIT = 28,000

PLATELET = 17,000

Nicholas woke up at 3:00am this morning and thought that it was time to party. He was in a good mood and watching teletubbies. He continued to stay awake until 12:00pm when he started to get tired. When the doctors visited this morning they were pretty happy with his counts. I told them that I would like the nutrifill count to raise, but they still expected this. Nicholas received a platelet transfusion today and it only pushed his count up to 24,000. His base line is 30,000 so another transfusion will be done at 11:30pm tonight. He was on a benedryl sleep from 1:00pm until 4:30pm. When he woke he seemed like he did not feel very good, but by 6:00pm he was doing great. He was enjoying the television, watching videos, singing and wiggling around in my lap. He was laughing, talking, and wanting to be tickled. This was awesome. We have not seen this for a while now because he has been so sick. These are the moments to cherish. I did not want the night to end. I think that he is finally beating these sicknesses. He looks great, the rash looks to be going away, and his color in his face is great. He had diarrhea a lot today and the puffiness in his face looks to be going down. At this point the doctors seem to be a little concerned about GVH (Graft Versus Host Disease), but they are just going to watch his rash for now. For everyone that is reading Nicholas' daily journal we thank you and hope that you continue to pray for a fast recovery for our precious son Nicholas.

December 26, 2004 Sunday ( Day +24) 

WE HAVE NUTRAFILLS = 1400

WHITE BLOOD CELLS = 3,000

RED BLOOD HEMATOCRIT = 29,900

PLATELET = 32,000

Nicholas' nutrifills (bone marrow) have fallen again today which is expected from the doctors. They took him off the Nupegin (the medication that caused the engraftment) and expected the counts to fall, then come back. This might happen for a while and the doctors will continue to watch the numbers. The doctors are still happy with his transfusion despite the setbacks. These curves in the road is expected with bone marrow patients and we just need to shift gears when these things happen, like the flu and this infection. Nicholas stayed up for most of the night and watched his cartoons, played with a helium balloon, and just jabbered to the wiggles. He seemed to feel a little better, and his cough is not as bad as it has been in the last few days. This is very positive. He is still trying to vomit, but it is just very dry and nothing comes out. This happens every time that he lays down and then sits up. We have realized that if we just keep him on our laps sitting up he is more comfortable and is a little better mood. The flem from the mouth sores, and the flu does not have time to sit in his chest and cause him to cough. He generally looks better today and the rash also looks better. When he turns red from the antibiotics, and starts to itch we give him benedryl and the redness and itchiness seems to go away. This definitely makes him more comfortable, but he sleeps on the benedryl during the day and then does not want to sleep in the night. A low grade fever came on in the morning and then again in the afternoon. Still, he definitely seems to look and feel better. Nicholas still stayed awake until 10:00pm and then went to bed. He had a small reaction to the meds and a fever, but he went to bed on tylenol and benedryl. Hope he has a great night. Please continue to pray for a fast recovery for this very special son of ours.

December 25, 2004 Saturday ( Day +23) Merry Christmas!!

WE HAVE NUTRAFILLS = 2400

WHITE BLOOD CELLS = 5,200

RED BLOOD HEMATOCRIT = 32,000

PLATELET = 17,000

Nicholas had a rough night and did not sleep very well. His fever continued and every time that se sat up from sleep or even changing his diaper he vomited. He is still having reactions to some of the meds, but we think that we have them pin pointed. He is still fighting para-influenza which is a strain that is not very easy to recover from and a bacteria infection. The doctors do not know why this bacteria infection came back, but it is easily treated unless it is from the port that he has, then he will have to go to surgery to have the port changed. Right now they are treating it with the antibiotics including the lines. This will be a long process. Nicholas just felt very under the weather all day. Santa came to visit in the morning and Nick slept through it. He was sleeping because we had to give him benedrly to pre-medicate him for the platelet transfusion. He slept most of the day then we had a scare. The doctor ordered a chest X-Ray, blood draw for oxygen levels, and a sample from his runny nose to check for the flu and RSV. We were scared because Nick was breathing very hard and was really working in his chest. The doctors were afraid that he might get pnumonia. The chest X-Ray came back great and we were told that the x-rays were as clear as the first day that he got here, his oxygen levels are great, and he does not have RSV. We are still waiting for the flu to come back, but we do know that he has it. The doctors are just continue to treat for the things that he has and will still continue to look for others while his body is trying to get stronger. He really needs to get rid of the flu and this bacterial infection so he can continue to heal.

Nicholas was never in the mood all day to open his presents, and slept most of the time. We will just open them when he feels better. Nicholas fell asleep at 11:00pm tonight and was sleeping comfortable only for a couple of hours. We gave him some anti-nausia medicine and then it was time to party he thought. At 4:00am in the morning we were watching Bear in the Big Blue House and Wiggles. He definetly felt better for the time. His fever still continues to come around and he is still coughing. Although, his cough seems to be better, and his fever in not as high he just all around still does not feel very good. This all could be from the engrafting, or the flu, or the infection. They are all being treated and hopefully he will feel better soon. Keep him in your prayers!!

December 24, 2004 Friday ( Day +22)

WE HAVE MORE NUTRAFILLS = 3,400

WHITE BLOOD CELLS = 5,200

RED BLOOD HEMATOCRIT = 32,000

PLATELET = 34,000

Nicholas woke up in a better mood and feeling much better than yesterday. He still has the flu and mouth sores. His lips are pealing and he is coughing a lot. The two medications that he had a reaction to yesterday he will not receive anymore and some of the others are getting cancelled due to engraftement. He needs to start to eat so we can go to outpatient for the next 100 days, but he needs to start to eat on his own first. The doctors say that the flu and the mouth sores will heal now that we have counts and the white cells will definetly help out this process. He is not going to get the Nupegin anymore since he is engrafted and his counts might fall a little, but this is expected. He is sleeping now due to being pre-medicated for his IVIG (Immune Gamma Globulin). The doctors were hoping that his IVIG counts were above 600 or they would have to give more IVIG, but they were at 1100. His body is doing great with the engraftement, and hope to continue to show positive signs of healing. He will not need as many transfusions now because he has engrafted and his body will start to produce these things on its own. This is all great. I have requested a prayer from the church and did talk to Brad this morning. He said that he would mention it at the candle lighting tonight. Many thanks to the people who have supported Nicholas through this time. Please continue to keep him in your thoughts and prayers. Merry Christmas to everyone from us in Salt Lake City.

Nicholas had a very rough night coughing and fevers. Not a lot of sleep was had tonight. He was not very happy with upset stomach, congestion, and vomiting. All in all Nicholas did not feel very well.

December 23, 2004 Thursday ( Day +21)

WE HAVE MORE NUTRAFILLS = 800

WHITE BLOOD CELLS = 1600

Nicholas is looking much better today. He still has a bit of the flu, but he is unofficially engrafted. His bone marrow should continue to produce along with the white blood cells. He received a platelet transfusion today, blood, along with some potassium. Dr. Kushner wanted a urine sample today to test for porphyry's and for the first time we were looking at normal urine. His urine showed no visible signs of porphryrns in it. The theory would be that his body would be porphryn free upon engraftment. Looks like the theory was right. He should start to feel much better everyday while his body is in the healing process. He will be getting less antibiotics after today because the doctors are starting to reduce the amount of medicines due to the fact that he is engrafted and his body will start to heal on its own. If all goes well we might get released to outpatient very soon. We will need to start to get him to eat and get his new taste buds working again. Please keep him in your thoughts and prayers, and wish for a speedy recovery. 

One of his antibiotics was stopped today and another was changed to another type. This new type would be easier on his liver, but he had a reaction to it. Also, his blood pressure is high which is expected at this point, but the blood pressure cuff is hurting his arms very much and we cannot get a very good reading. the nurses have to use the manual pressure monitor and it does not hurt nick, but you would be surprised how many nurses just rely on the machine and do not take the pressure manually. He was given some pressure meds yesterday to bring his pressure down and he also reacted to it also. His arms broke out in a big rash and his body turned red. His fever flew sky high again and we fought to bring it down. About 4 hours later the meds started to wear off and he was getting more comfortable. Things will have to change tomorrow. Keep him in your prayers.

December 22, 2004 Wednesday ( Day +20)

:):):):)WE HAVE MORE CELLS!!!:):):):):)

Nicholas is having another great day with the exception that he seems very tired. He has 1000 white blood cells today and 300 nutrifills. The doctors are expecting him to engraft tomorrow. Everything is going well with the transplant for the doctors despire how hard it has been for nicholas. He has really endured a lot and has been very resilient. This morning his platelets were at 18,000 so he received a transfusion. He has a cut on his ear that did not want to stop bleeding so we had his counts checked again and they were at 42,000 and his baseline is 50,000 so, he does need another platelet transfusion which is in progress right now at 3:30pm. His rash on his arms does seem like it is clearing up. He is still feeling a little under the weather but the healing process has started. He still has the flu but everyday it is getting better. The more cells the better it will get. If we are lucky we may get discharged next Friday to the apartments for the next 100 days of healing while his immune system continues to build.

December 21, 2004 Tuesday ( Day +19)

We have had a great morning so far.  Nicholas has produced 100 nutrafills (The nutrifills are the necessary elements of engraftment. These are the new bone marrow cells themselves) which is the start of engraftment. We need 3 days of over 500 nutrafill count to be engrafted. The doctors were very pleased with the counts starting to come in. He also had an increase in white blood cells today and they went to 600. This is all great and hope to be engrafted in a week or so.  These counts will also help him get rid of the flu virus that we have been fighting for 9 days now. The fevers are starting to get better, also his days are getting better. Please keep praying for his counts to continue to come up. Nicholas also needed a platelet and potassium transfusion today. The lacesicks that he is receiving tends to cause his potassium to run a little low so he was given some this morning also, but is needed to help him get rid of some of the water weight that he is retaining. All in all things are looking great and we are optimistic that the engraftment process in under way and his road to recovery should begin. Please keep him in your thoughts and prayers.

Update: Nicholas took a nap today for 4 hours. He slept good and was very relaxed. It was nice to see him to take a nap like he regularly did everyday. He slept on my lap and did not want me to put him down. When he woke up a small fever started but was stopped by some Tylenol. He then was in such a great mood, singing, dancing, and just giving his older brother Mitchell a hard time. He was teasing Mitchell, laughing with him, and smiling while his picture was taken. This was such a great evening. I cannot wait to see what his counts are tomorrow. Lets pray that they are high. I will post as soon as I know. 

December 20, 2004 Monday ( Day +18)

Nicholas' white cell count went up to 300 today. Either the nupegen is working or it is on his own either way this is awsome. Please pray for more counts tomorrow. He had to have a platelet transfusion this morning because his counts were 20,000. After the transplant his counts went up to 58,000. This is a great jump. He received a blood transfusion yesterday and his hematocrit is at 28,000. This is also great. We are still battling the high fevers that are from the para influenza virus that he caught last week, but the doctors are positive that he will kick this, and his white cell count will continue to raise and help us out to get him better. The good parts of the days for Nicholas are getting longer and the fever parts of the days are getting shorter. This is very good and it looks like the body is trying to get better. Nicholas is a trooper. He is trying so hard to feel good and he is also happy that his older brother is here to spend some time with him.

December 19, 2004 Sunday ( Day +17)

Nicholas received another platelet transfusion last night. His first one yesterday did not bump him up very much because he had a fever and they were ate up as fast as they were transfused. His platelet transfusions always cause fevers, and now that we have been battling fevers all week this just added to the rest of them. He had a very rough night last night and a rough day today. At 2:00pm today he broke his fever and also had a blood transfusion. He felt great until 8:00pm and then the fever started again. We got this one under control by 9:30pm and Nicholas was in a very good mood until he went to bed. It looks like it is going to be a great night tonight. He received a shot of nupegen yesterday hoping that it would jump start his white blood cells and engraftment and his white cell count went from 100 on Saturday to 200 on Sunday. Lets hope for the white cells to continue to climb and then engraftment. This will help him get rid of the flu bug that he has and make him feel better. Looking for counts everyday. Nicholas' brother Mitchell arrived here today and he was very excited. It is great that they Mitchell and Nicholas can spend a few days togather during Christmas. Please pray for all to go well. Thanks

December 18, 2004 Saturday ( Day +16)

Nicholas had another night of fighting fevers. Found out today that he has a type of flu virus that we have been fighting and this could be the cause of the fevers. He is getting platelets today because the fever last night made the counts drop. His blood hematocrit is at 26,000 and I will know the platelet level later. Changing of the 1 antibiotic and the 1 pain medication did the trick for the reaction that he was having. He is more comfortable now and is not vomiting anymore and his cough seems to be getting better also. They started a larger dose of IVIG to help him get rid of the virus that he has. The doctors are also going to give him a medication that will help him engraft faster so his body will kick in there on his own and produce some white blood cells that will also help him to get rid of this virus. That medication will start tonight. He did walk around the room and look out the window today and also did some dancing and showing off for the nurses. This was awsome to see him up and around this afternoon. Tonight the fever went up again to 104 but we were able to get it under control in a couple of hours. It looks like it will be a long night. Please keep Nicholas in your thoughts and prayers, and pray for a good engraftment and recovery.

December 17, 2004 Friday ( Day +15)

Nicholas was up at 4:00am this morning wanting to play and watch the wiggles. He was in a very good mood. It turned around at 7:00am when the vomiting, coughing, and fever started again. We talked to the doctors and we think he is having a reaction to the antibiotic that he has been receiving since the third of December. The doctors are going to change his antibiotic and we have changed his pain medicine also. After settling in a couple of hours later he did very well. His platelet count after 2 transfusions yesterday is at 57,000 and his blood hematocrit is at 27,000. He had a great afternoon then at 6:00pm his fever started again, It is did  not escalate like the rest and the rash on his hands and face did not get as bad. His rash is limited to only the areas that the propheria had blistered , and we had him under control with the fever in about 2 hours. He was asleep by 9:00pm and doing great. His pain is now under control also and he is resting very well. We love you Nicholas!! Keep up the good work!!

December 16, 2004 Thursday ( Day +14)

Nicholas has a little of a rough road today. He has not felt very well, and we think that his mouth sores are hurting him. We have also figured out that the pain medicine is causing the rash that has persisted for the last 4 days. He has been sick and vomitting today and just all around under the weather. His fever is still here, but not as high as it has been in the last few days.All of this is being tended to including all of the other medicines that he needs. He will receive blood and platelets today and this should help him feel a little better also. He was up off and on through out the night tossing and turning and was just uncomfortable with a fever that just would not go away. He still does not want to eat or drink anything, but this is expected. The doctors say that we still have 4 -5 more days of this until he engrafts, but they will get him as comfortable as they can. In between these times he is very funny and has all of the nurses laughing at him. He is really talking now and repeating almost everything that you say. Please pray for a successful engraftment.

Nicholas had a very rough night. We have figured out that every time he gets a certain antibiotic he has a very bad reaction. We thought that it was the pain medicine, but now we think it is the antibiotic. His fever was very high again last night and broke out in a rash. He was vomiting and coughing. He had a very rough night and by 12:00am he was sleeping soundly. Lets hope for a great day today. Please pray for his engrafting.

December 15, 2004 Wednesday ( Day +13)

Nicholas woke up top a very sore throat this morning and having a cough he vomitted. The mouth sores are really hurting him at this time. Around 8:30 an he began to calm down. He has had a low grade fever all day which is better than the last few days of the high 102+ fevers. This afternoon he even felt good enough to dance to wiggles with one of the techs. He was in a pretty good mood most of the day until 5:30pm when he was in pain again, started to cough and then got sick again. He was put on more tylenol and a pain killer so he could rest. He had a very busy day today playing and he did not even take a nap. This did not help, but I am glad that he is feeling a little better. He went to bed at 8:30 pm tonight and will probably sleep through the night. His platelets are 37,000 and his blood hematocrit is at 26,500. Still doing good. He is still  not eating or drinking, but this is due to the mouth sores. The doctors are still very happy with his progress. Please lets pray for him and all of the other kids on the bone marrow transplant unit.

December 14, 2004 Tuesday ( Day +12)

Nicholas woke up this morning wanting to watch the helicopter land on the hospital roof from his window. He was in a good mood and talking even though his temperature was still 99 degrees. After fighting a 102 - 104+ temp for the last 2 days he thought that he felt pretty good. His mouth sores are here and hurting him a little and has had some pain medication a couple of times in the last couple of days. His platelets went from 69,000 to 38,000 overnight because a fever just eats up platelets. he received another transfusion this morning and his blood count is doing good at 28,000. At 11:00am this morning his fever started to come back, but not as bad. It is holding at about 101. He has broken out is a rash around his belly and feet that they think is from the high fever and will just go away. The doctors are really surprised that the mouth sores and fever did not start last week as expected and he is doing so well. We were told to expect this up and down with the fever for 3 to 4 more days. He has been put on more antibiotics to try to fight the fever even though they do not know what it is. His antibiotic regiment has been more preventative, now they are upping the dose to more of a maintenance level to fight what ever this might be. They said that they rarely figure out (only 1/3 of the time) what causes the fever, and is usually just his body adjusting. This is normal and expected by them. It is so hard for the parents even thought the doctors are very pleased to this point. Nicholas had 100 white cells in his blood this morning which is good since his numbers have been at 0 for the last 2 weeks. Please pray that this is the beginning of his grafting of the new bone marrow. He is resting right now and I will try to post later tonight.

Nicholas did very good throughout the day. His fever persisted, but did not climb as high as the last few days. He went to bed at 10:30pm and was watching Jay Leno (his favorite) and was laughing and singing. He still had a fever, but felt great in comparison. Watch for the posting later today for Day +13. Thanks for watching!!

December 13, 2004 Monday ( Day +11)

Nick still has his fever and it peaked to 104 last night. His platelets and blood counts have dropped and they are going to give him some platelets right away this morning. Many blood tests were run yesterday and hopefully the doctors will have some insight to what is happening and why he has a fever. He will also receive some blood today because his hematocrit is 22,000. Please pray for Nicks fever to go away.  

We are still having a hard time controlling Nicks fever. His platelet transfusion went well and they are at 69,000. This is a great number, but with the fever these could still drop, but good until tomorrow. He is receiving his new blood now so the hematocrit should jump also. The tylenol does not seem to be helping Nicks fever much and he has developed his mouth sores which has been expected from the doctors way before now. The doctors have been happy that the fevers have not come before this because it is a part of the process. It may be caused by a viral infection, or graft versus host, or just early engraftment. All of the blood tests keep on coming back negative, but they are still looking. He got a dose of pain medicine to help make him comfortable this morning. He is sleeping now. Please pray for Nicks fever to go away.  

Nicks fever spiked again at 8:00pm tonight and he was given more pain meds. It started to come down a little at 12:00am while he was watching Jay Leno. He seems to be resting good now so I will post tomorrow.

December 12, 2004 Sunday ( Day +10)

This morning Nick woke up in a good mood. His platelets fell to 38,000 and his blood hematocrit was 24,700. He received a platelet transfusion this morning and got a little groggy due to the benedryl that is used to pre-medicate before transfusions. He started into a fever this afternoon around 3:00pm that went up to 102. He was given Tylenol and this solved it temporality and then again at 8:00 pm his fever started to climb again. Again, more Tylenol then he went to bed at 10:00pm. At this time his fever was at 100 and falling. He did enjoy some Wiggles and did a little dancing and singing. We played a little basketball before dinner but he did not want to eat. His bag-o-food is keeping him full. Please pray for a good night and for Nicks fever to end. 

December 11, 2004 Saturday ( Day +9)

Nicholas woke up this morning in a great mood. He slept until 8:30am. His hematocrit is at 26,000 and platelets were at 58,000. He will be good for the day and hopefully he will hold for tomorrow without having to have any transfusions. He wanted to eat popcorn this morning so some was made. So far today he is great. Still being strong and healthy. Good Job!! He had fun singing and playing this afternoon. He is getting ready for bed right now and will hit the sack at 10:00pm. Have sweet dreams stinker.

December 10, 2004 Friday ( Day +8)

Nicholas did great all day. He received a platelet transfusion today and slept for 3 hours. He needed the rest since he did not take his nap the day before and did not get as much sleep in the night. He is feeling so good that he just wants to play and dance. He gets very excited when we put the DVD for Wiggles Santas Rockin. He really likes the Teletubbies Again, Again. He fell asleep at 12:30am and slept through to 8:30 am this morning. He even slept through vitals and diaper change. He is doing great. Keep it up Nick!! We love you.

December 9, 2004 Thursday ( Day +7)

Nicholas decided to play last night until 1:00am this morning. He woke up in a very good mood. His hematocrit is 22,000 and his plateletes are at 72,000. He did not receive quite as good as a bump from the platelets as he did on saturday, but this is still a good count. He will get a blood transfusion this afternoon because of his low hematocrit. This is all expected. The doctors are very happy with his progress and say they wont change anything "we will just keep on crusing." He still loves his Teletubby toy and continues to play with it. His hair is still falling out and might be all gone by the weekend. His mouth care is getting easier for him now, and he is even letting the doctors look in his mouth. He did not like this until last night when the nurse got him to open up so she could look inside and he thought that was OK.

Nick did not take much of a nap, he did not want to miss anything. He only slept about a half hour. He played all day while getting his blood transfusion. His cheeks look a puffy, but we think that they look puffy because he is losing his hair.:( The doctors and nurses think that he just looks great and is doing well. "Good Job Nicholas"

December 8 , 2004 Wednesday ( Day +6)

Nicholas had another great night. He decided to play with his Teletubby toy until 1:00am this morning. He slept very well and woke up happy. His platelet count is 58,000 and hematocrit is at 25,000. He will get a platelet transfusion today and maybe blood. If not blood they will transfuse the red blood cells tomorrow. The doctors say that he is "crusing" and doing very well. Nicks hair is still falling out, but a little faster now. So far he has not paid much attention to this. His speech is really picking up. He says more words than ever and even running together small sentences. He is repeating everything that is said in the room. He is even playing with his toys on his own and pretending while doing so. He is doing very well. I will post later tonight if anything changes. Thanks to all of you that are thinking of him.

December 7, 2004 Tuesday ( Day +5)

After Nicholas' bout with high blood pressure last night he received some benadryl and then fell a sleep. He slept through the night and got up at 6:00am. He had a great day today playing, singing and walking around the room. He did not eat or drink much today, but he was in a great mood. His hematocrit today was 25,000 and his platelets are around 68,000. He will probably get a blood transfusion tomorrow. The doctors do not like his hematocrit to fall below 24,000. He will probably be good on the platelets for the next couple of days. Well, the time that we have been told will come Nicholas is losing his hair now and is falling out pretty fast. :( It is not coming out in chunks yet, but definitely thinning. He had some visitors tonight from Pleasantville, Utah and the mother and her kids saw Nicholas' segment on the KSL 5 news a few weeks ago and decided to take up a drive for him. The daughters made him a quilt that he loves. We covered him up with it tonight and he wanted to stay under it. The boys also bought him a Teletubbies toy, a race car, and they all made cards for him. They are awesome!! He loves the Teletubbies toy and will not quit playing with it so he took it to bed with him. It just made his day. Nicholas has no immune system right now and he is in a immune suppressed area so the family could not go into his room to see him so they talked to him from outside the room. Nicholas sat on the bed and opened his presents from them. He was very excited to get them. It is so wonderful that there are so many nice people out there. Nicholas really appreciates everything that has been done for him ,and we are very grateful also Many thanks goes out to the family that came by today. Please keep him in your thoughts and prayers!! Day +5 and counting.

December 6, 2004 Monday ( Day +4)

Again, Nicholas woke up at 8:00am after sleeping through the night for the third day in a row, and he is in a good mood. He is very slow to wake up in the mornings, but is doing great. The doctors came to visit and said that he is doing great and they will not change anything. His platelets are 138,000 and blood hematocrit is 28,000. He has not needed a transfusion since Saturday. His last blood transfusion was on Thursday before his new bone marrow transplant. Everything is working well and as expected by the doctors. He did not have much of an appetite this morning and went down for a nap around 2:00pm this afternoon. All of his toys were spread out on the floor this morning and he had a blast playing with them. He still has not lost his hair, but we are assured by the doctors that his hair will fall out. Please keep him in your prayers!! 

This afternoon Nicholas was eating some macaroni and cheese. He had a 3.5 hour nap and woke up a little hungry. His blood pressure has continued to go up today. We found out that the doctors had to increase his dose of cyclosporine (the anti-rejection medicine) today and one of the side effects of this is high blood pressure. His blood pressure medicine was also increased today and by tonight he did not feel very good. He threw up his macaroni and cheese and all in all he just did not feel good. The nurses gave him some benadryl and an anti nausea medicine and this puts him to sleep. We had to hurry and give him his bath, do mouth care, change his bandages, and get him into his pajamas before he went to sleep. We succeeded!! He fell asleep early tonight so lets hope for a good night for him. 

December 5, 2004 Sunday ( Day +3)

Nicholas had a great day today. His platelets were 168,000 and his blood hematocrit was almost 29,000. This is great for him and his body is doing what it need to do at this time. The doctors are pleased with his counts and energy. His brother, grandma, and aunts left at around 4:00pm today to fly home to Lewiston. He was a ham all weekend while they were here. He was very happy to see brother Mitchell and the rest of the family. He ate a Oreo cookie, some chicken nuggets, his coffee drink (without the coffee) and a few bites of French toast this morning. He has been very active and in a great mood dancing and singing to the Wiggles. He had a small nap and decided to not go to sleep until 1:00am.Great job Nick, we love you!!

December 4, 2004 Saturday ( Day +2)

Nicholas had a great night. He finally fell asleep about 11:00pm after Jay Leno Show and slept through to 8:00am. He was slow to wake up, but he looked good. The doctors visited and nicks nose started to bleed. We could not get it to stop. He had another platelet transfusion even though they were 58,000 he needed was to stop the bleeding. After the transfusion his counts were 138,000. He has never been this high before. His hematocrit was 25,000 and he will probably get some red blood cells today. He has developed mouth sores now which is expected with this type of procedure. Nick got out of bed with an upset stomach, but when he got it all out (he threw up) he felt much better. He also gave us a full diarrhea diaper that the nurses called a bone marrow diaper. By 12:00 he was in a very good mood. He was playing, walking, talking, and just having fun all day. He did not even take a nap. He is very excited to see his brother, and Nick has been hanging out with him all day. He was so happy you would never think that he has endured what he has in the last 2 weeks. It was great to see our Nick full of personality and giggling today. He even ate some chicken before bed. We put him down at 10:00pm and he was still full of giggles. Please keep him in your prayers!! Keep it up Nicholas.

December 3, 2004 Friday ( Day +1)

Nicholas had a pretty rough night last night tossing and turning and just as not as comfortable as he could. He woke up this am in a pretty good mood for a little while then went back to sleep. The doctors like how he is doing they think that it is great. He woke up in the afternoon to a bear and balloon delivery from hugs and hope and was very excited. He loves stuffed animals and balloons. He was in a great mood playing, eating, and laughing. He even drank some of his coffee from Starbucks and had a half of a grilled cheese sandwich. His platelets were 18,000 in the morning and then fell to 14,000 in the afternoon. This is expected and he got a platelet transfusion and had a reaction to it. It did not make him feel very well and he went back to sleep for the rest of the day. He woke up for a little while around 9:00pm and then was put to bed at 10:00pm. Nicholas' grandma, aunts, and his brother arrived to spend the weekend with him this afternoon. He will love that. 

December 2, 2004 Thursday ( Day 0)

Happy Bone Marrow Birthday Nicholas!! We love you and you have done a great job this week. 

Today is day 0 meaning that Nicholas will receive his new bone marrow infusion today at 3:00pm. The donor gave his bone marrow yesterday for Nicholas and it is on the way to the University to be processed. To the donor: Thank you, we wish you a road to a fast recovery. Nicholas' bone marrow birthday will be at 3:00, but the day will be busy for Nicholas because the doctors have to get him ready for the infusion. Many doctors and nurses will be involved in this process for the next couple of days. I will update later tonight. Again, happy bone marrow birthday Nicholas!!

Nicholas did very well all day today. He needed a blood transfusion because his hematocrit fell to 22,000. His platelet's have remained at 32,000. The bone marrow that Nicholas received had to be red cell depleted so it took a little longer to prepare that the doctors expected. His birthday was around 4:00pm. He slept right through it. The doctors thought that he would sleep for 3-6 hours, but he woke up after 1 hour later. He woke up at 6:00pm tonight and was in a very good mood. He was full of smiles, laughing, and wanted to watch teletubbies. He even ate a couple bites of toast and drank some water. His skin color looks great (very red) and his urine in his diaper looks normal. The theory is that at Nicholas' transplant he would no longer have dark urine which is caused by the porphryns that his body cannot filter due to the CEP. This will be tested today by looking at a diaper under a black light. Porphryns make a diaper glow hot pink, and today his should not glow.

December 1, 2004 Wednesday (pre-transplant Day -1)

Nicholas went through the night and the ATG well. The medications worked to keep him feeling good and stable. He went to bed at 11:00pm and was pretty tired. He woke up this morning to a low grade fever and a reaction to the ATG again. It was not bad and was under control in about an hour. He has not done this in the mornings before. We are waiting for the doctors to tell us why. He will only get the ATG today.  NO MORE CHEMO. This is the last day of the ATG also. The doctors call this a rest day because tomorrow afternoon he will receive his new bone marrow. Please keep him in your thoughts.

Nicholas pretty much slept all day until 4:00pm. He woke up a little in the morning and had a belly ache. He was very cranky about this, but eventually got comfortable and went back to sleep. When he woke later in the afternoon he was in a great mood and even ate a little toast. He looked great today and he finished his last dose of ATG. He is now getting some liquid food with all of the vitamins and minerals that his body needs to help him for the road of recovery. He went to bed at 10:30pm and slept. This is his day of rest. He will receive his new bone marrow Thursday at 3:00pm. Wish him a happy bone marrow birthday tomorrow!!

 

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