If you would like to send a e-mail to Nicholas click here.

Nicholas' Journal April 2005

April 30, 2005 Saturday - (Day +149) Outpatient - (Day 106) 

WE HAVE NUTRAFILLS = 1,200  going up

WHITE BLOOD CELLS = 2,000  going up

RED BLOOD HEMATOCRIT = 27,400 

PLATELET = 124,000 going up

     Nicholas had a great day today. The doctors still believe that he does not have GVHD and he just had a bad case of C-Diff ,and they also think that he had a viral infection to boot. We seem to be on the downhill side of all of this now. He only had a little diahrea today and did take a few bites (even though they were small bites) of some food. We did figure out that the flagil that he is on for the C-Diff does give him a upset stomach and that is adding to why he is not eating. We got all of his meds down today without him chocking and throwing them up. This is a step in the right direction. He is starting to feel better everyday and his energy level is picking up. He pretty well keeps us running. At this point Nicholas is doing much better and we hope that GVHD does not become an issue and that we will be going home soon. Please keep him in your prayers for a healthy and speedy recovery.

April 29, 2005 Friday - (Day +148) Outpatient - (Day 105) 

WE HAVE NUTRAFILLS = 800 

WHITE BLOOD CELLS = 1,800 held

RED BLOOD HEMATOCRIT = 28,700 going up

PLATELET = 113,000  going up

     Nicholas woke up this morning feeling great until the antibiotic Flagil that is fighting his C-Diff was given to him. He did not feel very good, and just wanted to go back to sleep. When the doctors arrived in the room a couple of hours later he felt better and we learned that Falgil can give you a very upset stomach. We think that this may be a part of the reason that he is not eating. The doctors still think that he has C-Diff and maybe another viral infection that is causing him to not eat. They are just going to continue to treat this weekend and see what happens. Nicholas' diarrhea today was almost gone. He has very little when he goes to the bathroom. This is a great step since it was out of control last week. His numbers continue to go up and this means that what he has is probably viral C-Diff and not GVHD. Nicholas took all of his meds today and did not throw up. He even took a few bites of food today. The bites were so little, but at least it was a bite.He took a 2 hour nap and was ready to go at it again. We are all still waiting and praying that Nicholas has a very fast recovery. Please keep him in your thoughts and prayers.

April 28, 2005 Thursday - (Day +147) Outpatient - (Day 104) 

WE HAVE NUTRAFILLS = 900 stayed same

WHITE BLOOD CELLS = 1,800 going up

RED BLOOD HEMATOCRIT = 27,000 going up

PLATELET = 106,000 

     Nicholas went to bed at midnight last night and woke up in a good mood this morning wanting Pizza Hut Buffalo chicken pizza with ranch dressing. He called me at 7:30am this morning to let me know. I was very surprised that he was up and at them so early. He is in a very good mood including all of his independent attitude. He also took a 3 hour nap today at 12:00 and now is ready to go again. He still has a upset stomach and threw up again tonight. He is still not eating and it is no wonder that his tummy is upset. The volume of diarrhea has really slowed down and he seems to be getting better.

     All of Nicks counts either went up or stayed the same. This is great. The doctors want to wait and see what he does through out the weekend. If he continues to get better we will go home at the first of next week, and if his numbers fall they will scope him to see if they can find anything. Right now the doctors think that he has C-Diff and maybe another viral infection, and think that he is on the healing side of things. We are just going to rest for the weekend, play, and see what happens. Please keep him in your prayers for a continued fast recovery.

April 27, 2005 Wednesday - (Day +146) Outpatient - (Day 103) 

WE HAVE NUTRAFILLS = 900 going up

WHITE BLOOD CELLS = 1,700 

RED BLOOD HEMATOCRIT = 26,900 going up

PLATELET = 109,000 going up

All of Nicks counts went up across the board. We are very glad of this, but he still has diarrhea. The doctors are still not sure if it is C-Diff or GVHD. They need to wait. These two have the same symptoms with the exception of the GVHD the counts will fall and stay down, but with C-Diff the counts will start to come up as the viral infection starts to go away. If the doctors do not find anything conclusive they will have to scope his throat to see what is going on and take some cultures to biopsy. Nick woke up pretty happy today and had pretty good energy, but still a little tired. He took all of his meds without throwing them up, and even ate a little cream of wheat. This is great especially after not eating for 5 days, and has not had a fever for 4 days either. It seems that things are coming around in a positive direction right now. Please keep him in your thoughts and prayers for a fast recovery.

April 26, 2005 Tuesday - (Day +145) Outpatient - (Day 102) 

WE HAVE NUTRAFILLS = 700 

WHITE BLOOD CELLS = 1,300 

RED BLOOD HEMATOCRIT = 24,300 

PLATELET = 88,000 

Nicholas' numbers are still going down. He is still not eating, but the doctors have now added his TPN which is his food given orally to give him all of the nutrition that he needs until they can find out exactly what he has. They still do not know if it is C-Diff or GVHD. His body needs a couple of days of rest to see what transpires. The doctors may have to scope him to see what they can see and also to rule out one or the other. He had a few bites of chicken nuggets, and a couple of bites from a hamburger. This is a step forward. He started to feel better just a few hours after the TPN started. He took all of his night time meds without throwing them up. This is also very positive. We think that he figured that every time he took his meds that he was going to get sick, so he did. We changed the color of them and added a flavor to kind of trick him and it seems to work. Please pray that his numbers start to go up and he gets better soon. 

April 25, 2005 Monday - (Day +144) Outpatient - (Day 101) 

WE HAVE NUTRAFILLS = 1000 

WHITE BLOOD CELLS = 1,500 

RED BLOOD HEMATOCRIT = 25,700 

PLATELET = 76,000 

Nicholas' numbers have taken another drop. This was not expected, but the doctors say that his body just needs a day of rest. His cyclosporine count was at 540 and the toxic level is 600. They have started IV cyclosporine to get it under control and more therapeutic. Nicholas is on day 5 of not eating any food and throwing up all of his meds. Nicholas has shown that he is a little more alert and becoming more himself even though his numbers are still dropping. We are glad that he is back in Salt lake City where the doctors know him very well. Please pray for a fast recovery and his numbers start to go back up.

April 24, 2005 Sunday morning- (Day +143) Outpatient - (Day 100) 

WE ARE HEADING TO SALT LAKE CITY. WILL BE ON A PLANE IN 4 HOURS!!

 

Spokane 6:00am	Salt Lake City 9:00pm
WE HAVE NUTRAFILLS = 403 very worried	WE HAVE NUTRAFILLS = 1100
WHITE BLOOD CELLS = ?	WHITE BLOOD CELLS = 2,000
RED BLOOD HEMATOCRIT = 24,300	RED BLOOD HEMATOCRIT = 28,000
PLATELET = 72,000	PLATELET = 72,000

Nicholas continues to throw up all of his meds and still will not eat. He has thrown up 3 times in 2 hours. He is very sick and we need to get to Salt Lake City where they know his body better. We are afraid that if we wait another day that Nick will not be fit to travel, not even on a plane. He was not suppose to even fly on a plane for 2 years, but Salt Lake Doctors approved it and said that he was not well enough to travel the 12-15 hours by car, so get him down here. His ANC count was 403 this morning and he could lose his graft at anything under 500. We are very worried. Nicholas and his Mom got to the hospital in Salt Lake City at 9:00pm where the doctors and nurses were waiting for him. They worked on him until 1:30an in the morning taking tests and cultures trying to stabilize him. His first set of numbers went up right away over night. This is awesome. Dad loaded up the car with everyone's things and drove most of the night to get here in the morning. I was very glad to be here in Salt Lake City, but it has been a very long 5 days and stressful 24 hours.. Please pray for a fast recovery of Nicholas. 

April 22, and 23 Friday, and Saturday (Day +141, 142) Outpatient - (Day 97, 98) 

Nicholas' numbers during these three days have continued to fall. His fever has gone away, but he just started to throw up everything and he is not eating. He also has diarrhea so bad that he never gets off the pot. He just does not feel good at all and it seems like we are still going down hill instead of getting better. His mom and I need to make a decision soon if we need to take him  back to Salt Lake City or not. We will see what his numbers say on Sunday morning and then we will make a decision. For now please pray that he gets better very soon. We love you Nicholas.

April 21, 2005 Thursday - (Day +140) Outpatient - (Day 97) 

WE HAVE NUTRAFILLS = ?

WHITE BLOOD CELLS = 1,700

RED BLOOD HEMATOCRIT = 29,900

PLATELET = 99,000 

Nicholas' counts are coming up a little. He has been without a fever for 24 hours and we are going home. He has been a "wild man" asking to go home. He has been his normal self dancing to Ellen, and watching sesame street. He had a great night, sleeping through without the fever. His diarrhea is still there, but slowing down. I think that we are on the mend. We made the drive from Spokane to Lewiston and he slept most of the way. He went through the day with no appetite and just did not want to eat. He took all of his meds and seemed to be doing well, then the fever started again. We called Spokane and they want us back in the morning unless his fever continues to go up, then get there as fast as possible. Please pray for Nicholas and his health. Pray for a fast recovery and this bug to just go away. Please keep him in your thoughts. I will update in the morning.

April 20, 2005 Wednesday - (Day +139) Outpatient - (Day 96) 

WE HAVE NUTRAFILLS = 969

WHITE BLOOD CELLS = 1,700

RED BLOOD HEMATOCRIT = 27,800

PLATELET = 95,000 

Nicholas' counts are still falling. He still has had a fever in the night and still has diarrhea. The antibiotics are still flowing and he is on 24 hour fluids to keep him from getting dehydrated. He was a little dehydrated when we got here yesterday, but is better now. His Nutrifill (bone marrow) levels are lower now than they have been since we left the hospital. This is still probably due to the fact that he is sick. Nicholas does not have much of a appetite, but did take a few bites of my cheese burger and some cream of wheat. He seems to be in good spirits and feeling better. Now, if we can get his numbers to go up and the diarrhea to go away we will be good. Please keep him in your prayers for a fast recovery.

April 19, 2005 Tuesday - (Day +138) Outpatient - (Day 95) 

Everybody got up this morning ready to go to Salt lake City and Nicholas had a fever of 38.1 Celsius. 37.7 is the line of which we have to be at a doctor immediately, so we are on the road to Spokane for an emergency doctors visit. Please pray for Nicholas that he is OK. We need as many prayers as we can possibly get. Please everybody keep him in your thoughts and prayers for a fast recovery. I will post when I know more.

UPDATE:

WE HAVE NUTRAFILLS = ?

WHITE BLOOD CELLS = 2,100

RED BLOOD HEMATOCRIT = 31,400

PLATELET = 105,000 

His numbers are starting to fall, but this is probably due to the fever and the diarrhea. We arrived in Spokane and they admitted us immediately and put Nicholas on some potent antibiotics. He does not have an appetite at all and just does not feel good. We are here in Spokane and will come home when Nicholas gets better. Please pray for a fast recovery. 

April 18, 2005 Monday - (Day +137) Outpatient - (Day 94) 

Nicholas has not felt very good last night and today. He has not had a fever, but is just feeling under the weather. He is still running like a wild man, but he is also sleeping a lot and not eating at all. He is now off his steroid as of today and we do not know if this has anything to do with it or not. We have pushed his doctors appointment up a day to Wednesday instead of Thursday and we are on our way to Salt Lake City in the morning, unless he gets a fever then we will go to Spokane. I hope that this is just a bump in the road, please pray for him and help him feel better. Prayers are very powerful, and we need some now. I will post again when I can. Thanks you for all of the continued support and prayers.

April 15, 2005 Friday - (Day +134) Outpatient - (Day 91) 

 

Nicholas just loves to play on the train in Locomotive Park. He asked all morning until it warmed up if I would take him to the train. Then off we went. He had a blast. He thinks that these big trains are cool. He had a great day and even took a 2 1/2 hour nap. He is back to his naps during the day but it is no wonder because he plays hard from the time he wakes up until he goes to sleep. We love him. Please keep him in your prayers for a great doctors appointment in Salt Lake City next Thursday.

April 14, 2005 Thursday- (Day +133) Outpatient - (Day 90) 

 

He was having fun today. We cooked and ate, took a bath, and played with his cars until he fell asleep. He just keep on going and it is so much fun to see him do so well. He loves his Bob The Builder Videos and watches them a lot. I think that he has traded in Wiggles for the most part. Please keep him in your thoughts and prayers for a continued fast recovery.

April 10, 2005 Sunday- (Day +129) Outpatient - (Day 86) 

 

Nicholas loves trains and big trucks. He loves to play with them, and gets excited when he sees them. He kept talking about trains on Saturday so I took him to Locomotive Park to play on the train. At first it scared him and he did not want to go very close, but after we left he wanted to go back. We ate lunch and then went back to see the train, and he was great as you can see. He wanted to touch it, and then stand on it. He thought this was very cool. He kept saying "Big Train, Wow!!" This just was a great day and a lot of fun. Please keep Nicholas in your prayers for a continued fast recovery.

April 9, 2005 Saturday- (Day +128) Outpatient - (Day 85) 

 

As you can see Nicholas was enjoying the ride on his bike today. He feels great and now that it is not raining, and is not too cold at certain times of the day he can go out and ride his bike. He loves it!! He gave us a little scare today because his temperature went up a little, but it seems that he was just hot in his sweatshirt, and was playing hard all day that he heated up. Nicholas went ot bed and fell fast asleep. He had a busy day running and playing. Please keep him in your prayers for the continued success of his bone marrow transplant.

April 7, 2005 Thursday- (Day +126) Outpatient - (Day 83) 

 

Day 126 of transplant and Nicholas is still doing great. He is a blast to be with, just so full of life laughing, and giggling through out the day. He is just so fun!! His speech continues to grow, and just to watch and listen to him you would not know what he just endured a couple of months ago. His recovery is amazing. He is now potty trained and does not need his huggies anymore, yeah!! He now tells us "No Huggies, No huggies!!"He is so cute. Please keep him in your prayers for a continued fast recovery.

April 5, 2005 Tuesday- (Day +124) Outpatient - (Day 81) 

WE HAVE NUTRAFILLS = 1,863 

WHITE BLOOD CELLS = 2,700

RED BLOOD HEMATOCRIT = 37,000

PLATELET = 140,000 Really Awesome!!

Nicholas had a great doctors visit yesterday. His numbers came back today and we are impressed. He is doing so good. All of is counts went up, and his platelets sky rocketed. He is at his highest platelet level ever. What an awesome job he is doing. His doctors in Spokane did a wonderful job also, and now we do not need to go back to Salt Lake City for 2 weeks. He had a 3 hour infusion of IVIG (Immune cells) and this was the first for 4 weeks. We were glad that they gave this to him because it really helps to keep his system strong. He is running and playing like a "wild man" and living true to his name. His steroid level dropped again today and he should be off them completely in 2 weeks. Whoo hoo!! Thank you Nicholas for doing such a great job. Please continue to keep him in your prayers for a fast recovery. 

April 3, 2005 Sunday- (Day +122) Outpatient - (Day 79) 

 

Nicholas had a great time this weekend still singing and dancing to Ellen and Wiggles. He continues to say new words and where he gets some of these I do not know. He is just a kick. Nicholas keeps all of us laughing all of the time. He is going to go to his Oncologist in Spokane, Washington tomorrow for a complete blood work up. He feels great so it should be fine. Please keep him in your prayers for a great check up.

 

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