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Nicholas' Journal March 2005

March 31, 2005 Thursday- (Day +119) Outpatient - (Day 76) 

 

Nicholas had a very fun and wonderful day today. He loves to dance and sing with Ellen DeGeneres in the morning while he is getting ready for the day. We went to McDonalds to get his daily chicken mcnuggets for lunch and he decided to kick back in his robe. After eating part of daddy's hamburger and some of his nuggets it was time to hit the road and cruz down the highway. With a full belly he took a short nap in the car and woke up ready to go again. What a trooper. He is a kick. Please keep him in your prayers for a great Dr. Appt on Monday. Hi K.K. Wuv you!!

March 30, 2005 Wednesday- (Day +118) Outpatient - (Day 75) 

 

Nicholas had a blast today running around the house like a mad man. He has been asking for Taco Time for the last few weeks so we went there for lunch.  I was surprised that he was eating that burrito, other than it was dads and he thought that he should eat it. We are now potty trained and he does not even ask for a diaper. He likes his big boy underwear. He will use his own potty himself now. This is so awesome. He has come so far since the hospital it is incredible. We go to the Doctor in Spokane Washington for a check up and a blood work up next Monday. He feels great so everything should test ok. Please keep him in your prayers for the continued success and health of Nicholas and a great check up on Monday.

March 27, 2005 Sunday- (Day +115) Outpatient - (Day 72) Happy Easter!!!

 

		Nicholas had a lot of fun on this beautiful Easter Sunday. He woke up around 7:00am and wanted to get up. I told him that the Easter bunny probably came here while he was a sleep. When he got up and went into the living room it was quiet for a minute, and then a big "WOW" came out as he ran down the hall and grabbed my hand, got me out of bed, and continued to play with his new toys that the Easter bunny left him.
It was so precious. He wanted me to open up the boxes and get his tractors out. He played with them all day. We took them to Grandma's house so he could play with them there. He was so excited. He could not figure out if he wanted to eat, play with my brother, or play with all of his Easter toys. Everyone is so proud of him and his recovery that we all basically just sat there and laughed because he was so funny. It was a great day and we had a lot of fun with him and the family. Please keep him in your prayers for a continued recovery.

March 26, 2005 Saturday- (Day +114) Outpatient - (Day 71) 

 

Today was another great day. Nicholas and I always paint Easter eggs on the Saturday before Easter. He had more fun painting the eggs this year than ever. He sponge painted all of the eggs in the carton and then painted them again. He put them back into the carton and wanted to keep painting. It was so cute. Last year we dipped the eggs, and this year we painted the eggs. I do not know which one he likes better. He ran and played all day like a wild man. It is so great to see him so energetic and happy. Please keep him in  your prayers for the continued success and recovery.

March 25, 2005 Friday- (Day +113) Outpatient - (Day 70) 

 

Nicholas did great on his drive home. He had a very busy day with the doctors and had a great check up yesterday. He was wound up all day and is a great traveler. He fell asleep at 7:00pm and did not wake up until 7:00am the next morning. This made the drive easier for him since he slept most of the ride home. When he woke up he was home in Idaho. We do not have to go back to Salt lake City for 4 weeks now. His levels were great and the doctors were very pleased. He played all day and into the night, and was fast asleep at 9:30pm. He rode his bike outside until it was cold and wore himself out. We did the typical and had pizza fridays, and enjoyed chicken garlic pizza from papa murphys. It has been 4 months since we could have pizza fridays, and it was soooo wonderful.

March 24, 2005 Thursday- (Day +112) Outpatient - (Day 69) 

Nicholas woke up this morning at 6:00am Salt Lake City time giggling, and giggling. His energy level and great mood started right off the bat. It is so wonderful to see him in such a great mood all of the time. He has definetly been a "Wild Man" all day. We are getting ready for his doctors appointment at 9:00am this morning for his blood work and IVIG infusion. I will update later on how great he is doing. Please keep him in your prayers. 

UPDATE:

WE HAVE NUTRAFILLS = 1,800 

WHITE BLOOD CELLS = 2,300

RED BLOOD HEMATOCRIT = 38,100

PLATELET = 90,000 awesome!!

Nicholas had a great doctors appointment, and we do not have to come back to Salt Lake City for 4 weeks. His platelets are doing awesome and all of his other numbers the doctors are very happy with. Nick will get these numbers checked again in 2 weeks in Spokane, but for now we are going back home with great results. Nicholas fell asleep for a little while in the car, but now he is on his way home back to Idaho in the middle of a snow storm here in Salt Lake City. We are leaving early trying to get over the passes during the day, and in the hopes that the snow and the roads are not too bad for driving. Please keep us in your prayers for a safe drive home and a continued wonderful recovery.

March 23, 2005 Wednesday- (Day +111) Outpatient - (Day 68) 

Nicholas has done very well all week keeping up his normal activity level of being a "wild man." He keeps us running. We are on the road to Salt Lake City today for Nicholas' check up and blood work tomorrow. We will know then how stable he has been this last couple of weeks that we have been home. He feels so great that I think that the numbers will come back stable. We have continued to scale him off the steroids and is still doing very well. Please keep him in your prayers for a very safe and comfortable drive to Salt Lake City, Utah today and good blood results tomorrow.

UPDATE: Nicholas did very well this time on his 12 hour road trip. He had a lot of fun!! He was wound tight when he got to Salt Lake City and could run wild. He did not fall asleep in bed until 12:00am. He was so funny just talking up a storm. Well, we are going to bed so we can get up and get ready for the doctor appointment at 9:00am in the morning. Please keep him in your prayers.

March 20, 2005 Sunday- (Day +108) Outpatient - (Day 65) 

Nicholas has had a great last couple of days playing with his brother. Nicholas went to see his grandma Dee and great grandma GG today, and had a very fun time. Grandma GG has not seen Nicholas since late summer and was very surprised at his new self and his ability to talk. He did not stop talking the whole time we were eating lunch. Nicholas had my mom (Grandma Dee) and grandma (Great grandma GG) laughing the whole time. They are so glad that Nicholas is home and doing so well. He was a chatter box and very full of energy. It was a great afternoon. Thanks to all who continue to keep Nicholas in their prayers. Lets keep praying for a continued fast recovery.

March 19, 2005 Saturday- (Day +107) Outpatient - (Day 64) 

Nicholas is getting ready for his debut with the family at his Grandma and Grandpa's 50th wedding anniversary. He will have so much fun today playing with all of his cousins, and his brother. He will run wild all day with the rest of the kids in the family. It will be great for him to see everyone. This will be the first time that the whole family will be together in one place since Nicholas went to Salt Lake City.  He was there for Thanksgiving, Christmas, New Years, and Valentines Day. This year will be different, and it is off to a great start. Nicholas loves the family gatherings, and he will have so much fun today. We love you Nicholas, have fun today. Please continue to pray for Nicholas and his great recovery.

UPDATE: Nicholas played so hard at Grandmas 50th Anniversary today that he fell asleep as soon as he hit the car on his way home. He was worn out and had so much fun playing with his brother and cousins. He ran all day. Everybody was very glad to see him.

March 18, 2005 Friday - (Day +106) Outpatient - (Day 63) 

Nicholas and dad had a very busy day today. We had to play, play, play. It was so fun. Oh, yes, I forgot, cuddle, cuddle, cuddle. We had a great time playing with his cars, trike, and all of his toys. He likes to take all of them out of his room and bring all of them into the living room. He has more toys than he knows what to do with. He has not forgot a thing in the time that we were down in Salt Lake City. All of his things were left in the same place and he found them all, even his tooth brush. We had a great time. He is so precious!! Thanks for keeping him in your prayers while he continues to grow healthier everyday.

March 17, 2005 Thursday - (Day +105) Outpatient - (Day 62) 

Nicholas had an appointment with his local pediatrician today. He did very well and did not even cry. He has always liked his local doctor and for that matter he really likes all of his doctors, but when we went to Spokane he had a melt down. I think that he thought that he was going back to Salt Lake City (that is going to happen next Wednesday) for a check up. He had a lot of fun and seemed happy to see Dr. Ambrosin. He and his staff were very surprised with the new Nicholas. He is 13 pounds heavier, 2 1/2 inches taller, talks up a storm, and is soooooo full of energy. The doctor was very pleased with his recovery and very impressed with his over all recovery. Nicholas gave the doctor and nurse a big hug when we left and said bye to everybody. It was a great visit, and great for Nicholas too. We just came home and played the rest of the day and he went to bed at 9:00pm and fell right to sleep. He is precious!! Please keep the prayers coming for the continued recovery.

March 14, 2005 Monday - (Day +102) Outpatient - (Day 59) 

Nicholas had his first doctors appointment in Spokane with Dr. Judy since last summer when he was diagnosed with the CEP. She had been caring for Nicholas since he was 6 months old. When Nicholas left home to go he had a meltdown and did not want to be in the car. He just kept saying "go back home" and cried off and on most of the trip. I think that he figured that he was going back to salt Lake City and did not want to go. He even whimpered a little while we were in the hospital, but when it was done he was ready to go home and the crying was over. He said bye to everybody, and suddenly he was in a great mood. He is just worn out of doctors, and I do not blame him. He will have many more appointments and will get used to them. These will be just for check ups and will not stay unless he gets a fever. He is doing very well and will continue to do so. He stopped to see grandma and grandpa on his way home and gave them lots of kisses. Nicholas is very happy to be back. Please keep him in your prayers for the continued success and recovery. Thanks

March 13, 2005 Sunday - (Day +101) Outpatient - (Day 58) 

Today was just a wonderful day to spend with my son. It was beautiful weather around 70 degrees and we took a drive around Lewiston to just to look to see what is new in town. Nicholas had the usual lunch, McDonalds chicken nuggets with ranch dressing, his favorite. Nicholas was full of energy and he ran and played all of the day. We needed to get ready for the doctors appointment in Spokane Washington tomorrow, but he does not know this yet. He just had a lot of fun playing. Just a great day, great son, and great weather. What a blessing!! Thanks for keeping him in your prayers.

March 12, 2005 Saturday - (Day +100) Outpatient - (Day 57) 

Nicholas woke up raring to go today. He went to spend some time with grandma and grandpa today and then off to his dads. Dad has been cleaning and sterilizing the home all day since it has been closed up for 4 months. Nicholas was happy to come over, and did not forget where he was. He remembers everything. Where all of his toys were left, and all of the goodies in the house. It is amazing!! We are all glad to be home. The journey is not over, but it is just nice to be home. He has doctors appointments on Monday and Thursday next week just for check ups, and so the doctors can see the new Nicholas. He was very happy and energetic today playing and cuddling all day. What a pleasure. Please keep him in your prayers for the continued success and health of Nicholas.

March 11, 2005 Friday - (Day +99) Outpatient - (Day 56) 

Nicholas should be home safely and probably sleeping from the long trip home. I will talk to him when he wakes up from his nap. Dad is getting ready to board a plane today at 11:00am and will touch down in Lewiston, Idaho at 12:00. Nicholas was also on the Channel 5 News at 6:00am this morning. I cannot wait to get home and talk to our little movie star. Thanks for praying for the safe return on Nicholas' family and please continue to pray for the continued success on Nicholas' bone marrow transplant.

UPDATE: Dad landed safely and Nicholas rode in the car all of the way home and only slept 4 hours of the 12 hour ride. What a trooper. Everybody is resting from the long trip and drive today. It is very needed. Nicholas was also on the Channel 5 News tonight at 6:00pm. I did not know this was going to air, but I was told that the news aired his story.

March 10, 2005 Thursday - (Day +98) Outpatient - (Day 55) 

We are leaving Salt lake City, On our way home to Idaho today!!

Nicholas' doctors appointment starts today at 9:30 am for the IVIG and his blood work up. We will also find out about all of his tests that have been done in his 100 day work up. We will also be given instructions on when we will need to be back to Salt lake City for tests, and how often we will need to be in Spokane, Washington for weekly tests. The interviews with the doctors and us for the Channel 5 KSL News will began at 12:00. Hopefully, Nicholas will be on the road by 4:00pm for the 12 hour drive back to Idaho. Dad will fly in and meet him there tomorrow afternoon. I will post his test results later this afternoon when I get settled and Nicholas is on the road. Please pray for great test results, and a safe trip home.

UPDATE:

WE HAVE NUTRAFILLS = 3,900 

WHITE BLOOD CELLS = 4,100

RED BLOOD HEMATOCRIT = 40,400

PLATELET = 70,000 awesome!!

Nicholas' doctors appointment went great today. His counts are all up and he is doing awesome. We spent this morning in teachings and answering questions. Nicholas received his IVIG and the doctors said that he is doing wonderful. The KSL Channel 5 News was there at 12:00 to interview the Doctors, Mary Ann and Rob. Nick ran around and chattered to everybody. Ed Yates just could not believe how he has done and how well he looks. He also could not believe how good Nick talks. He thought that it was especially funny when Nicholas said "channel 5 eyewitness news at 10." They are going to try to end the news with him saying that. The truck got packed and Nicholas is on the road on his way back to Idaho. He should pull into grandmas house sometime early this morning full of kisses and hugs. I just talked to him and 2 1/2 hours into his trip he is in a great mood, and being a good little traveler. Please keep the prayers coming for his continued great health and successful trip home. Thanks

New Update:

Nicholas called me a couple of times last night while he was on his way home to Idaho. He was having a good time 5 hours into the 12 hour drive. He is a great traveler. I will talk to him in the morning when he wakes up. Dad will be bording a plane tomorrow morning and will touch down in Idaho at 12:00.

March 9, 2005 Wednesday - (Day +97) Outpatient - (Day 54) 

Nicholas had another great day today. He was very energetic, running, and talking on the phone. Every time the phone rings he comes running to answer it and says "talk, talk" so he can answer it and not anybody else. It is so cute. We are all very excited to go home in a couple of days. The packing and shipping had has began. Nicholas will leave after the doctors appointment tomorrow and his father will fly in on Friday morning. Nicholas will not be able to fly for 2 years because of the germs and the recycled air on the planes. Nicholas has his regular scheduled appointment at 9:30 am tomorrow for his IVIV infusion, and blood work up just to make sure that we are still in the clear to go home. He is so healthy I know that all of the tests will be fine. Then, the interview with KSL channel 5 News at 12:00. First the doctors, then filming with Nicholas because he is going home. This News Team has done a wonderful job since our arrival that it will be great to do another interview with them. Please continue to pray for Nicholas' tests to come back with very good results tomorrow and to have a very safe drive back to Idaho tomorrow. We love you Nicholas, Good Job!!

March 8, 2005 Tuesday - (Day +96) Outpatient - (Day 53) 

Nicholas wanted both Arby's and McDonalds for lunch today. He also had a Starbucks earlier in the day along with a Burger King sandwich. He is so spoiled. We received a call from the media dept. at the hospital and the channel 5 KSL News wants to do another story on Nicholas. This will be done on Thursday when he has his last appointment while we are here in salt lake City. The doctors will be interviewed also starting at 12:00. The show should air on Thursday night and Nicholas will be a star again. Woo whoo!! We are still on our way home unless something should happen, but for now we are leaving to go home in 2 days and should be in Idaho on Friday. Thanks for all of the continued prayers and we hope that all of you continue to pray for his continued recovery.

March 7, 2005 Monday - (Day +95) Outpatient - (Day 52) 

Nicholas had a wonderful day today. He had a good appetite, a little better than usual. He wanted Mac and cheese for the first time today in a long time. He had great energy and just was all around very fun and cute. He is looking forward to going home this friday. The packing has started and Nicholas has his next appointment here in Salt Lake City on Thursday and then we should be able to go home for a couple of weeks. He will have to see his Oncologist in Spokane, Washington on Monday and then his local Pediatrician on Tuesday of the following week. His body has been doing great since the transplant and please continue to pray for the same in the future.

March 6, 2005 Sunday - (Day +94) Outpatient - (Day 51) 

 

Nicholas continues to feel great everyday. His energy level is also incredible. He wants to run and play all of the time, and the naps in the afternoon are a thing of the past. The transformation from the bone marrow transplant to now is the most incredible thing that I have ever imagined. Nicholas is doing great and we are in our count down to go home in just a few days now. We are all so excited. His speech continues to get better everyday, and now will have a full conversation with you on the phone. He enjoys ordering his own lunch. He is just a pleasure to be around everyday, and he is so cute on top of that. Please continue to pray for his continued success and safe trip home on Friday.

March 5, 2005 Saturday - (Day +93) Outpatient - (Day 50) 

 

Nicholas had another great day full of energy. He really looked forward to the chicken McNuggets from McDonalds and the "cheese hamburgers, Big n tasty, and double cheese hamburgers" as he would put it. He also went to Starbucks to get his white chocolate mocha. The girls there are used to him coming in and he is usually talking up a storm while we are in there. Later in the afternoon we went to Baskin and Robbins for his scoop of chocolate chip ice cream. The days here in Salt lake City have been warm and beautiful, the perfect weather for Nicholas to run and play. Nicholas got a couple of new Elmo videos today to watch while the packing started for the preparation to go back home on Friday. He found a box to play with and had a lot of fun trying to fit into it. Keep up the good work Nicholas!! We love you!! Please keep him in your prayers for the continued success and rapid recovery of his bone marrow transplant.

March 4, 2005 Friday - (Day +92) Outpatient - (Day 49) 

Nicholas has doctors appointments right off the bat this morning starting at 8:30am. The first will be the dentist and then his hearing appointment. The last time we went to the dentist he had to be put on his back fore the check-up. This time was the same. He did not throw too big of a fit when we got there, but he did cry, and the dentist had a hard time to get him to open his mouth, but when he did Nicholas was a trooper and his teeth looked great and their is enough room for the adult teeth to come in wants to see him in 6 months. For us, we just need to continue to do what we are doing. When the check up was done Nick was the dentists best friend giving him high 5's and talking to him as if nothing happened. The dentist and the nurse gave him a couple of toys and friends were made. Then off to the hearing test. Last time they put him in a room and it scared him. We hoped that they did not have to do this again. Guess what?? They did not!! Yeah!!! Nicholas just had a little speaker put into his ear and he had to sit and be quiet for a minute or so for each ear. While he was there he watched the computer do its thing and Nicholas was very quiet through out the exam, then it was finished. Nicholas' hearing is great, and unless something changes he does not have to go back to get his hearing checked again. While we were at the hospital for the last couple of days we saw people that we have not seen since discharge. We said bye to them all and told them we were getting ready to go home next Friday providing that all of the tests turn out well. At this time we found out that Good Morning America wanted to do a complete story on Nicholas at the end of this month, but we will not be here, so it is going to be rescheduled and hopefully before we leave to go home the interviews will be done. KSL Channel 5 News also wants to do a follow up before we go home. It looks like we might have a busy week. I am so grateful that Nicholas continues to do so well and we get to come home. Please keep Nicholas in your prayers for continued good health and a safe trip home.

March 3, 2005 Thursday - (Day +91) Outpatient - (Day 48) 

Nicholas is going in to the doctors at 10:00an this morning for some testing and a bone marrow aspiration. This is a standard procedure at the 100 day mark to test to see if he is running completely on his donor cells. They will also test for many other things including the reason why his platelets may not be producing the way that they want. His platelets have been falling, but the doctors do not seem to be very worried about it. It could be some of the antibiotics that he was on and was taken off last week. We will know this answer today just with the blood test, then with the aspiration. The doctors seem to be confident that everything will be OK. If all of the tests turn out well we may get to go back to Idaho late next week. Nicholas also has a Dentist appointment, and a hearing appointment tomorrow. This is all part of the 100 day work-up. These tests were also run when Nicholas was admitted in November. The doctors use the tests to compare and make sure that there is not any problems. Please keep Nicholas in your prayers for a successful bone marrow aspiration and a fast recovery.

Channel 5 KSL News Mar 03, 2005 SLC

UPDATE:

WE HAVE NUTRAFILLS = 2,900 

WHITE BLOOD CELLS = 3,500

RED BLOOD HEMATOCRIT = 39,600

PLATELET = 53,000 awesome!!

Nicholas' doctors appointments went very well today. His aspiration went well also. He did not like it, and when we entered the surgery room Nicholas fell apart and started to cry. The doctors did a great job, and only had to make one incision to get a great sample. It still looks like next week we will be going home and the arrangements are being made now. I cannot wait to hit Idaho soil on Friday March 11, 2005. Nicholas has a dental and hearing appointment tomorrow morning and these should go well also. Thanks for everybody's continued prayers for the recovery of Nicholas.

February 27-Mar 2, 2005 Sunday - (Day +87-90) Outpatient - (Day 44-47) 

Nicholas has continued to do very well this last few days. He has enjoyed watching his shows on TV and going out a little everyday. He has been able to go outside and enjoys visiting Starbucks and McDonalds. His vocabulary has done very well and he learns new words everyday. He talks to everybody on the phone when it rings, answers and says "hellyoo." It is so cute. Please continue to pray for his fast recovery.

 

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