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Nicholas' Journal September 2005

September 30, 2005 Friday - (Day +302) Outpatient - (Day 259)

 

Yeah!!!		Yeah!!! We are so glad to be home again, and this time for 2 weeks. The next appointment will be a little longer than the 15 minute appointment this time because the doctors are going to give him some IVIG. This will continue top help his immune system. He still feels better than ever, and so full of life and energy, playing, riding his trike, singing and dancing. Please pray for the hemolisis to continue to go away and Nicholas not need any more chemo.		I am so Glad!!

September 28, 2005 Wednesday - (Day +300) Outpatient - (Day 257)

On our way back home to Lewiston, Idaho in the morning, yeah!!!!!!

WE HAVE NUTRAFILLS = ?
WHITE BLOOD CELLS = 6,600
RED BLOOD HEMATOCRIT = 38,300 
PLATELET = 178,000 
BILLYRUBIN = .3

 

Nicholas is doing great. He had a wonderful appointment today with his blood numbers looking awesome. His retic count dropped from 3.2 to  2.9 and his hematocrit went up. This means that his body is producing red blood cells that his body is holding on to and the hemolasis is going down. This is a great sign that his red blood cells keep going up especially being on his own. We thought that he would need IVIG, but his counts were also good for that. We were only at the doctor for about 1 hour and now we get to go home for 2 weeks. When we get him to drink 6 more cups of water a day he will loose that feeeding tube, but for now the doctors are worried about the amount of fluids that he gets in his body. Nicholas and Mary Ann will fly on Angel Flight in the morning and I will head out to drive at the same time. Please pray for the safe trip for everyone and that Nicholas continues to beat the hemolasis.

September 27, 2005 Tuesday - (Day +299) Outpatient - (Day 256)

On our way back to salt lake city for a check up!!!

 

Nicholas is still so full of energy and his lips are glowing very red. He feels great and we hope that the next round of chemo gets put off again to see what his body wants to do. For now, Nicholas is doing great on his own and we hope that the hemolisis does not fire up. Dad is on his way back to Salt Lake City in the car to meet Nicholas and his mother at the airport where Angel Flight will drop them off at 12:00pm tomorrow. Nicholas will have a long check up with a lot of blood work to be done and he will also receive IVIG which will take 3 hours to infuse. Then hopefully we will get to come home, and then we will leave early Thursday morning. Please pray for Nicholas and the hemolisis is going away and he does not have to have any more chemo.

September 23, 2005 Friday - (Day +295) Outpatient - (Day 252)

 

Nicholas had another fun day riding his bike, dancing and playing videos on the new dvd/vhs player he has. Last week the new DVD player went out, and the 20 year old VCR went out on the same day so when he came over here he had a new combo unit waiting for him. He wanted to ride his trike and did not want to put it away when it was time for lunch. He would have probably rode his trike to McDonalds if I would have let him, but the highway was too busy, lol. He has so much energy and feels so good it is really exciting. His body is on its own right now and he is doing great. Please pray that the hemolisis is going away and he does not have to stay for another round of chemo next Wednesday when we go back to Salt Lake City.

September 22, 2005 Thursday - (Day +294) Outpatient - (Day 251)

 

		Nicholas has been full of it all day running around the house, dancing to the television, and talked to his mom on the phone. He has just been personality plus today. He continues to feel great, and he is starting to eat much better now. I am so glad that he feels so good. Please continue to pray for him and hopefully the glutins will go away and he does not have to have any more chemo.

September 20, 2005 Tuesday - (Day +292) Outpatient - (Day 249)

       Mon Doctor Appt in SL

WE HAVE NUTRAFILLS = 14,000
WHITE BLOOD CELLS = 17,500
RED BLOOD HEMATOCRIT = 36,700 
PLATELET = 128,000 
BILLYRUBIN = .3

 

It has been a wonderful long few days for sure. Nicholas and Mom flew into Salt Lake City on Monday around noon and Dad arrived by car at 11:30 to pick them up at the airport. We all went to lunch and Starbucks then to the appointment. We arrived at Primary Children's a little bit early to get started with his blood work. A little while later the numbers came back and they are great. He is holding his red cells on his own and his platelets have really gone up. His white cells are still a little high but they are coming down to a more normal range from the 80,000 he was from last week. The doctor told us that he is still hemolizing, but his red cells are hanging in  there. The Doctor and Nicks researcher have talked about not doing this round of chemo and did decide to wait and give Nicks body a rest to see where it goes. She explained that there is no text book for this so we just need to go on our gut instinct. Mom and Dad we will be watching Nicholas very carefully for the next week to make sure that he does not start to hemolize, and if he does the doctors said that we will just give the chemo to get it under control. The rotuxin will also continue to work for the next few weeks and or maybe even a couple of months. The doctor want to see if that is going to work also. We were so excited that we loaded up in the car and headed back to Idaho leaving the doctors office and driving straight back, but the both of us were very tired and had to stop at a Motel in Boise to get some sleep that we all needed. Nicholas does not need to be back in Salt Lake City until next Wednesday, yeah!!! He is doing so great. Please pray that the rest of the remaining hemolisis just burns itself out and he does not need any more chermo. For now we are back home in Idaho enjoying the weather.

September 18, 2005 Sunday - (Day +290) Outpatient - (Day 247)

 

Nicholas has been up and ready to go all day. When he saw me packing my bag he immediately knew that we were going to be on our way to Salt Lake City. He came in and said "going to Salt Lake City daddy" I told him yep and that was all that was said. We went outside to play and ride his car, then to McDonalds and Starbucks. I took Nicholas to his moms house this afternoon so I could come home to finish packing and get a little rest before I head out at midnight for the 625 mile drive. Nicholas and Mom will be flown to Salt Lake City by Angel Flight where I will pick them up at the airport and go to the hospital. Tomorrow is the big blood day and the doctors are going to see how he is doing and will maybe consider waiting on the next round of chemo. Lets please pray that the hemolasis is gone and we get to come right back home. We love you Nicholas!!

September 17, 2005 Saturday - (Day +289) Outpatient - (Day 246)

 

I was woke up this morning at 6:00am to Nick saying "Hi Daddy, what cha doing" Nicholas was up at ready to go at 6:00am this morning. He was singing and dancing I think before he was even awake. He tore out all of his toys and found his piano. He had a blast singing to the wiggles while he was playing the piano. He has been eating all morning, went to Starbucks for his white chocolate mocha and even McDonalds for his chicken nuggets. He was dressed and ready to go even before lunch was served. He is down for a nap now and will wake up soon. Please pray that he continues to do great in his recovery.

September 16, 2005 Friday - (Day +288) Outpatient - (Day 245)

 

		Nicholas has been wound all day. He is eating a little better today. Before transplant started we always went out to Papa Murphy's for pizza Fridays and he loved it. Today he remembered it again and was asking for pizza from "Papa Murphy's - chicken garlic pizza" So, that is what we had for dinner and he tore right into it. He does not forget a thing, it is amazing. It is great getting back to our regular routine. Please pray for good numbers on Monday.

September 13, 2005 Tuesday - (Day +285) Outpatient - (Day 242)

WE HAVE NUTRAFILLS = 62,300
WHITE BLOOD CELLS = 80,900
RED BLOOD HEMATOCRIT = 37,700 
PLATELET = 86,000 
BILLYRUBIN = .3

 

		Here we are on Tuesday morning. Nicholas is waiting to go to the airport to fly out on Angel Flight to be taken back home to Idaho. Dad will take Nicholas and Mom to the airport then load up the last of our things and drive back. Nicks numbers are through the roof so we stopped the nupegen. His blood recovered a little faster than before, and he feels great. He loves to fly on the planes and he is so excited. We do not have to come back until his check up on Monday and that is when the doctors will decide if he is going to go through the 5th round of chemo. Hopefully, the rotuxin will get rid of the last warm glutins and he will not need any more chremotherapy. If he does and it helps, great!! Please pray for no more warm glutins and a fast trip back home.

September 11, 2005 Sunday - (Day +283) Outpatient - (Day 240)

Daddy was camera happy today!!!

 

		Nicholas woke up this morning at 5:45 am with the biggest squishy hugs and said "Daddy get up! Wanna watch big teehee (TV lol)" and has been off and going ever since. He has been dancing to the Bear in the Big blue house, and wiggles. We are getting ready to go out for a drive and pick up lunch. Later this evening I will take him up to Moms and I will head out on the 10 hour drive to Salt Lake City so I can be at the airport when Angel Flight lands,
then off to the doctors appointment. This will be a fast one, just a turn around trip. Nick and Mom will Angel Flight it back home Tuesday morning and I will haul the rest of the stuff from the hotel for all of us. There was so much stuff it has taken a few car loads, but this should be the last, woohoo!!! Nicholas is doing so great we cannot wait to be home for good. Please pray for his great recovery, and no more warm glutins.

September 10, 2005 Saturday - (Day +282) Outpatient - (Day 239)

 

		Nicholas has been wound tight since the last round of chemo. He has so much energy and feels so good it is incredible. I never thought someone could feel so good. We keep on telling the doctors that they did not give him Chemo they gave him sugar water, :):):). He is always on the go, go, go... He sings and dances all day. We are spending our weekend togather and I will then drive to Salt Lake City on Sunday night for his appointment on Monday morning. This will be a fast trip and then home again for another 5 or 6 days. Please keep him in your prayers for the incredible recovery.

September 07, 2005 Wednesday - (Day +279) Outpatient - (Day 236)

WE HAVE NUTRAFILLS = 3,400
WHITE BLOOD CELLS = 5,600
RED BLOOD HEMATOCRIT = 33,400 
PLATELET = 22,000 After Transfusion 205,000
BILLYRUBIN = .2

 

Nicholas is still doing very well and he is very excited to go back to Idaho for a few days. We spent most of the day in the hospital getting transfusions. Nicholas had to have a transfusion of rotuxin, platelets, and a big bag of IVIG to help his immune system while the rotuxin drops his numbers. His numbers are still dropping, but should turn around in just a couple of days. His platelet count before the transfusion was 22,000 and since we were going back to Idaho the doctors decided to transfuse him. When it was all said and done we did not leave the doctor and Salt Lake City until 3:30pm. Nick, Mom and Dad all loaded up in the car for the 600+ mile trip. We all did very well, and we got home at 1:30am in the morning, dad got home at 3:00am in the morning. Nicholas woke up a few hours later and has been a wild man ever since. He is doing great!!! Please continue to pray for his recovery while we get ready for our next trip to Salt Lake City on Monday morning.

September 04, 2005 Sunday - (Day +276) Outpatient - (Day 233)

 

		Here he is!!! Having a great day on this Sunday afternoon after his lunch he enjoys his favorite snack, a bowl of cheese. Look, some remnants are left on his shirt.:) He is so cute, having so much fun, and so, so, so, full of energy. We have gone for a few walks, a few drives and then also a nap for the both of us. Thank god he is so full of life. Please continue to pray for Nicholas and his recovery.

September 02, 2005 Friday - (Day +274) Outpatient - (Day 231)

WE HAVE NUTRAFILLS = 8,000
WHITE BLOOD CELLS = 8,800
RED BLOOD HEMATOCRIT = 33,700 
PLATELET = 77,000 
BILLYRUBIN = .3

 

		Here he is in his new Old Navy Halloween outfit. We are getting ready to go to the doctors for our visit for his blood checks after his chemo on that was on  Monday. Please pray for a great check up. I will update later. UPDATE: Nicholas had a great appointment. His numbers are going down, but not as much as we would expect right now. Nicholas will start his nupagen tomorrow to keep his numbers high. His liver functions are better now than they have been for a long time, the doctors said. They also talked to us about not doing any more chemo and just letting his body do what it needs to do and see if
we need to really start the chemo. If his body goes a week without it and his numbers stay strong then we will go another week. If they do not and he starts to hemolize again then they will start the 5th round of chemo. Hopefully he will not need it. The doctors are hoping that the rotuxen will help to get rid of the rest of the warm glutens since this is what it targets directly. He had his first dose of rotuxin and will have the 2nd of three on Wednesday. Hopefully we can go home after his appointment on Wednesday and we do not need to be back until the following Monday for the testing, rotuxin, and only maybe the chemo. Please pray for a great appointment and we can come home for a few days, and that he does not need any more chemo.

September 01, 2005 Thursday - (Day +273) Outpatient - (Day 230)

 

		Here is Nicholas at 8:30am up and at em ready to go. He is dancing to wiggles and drinking his morning coffee with dad. He has so much energy it is unbelievable. He is so happy and energetic we just run and chase him all day. It is awesome. We went for a couple of walks and drives today. He walked to and from mom and dads rooms having a great time. We all went to old navy, and mom and dad bought him a Halloween outfit. It is so cute. He is going to be a purple dragon. Please pray for a great doctors appointment tomorrow.

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