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Nicholas' Journal November 2004

November 30, 2004 Tuesday (pre-transplant Day -2)

Nicholas still had a pretty rough night having a reaction to the ATG at 8:00pm. He had the shakes, a fever, high heart rate, and no appetite. The reaction was not as bad as Monday night because we saw it coming and we were able to take the necessary precautions. This is the first day that Nicholas was just pretty under the weather and he did not want to eat or drink anything. His appetite has been good until today, but the doctors have been impressed with his activity level and ability to eat to this point. The program is wearing on him, but there is only 2 more days to transplant. He is a trooper. He did not get the fever and the high heart rate like he did the other 2 nights (Sunday, and Monday) He did not have much energy yesterday but did pretty good overall. The tests were done and it looks like he might have an infection so he is on a medication just for that while they are diagnosing the exact infection.This is the hardest thing for someone to endure and he is doing his best. Hopefully the doctors change of medications will help him to keep from having a reaction to the ATG. Please keep Nicholas in your thoughts and prayers. Thursday is transplant day. (yeah!!)

November 29, 2004 Monday (pre-transplant Day -3)

After having a very rough night last night the doctors met this morning and changed his protocol. This is to try to keep him stable for the next few days of chemotherapy and ATG. His blood hematocrit fell to 22,000 and they decided to transfuse him with some red blood cells early this morning, and he also had a potassium transfusion in the night. Platelets were at 38,000 this morning when we wet with the doctors. Nicholas' system has been pretty stable for the last few days and at 8:00 this evening they drew blood from Nicholas to test and came back to say his platelets were at 14,000 and he will need platelets tonight. Blood was at 30,000 which is good for him and only 1 day from the blood transfusion. His white cell count is at 500 and dropping by Thursday morning his white cell count should be at 0 and ready for his new bone marrow. At 8:00pm at night he again broke out in a rash, high blood pressure, increased heart rate (only 180bpm), a fever that reached 102, the shakes, and shortness of breath. He weathered it well and this was very expected after last night. The nurses did a very good job and 4 hours later he was at a normal rate for everything. He was resting very well and was looking to have a great night. Keep him in your thoughts.

November 28, 2004 Sunday (pre-transplant Day -4)

After having a very rough night nick slept until 5:15am this morning and woke up to say "watch teletubbies." He felt a lot better today and he has been eating pretty well this morning. His body still seems to be doing as the doctors say he should. His platelets are at 39,000 and blood at 28,000. His white cell count is at 600 and dropping. The doctors are happy with his progress, but his parents are very frazzled. He has had his Cyclophosphamide and ATG today and is now taking a nap. I will update later tonight after he goes to sleep. Keep him in your prayers.

We ended up pulling an all niter. What a stressful night. Shortly after starting his nap Nicholas woke up to all of the reactions from the ATG that the doctors said that he could get. He broke out in a rash, high blood pressure, increased heart rate (205bpm), a fever that reaches 105.9, the shakes, and shortness of breath. This came on at 3:00pm and then again at 10:00pm. It took 5 hours to bring everything down to normal. We were up all night caring for him. It will all start over again in the morning.

November 27, 2004 Saturday (pre-transplant Day -5)

Nick started off today doing great on his new chemotherapy medication. He felt pretty good and was eating pretty normal for him. This afternoon he seemed to be a little unsettled off and on, but in relatively good spirits. About 3:30 today he started to get very sick. He was very uncomfortable and unsettled. The nurse gave him medication to keep him from being so nauseated. He has been sleeping for most of the evening, and is now calm. We have been told by the doctors that this is normal, so it was expected, but we were hoping that he would do as well as he has for the first 4 days. Tomorrow is another day so lets all pray for a good one. Along with the Cyclophosphamide (what is making him sick) he will start the ATG. He will stay on these for 4 days then his transplant at day 0.The nurses and doctors are doing their best to keep him comfortable. Keep Nick in your thoughts and prayers. 

November 26, 2004 Friday (pre-transplant Day -6)

Nicholas had an awesome day today. He was very energetic, dancing, singing and talking all day. He did take his nap, but only 1/2 hour. The doctors told us today that Nicks blood counts are very stable. His crit is 28,000, and his platelets are 37,000. These are good for him and they have not changed much this week. Tonight he was giggling so much that I only needed to barely tickle him and he would just really giggle. We cannot believe how good of a mood he is in. It is really AWSOME!!  It does not seem like Nicholas is even going through this treatment he is in such a good mood. 

For the last 4 days Nicholas has been on the Busulfan and tomorrow he will start the Cyclophosphamide. We hope that he takes this as well as the others that he has been on. The doctors have told us that he might not feel very well on this one. It will seem like he has the very bad flu bug, but some people just cruz through this one also. Keep him in your thoughts. The mind is a powerful thing.

November 25, 2004 Thursday (pre-transplant Day -7)

Nicholas had an awesome day today. He was very energetic, dancing, singing and talking all day. He did not even take his nap. The doctors are very glad that his body is metabolizing the chemotherapy so well. They said that he is doing very well. Today it did not seem like Nicholas was even going through this treatment he was in such a good mood.

November 24, 2004 Wednesday (pre-transplant Day -8)

Nicholas seemed to have a pretty long night. Taking a very late nap yesterday he wanted to stay awake well into the early morning hours. He started to itch which can be a side effect from the chemotherapy. A little benedryl stopped this and he was fast asleep. Getting up this morning at 8:30am he seemed to be a little cranky, but having a good breakfast and a full tummy it all went away. Nicholas was very mobile today wondering around his room and getting out some new DVD's to watch. He sang and danced to wiggles and Booh Bah then had some lunch and took a little afternoon nap.

Nicholas continued to do well all day and night. He ate very good tonight and had more energy than yesterday. He has spirts of energy where he wants to play, and then wants to rest. All in all, things are going very well, he is eating well, and Nicholas is taking to it very good.Today Show Nov 24, 2004 SLC

November 23, 2004 Tuesday (pre-transplant Day -9)   

Nicholas had a very busy night last night with the potassium and blood transfusion. The nurse was in his room testing and monitoring most of the time. He ate a good breakfast, but did not want much to do with his lunch. The chemotherapy (the Busulfan) has started this morning at 6:00am and will be given every 6 hours for the next 4 days. The second dose of 3 per day was given at 12:00pm. and he seems to be taking it pretty well so far. Nicholas is trying to get used to being in his room all of the time while he enjoys all of the some of the pleasures of home. He has been picking out his own DVD's and watching them. Right now he is trying to take his afternoon nap so he can get some very needed rest. He has had a very busy week with doctors and media. 

Nicholas had a 3 hour nap today and woke up very hungry. He ate a good dinner and was very energetic. He danced to bob the builder and wiggles. He was very talkative and we chased him around his room while he explored and played with his toys. Overall, he is feeling much better tonight and he had a great day. Keep him in your thoughts.

The TODAY Show will air his story at 9:00am on Wednesday morning November 24, 2004 Salt Lake City Time. His story was also published in the Salt Lake Tribune, Desert Morning News, The Boise Statesman, and The Lewiston Morning Tribune that we know of. Good Morning America will be also airing his story soon.Today Show Nov 24, 2004 SLC

November 22, 2004 Monday (pre-transplant Day -10)   

We are getting ready to see the doctors the day before he is admitted into the hospital to start his chemotherapy. We have an appointment with the social worker and his doctors. We are also going to interview with the Today Shop, Good Morning America, and a local station here in Salt Lake City. Pray for a good day for nick. I will update later.

Update: Nicholas' blood counts continue to fall. He has eaten well today and has great energy, but it was a very long day with the interviews for the television shows. He has started his anti seizure medication and it makes him very tired. The doctors told us that they wanted to admit Nicholas into the hospital 1 day early so we are going to ride the trax line (his favorite thing to do) and go to the toy store. He loves to ride the train. He will be admitted at 7:00pm tonight.

We arrived into the BMT unit and got Nicholas settled in and he fell asleep early. He had a very busy day. His blood counts have continued to fall currently at 23,000 and platelets are at 40,000. His potassium is low so they will transfuse him with potassium, his antibiotics, and some blood to bring his counts up. He will get his first dose on chemo at 6:00am on Tuesday morning. For everyone here keep Nicholas in your prayers. Channel 5 KSL News Nov 22, 2004(5pm) and Channel 5 KSL News Nov 22, 2004 (10pm) 

November 21, 2004 Sunday (pre-transplant Day -11)   

Nick is still not eating. He is drinking allot of fluid though but I am worried about his food intake. Tylenol makes him feel much better and he will actually dance to the wiggles every so often. Nick had a pretty good dinner tonight, but is not his normal eating habits. He had a very long nap and slept for 3.5 hours to be awaken by the nurse to change his bandages. This hurts him and he does not like it. Lets hope for a good night rest.

November 20, 2004 Saturday (pre-transplant Day -12)   

Nicholas is having a very hard time recovering from the surgery that he had last night to insert the port and bone marrow aspiration. It made him feel very under the weather and does not want to eat last night or today. The doctors had a hard time removing his bone marrow and had to go in a few times to finally get some. He also had a bone marrow aspiration 2 years ago and that doctor had a hard time also. Hopefully this will help in the future for other diagnosis of porphryia.

November 19, 2004 Friday (pre-transplant Day -13)   

This morning Nick stayed with me and we slept in trying to rest before the operation for the line placement and bone marrow aspiration. At 8:30 am just before we walked out the door we got the call from the hospital and they informed us that there is a problem with the bone marrow donor. There is some negative results coming back from today's blood work on him. We are on hold right now awaiting the fax from the bone marrow donors' doctors to see if this is going to be a problem. We are suppose to go to the hospital at 11:00 am for a conference with Nicks bone marrow doctors. If it is OK, Nick will go into surgery, if not we may go home while they work on another donor. We have been informed that they have found a potential back up donor that is a 9/10 match. This new donor is a DQ mismatch and the transfusion from this donor would not have as great of percentages as the one that we are currently going to use. We may have to use this donor if this first one (9 / 10 match) does not work out. Hope that everything is OK. 

Nick went into surgery at 11:00am and had a very hard time. His recovery was slow and we were released at 6:00pm to go back to our rooms. His blood levels were 28,000 and platelets were 60,000. This is still pretty good for him, but low for most. Doctors feel the drop is due to the amount of blood pulled for surgery. Nick does not feel well and we are going to rest.

November 18, 2004 Thursday (pre-transplant Day -14)                                                                   

We are scheduled on the half hour with meetings. Starting at 8:30 am with The Education in Finance, Pharmacy, Dietary, Discharge Planner, Central Line Care, Child Life, Dental Clinic, and conference with Dr. Peterson (One of the bone marrow transplant doctors). We went back to the hotel at 4:00pm and at 5:00pm Nick was in the hospital ER. He was jumping on the bed in Moms room and fell and hit the corner of the end table and hurt his nose, scraping the skin off the tip, and bruising him up pretty good. Had a few doctors look at him and cleaned it up with saline and off to CT Scan. We found out the labs came back and his blood was at 33,000 and platelets were at 75,000. This is great for him, but wanted to do a scan to make sure that he was not bleeding this close to transplant. The final came back and he is good. No bleeding. We are getting ready for surgery at 9:00am Friday morning for central line placement and a bone marrow aspiration. Gonne get some sleep. Wish us luck!!

November 17, 2004 Wednesday (pre-transplant Day -15)                                                                   

Today was a very busy day for Nicholas. We had appointments scheduled on the hour starting with Audiology, then Echo, EKG, BMT, pre-labs, Chest X-Ray, then a neuropsychiatric evaluation. We ate lunch and then back to our rooms by 4:00pm to rest up for tomorrow, and another very busy day.

November 16, 2004   Tuesday                                                                     

We have been notified today that we need to be in Salt Lake City by 9:00 am on Wednesday November 18, 2004. Mary Ann is loading up her car for the drive and I am packing up for the flight from Lewiston to Seattle, then a 4 hour layover, then the flight to Salt Lake City. I will arrive around 9:00 pm with our first appointment with the doctors at 9:00 am on Wednesday. To watch Nicks video clip click here. Channel 5 KSL News Nov 16, 2004 SLC

November 13, 2004                                  

We have been notified that the cord blood donors over seas were not a compatible match for Nicholas. Not only was compatibility an issue, but so was the communication. Primary Children's Medical Center in Salt Lake City will use the 9 / 10 bone marrow donor for the transplant and we will be on our way to Salt Lake City to start the pre-op in the week of November 14 - 21. The 2 day trip by car is being planned and is underway because Nicholas cannot fly due to the possible germs on the commercial airlines. He will start his pre-op testing, then go to the dentist to make sure that there is no cavities, then the chemotherapy, and finally the bone marrow. Keep him in your minds and prayers.

 

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