February 22, 2006
Alex started his chemo treatments of one series which was ten days of treatments
March 17, 2006
Today Alex is spending time at his grandmother Cindy's home until it is time to go back for more chemo treatments. Cindy says he acts as if he was just released from prison. If no
complications arise he will be with her for two weeks until time to go back to the hospital.
March 20, 2006
From Friday on he has been very active, only got sick once on Saturday night and, tends to have alot of mood swings and we have to really remain calm and patient during this time.
He is permitted outdoors but we are to avoid crowds. The cold weather causes him to cough badly and also he is not to be allowed out long.
He is now today a normal seven year old, watching tv, drawing and just being Alex. He ate very well for the first time yesterday and did keep all the food down which is a very good sign.
We explained to Alex that we feel he should wear his mask outdoors as when he doesn't he starts coughing and gagging until he gets sick. He was ok with that and as this is now the second day that food is finally staying down we don't want to see him slide back.
Alex just left for Hershey Medical Center a few minutes ago with mom to have another blood culture done as Friday before they left he had one done and it showed some kind of bacteria.
March 21, 2006
Alex had a perfect checkup at HMC, his counts are rebounding nicely so he will go on the 28th of March for another bone marrow test, then probably be admitted for round two of chemo. His platelets have just about doubled in number which is very good as it means no transfusion. Monday evening he was once again very active and happy . He ate dinner with no getting sick. This update is early Tuesday morning and he is asleep as all good little boys are supposed to be doing at this hour of the night. Looks like a little angel lying there.
Shell, (his mother) has to meet with the advocacy group of the hospital today. Something to do with nurses not using gloves and talk of a staph infection. Will let you know more on what this is all about.
Received word from the hospital today that the blood culture taken yesterday came back with nothing growing on it
We called Hershey Med center to see if we could take Alex to Chuckie Cheese tonite for good behavior. Not quite sure how we determined that he had good behavior LOL. They told us since the counts went back up so nicely they saw no reason he could not go.
So now we are home after an enjoyable evening but he is tired and looks a bit pale to me. Right now his mom is bathing him and I can hear him arguing with her. I kind of notice when he gets to tired he tends to have some major mood swings and am not too sure that the chemo does not play a part in this. Hopefully he will soon fall asleep and tomorrow will find him much cheerier. It sure was a pleasure tho after not having him around for almost three weeks being able to take him out and enjoy some quality time with him
and his brother.
March 22, 2006
Help Alex is still tormenting me LOL. He hid my one shoe today and I am still trying to find it. Right now he went with his mom to their place. I really think he misses being in his own home with his own things. For the most part he seems to be good again today altho I did mention to Shell that he did look a bit pale but the hemoglobin is having a difficult time coming back up to where it should be.
March 24, 2006
Well I kind of missed an update for yesterday but he had a very good day. He did well once again with his eating and even had to be disciplined.
Today he is with his mom running errands. They took their dog down to get groomed and also had the oil changed in their car. Now he is with his Pappy.
He is sleeping well and seems very active. Next Tuesday is when he more than likely will go back for his second round of chemo so please keep your fingers crossed that all goes well. The child life team will be there to help and I will follow Shell up to the hospital and then once they are settled in I will come home. It is simply amazing considering how sick they get from the chemo just how fast they bounce around. Well got to run, guess who just came back -- yep little man -- he must have gotten tired of Pappy.
March 25, 2006
I had Alex and his brother Austin all day today and all they did was play. They were both up bright and early considering Alex did not fall asleep until 3AM this morning. I of course stayed up with him and every time I tried to get him to go to sleep all I heard was : Nan, I am not tired". The boys played very vigorously all day and sometimes even kind of got in rough housing which I had to halt due to Alex's central line. I told Austin he needs to be easy with his brother for now and when this is all over then they can wrestle. It is good to see Alex so full of energy tho even if it wears me out which it does. He is eating like a horse. I asked him why he doesn't eat at the hospital and he said the food does not taste good, then I said well what about when we bring food up for you, he said that they have bad microwaves....darn kid has an answer for everything.
A good friend of the family came to visit him tonite and she is always telling him she is going to give him a kiss and he says no way. She is very good with kids and loves to kid around with him and agitate him. He also gives it right back to her tho. It has been a very long day for me so I will say good nite and also thanks to all who have visited Alex's site and signed his guest book. This will be so meaningful in years to come, I am sure.
March 26, 2006
Well today was another good one. Alex was up early and he and his brother played on the computer for the best part of the day. Alex was chipper today and played real well with Austin. Tonite I made roast beef, mashed potatos and brussel sprouts for dinner and he ate good.
Then they had been promised to go and see the movie The Shaggy Dog. Mom, Pappy, Aunt Tracy, Uncle Gene, and Austin all went along. I went to bingo and when I came home I was told the boys enjoyed the film. I do worry tho with him being out in public although the doctors feel if his counts are good it should be ok. Right now I just checked on him and he is sleeping. Looks so sweet lying there, makes me wish so badly I could take this horrendous cancer from him.
March 29, 2006
On Tuesday Alex was taken back to the hospital for his second round of chemo. They retested his bone marrow and it appears that we caught his cancer so early he is now in remission but still has to go thru a total of five rounds of chemo regardless as these blast cells tend to hide. They want to be positive they get it all as they had said earlier if it ever comes back it would be worse than before. His platelet count was 207,000, white cell count was 5.3 ,red cell count was 10.1 and hemoglobin was 26.6. This round of chemo should be only eight days compared to ten days the first time and Shell told me that it should be less each time.
It took them five hours to get into a room and the new room number is now 7263 . I want to thank everyone for all their wonderful prayers and love shown to Alex as he is going thru this. Now as far as him coming back home again it will tend to depend upon how fast his counts rise.
Everyone keeps asking how this was discovered so quickly. Well, Alex was taken to our family doctor for a stomach virus and he requested blood work done on him to make sure the medicine his previous doctor had him on for his leg pains was not causing any internal bleeding. He went that very same day for the blood work and that night we received a phone call from Lititz Family Practice wanting some information from Michelle. She gave the requested information so Dr Sailor was going to call the previous doctor for additional information and then call us right back. It was not very long until my phone rang and it was Dr Sailor. He asked me if it was possible to bring Alex into the office so he could examine him thoroughly, he said his platelets were 110,000 last year and were now at 29,000.
Shell and I took him over at 9:30PM and Dr Sailor examined him and then called hematology at Hershey to speak with them. After conferring with Hershey he wanted another blood test done the following day and as we later found out it was to compare the two should there have been a mistake with the labs.
We were told AML is a very aggressive leukemia and has to be treated very aggressively so he is getting some high powered chemo medicines.
If there are any questions anyone may have feel free to email me and I shall answer them as best I can. My emails are email@example.com and firstname.lastname@example.org
March 31, 2006
The doctors are letting Alex go out of the hospital on daily jaunts until his counts start to drop. Since this has been caught early it seems as if he is handling it better than they expected. He will still require the same amount of chemo treatments, a total of five in all.
Alex had a taste of freedom now and we think he may try harder such as eating and drinking and being a bit more co-operative. while he was here at my place he gained a total of eighteen pounds, some of this weight gain I contribute to some of the meds altho he did have quite an appetite
April 7, 2006
Alex has handled this second round of chemo so much better than the first. He has been given day passes while on the chemo treatments as his counts remained stable until just yesterday.
Now once again we wait until his good counts come up and then he should be coming home for another break. He seems to have accepted everything so much better now and even goes outside without his cap.
His second round of chemo is over and counts have once again dropped as expected.
Alex's brother Austin misses him terribly and can't wait until life returns to normal.
April 12, 2006
Alex did very well on this, his second round of chemo. He was coming home on day passes until his counts had dropped. His spirits seem to be up and he does not seem to mind his mom leaving the hospital to come and spend some time with Austin.
The only complication he got from this was sores in his mouth. it is known as mucisitis(sp) and they have him on morphine for it.
When his white count comes back to normal this should all go away. They have him on IV fluids. The real good news is that he may be home for Easter which would really be wonderful!!!!
Shell called tonite and said Alex is in good spirits and I guess wanting to come home as soon as possible. So far everything is looking good--his counts are starting to rebound and now they are shooting for a discharge on Saturday. He told his mom he misses all the little cards and notes he was receiving.
April 14, 2006
Alex had to get platelets today becasue his count was at 13,000 and we don't think his counts are going to recover in time for him to come home for Easter.
His mouth is still sore so they had to up his morphine last night because he is in alot of pain. He trades in the fever for mouth sores I don't know which one is worse. He is also losing his eyebrows and eyelashes so once they are all gone I will take a picture of him but he will still be cute.
Also he is having alot of issues right now with chickens. All he keeps telling me is that he wants rubber chickens I think it might be the morphine talking.
April 20, 2006
Alex came home on Wednesday evening but his counts are still low. He is in good spirits and seems to be happy which shows us he is feeling well.
On Friday the VNA is coming out to do blood tests so that the counts can be rechecked to see if they have risen any. Shell was told if his counts do go up then next week it will be back to the hospital for his
third round of chemo. We all kind of felt this was a bit too soon but I guess the doctors know best. Once he has his third round then he only has two more to go.
April 24, 2006
They told Shell they want Alex back at Hershey on Tuesday to start his third round of chemo but she put a call into his doctor requesting another week yet at home for him.
Alex was not given another week at home. The doctor called and wants to start his third round of chemo to make sure all bad cells are gotten. He took the news very well.
April 25, 2006
Today Alex went back to the hospital for his third round of chemo . This series will be five days and then the long wait until his counts come back
The make a wish foundation was there Sunday nite and he wants to go to Florida to go out on a fishing trip and wants to take his pappy.
Alex got the fish that we had mounted for him --- his 1st big one and he carried it along to the hospital when he went
April 28, 2006
Alex is rounding his last days of this chemo series and is doing very well. He made a friend up there named Justin and they are getting really close.
Last night he asked me if he was going to die because he does not want to die and the nurses and I had to explain that it was good that we caught this so early.
He felt better after that and also he doesn't want his legs to hurt again. He is feeling really good.
I want to ask people for suggestions on fundraising for Alex to help with the costs on the repairs of our home so any suggestions would be greatly appreciated
May 4, 2006
Alex has just finished his third round of chemo and it went very well altho he did not get to stay at home as long as any of us would have liked due to him running a fever.
I stayed with him on Tuesday night while his mom went to Austin's first ball game.
He was a rip snorter last evening while I was there. He was the Alex we know.
His counts are starting to drop now tho so that will slow him up. It is too bad the chemo cannot just attack the cancerous cells without also attacking the good cells as that is why these kids get sick--it messes with their immune systems. Anyways he sure did have me worn out.
On Wednesday the doctors allowed him out on a day pass as he had so much energy but we don't think there will be any more until his counts rise.
I wasn't too sure about him leaving then as Shell told me his one count was only at 1 and she seemed concerned about his platelets.
It is rough tho when he is not feeling sick to be cooped up in a hospital room.
Shell was told also he is responding quite well to treatment which we were all glad to hear. After this one two more to go and then some time at home and then the family goes to Florida from the Make A Wish Foundation.
May 10, 2006
Well we are going into a week and half after chemo and his counts are still down. We are waiting very patiently for them to come back. I told Alex that we didn't have patience before this we sure do now. LOL.
All that is going on now is that he has stomach problems and they think that he got hit with a virus so they really can't do anything for it until his counts come back.
All we can do is make him comfortable. He trys to keep up but it is hard for him and I feel for him because he wants to get out and do stuff but his poor little body can't do it.
All I keep telling him is that it is almost all over with we are down to our last two treatments.
Also I want to put in here that I would like for people to not just pray for Alex but pray for all the little children that are up there fighting this hard battle.
Also thanks again to everyone for what they have done for Alex and what they are going to continue to do. It is very well appreciated .
All I know is that I have been taught a valuable lesson in life and that is don't take life for granted and to live everyday as it could be your last.
May 31, 2006
Alex was home over Memorial Day and had a good time. He is doing very well and the only thing he had wrong on this past treatment was a sore on his foot.
Now he is back in for round four and we were at the clinic on Tuesday and found out that his platlet count was 300,000 and that was the highest he has had for about three years.
His bone marrow is working like it should be. I also found out that he has a 20% chance of reoccurance the first year and then each year after that it gets less and less.
June 15, 2006
Alex finished his fourth dose of chemo and like expected his counts dropped. He had to receive two platlets tranfusions and two blood tranfusions.
He was also suffering with a fever for three days of 104 and they did blood cultures on him and it came back positive for bacteria so they started him on antibiotics that seemed to work.
Also he has a bad case of mucusitis and he is on morphine for that.
I think this treatment was his second hardest one for him, but he is a fighter and he will get through it.
Soon he will be down to one Thank God.
June 21, 2006
Alex is still in the hospital and has been there almost a month now.
He is on a antibiotic for a fever that causes tremors and after two doses of that they decided to put him on steroids and that seemed to control it.
The fever has gone away and they are thinking about taking some of his meds away but they are going to still keep him on that harsh one till his counts come back.
They also have him on a white cell enhancer to help bring his counts back up and since that he went the whole ways up to two.
That is not much of a jump but we will take what we can get.
I guess what is happening is that his bone marrow is getting tired.
He just feels crappy right now he hasn't eaten in about a week so they have to give him nourishments through his IV.
His friend Justin is back up but he is not permitted in his room becasue he has a low white count and I think that doesn't make him very happy.
I think Justin is going through withdrawls
So hopefully we are out next week so we can get round five started and done with so we can get back to a normal life.
June 30, 2006
Alex was able to come home from the hospital and will stay three weeks before he returns for his fifth and final chemo treatment.
If he starts to run a fever while he is home he is to be
rushed back to the hospital.
This final treatment will be the hardest.
July 21, 2006
Alex has not yet went for his final treatment he was just in the hospital for infections in both lines of his central line and so they had to start him on antibiotics to clear them up
Also they didn't know if they had to remove his lines because his little body was starting to fight the tubes off since it is something foreign in there. They were discussing taking them out and putting a central line in his arm but thank God that there has not been no more infections.
This little guy has been through enough
They had to put a NG tube in his nose because he wouldn't take his meds anymore but the amazing thing about that is he likes it because he doesn't have to taste the gross medicine.
Hopefully we are looking at starting chemo one
on Tuesday and this is considered the cure. They are going to hit him with a mega dose of chemo and I hope that he pulls out of this one without no problems which I think he will because he is my little fighter.
I just can't believe that I'm at the end with this. I ask myself how did I do it ? I guess God gave me the strength.
Again I want to thank everyone for their support and the prayers for my little guy. On the other side my oldest boys birthday is today . Austin turned eleven and he has been a very mature boy and very cooperative through this as we all know this has been very hard on him too.
August 3, 2006
Thank God Alex received his last chemo treatment today. We are waiting for his blood counts to come back up and for his feeding tube to be removed. Also he will have to have his central line taken out in surgery. We cant wait for the day he is able to come home. It will be really soon and his doctor believes the Leukemia will not return.
September 15, 2006
Alex was discharged August 25, and all chemo was finished although he came home with his central lines still intact.
He went to school the first week and then the Sunday before Labor Day spiked a fever and was taken to the emergency room.
He was treated and sent home but on Labor Day his cultures came back negative so he was readmitted for antibiotics. He was in for that week but all his lines were removed
Today he was taken for blood work and his counts are the best they have been for quite some time so I am hoping he stays in remission now.
After being in remission for five years he will be considered cured. He is a happy little boy these days, likes going to school and has been permitted to resume normal activity.
Alex is getting his hair back and it is coming in blonde. He is very excited about that.
September 16, 2006
Today Alex, his mom and dad, Austin, Tracy and Pappy went to Delaware for a deep fishing trip. The doctor signed him out of school Monday and Tuesday to do this since he did not have a summer vacation. Then next Sunday the Childrens Miracle Network is to have a construction rodeo--this has always been held right across the road from where we live and all proceeds are donated to kids with life threatening illnesses--we have always attended and never once thought we would have one of those Miracle Children.