Update

We All Need To Be Aware That Cancer Can Strike Anyone at Anytime !

'No one is Untouched'

My little angels will watch over this web site and protect it for Alex!

E-Mail to All, Subject: Alex, Date: Thursday, February 10, 2000 7:25 PM

To everyone that is concerned that something is wrong, just because I haven't emailed in a while let me tell you we have just been BUSY. Alex has been in school full time, and then in the afternoons, we still go to therapy or have visits to the doctor. When we get home, Alex still does his homework, and then falls asleep on the couch. On Monday evening the Oncology office called and asked if we could come in a day earlier to see the doctor. They (doctors) meet on Mondays at the tumor board to discuss different cases. Well, knowing that all the doctors had been discussing Alex, and want him to come into the hospital like that, jump starts my nerves. The head doctor there Dr. Pitel, was there, and thought we should go see a neurologist. (and got us in the very next morning.)

Alex had all kinds of tests run again today. The doctor think that his nerves are "ill", but not damaged, and this is due to one of the chemo drugs - cisplatin. This is one of the reasons - he has no control anymore over his balance and can't walk without help. He (doctor) was very optimistic, and says this will "eventually" get better, once we reduce the dose of cisplatin.

Today we had another ENT visit. Finally his ears are starting to clear, therefore he had another audiogram test. His high frequency hearing is not as good as before, but he is stable - so far. Again this is due to the cisplatin.

Since we have had 3 hours in-between 2 visits, I took the kids (Alex & Nikki) over to the MOSH. Alex had fun, and so did I. Nikki just looked and looked as we all had fun. Well, they are all asleep now, and that's where I'm headed shortly, I had over 263 email messages this evening, tried to catch up, but can't make it tonight. (Most of the messages are from my support group online).

10 February 2000
To everyone that is concerned that something is wrong,just because I haven't emailed in a while let me tell you we have just been BUSY.Alex has been in school full time and then in the afternoons we still go to therapy or have doctor visits. When we get home Alex still does his homework and then falls asleep on the couch.On Monday evening the Oncology office called and asked if we could come in a day earlier to see the doctor. They meet on Mondays at the tumor board and discuss different cases. Well, knowing that all the doctors had been discussing Alex and want him to come in like that jump started my nerves . The head doctor there Dr. Pitel, was there and thought we should go see a neurologist. ( and got us in the very next morning.) Alex had all kinds of tests run, and the doctor thinks his nerves are "ill" but not damaged,and this is due to one of the chemo drugs -cisplatin. This is the reason he has no control anymore over his balance and can't walk without help.He was very optimistic and says this will "eventually" get better, once we reduce the dose of cisplatin.Today we had another ENT visit. Finally his ears are pretty clear, and he had another audiogram test. His high frequency hearing is not as good as before but stable-so far. Again this is due to the cisplatin. Since we had 3hours in-between 2 visits, I took the kids over to the MOSH. Alex had fun, and so did I . Nikki just looked and looked. Well, they are all asleep now and thats where I'm headed, I had over 263 email messages, tried to catch up , but can' t make it tonight. (most of the messages are from my support group online). I love reading everyone's email so keep it coming. goodnight! Christina

9 March 2000
Just wanted to let everyone know that Alex's MRI came back CLEAR!!!!!
What more can I say. Now I can breath again( till the next one).I was so nervous yesterday when they didn't call back, all kinds of things were going through my mind. Well tomorrow he goes back into the hospital for his 3rd cycle of chemo, (only 5 more to go then- about 30 more weeks)His new port is working just fine, at least this time they can draw blood from it. Thanks for all your prayers! I for one know they are working. Thanks! Christina

11 March 2000
Well, everyone our MRI came back CLEAR!!! That's great news! Alex was sedated and was sleeping the rest of the day. Yesterday (Friday 10.Mar) Alex went into the hospital for 2days for his chemo. They hook him up to an IV for 24hours. All night long he has to go to the bathroom because of all the fluid they give him. So no sleep for any of us.He gets Cisplatin, incristine,and CCNU every 6 weeks. He has been a trooper, no complaints at all. His hair is even growing back some. But that could change again at any time. Thanks again everyone for ALL your prayers!
Christina 31 March 2000
You won't believe what Alex was doing today!!! He was riding his bike!!!!! (Keith was holding on of course, but after the bike show yesterday at school(about safety) that's all he wanted to do. He's been feeling good all day. His blood counts came back real good from Wednesday. Yesterday he got an award at school - citizen of the month! He was so proud of himself. 13 April 2000
Alex was on spring break last week and I took him and Nikki to Seaworld and to the Animal Kingdom. We had a great time and a much needed break. His blood counts were low but now all is better. Tomorrow is Friday and we are so looking forward to the weekend! Just to rest.

Update. On April 21,Alex was admitted to the hospital again for his chemo. (He stays for 2 days). All went well. The next week however when we went to the clinic for his chemo injection it started burning when it went in. We couldn't figure out why it was burning right under his port. So we had x-rays taken -just in case there was another leak. That turned out fine- NO LEAK. Thank Goodness! But we still can't figure out why it's burning. A few days later Alex complained of tummy aches, and has ever since. I have taken him out of some of his physical therapy and occupational therapy so we don't have to run to the hosp. all the time in Jax. They are wonderful there, but we are all exhausted. We have started swimming here in Orange Park at our local YMCA again, and I believe I can work with him. Swimming is some of the best excersise he can get.They reduced some of his chemo, due to his neuropothy(where the chemo has affected his nerves) and he has improved so much with his walking. Alex is looking forward to this summer ( so am I). We are on countdown ,25 days left of school! Starting in June I will have the 2 boys back again that I've had for the last 5 years. Alex is happy for the company and we will have a good summer. Thanks for all the continuing prayers. We DO believe in miracles. We have 4 more treatments of 6 weeks each to go. I pray that it will go good without any complications.
Christina(Alex's mom)

I love reading everyone's email, guestbook enteries and so many awards and banners from around the world, so keep it coming.

Ich lesse gerne all die e-mail das zu mir geschickt wird ! Komme zuruck fur das Neuste!

Herzlichen Grusse Aus Amerika Von Uns Alle!!!

Mamaaaaa, guck mal was der Opa macht!

"Opa"

Update
Saturday 11 March 2000

Well, Hello everyone, Alex's MRI came back today. It was CLEAR!!! That was great news! Alex was sedated, and slept through the rest of the day.

Friday, 10 March 2000, Alex went into the hospital for 2 days. This was for his chemo therapy. The hospital personnel attached him to an IV for 24 hours. He had to go to the bathroom all night long. That was because of all the fluid they gave him.

So we had no sleep for the duration, for any of us during that time. Alex's medication - he gets Cisplatin, Vincristine, and CCNU every 6 weeks.

Alex has been a tough trooper, and so far no complaints from anyone yet. His hair has even started to grow back some. But that could change again at any time.

Thanks again everyone for ALL your kind words of comfort and Prayers!

Christina

Date: Sun, 4 Jun 2000 22:40:13 EDT We just got out of the hospital for Alex's 5th cycle of chemo. He also had another MRI on Friday and all went well. Thank God. He has 3 more cycles to go about 18 more weeks.(Every six weeks we go in , then its 3 weeks on -3 weeks off.)
He is kind of tired and his throat and stomach hurt. His stomach hurts almost every day. That's from the chemo.
While we were in the hospital on Friday his IV leaked onto him and the bed. The nurses rushed in and took everything off of him and washed him in the bathtub. They stripped to bed and wiped it down with alcohol. The chemo is so toxic nothing can be contaminated. They put everything into those red "hazmat"bags. Even his new scooby doo t-shirt. With some of the pills he has to take we have to wear rubber gloves to put them into his mouth! It's hard to believe that that stuff goes inside of him. His hair has come back on most of his head ,exept for in the back where the most radiation was. More than likely it will never grow back there. He started to walk again on his own about 2 weeks ago, here at home , very carefully. I took him out of some of his OT and PT classes and we have been working at home or in the pool at theYMCA. I believe that has helped greatly.He was just getting to tired to go to the hosp every day. He is still in speech ,1x a week at the hosp , but also gets it at school. He has improved so much. From not being able to utter a word, to speeking "almost" normal. He is just saying everything very slowly. But thats ok. School is almost out(this Friday)!!yipppeee!, and we are all looking forward to a big break. He has kept up with the rest of the class in everything and will be going to 2nd grade. Yea!
Just wanted to update everyone a little
Take care
Christina

Thu, 22 Jun 2000 22:09:53 EDT Just a little update on Alex to all. We got his bloodwork in yesterday and it was not so good. His ANC counts are in at only 389. Normally he needs at least 1000 to get his chemo. If it goes below 500 he is considered at risk for any type of infection ,virus ,etc. If he gets a fever he has to go into the hospital immediatly.They figure this all together from his hemoglobin, white blood cells,red blood cells, platelets etc., there is a whole list of things. Well his platelets are also very low, the lowest they have ever been at only 46thousand. If they continue to go lower ,he will get a transfusion. Which is something we are NOT looking forward to,and pray he doesn't have to have.He looks so good at the moment, but is tired. His tummy still aches everyday.Hopefully by next week the GI doctors can check him out. When he smiles (throughout all of this) it just makes my heart melt. I pray that his blood counts will go back up again soon and all will be OK.
A few weeks ago the Jacksonville Jaguars invited a small group of the kids from the hospital to have ice cream and a treasure hunt in the stadium. We met Mark Brunnell and Tom Coughlin(again). and some of the other players. Mr. Coughlin came over and asked Alex how he's been since the last time he saw him and was just very personable. They gave him a signed football and a few soulveniers. They are such a nice group of people. The kids all had a great time, and so did some of us parents. Alex was smiling from ear to ear from all the attention he got. Please continue to keep Alex in your prayers, it has kept him so strong.
Thanks
Christina - :)

Herzlichen Grusse Aus Amerika!!!

Charles "Opa"