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Just to keep our problems in perspective there is a quote from the web page of a little girl on Xander's
buddy page. He does not know her thank goodness, but please read this and keep your own problems in perspective. Keep in mind
this was written a week ago on her 7th birthday.
"
Sunday, April 22, 2007 5:15 PM CDT
Yes, yesterday was not a good day. We were quite frightened by the events
that took place and it hit Mark and I quite hard with the realization that Rachel is going to die. She had such incredible
pain and screamed and screamed and screamed. I had no sleep that evening (Rachel and Mark didn't get much either) and the
entire family went to the hospital very early yesterday morning. Rachel finally slept at the hospital (didn't even have new
pain meds started yet) but all too soon it was time to leave to go to her birthday party. As far as her party is concerned,
in two words, it sucked. She was in pain, and wasn't able to interact with her friends at all. She did open her gifts and
she did sit at the table and have a couple of bites of cake, but otherwise she was in Mark's or my lap. Mark and I felt horrid
yet that's where she wanted to be. How do you deprive her of that???? I really don't know what her little friends thought
(or their parents), but again, she so desperately wanted to be there. And so she was.
After the birthday party she
went to bed. As the night wore on, Rachel's breathing became more and more shallow with periods of no breath at all. We really
didn't think she was going to make it through the night. Family and friends gathered and we prayed over her, we anointed her,
we were with her, and we prayed some more. She made it through the night and today her breathing is deeper, more even, and
not as rapid. We've actually turned down the pain meds because we feel she's overdosed on them. Hopefully we'll be able to
find that fine line between pain coverage and loopiness. She's drinking, she's communicating more, and we're seeing her fiestiness.
"
April 30th,
Xander is doing good today. He still has a sore throat, but his ears are better. His temp is not
normal, but its not a issue right now either.
April 28th,
We just got back from ER its 11:50. Xander's blood counts were ok. He had two nasty ear infections,
and a virus. His chest exray was good as well. Its back to almost normal for us again. His fever should be better in a couple
of days of antibiotics. YIPEEE!!!
April 28th, !!!
We just hit a temp. of 100.4. I'm on Hold with Doernbecher hospital.
We will most likely be heading to ER in a few min. I'll update when we get home, or when we transport. Please don't call the
house so I can keep in touch with them via ER phone. Don't stress out. Xander is still energetic so things don't look that
bad "right now".
April 28th,
Xander now has a infection in his other ear. His temp. is still up and down. It's only hit
normal a couple of times in the last 3 days. Most of the time its mid. 99's. Right now its 99.3. Not to bad if it stayed there
or under, but at any moment it could fly up. There is something going on. We just hope it works itself out with out going
up to high.
April 27th,
That temp keeps floating around its was 99.7 earlier, now its back to 99.4. Keep in mind once again
that for a healthy child these are good temps. For Xander 100.4 means a trip to ER.
April 27th,
Xander's ear pain is gone, thank goodness. He is still suffering cold symptoms. His legs are starting
to give him more trouble. They are still "tired" off and on. He started to fall once today from balance and "tired"
issues related to his vincristine. I don't think its going to get much worse then it is now though. He just took his temp.
and its 99.4. That's high enough to keep him at 2 hr. temp checks. It keeps going up and down. Obviously there is a underlying
infection. We just need to wait it out.
April 26th,
Since we didn't know how Xander's blood counts would react to his increased dose of chemo he is now
on a reduced contact schedual until he is no longer showing symptoms of illness.
For information on vincristine, and its short/longterm effects click here
April 26th,
Yesterday started out great with Xander doing well in rollerskating, and his vincristine treatment
still only making his legs "tired". His balance and strength remain. Later in the day though a sniffle started that by evening
had been joined by ear pain and a slight temp. increase. It was one of those evenings. We had to get DR. permision to give
him pain meds. even though his ear was really hurting. The temp. made that a issue, but Dr. said go for it, but take the temp
often as usual in these cases for Xander. It took a couple of doses of pain meds to decrease the ear pain to a managable level.
He is doing fine as of now. The big question is "is this a bacterial ear infection or a viral ear infection."?? If its bacterial
a fever will apear and its off to ER for IV antibiotics. With a Viral infection it will just drive us nuts for a few days
and go away. Since there is that small chance that Xander's ANC count has dropped with the new meds. ER could be interesting.
For a better understanding of blood counts / ANC please click here.
For information on neutropenic fever in chemo patients click on this link.
April 20th,
Xander had chemo today. That went well. What we learned though is that after two years of almost
no growth ( we were begining to get worried) Xander grew a entire inch over the last month. He also put on anouther 5 lbs.
His blood counts were still very good, but his white blood cells had droped slightly. With his size increase came a medication
increase. Between the med. increase and his slight drop there is a increased risk this month for him becoming neutropenic
(sp) "for more information click on the link above" This makes this probably the last month we need to worry about a
ambulance trip to Doernbecher since chemo is almost done. I'll keep the web site updated. Also they increased his vincristine
(chemo he receives each month at Doernbecer) This is the drug that tends to make him off balance and have "tired" legs on
good months, and make him not be able to walk properly on a bad month. We are keeping our eyes open for issues.
April 3rd,
Xander is doing great right now. He felt well enough for the first time in 2 years to take roller
skating again. In the past couple of years he has either been to sick, or wearing a cast. It was great seeing him one of the
stronger skaters for his level.
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