Scott got a surprise this morning, as the doctor's let him come home. His uric acid levels dropped greatly overnight last night, and everything else in his bloodwork was in line with what the doctors wanted to see.
He's getting settled in at home now. His spirits changed drastically when Dr. Obzut was talking with him this morning and finally said "I think we can let you leave today". I don't think he bothered to listen to much more of her conversation.
This is a big step, just getting through this initial hospital stay which no one expected. A couple of days at home being nice and quiet will help all of us. It's been a trying week to say the least.
We will post some details later about what he is having to do at this point from a medication standpoint, and what clinic treatments he has coming up.
Scott & Sunny
Wednesday, January 31, 2007
Tuesday, January 30, 2007
Current Issues
Since we've just started writing these posts, many of you know some or parts of the issues going on with Scott. At this time his last White Blood Count was 1,800. That is now in the "low" range. Meaning the bulk of the cancerous cells in his blood have been destroyed, and are being eliminated from the body.
The below normal white count also means he has a risk of infection, as the white cells are what fights off any infection in the body. This is one of the largest concerns going forward when Scott comes home. No one with cold or "bug" can be around him, as if he contacts the germ, he stand a high risk of a complication likely to lead to a hospital stay to get in under control.
Another issue as of today, and what is actually keeping Scott in the hospital right now, is his uric acid level. It is in the "normal" range, but is irratic. Killing the blood cells creates uric acid, which must be removed from the body in the liver and kidneys. This is the reason for high volume IV's, which result in poor Scott having to urinate about every 30 minutes round the clock. But that is exactly what should and has to happen right now. This is to decrease the effects of Tumor Lycis Syndrome (TLS). TLS is a very complex metabolic situation which can lead to severe kidney problems. All the uric acid needs to be elimiated from his body at this time. If not, it could cause some problems in the very long term future for kidneys and/or liver function. So having him stay lying in a hospital for a few more days hooked to IV's is a small price to pay to remove the chance of this situation.
We spoke with Dr. Wynn today, and he stated a realistic release date right now is Friday. No idea what time Friday, as Scott's next round of chemo will happen on Friday. The normal "monitor" period after a chemo treatment will be involved. But it will be nice if he can be back home sleeping in his own bed by the weekend.
Scott himself is in good spirits. He was a bit depressed the last couple of days just because he wasn't going to get out of the hospital. He is handling everything else very well right now. He does have some pain in his jaw which is a very common side effect of vincristine (one of the chemo drugs). A little hospital-grade Tylenol is helping ease that pain. His only problems have really come from taking his steroid pills, which he must take for 4 weeks. The problem arose from one simply not being swallowed and partially disolving on his tongue. The horrid taste made him very sick, and each round of this medicine afterward has been a slight challenge, as he has that mental image right now.
If that's the largest hurdle we have this week, that's okay.
The below normal white count also means he has a risk of infection, as the white cells are what fights off any infection in the body. This is one of the largest concerns going forward when Scott comes home. No one with cold or "bug" can be around him, as if he contacts the germ, he stand a high risk of a complication likely to lead to a hospital stay to get in under control.
Another issue as of today, and what is actually keeping Scott in the hospital right now, is his uric acid level. It is in the "normal" range, but is irratic. Killing the blood cells creates uric acid, which must be removed from the body in the liver and kidneys. This is the reason for high volume IV's, which result in poor Scott having to urinate about every 30 minutes round the clock. But that is exactly what should and has to happen right now. This is to decrease the effects of Tumor Lycis Syndrome (TLS). TLS is a very complex metabolic situation which can lead to severe kidney problems. All the uric acid needs to be elimiated from his body at this time. If not, it could cause some problems in the very long term future for kidneys and/or liver function. So having him stay lying in a hospital for a few more days hooked to IV's is a small price to pay to remove the chance of this situation.
We spoke with Dr. Wynn today, and he stated a realistic release date right now is Friday. No idea what time Friday, as Scott's next round of chemo will happen on Friday. The normal "monitor" period after a chemo treatment will be involved. But it will be nice if he can be back home sleeping in his own bed by the weekend.
Scott himself is in good spirits. He was a bit depressed the last couple of days just because he wasn't going to get out of the hospital. He is handling everything else very well right now. He does have some pain in his jaw which is a very common side effect of vincristine (one of the chemo drugs). A little hospital-grade Tylenol is helping ease that pain. His only problems have really come from taking his steroid pills, which he must take for 4 weeks. The problem arose from one simply not being swallowed and partially disolving on his tongue. The horrid taste made him very sick, and each round of this medicine afterward has been a slight challenge, as he has that mental image right now.
If that's the largest hurdle we have this week, that's okay.
Financial Issues
I should actually say financial "non" issues. Several people have hesitantly raised concerns for the financial aspect of Scott's care. Luckily we have very good medical insurance which is designed to be a slight burden with "normal" doctor visits during the course of the year, but covers the cost of such major medical issues 100%, without any cap limits on the coverage. Rest assured that, thankfully, this aspect of Scott's ordeal is not a stress of worry factor.
Who is treating Scott
Scott is currently being treated at St. Joseph's Children's Hospital - Tampa. The address of the hospital is:
3001 W. Dr. Martin Luther King Jr. Blvd.
Tampa, FL 33607
(813) 554-8500
The pediatric oncology group at the hospital consist of 4 Pediatric Hematologists/Oncologists.
Dr. Cameron Tebbi, M.D. (the Director of the facility)
Dr. Tung Wynn, M.D. - Scott's "lead" doctor, as he met us at the ER the night we took Scott to the hospital.
Dr. Dana Obzut, M.D.
Dr. Hans Rossbach, M.D.
All 4 doctors are involved in every patient's care at the hospital, and all procedures and treatment guidelines are based on a national database of pediatric case histories. So "Dr. Wynn" is not treating Scott solely, there is a very large database where the treatments are designed, monitored and adjusted through the whole course of treatment.
The nurses working with Scott at this hospital have been an amazing group of people. All are eager to make sure Scott is as comfortable as possible and has any and all needs or requests met.
Feel free to web search any or all of the doctors and the facility. The link to the hospital web site is in this post, as well as at the top of the page. We are very pleased with the treatment and way things have been handled by this group of professionals. Scott is in good hands.
3001 W. Dr. Martin Luther King Jr. Blvd.
Tampa, FL 33607
(813) 554-8500
The pediatric oncology group at the hospital consist of 4 Pediatric Hematologists/Oncologists.
Dr. Cameron Tebbi, M.D. (the Director of the facility)
Dr. Tung Wynn, M.D. - Scott's "lead" doctor, as he met us at the ER the night we took Scott to the hospital.
Dr. Dana Obzut, M.D.
Dr. Hans Rossbach, M.D.
All 4 doctors are involved in every patient's care at the hospital, and all procedures and treatment guidelines are based on a national database of pediatric case histories. So "Dr. Wynn" is not treating Scott solely, there is a very large database where the treatments are designed, monitored and adjusted through the whole course of treatment.
The nurses working with Scott at this hospital have been an amazing group of people. All are eager to make sure Scott is as comfortable as possible and has any and all needs or requests met.
Feel free to web search any or all of the doctors and the facility. The link to the hospital web site is in this post, as well as at the top of the page. We are very pleased with the treatment and way things have been handled by this group of professionals. Scott is in good hands.
How we found Scott's problem
First off - why is this "Skittles" update page? The neighborhood kids took to calling Scott "Skittles" shortly after arriving in the States, as he has a tendency to wear brightly colored shirts most of the time.
That said.....
We've been through a whirlwind over the last week. Everything started when Scott simply "got sick". On Monday, January 22, Scott got sick in the evening. Nothing out of the ordinary. Since we had noticed Scott had been eating a bit less than normal for a couple of weeks and the glands in his throat seems slightly swollen, we made a doctor's appointment for Tuesday, the 22nd. During that visit to his normal doctor, nothing much was actually determined. The doctor thought he may have a bit of a stomach problem that was killing his appetite. Just to be sure, his doctor wanted to do complete bloodwork, which we planned to due on Thursday the 25th, as he had to fast the evening prior to the test.
We never made that visit for bloodwork. On Wednesday afternoon, Scott was acting rather normal. He even went out on his rollerblades for awhile. He came in for dinner and got sick about 15 minutes after eating. Very sick. It was at this time he developed what we later learned was petichiae. Basically the small blood vessels burst around his eyes and back to his ears due to the vomiting. It was this symptom that got us moving very quickly at that time. Within a few minutes, we were off to the After Hours Urgent Care Center about 1 mile from the house to have him checked out.
Arriving at the urgent care center, the doctor instantly asked "How long has he been like this?" When we told her it happened about 30 minutes prior she seemed relieved. He was seen right away, and she quickly wanted to do a basic blood test to determine a Complete Blood Count. The results of her test sent on us the way to St. Joseph's, where we met Dr. Wynn in the Emergency Room. His blood test at that time showed a White Blood Cell count of just over 89,000. A normally healthy person's is in the 4,000-6,000 range. She suspected it was some form of leukemia, but also stated to us she didn't have enough information to verify that diagnosis.
We both are now rather certain she was fully convinced leukemia of some type was causing the problem.
That said.....
We've been through a whirlwind over the last week. Everything started when Scott simply "got sick". On Monday, January 22, Scott got sick in the evening. Nothing out of the ordinary. Since we had noticed Scott had been eating a bit less than normal for a couple of weeks and the glands in his throat seems slightly swollen, we made a doctor's appointment for Tuesday, the 22nd. During that visit to his normal doctor, nothing much was actually determined. The doctor thought he may have a bit of a stomach problem that was killing his appetite. Just to be sure, his doctor wanted to do complete bloodwork, which we planned to due on Thursday the 25th, as he had to fast the evening prior to the test.
We never made that visit for bloodwork. On Wednesday afternoon, Scott was acting rather normal. He even went out on his rollerblades for awhile. He came in for dinner and got sick about 15 minutes after eating. Very sick. It was at this time he developed what we later learned was petichiae. Basically the small blood vessels burst around his eyes and back to his ears due to the vomiting. It was this symptom that got us moving very quickly at that time. Within a few minutes, we were off to the After Hours Urgent Care Center about 1 mile from the house to have him checked out.
Arriving at the urgent care center, the doctor instantly asked "How long has he been like this?" When we told her it happened about 30 minutes prior she seemed relieved. He was seen right away, and she quickly wanted to do a basic blood test to determine a Complete Blood Count. The results of her test sent on us the way to St. Joseph's, where we met Dr. Wynn in the Emergency Room. His blood test at that time showed a White Blood Cell count of just over 89,000. A normally healthy person's is in the 4,000-6,000 range. She suspected it was some form of leukemia, but also stated to us she didn't have enough information to verify that diagnosis.
We both are now rather certain she was fully convinced leukemia of some type was causing the problem.
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