History

Tuesday, July 6, 2004 5:59 AM CDT

Stefan came home last night. His fever went down and his blood is OK. We have to follow up with different doctors over the next week.

He is happy to be home as we all are. We were told that his balance might be off, as well as his coordination. Happy to say that when he got home, he navigated the stairs as though nothing ever happened. His speech, and complaining ;-), is his usual self.

Thanks for all of your prayers, wishes and thoughts. They were needed and heard.

God bless,

PS I will keep this site going for a bit to update you on his physical progress.
Also, visit the photo album to see a picture of Stefan leaving the hospital.

Sunday, July 4, 2004 1:10 PM CDT

I could not get to a PC yesterday, so here's the update.

Stefan is still in the hospital. He didn't go home yet because he was running a low-grade fever.

Today, he still has the fever and his white blood cell count is low, so they are keeping him for one more day of observation. Rather the additional days then us having to bring him to the ER back at home because things were not right.

His appetite is better, and he is still picky with his food.

God bless.

Friday, July 2, 2004 8:39 PM CDT

Marie stayed with Stefan tonight.

He was doing much better when I left with Noelle. He is walking and bending and laughing. His appetite is not good, so he is his regular self ;-)

He did have a CT scan before we left, but no news on the results.

He got great gifts from Aunt Harriet and Uncle David, Aunt Amy and Uncle Wayne, and Great Aunt Eileen.

God bless.

Friday, July 2, 2004 10:37 AM CDT

Thanks for the prayers this morning.

Stefan is OK. The path in the brain where the shunt was was still open, it did not collapse as expected. Therefore, fluid was collecting in the path and seeping out towards the right side of his head causing swelling. They bandaged his head to place pressure on the path, so that it will collapse.

Stefan is walking around today, fairly quickly though wobbly. We, Noelle was with us, went to the playroom and he bolwed, played with Playdough, and some games. He is feeling much better because he was upset and cried when he had to leave the playroom.

No new date on when he will go home.

God bless.

Friday, July 2, 2004 7:27 AM CDT

Marie called this morning. Stefan has some swelling on the right side of his head. We are concerned and they have scheduled a CT for this morning. Noelle and I are on our way to the hospital right now.

Keep your prayers going.
God bless.

Thursday, July 1, 2004 9:08 PM CDT

Stefan had his shunt removed early this afternoon. Even though he was drugged (morphine and motrin) he was still awake. He cried a lot and I held his hand. I was then able to "snuggle" with him in bed, which he wanted so much. The only "wires" connected to him now are to monitor his heart rate and other vitals; he is no longer on any IV.

Marie and Noelle came in the afternoon. Mommy was happy to see Stefan without the shunt. Noelle played some games with Stefan and she was very happy to see him. Stefan even laughed today.

I put Stefan in a reclining chair (instead of a wheel chair) and took him outside for his first breath of fresh air? (it was humid and hot) in a week. We then went to one of the playrooms and he was standing on his own and doing some walking as well.

The physical therapist had said yesterday that he would be walking crossing his feet over eachother and his balance would be off. Well he was not crossing his feet and his balance was better than I would have thought.

When I spoke to Marie tonight she told me Dr. R said Stefan might be coming home tomorrow. God be praised.

Thanks for everyone's continued prayers and thoughts.
God bless.

Thursday, July 1, 2004 8:36 AM CDT

Yesterday afternoon, Stefan experienced a couple of headaches, so they decided to err on the side of caution and not remove the shunt in his head.

Noelle came by with Marie and was not as scared as she was the day before. She made a card for her brother and they played games (Connect Four, Don't Break the Ice, and a memory card game). They also watched "Finding Nemo". Stefan was very happy to see his Big Sister.

Today Stefan went for another CT and he was very good and "still" in the camera. "Child Life" (they are a part of the Children's Hospital that looks out for and takes care of patient's and parent's needs - books, Internet access, games, etc.) gave him a big white teddy bear (yet another stuffed animal for his collection). If all goes well, no headaches, he will have the shunt removed this afternoon.

His appetite is still off. He takes a few bites of food and then he is no longer hungry. But he is trying a variety. He is also drinknig a lot juice and milk.

That's all for this morning.
God bless.

Wednesday, June 30, 2004 11:39 AM CDT

Stefan was scheduled for a CT this morning. We didn't know if he would keep still for the camera, so he didn't have anything to eat or drink this morning. (He needs to stay still for the CT, and if he won't they would need to give him meds to do so, therefore no food or drink prior to the CT.) Well he was able to keep still, so no meds, and he finally ate around 11:00 or so.

GrandMa and Aunt Caryn came by with toys and books for Stefan and stayed awhile.

PT (Physical Therapy) also came by to test Stefan. He was able to lift his arms and legs up, and wiggle his fingers and toes. He also was able to touch his nose with his left finger, but missed the mark slightly with his right. He was reluctant to stand but finally did, on the bed, and he was leaning backwards and wobbly. All of these results are expected, so no cause for alarm.

After PT left, Stefan threw up a little, because of the workout he was put through and because it was the first time he stood up in six days.

We are still waiting for the results of the CT. If all goes well, he will have the shunt/drain removed from his head this afternoon, and I'll take him outside in a wheelchair for air and sunshine

That's all for now.
God bless.

Tuesday, June 29, 2004 4:49 PM CDT

Things are moving fast.
Stefan sat up today; is moving his head by himself; and sat up in a reclining chair. He also said, "I want to go home!" again, so he is feeling better.
The shunt in his head was valved off so he can get out of bed, though he did not want to.
He will have another CT (cat scan) tomorrow to see if his ventricles have reduced their swelling. If so, the shunt will come out.

We moved to another room, 3014, and new number is 732-253-3714. Though this is a bit of an issue with letting everyone know of the change, it was actually good news. He is still in a private room and his nurse will now be watching him and another child. This means he is well enough not to require a nurse dedicated just for him.

So far, he is on schedule for being discharged Sat/Sun barring any unforseen setback. No results from pathology yet; expect those on Thursday. He will have another MRI before he leaves to make certain the entire tumor was removed.

He is scheduled for physical therapy while here in the hospital as he is shaking when he holds a crayon, or food, etc., but this is no cause for alarm.

That's all for today. Thanks for all the continued prayers and wishes.

God bless,
Genesius

Monday, June 28, 2004 5:15 PM CDT

Just got off the phone with Marie. Stefan is eating solid foods now.

Monday, June 28, 2004 7:00 PM CDT

I just want to thank everyone, from Marie's best friend, to our caring neighbors, to the Doctors and staff at the hospitals, to my friends and co-workers with their emails, postings, phone calls.
And thanks to God that everything is turning out as it should.

Monday, June 28, 2004 6:00 pm

Things have sped up.
Over night, his oxygen mask was removed and he is breathing on his own. I asked when he would be drinking and eating again, and they said it would probally be a while. Well by 8:00 am he was sipping juice from a straw and when I returned from breakfast, he was eating Cheerios. Wow!
He also has had the central lines removed from his legs and is sitting up, though not completely. Because he has a shunt in him to drain spinal fluid; perhaps another day or so on that.
His big words for today, "Daddy, I want to go home and sleep in my own bed!"

Sunday, June 27, 2004 - 8:00 pm

Marie went home to be with Noelle. Not that Noelle needs the attention, many of our neighbors volunteered to watch Noelle while we concentrate on Stefan: Sharon and her daughter Brittany; Zuma and her children Timmy, Anthony and Brianna; Trish and her daughter Emily. Noelle has been enjoying herself with one sleep over after another.
Thanks for such great neighbors.

Stefan had the tubes removed from his nose and throat and his "puffiness" has subsided greatly. He couldn't talk, but a whisper after this, but... When I returned from church and lunch, the nurse told me that he did speak. "Well what did he say?" I asked. "Ask him," she replied. "I want an ice cream sandwich Daddy", Stefan shouted at me. He be oxygen until they feel he will be able to breathe on his own.

Saturday, June 26, 2004 - 8:00 pm

No news today except that Stefan's vital signs are OK and we will know the full pathology results sometime next week.

Friday, June 25, 2004 - 8:00 pm

Marie and I stayed with Stefan all night, getting very little sleep. We were woken up at 6 am, Dr. Ruzicka's team had arrived early so Stefan's surgery was pushed up two hours. After all the prep work, Stefan went into surgery around 9 am.
We left the hospital to pick up our daughter, Noelle, who Marie's best friend, Angie, had watched for us the night before.
When we returned to the hospital, Stefan was out of surgery and we were both so happy to see him. He did not look like Stefan though. His face, in fact most of him, was puffy and he had tubes all over him; down his throat, up his nose, in his legs, arms, and elsewhere. We were just so happy to see our little boy again.
Dr. Ruzicka was performing another operation, so we did not get an update until some time around 9 pm. And the news was great.
The pathologist was on-hand after the surgery to perform a general examination of the tumor, and it appears to be the lesser of the two types: cerebral astro-cytoma (sp). He believes he was able to get the entire tumor. This means that Stefan will not require chemotherapy (sp) or radiation therapy. He will need MRI's every three months for a year or so, plus neurological exams. Then he will require an MRI every year for the rest of his life.

Now the details.
Dr. Ruzicka had to cut a 2-1/2 inch square hole in Stefan's skull to get to the tumor. It was a few cell layers deep, so some good cells had to be taken. The tumor was not 1-3 cm as we had been infomred prior. It was 5 cm in diameter; about the size of one of those pink handballs many of us played with as a kid. The tumor was pressing on an area of the brain which controls balance, hence why Stefan was experiencing the headaches. Dr. Ruzicka also told us that if we had waited a month or two longer, it would have been at his spine and his ventricles, this could have been devistating and possibly fatal for Stefan. (We had been told ealier at CINJ that most parents bring thier child in 5-6 months after they start experiencing headahces and symptoms. We brought him in after ony five weeks. This in thanks to a very concerned mother, Marie, and a pediatrician going beyond what would be considered normal procedures.)

Thursday, June 24, 2004 - 8:00 pm

Today, Stefan went for his MRI. Thirty minutes into the procedure, the nurse called Marie and I into a separate room because our pediatrician was on the phone and wanted to speak to us. We sat down in a private office and he said the words that you never want to hear as a parent. "We found a mass in your son's brain." He told us it was about 1-3 cm in diameter (between a marble and a ping pong ball). I was speachless as Marie sank into a chair in total disblief.
The staff told us they were putting together the films for us to take to CINJ, The Cancer Institute of New Jersey at Robert Wood Johnson Hospital in New Brunswick. When we arrived the doctor's examined the MRI films and checked out Stefan. We were told that he had a brin tumor in the back of his head. We looked at the MRI and were shocked by the size compared to Stefan's head.
We asked if they could tell if it was malignant or benign, and they told us that when there is a growth in your brain, there is no distinction between malignant and benign, IT SHOULDN'T BE THERE! Stefan would need to be operated on to remove the tumor.
From CINJ, Stefan was admited to Bristol-Meyers-Squibb Children's Hospital. We met with the Pediatric Neurosurgeon, Dr Petr Ruzicka. He confirmed everything we were told at CINJ and that he would not be able to remove it until Saturday or Sunday because he would not operate at night because his team, and himself, were not fresh. And on Firday morning, he had an eight hour operation scheduled. He saw the disappointment on our faces and said he would contact the scheduled patient's mother to see if Stefan could go before them.
While Dr. Ruzicka examined Stefan, he saked him if he knew why he was in the hospital? Stefan answered, "I have aliens in my head and I want you to take them out." AS Marie said, "What an astute and intelligent thing for a four year old to say."
As we sat down with Stefan, he was finally able to drink and eat after nearly 24 hours, Dr. Ruzicka came back into his room and told us that the otehr mother had premitted Stefan to go ahead of them.

Monday, June 28, 2004 3:21 PM CDT

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