History

Journal History

Tuesday, October 5, 2004 12:58 AM CDT

Stefan is enjoying 1st grade at St. Theresa. He wasn’t happy doing his homework at first, but has gotten used to the idea. Overall, he is adapting well to the environment. His learning ability and social skills seem to be fine. We still keep him in an education enrichment program outside of school to make sure that he’s comfortable with reading and math.

Health wise, he is doing well. He fights the common cold like other kids. He did get most of his immunization shots again this summer (one year after stem cell transplant). We took him recently for an ultrasound to see how his left kidney was doing after the surgery in July – according to his urologist everything is functioning well. Stefan will have his routine scans done in the next few weeks.

The family will be participating in the Children’s Cancer Fund annual Walkathon on October 10th. See information below if you would like to sponsor Stefan. You can sponsor him before or after the event, donations are always welcome. You can join the walkathon this Saturday at Franklin Delano Roosevelt State Park – registration begins at 9am; the run/walk begins at 10am. For more information, please visit: www.childrenscancerfund.org

You can send pledges on the behalf of Stefan directly to the fund:

The Children’s Cancer Fund
PO Box 658
Millwood, NY 10546

With much love,

Andrea and Arni

Saturday, August 14, 2004 6:49 AM CDT

It’s been a while since we last updated. We’ve been quite busy doing “normal” things. Stefan turned 6 year old on August 10th. We had a party at a sports complex and the theme was soccer, what else! There were over 20 kids there and everyone had a blast. Stefan truly enjoyed the day, and we can’t be anything but grateful to be able to celebrate his birthday this way.

Stefan is recovering well from the kidney surgery. The stent was removed from his left kidney in July, and the ports were removed around the same time as well. He’s been swimming ever since, and loves it. We repeated all the scans and tests during the month of July as part of his check-up. Everything came back normal. The next scans will be done in about 3 months.

We went on a family vacation in late July for the first time in about 2 years. We went to Washington DC for few days, and then to Pennsylvania to stay with Arni’s brother and family who just had their third boy. We’ll be heading to Cape Cod before school starts – the kids love to go there. Stefan will enter first grade at St. Theresa in early September. We feel he’s ready to join his friends. He already spent some time there during the summer at a half-day camp in the morning.

We hope everyone is having a good summer.

With much love,

Andrea and Arni

Sunday, June 6, 2004 12:12 AM CDT

Stefan’s kidney surgery went well. He spent a week in the hospital – came home last Wednesday. The surgery was more intensive than we had anticipated, but he was in the operating room for about 8 hours. The procedure is difficult to begin with and the doctors had move slowly and carefully, due to his medical history and scar tissues from prior surgeries. They were able to repair the left ureter by removing about 2 cm and reconnecting. There was no need to use tissue from the intestine as previously anticipated, so given all possibilities the procedure was a success. He still has a stent in his left kidney, which will be removed towards end of July. The true test of success will be following the stent removal, but in theory the obstruction (narrowing of the ureter) has been eliminated. He is still recovering from the surgery, but everyday is better.

He’ll get a break for now, but we need to repeat all the scans again in the next weeks (done every 3 months). He still has the ports in his chest, although they’re no longer used. For some reason, the plan of removing the ports during the last couple of procedures (while under general anesthesia) didn’t work out. We are trying to schedule a time with the surgeon to remove it. It is hard to maintain and prone to infection. We want Stefan to enjoy the summer and do some swimming. We’re hoping that this will take place in the next few weeks.

The Make-A-Wish day was a lot of fun for Stefan and our family (Dad’s younger sister and family joined as well). We have put together an album of the event to share with you. Stefan is still talking about the event and watches the video (done by a professional) almost daily. It truly made him feel special, which he deserves more than anything after what he’s gone through. The wonderful people of Make-A-Wish (volunteers) that organized the event did an amazing job, and everyone involved really took part in making his wish come true.

With much love,

Andrea and Arni.

Tuesday, May 18, 2004 12:51 AM CDT

Finally the day has arrived. Stefan’s Make-a-Wish day will be tomorrow, May 19th. The event will take place from mid-day to the evening. He will battle the bad guys, and save his sister Kristin from the green Goblin. We’ll update you with all the details and pictures afterwards.

With much love,

Andrea and Arni

Tuesday, April 13, 2004 8:47 AM CDT

We enjoyed some time off with Kristin during spring break last week. We went to the city – Toys-R-Us and ESPN game room on Times Square, and the Maritime Aquarium in Connecticut. Stefan’s leg strength is not quite there yet, so it’s sometimes difficult to convince him to go, but once he’s out he has a lots of fun. We spent Easter at home with Stefan’s grandparents from Iceland. It was rather damp outside, so we did the egg hunting inside.

The kidney procedure didn’t go as well as we had hoped. The urologist was not able to get a scope through the left ureter into the kidney and do a biopsy. The ureter is too narrow and will not drain properly without a stent. The old stent was replaced, but it’s only a temporary solution. There is no clear explanation for this, but it’s possible that the left ureter was always narrow, and was then further damaged by the tumor pressing on it. Stefan will have an open surgery at the end of May – with the attempt to repair the ureter and biopsy the kidney. The last procedure caused a lot of pain and discomfort, so the doctor wants to give him time to heal. He’s scheduled to have a renal scan done at the end of this month, otherwise we should get some time off until the surgery.

The Make-A-Wish foundation has been planning his wish – to be Spiderman for a day. Of course the surgery had to fall on the same day that the event was supposed to take place – May 26th. These people are incredibly flexible and have now moved his special day to May 19th. We’ll update you on the details once it gets closer.

Take care everyone - Andrea and Arni

Monday, March 22, 2004 10:57 AM CST

Hi everyone! We have been quite busy the last few weeks. Stefan’s oncologist wanted to repeat the CT scan and bone marrow test (last done in December), in addition to the bone scan and MIBG – nuclear scan. At this stage, there is no evidence of Neuroblastoma. The left kidney is still showing as abnormal, and it’s unchanged from prior scans. We also had x-rays take of his legs, since he does occasionally complain of leg pains, and the bone scan had some faint symmetrical spots on both legs, but the x-rays came back normal. The plan is to repeat the scans in 3 months.

The stent in his kidney and broviac (tubes used for administering chemotherapy and antibody) will be removed on Wednesday. Besides the bruising inside the kidney the drainage to the bladder is much better. The urologist will decide at the time of the procedure whether a new stent will be inserted or not. A biopsy of the bruised tissue will be analyzed to decide on a more permanent solution. The speculation is that the radiation and/or surgical procedure damaged the kidney.

Stefan is mostly doing normal things like a 5 year old. He’s getting more active and has had few play dates and attended few birthday parties. Of course he hasn’t escaped the cold like the rest of the family. He’s managed to fight it on his own. He goes to “after school” program twice a week, and he’s doing well. We had Stefan’s cousins visiting from Pennsylvania over the weekend and he had a great time.

We’re trying to enjoy the break from the stringent protocol procedures over the last 15 months. We will probably update the website less often. We need a little breather, and as the adage goes “no news is good news”. We appreciate all the prayers, support and postings on Stefan’s website.

Take care. With much love,

Andrea and Arni

Tuesday, February 10, 2004 7:37 AM CST

It’s been a while since our last update. Thank you for the postings in the guestbook. Stefan is currently doing fine. He will finish the last dose of Accutane this week, which will conclude the immunotherapy phase (antibody study). He will have more scans done in the next couple of weeks – bone scan and MIBG. We have decided to continue with Accutane for another 6 months. This will be off protocol. Stefan has handled the Accutane fairly well and we believe that this is the right decision given the aggressiveness of the disease (Accutane has been shown to stop multiplication of cancer cells). His doctor has mixed feelings about this due to lack of data available, but understands and supports our decision.

We did follow up with the doctors at Memorial Sloan regarding possibility of additional radiation to abdominal and neck area. After reviewing radiology films and data from Westchester Medical it was explained to us that additional radiation to the same area would cause permanent damage – his upper body would stop growing. Given the high risk and unknown benefits of more radiation the radiologist at Sloan decided against it.

We also have the kidney issue to deal with. It is possible that Stefan’s left kidney is not functioning properly – due to radiation and/or surgery. A recent ultrasound and MRI scans now show tissue formation around the stent inside the kidney – the stent was placed there in September to relieve obstruction to the bladder. Stefan’s oncologist and urologist have ruled out tumor and think it is a blood clot or hematoma (bruising). He will have another ultrasound towards the end of March. Based on the outcome the current stent will be either removed or replaced. His urologist is not ready to give up on the kidney yet. We support that decision knowing that he may lose the kidney at some point. Given the circumstances this is not the worst thing that can happen since he can function normally with one kidney.

On a lighter note, it is becoming quite challenging to entertain an active 5 year old. We have signed him up for an education program (twice a week). He has been doing his letters and numbers at home, but he’s easily distracted. His doctor recommended that we hold off taking him to school full-time while he still has the ports in place. A fever would send him to the hospital for few days. He has seen his Kindergarten classmates on couple of occasions recently. It did take him some time to feel comfortable, but before we knew it he was running around and mingling with the other children.

Thank you for keeping Stefan and our family in your prayers – Andrea and Arni.

Thursday, January 8, 2004 7:39 AM CST

Stefan finished his fifth and final antibody treatment on January 1st. He experienced some pain for the first days, but overall it was kept under control with morphine. He was very excited to be able to show the nurses his new toys and games that he got for Christmas. The doctors used the opportunity while he was there to do some scans. He had a CT scan of his upper body (head-pelvis), and a bone marrow biopsy. The CT scan was clean, and the preliminary bone marrow biopsy report was clean as well.

We’ll be meeting with Stefan’s doctor next week to discuss the overall status. We need to have 2 more scans done in the near future – MIBG and bone scan. He gets the last shot of GM-CSF today (he’s so used to it by now that he doesn’t even complain about the pinch anymore). He’ll continue on Accutane until early February. This will conclude the protocol and study. He needs to have an ultrasound done tomorrow - he still has a stent in place (kidney/bladder), which has to be removed at some point. We then need to meet with his urologist to discuss a more permanent solution.

We’re thankful that we were able to spend Christmas at home and see the kids enjoy the holidays. We have truly learned how to enjoy each and every day. We wish everyone a happy and healthy 2004. Thank you for keeping Stefan and our family in your prayers – love, Andrea and Arni.

Monday, December 8, 2003 7:37 AM CST

Stefan came home on Thursday evening after finishing his 4th round of antibody treatment. He experienced some pain towards the end of the antibody infusion for the first 2 days, but was fine after that. He had a great appetite the whole time. He was in a good mood, and played sword fight with the doctors and nurses.

We had the first snow storm of the season over the weekend. The kids loved it. We took Stefan to St. Theresa School, where he attended pre-K4, to have breakfast with Santa. He was a little overwelmed seeing so many people, but he warmed up after a little while.

We are looking forward to staying home for Christmas. The next scheduled trip to the hospital is December 28th, but this will be his last antibody treatment. Thank you for keeping Stefan and our family in your prayers – love Andrea and Arni.

Tuesday, December 2, 2003 8:15 AM CST

We enjoyed the last few weeks at home, and the four of us had a nice Thanksgiving holiday. We took Stefan to the movies for the first time in over a year – we saw the movie Elf. Stefan had a blast (had his own popcorn and soda!). We also surprised him and took him to New York City to see a huge wax figure of the Incredible Hulk at the Madame Tussauds museum. Of course we did not leave the city without visiting the big Toys-R-us store on Times Square. He was very excited about the trip.

Stefan started his 4th round of antibody treatment yesterday. He did experience some pain last night, but it was kept under control with additional doze of morphine. If all goes well, we should be home by the end of the week.

It’s hard to believe, but Stefan was diagnosed one year ago. Our journey started on November 20th when he was brought into the emergency room. We’ll never forget those first 4 horrifying weeks at the hospital. The support from family and friends has kept us going, as well as Stefan’s energy level and positive mind. Thank you for keeping Stefan and our family in your prayers – love Andrea and Arni.

Friday, November 7, 2003 7:23 PM CST

We all enjoyed the last 3 weeks at home. We had a wonderful Halloween. We all dressed up (Stefan’s orders!) and went around the neighborhood ‘Trick or Treating’.

Many thanks for sponsoring Kristin’s run/walk-a-thon. She raised close to $900 for the Children’s Cancer Fund. Many thanks for supporting such an important cause. The Metro Stars donated tickets to their final soccer match of the regular season. The tickets were raffled to raise money for the run. Stefan got a signed calendar from all the Metro Stars soccer players.

Stefan started the 3rd round of antibody treatment last Monday. The infusion was administered with GM-CSF like the first time around. He had no major complications, although he did have a low grade fever the first two days and some discomfort. His appetite was good for the most part, which was great to see (no TPN this time!). He handled the pain better this time, and he was kept on low dose of morphine around the clock. Since he was feeling good after the last infusion, we were able to come home last night.

Although the protocol calls for alternating use of GM-CSF and Interlukin-2 (IL-2), his doctor and the study chair feel that the best continuation for Stefan is for him to receive GM-CSF as part of the 4th round (instead of the IL-2 per the protocol), due to the serious side effects that he experienced with the IL-2 during the 2nd round. We feel that this is the safest decision without potentially causing serious harm or compromising the potential benefits of the antibody treatment. The other option was to try the IL-2 again, or take him off the study.

The next scheduled hospital stay is for the 4th round of antibody on December 1st. He’ll get shots of GM-CSF at home, and take his Accutane pills while at home.

We wish everyone a great Thanksgiving – Andrea and Arni

Friday, October 17, 2003 9:39 AM CDT

Stefan came home on Wednesday after 10 days in the hospital. He received a combination of IL-2 and antibody over 4 days. The pain was controlled with a morphine drip. He experienced some serious side effects from the IL-2 (higher dose than last time), which was worsened due to the simultaneous infusion of the antibody. His electrolytes were way off, and the treatment had to be stopped for several hours on day 3. He stopped eating and was put on TPN around the clock. He was retaining fluids (problem carried over from IL-2 infusion the week before). His abdomen was bloated and was pushing on his lungs causing problems with oxygen intake.

Shortly before starting the antibody treatment last Friday - day 4, he had a seizure. Thankfully we were in the intensive care unit when this happened, and he was immediately given medication to control the seizure. Soon thereafter, the doctors did a CT scan on his head to check for tumor and possible brain damage. An EEG test was done to check for seizure activity and brain abnormalities. Both tests turned out to be negative. There was a lot of uncertainty there for a while, but it took hours for Stefan to speak and form a comprehensive sentence after the seizure. This was a very scary experience. The seizure was most likely caused by the IL-2. The doctors are currently evaluating the continuation of the antibody treatment, but Stefan has 3 more rounds to go (this was round 2).

On top of all this, he needed to stay few more days because of a respiratory viral influenza. He needed to be isolated because it’s highly contagious. They gave him antibiotics as a precaution, and steroids to reduce swelling in the lungs. By the time we left for home, his abdomen was looking normal and his appetite was good. He’s been running around at home, playing, fighting with his sister, and eating well. We’re a little dazed after this experience, but we’re just happy to see him feeling so much better.

Many thanks for the pledges. Kristin’s run/walk-a-thon event will be tomorrow (see last journal entry for details) – she’s been running 1.5 miles in PE as part of her 6th grade curriculum, but she’s not convinced she can run the entire 3.5 miles! Mom and dad will be there for support…, also not sure about running the entire distance!!

As always, thank you for keeping Stefan in your thoughts and prayers – Andrea and Arni.

Friday, October 3, 2003 8:54 PM CDT

Stefan came home today after his infusion of IL-2. He did well overall, and was in good mood and friendly to everyone. He had some stomach discomfort and diarrhea, which was expected. His appetite is good, but he still needs supplemental nutrition. We’ll head back in the hospital on Sunday for his 2nd round of antibody infusion. He’ll also get IL-2 throughout the week, but a higher dose. The combination of antibody and IL-2 will be painful, so he’ll be on a morphine drip. He’s not happy about going back, but he’s made a deal with us to stop at his favorite place on the way to the hospital… the toy store!

Some people have asked about Stefan’s need for blood and platelets donations. At the moment, we do not foresee a need for donations. His blood count has been stable since he started the antibody treatment. Many thanks to everyone who’ve donated and we appreciate the willingness to continue if need arises.

Please take a moment to take a look at a fundraiser called “Lunch for Life”, initiated by the parents of another Neuroblastoma child - Sydney Dungan, a 2 year old girl from Fort Worth, Texas. The Children’s Neuroblastoma Cancer Foundation (www.cncf-childcancer.org), a nonprofit organization is overseeing the fundraising effort. The goal is to raise $10 million in 10 days (October 1-11, 2003), to fund research for Neuroblastoma.

There is another fundraising effort taking place locally on Saturday, October 18, 2003. It’s sponsored by the Children's Cancer Fund, which was started by one of Stefan’s oncology doctors at Westchester Medical Center. The fundraiser is called “Step by Step Run/Walk 2003”, and it’s 5K/3.5 miles. The event will take place at FDR State Park in Yorktown Heights, NY (registration at 9am, run/walk begins at 10am – you can call 1-800-426-5413, or visit www.childrenscancerfund.org and select Walk-A-Thon Entry Form). If you’re not up for a walk or run, but would like to sponsor our daughter Kristin, you can make a pledge by mailing a check, payable to The Children’s Cancer Fund, to Kristin Sigurdsson's attention (12 Claremont Rd, Ossining, NY 10562). Any donation is appreciated.

Thank you for all your support and for keeping Stefan in your thoughts and prayers – Andrea and Arni.

Saturday, September 27, 2003 9:11 PM CDT

Stefan has been resting at home for the last 2 weeks. The first week after the antibody treatment was tough on him, he was throwing up and had a bad diarrhea for most of the week. We were concerned that he was getting dehydrated, and we took him in for observation (he did get some fluids and electrolytes at the day hospital). We don’t know why he was so sick, but it’s possible that the Accutane in combination with other drugs was causing a bad reaction. We were able to take him off some of the medication towards the end of the week, and he got better soon after that. This week was one of the better weeks we’ve had since the surgery and antibody treatment. Stefan has been active and playful, and even went to a birthday party! His appetite was good, but we had to put him on TPN overnight for supplemental nutrition.

We’ll be heading back to Westchester Medical Center tomorrow for a 4-day infusion of IL-2 (Interleukin-2) – used to boost the immune system, similar to GM-CSF. He’ll be in intensive care during this time under close observation. We anticipate that we’ll be home by the end of the week. We’ll have to be back to the hospital couple of days later to begin the second round of antibody treatment. This will be a 4-day infusion like the first time.

Monday, September 15, 2003 2:13 PM CDT

We arrived home yesterday after a week in the hospital. The antibody infusion was very painful, but manageable with morphine around the clock. He finished the treatment last Thursday, but we had to stay couple of more days because of a kidney problem. The last CT scan done at Sloan (post surgery) had shown a fairly serious obstruction in the left kidney. We took him for an ultrasound and a renal scan while in the hospital last week, and it required an immediate attention. The doctors had to put a stent between the bladder and left kidney to prevent kidney infection. He’ll experience some discomfort for a while because of the procedure. The urologist has told us that he’ll need a surgery at some point to correct the obstruction. It’s not clear whether the obstruction was caused by the surgery at Sloan or if it’s something that he was borne with.

-- We did manage to take him to a toy store, pizza place, and ice cream place before he was admitted to the hospital. We think it made a difference to do some "normal" things, but he was in good spirits going back to the hospital. Although he’s no longer in isolation (ended August 20th), we try to be careful for the time being. We take him to public places when it’s not too busy and crowded.

We started the Accutane treatment today at home, in addition to GM-CSF shots (used to boost the white blood cell count). He’ll be on various combination of medication over the next 6 months. The next scheduled hospitalization is on September 29th, where he’ll receive new medication in preparation for the next infusion of antibody on October 6th. We need to bring his weight back up in the next 2 weeks, but he’s been on TPN (nutrition through IV) for the most part over the last 4 weeks. He has appetite but simply can’t hold much food down because some of the medication is making him nauseous.

The last bone marrow aspirate and MIBG scan was clean. The next scheduled scan is a CT scan in about 4 weeks, as part of a post-surgery follow up.

Please continue to keep Stefan in your prayers. Thank you – Andrea and Arni.

Thursday, September 4, 2003 9:14 PM CDT

We finally made it home Tuesday evening after 3 weeks at Memorial Sloan. The chest catheter was removed last Friday. There was still good amount of fluid draining out of the left lung when they removed the tube, but they are hopeful that the body will absorb it and that the area will heal itself like it had done on the right side initially. He’ll be closely watched over the next weeks to make sure that his left lung is working properly, and the fluids are not concentrating in the lung or other areas of his body.

Stefan got blood infection twice during the last 10 days in the hospital, so he was loaded with antibiotics on top of everything else. He gained some of the appetite again in the last couple of days, but he’s very skinny after a rough recovery.

After much hectic discussions with doctors at Memorial Sloan and Westchester Medical Center over the last weeks, a decision has been made that Stefan will get an antibody treatment at Westchester - the study there was recently reopened by the FDA. In the end he did qualify for an antibody treatment at both hospitals, but the doctors at Sloan recommended he get the humanized version of the antibody (a newer version of the antibody supported by the National Cancer Institute). Sloan’s antibody regimen is based on a non-humanized version – from mice, and he’s more likely to reject the non-humanized antibody and therefore not get the benefits that the doctors are hoping for. The idea is to administer the antibody soon after transplant while the immune system is suppressed, but because of delays too much time has passed since the transplant.

The first antibody infusion will begin on Monday, and we expect to be in the hospital for a week. The study will go on for about 6 months with the hope that it will stimulate the immune system to attack and kill any remaining cancer cells. In addition, he’ll receive Accutane (related to Vitamin A) in between treatments, with the hope that it will stop the multiplication of any remaining Neuroblastoma cells.

We had to repeat some of the tests/scans in preparation for the treatment. We did a CT scan on Tuesday before leaving Sloan. Today he had a bone marrow biopsy done at Westchester, and he’ll have a MIBG scan done tomorrow. Stefan has reached his limits at this point with all the trips back-and-forth between hospitals, but we’re hoping that he’ll recharge and gain some strength at home in the next couple of days before he begins the next treatment. The next few weeks will be tough on him, since we still need to take him for a follow up and radiation treatment at Sloan in between antibody treatments. Please continue to keep Stefan in your prayers.

Sunday, August 24, 2003 8:18 PM CDT

We haven’t gone very far since the last posting – still in intensive care. The swelling post surgery got worse before it got better. There is still too much fluid leaking from the left lung, so the chest catheter remains in place, which makes it difficult for Stefan to mobilize (should have been removed a week ago). We need to force him to walk to strengthen him and get the lungs to function at a normal level. The narcotics are causing spasm in his abdomen, as well as constipation.

We had to change the diet to no-fat during the week to see if it would help slow down the production of fluids. It did help, except he wasn’t eating enough. He’s now on TPN (nutrition through IV). He has lost more weight than he gained since surgery (but he gained 9lbs of fluids). The doctors tell us that he’ll bounce back once the catheter is removed (it’s very painful and uncomfortable).

The pathology report came back and confirmed a viable disease in the soft tissue (residual tumor). The lymph nodes did not have an active disease, but were abnormal and therefore better off being removed. The bone marrow biopsy came back negative.

Today he had high-fever, but we’re praying that it’s nothing serious. They put him back on antibiotics. Stefan is getting very frustrated and just wants to go home. Thank you for keeping Stefan in your prayers – Andrea and Arni.

Sunday, August 17, 2003 6:59 PM CDT

Stefan is still in intensive care after the surgery last Wednesday. He was in the operating room for 10 hours – in surgery for over 8 hours. They did a bone marrow aspiration and other preparation prior to surgery. The first 2 days after surgery were very painful, and he was in and out most of the time. The swelling is coming down, but he still has a chest catheter to help with the draining of fluids. He is improving every day, and will probably be moved to pediatrics tomorrow.

The surgery itself went well, and there was no damage to major organs or arteries. The residual tumor was ressected, along with lymph nodes along the main artery (Aorta). There was more disease in the lymph nodes than the doctors had anticipated. They were not able to do localized radiation during surgery, since the disease was distributed in lymph nodes over a large area. This was not what we wanted to hear since the scans did not pick up this much activity. We are thankful that the surgery went well. We are discussing with the doctors further treatment, but he’ll most likely receive more radiation.

It is hard to see Stefan go from full energy to now recovering from such intensive surgery. It reminds us how severe and aggressive this disease is. Please continue to pray for Stefan’s recovery – Andrea and Arni.

Monday, August 11, 2003 7:01 PM CDT

We celebrated Stefan’s birthday party yesterday. He turned 5 years old! He is still in isolation, so no big party. The four of us enjoyed the day together. Last week was relatively quiet. We took him to Sloan to meet with the radiologist, in preparation for the surgery.

We met with the surgeon today to discuss the procedure on Wednesday. He explained the potential complications and risks. This will be an extensive surgery due to the location of the tumor. He wants to ressect the residual tumor and surrounding lymph nodes, which are around the major artery (Aorta) and left kidney. It will be an abdominal surgery (incision from chest to the stomach area). He’ll have an epidural catheter, chest and nose tube placed in during surgery, which should be removed once he’s out of intensive care (after about 3-4 days). We anticipate being in the hospital for 7-10 days. The tumor and lymph nodes will be sent to pathology immediately following surgery to see if there is still a viable disease (we pray that it’s not). If there is, then he’ll need a local radiation applied to the marginal areas where ressection took place before the surgeon closes up the cut.

The blood bank in Westchester has told us that we cannot transfer donated blood and platelets to the city. It’s never easy, so at this point we cannot utilize anything from the blood bank for the upcoming surgery. We’ll keep you posted on future needs.

Please pray for a successful surgery and a quick recovery - Andrea and Arni.

Thursday, July 31, 2003 9:11 PM CDT

We met with the doctors at Memorial Sloan in Manhattan this week to discuss the surgery and antibody therapy. The initial feedback is that the surgeon will probably be able resect the tumor without major complications. In addition, they want to radiate the area surrounding the residual tumor during surgery. The surgery is planned for August 13th, and we’ll be meeting with the surgeon on the 11th to discuss the procedure. Once the surgery is done, we’ll know whether Stefan will qualify for the antibody treatment.

Some of the scans were repeated. The CT scan of the pelvis/abdominal area was positive as expected. The MIBG scan was clean (test for tumor spread using radioactive tracers). They also did a CT scan of the head and neck area, and both came out clean. They wanted make sure that there was no activity in the neck area, since the initial tumor biopsy was taken from a lymph node in his left neck. He’ll have another bone marrow aspirate done during the time of surgery.

We’ll be enjoying the next 2 weeks at home, and Stefan’s 5th birthday on August 10th. He’s counting the days!

Thursday, July 24, 2003 2:58 PM CDT

We came home from the hospital yesterday after one week’s stay, following high-fever and infection. Stefan’s doctors decided to leave the port/line in for now, with the hope that the antibiotics treatment will be sufficient. He’ll be on antibiotics (hooked up through his port) at home for few more days. He’s able to move around the house and play, and is otherwise in good spirits.

We’ll be meeting with doctors at Memorial Sloan in NYC next week to discuss the surgery and antibody treatment. Most of the paperwork and scans have been transferred, and we now wait for Stefan’s platelet count to come up so we can schedule the surgery. The platelet count bottomed when he had the infection, but it seems to be on its way up. Amazingly enough, he did not need a platelet transfusion.

Thank you for visiting Stefan’s website and signing the guestbook. We finally added new photos. His hair is coming back (he’s very happy). As always, we are very thankful to everyone for keeping Stefan and our family in your prayers – Andrea and Arni.

Saturday, July 19, 2003 1:48 PM CDT

We had to take Stefan to the emergency room last Wednesday due to high fever and vomiting. He was admitted to the hospital in the evening. His fever spiked to 105 (40.5C) on the way home from a visit with his oncologist. He had high fever couple of times during the first 24 hours. The doctors tried several different antibiotics until they were able to get things under control. There is no way to tell how he got infected. His white blood count (immune system) was very low – he needed shots over 4 days to boost it up. Also, his red blood count was low and he needed a transfusion. His platelets are on the borderline, so he may need a platelet transfusion as well.

It turned out that he had 2 types of bacteria in the blood. His immune system is still severely suppressed (after transplant and radiation), so any infection needs to be treated aggressively. The doctors are concerned that the port/line (in his chest) is infected, and might have to be removed. We’re hoping that the antibiotics will do the job. He’ll be on antibiotics for couple of weeks. We anticipate being home from the hospital mid-next week.

We did hear back from the surgeon. He told us that a surgery is possible, but will be risky due to bleeding because of the location of the residual tumor. Also, the left kidney will most likely have to be removed. We’re working on getting a second opinion on the surgery before we decide.

Wednesday, July 16, 2003 9:25 AM CDT

Stefan finished his 12 rounds of radiation therapy last Wednesday. He handled the radiation rather well, and had no immediate side effects during the treatment. His red blood cells and platelets dropped, but not to a critical level (no transfusion was needed). He did need a shot to boost his white blood cells, since it was low to begin with after transplant. He received presents from the radiation team and a certificate when he was done. He was of course very happy with the gifts and happy to be done.

He repeated all the tests/scans last week. The bone marrow test and bone scan came out negative. The MIBG (nuclear) scan came out negative for the first time, which is a great relief. We don’t have results from the kidney test yet.

We were hoping that the CT scan would come out clean, but it still showed a small tissue (tumor) in the abdominal area, although reduced in size when compared with the last scan. This means that, Stefan will need another surgery. The surgeon will study the scans in the next days to figure out what is possible given the location of the tumor. He was not able to access the tumor during the last surgery due to its close proximity to major arteries. We pray that he will be able to remove it this time.

As things are not complicated enough, the antibody study that Stefan was about to enter has been temporarily closed by the FDA. Although the study is randomized, he would have been able to enter the study due to the fact that he still has a residual tumor. Our doctors don’t know when the study will open and the window of opportunity is running out, as his immune system needs to be suppressed before starting an antibody treatment. The only other option is to take him to Sloan Memorial in NYC, which is something we’re looking into at the moment. The only way for him to qualify for a study at Sloan is for his scans to be clean, which means that he needs to have surgery soon in order to get the maximum benefit, but we need to allow for additional recovery time, as his body is still recovering from transplant and radiation. Things will hopefully become somewhat clearer in the next days.

Thank you for keeping Stefan in your prayers – Andrea and Arni.

Friday, June 27, 2003 1:52 PM CDT

Stefan started the radiation therapy on Monday. He’ll go daily for 2.5 weeks, and will receive 12 treatments in all. He goes in around 7:30am for treatment and is out by mid-morning. The treatment itself is about 15 minutes, but with prep time and recovery it takes few hours. He needs to be sedated each time, because he can’t move during the treatment. He has three markings (tattoos) around his abdominal area where the radiation goes through. The tiny markings are permanent, and were placed there during simulation couple of weeks ago.

The radiation beams will go through his spine and bone marrow, as well as kidney and intestines. His blood count is expected to drop, and he may experience nausea during the treatment. His white blood count is already dropping, but it was low to begin with after the stem cell transplant. He’s done great so far, and he hasn’t been complaining of discomfort. We’re concerned that his platelets will begin to drop. We’ll post another message, if there is a need for platelet and/or blood donations. We thank everyone kindly for past donations.

He is scheduled to begin follow up tests and scans the week of July 7th. We are praying that the radiation therapy will go well and make surgery unnecessary (there was still a residual disease present prior to the strong chemo/transplant). We’ll discuss further treatment options with his doctors once we’ve the results.

Thank you for keeping Stefan in your prayers – Andrea and Arni.

Friday, May 30, 2003 6:32 PM CDT

Stefan came out of isolation on Tuesday, and he came home Wednesday evening after 24 days in the hospital. He did get a blood transfusion before leaving the hospital, so he was full of energy when he came home. He did really well during the whole time, even during 16 days of isolation. The doctors and nurses threw a little party for Stefan once he came out of isolation. They had a Spiderman cake for him, and some gifts. He was very happy, and he biked and ran around the hallways (with a mask of course). This time period was difficult for Kristin, as we didn’t see much of her. She did visit Stefan few times, and she had to wear the “costume” (as Stefan called it) like everyone else.

It is hard to imagine that we’ve gone through the transplant already. We’re thankful that everything went well, and that he didn’t have any complications. He has gained his weight back already (lost about 3lbs during transplant). Stefan will be in isolation at home for 100 days - which means we need to keep him away from crowds. He needs to wear a mask anywhere he goes outside of home. It will take about 12 months for his immune system to completely recover. He will need all his immunization shots again, 1-2 years after transplant.

We’ll meet with Stefan’s doctors next week to discuss and prepare for the upcoming radiation therapy. He’ll receive radiation daily over a 2.5 weeks period, followed by scans and tests. Stefan may need to have another surgery done to remove any residual disease.

Many thanks again for the blood and platelet donations. Stefan received 5 platelet, and 2 blood transfusions following chemo and transplant. He may need more platelet transfusions, as his platelets will likely continue to drop. Thank you for keeping Stefan and our family in your prayers.

Andrea and Arni

Sunday, May 25, 2003 9:10 AM CDT

Today is day +13 post transplant. Stefan’s white blood cell count has been going up steadily for the last 5 days. He’ll be in isolation until the counts are high enough to be considered safe, and he’ll then be monitored as the counts may drop again once he’s off the medication used to boost up his white cells. His platelets have been dropping, and he received 2 transfusions last week. He had nosebleeds prior to both transfusions, but it wasn’t as severe as it has been in the past. His red blood cells have been stable.

Thankfully his mouth sores didn’t get too bad. He gained his appetite back throughout the week, and he was able to keep everything down that he ate. He has lost some weight, so he’ll continue to get supplemental nutrition for most of the day. Stefan hasn’t been complaining, although he likes to be “free” and not hooked up to anything. He bounces off the walls when he’s free – it’s wonderful to see him so happy. We’re hoping to return home by end of the week.

Monday, May 19, 2003 7:47 PM CDT

The transplant procedure went well, and Stefan assisted his doctor with the stem cell infusion by pushing on a large syringe. Today is day +7 post transplant and he’s been in good spirits so far, although he gradually lost his appetite and was put on TPN for supplemental nutrition. He’s had some stomach discomfort and hasn’t been able to keep anything down lately. Otherwise he’s kept himself busy with his Spiderman and X-men collection of toys, and Playstation games. Stefan has been very patient and hasn’t complained too much during the isolation.

His doctors are pleased with his response so far and everything he’s experienced was to be expected. The success of the transplant cannot be fully determined for another 7-10 days. At this point we expect to stay in the hospital for about 2 more weeks. His platelet count has been dropping rapidly and he’s needed 3 transfusions so far. His red blood cell count has been more stable and he’s received 1 transfusion. His white blood cell count is still at zero, and will be for some time until his bone marrow is able to begin production again.

It seems that Stefan will need transfusions (especially platelets) on regular basis for the time being. We’ll post another message once things stabilize. Many thanks for the blood and platelet donations.

Andrea and Arni

Saturday, May 10, 2003 12:20 AM CDT

The high-dose chemotherapy started Monday morning and ended Friday afternoon. Stefan was upbeat when we checked in, but his energy faded as the days went by. He experienced nausea towards the end, but once he vomited he felt better and gained his appetite back. He received new and stronger drugs than before to wipe out his bone marrow in preparation for the stem cell transplant this Monday.

The hospital staff has been preparing Stefan and us for the transplant, by showing pictures of children that have gone through it before. Stefan knows that he’ll be in the hospital for a while, and starting Sunday mom and dad, and the doctors and nurses, have to wear a mask, gloves, gown, and slippers at all times when in the isolation room. The social workers at the hospital have been planning with Stefan how to decorate the room (including Spiderman posters of course). They brought in a little table and chairs for him, so he can get out of the bed and keep himself busy while in isolation. They’ll bring him games and other activity things to keep him busy for the next weeks. Tomorrow, we’ll have to take everything out of his room, and figure out with the nurses what can go back in. Everything has to be cleaned before it goes into the isolation room to avoid infection, as his immune system will be completely wiped out in the next days. Anything we bring from the outside over the next weeks has to be cleaned and sealed (laundry, food/snacks, toys).

During the transplant his oncologist will infuse Stefan’s own stem cells through the broviac tubes (implanted in his chest). The stem cells were harvested or collected after the 2nd chemo. The transplant itself is a relatively short procedure, but recovery will be much longer. The idea is for the stem cells to find its way to the bone marrow to begin a new production of red and white blood cells, and platelets. We pray that the grafting goes well, and that his body will accept it.

We did get some good results from the last bone marrow aspiration (his 3rd one). It was clean, and of course it’s a great relief. His follow up hearing test was inconclusive since he just wouldn’t cooperate. The plan was to test for high-frequency hearing loss (lengthy procedure), but since the short test came out fine the doctors didn’t see a need to sedate him at this point, as he’s going through enough. We haven’t seen any signs of hearing loss, but it’s something we need to look out for.

Many thanks to St. Theresa School/Church and AYSO (our wonderful soccer friends) for raising awareness about Stefan’s need for blood and platelets in the coming weeks, and to all our friends and neighbors for continues donations.

Many thanks, to everyone for the outpour of support, love and prayers for Stefan and our family.

Andrea & Arni

Saturday, April 26, 2003 2:43 PM CDT

Stefan has been at home since the last update, when he had just finished the 6th chemo. He has now completed the induction phase of the protocol, and is now in the consolidation phase, which includes a high-dose chemotherapy and stem cell transplant.

As expected, Stefan’s nosebleeds got out of control about a week after the last chemo and he ended up getting two blood and platelet transfusions. Luckily, we did not have to stay in the hospital overnight.

In this timeframe, we repeated all the tests that Stefan had done initially when he was first diagnosed back in November. His kidney functions were tested in preparation for the high-dose chemo, which will precede the transplant. There is some abnormality, so the chemo dose will have to be adjusted to avoid further damage. The bone scan came out negative, as it did in November. He had an Echo/EKG done to test his heart functions, and he had his 3rd bone barrow test done. We do not have the test results yet.

The CT scan, and the MIBG scan came out positive, and it showed Neuroblastoma activity around the area where the primary tumor was. This confirmed what the surgeon and the primary oncologist had told us, that there is still some activity in that area. We don’t know how active it is, but we can only pray that it is under control. We met with the radiologist to discuss the radiation treatment, which will be done soon after Stefan recovers from the transplant. It is also a possibility that he will have another surgery after transplant and radiation in an attempt remove the residual tumor.

We went through the transplant procedure in detail with Stefan’s primary oncologist. He explained and prepared us for best and worst case scenarios. It will be intensive, as he’ll have side effects from the strong chemo and the transplant itself. Once the transplant begins, he will be in complete isolation at the hospital for about 3 weeks, if everything goes well. It is frightening to know what can go wrong, but Stefan’s braveness helps us stay positive. He’s a true inspiration.

We are finally enjoying some time at home with Stefan. He has gone through a lot since last update, and we are very proud of him for being so patient. We have our moments but overall he has been very good. We were hoping that he would enter the stem cell transplant without an active disease, but we have to continue to be patient and hopeful. The doctors told us that this is to be expected with a stage 4 Neuroblastoma.

Stefan will require frequent blood and platelet transfusions for the upcoming treatment. The doctors suggested that blood and platelet donations begin around the time he checks into the hospital on May 4th for the high-dose chemo. The infusion of the stem cells is scheduled for May 12th. He’ll be in the hospital from the 4th until he recovers from the transplant. We thank everyone for your prayers and continuous support, as we enter into another phase of Stefan’s treatment – Arni and Andrea.

Sunday, April 6, 2003 7:48 PM CDT

The doctors were comfortable with starting Stefan’s 6th chemotherapy cycle last Monday. He experienced more nausea this time around, probably due to some additional medication that he received post surgery. The combination of the chemo drugs and other medications had an impact on Stefan’s temper this time around, and he was frustrated and upset at everyone. He finished the chemotherapy last Thursday, and we were able to go home that evening. He has been very happy at home the last few days.

The doctors ordered a hearing test during the hospital stay, to compare with tests done in November when he was first admitted. He will have another hearing test in the next weeks, but we’re thankful that the preliminary test came out fine.

We did speak to his primary oncologist, who told us that the pathology report (from the primary tumor) came back with some good results. The chemotherapy treatments have had a good impact on the primary tumor (now removed). Also, a lymph node removed during surgery didn’t show presence of tumor activity. We still do not know for sure whether remaining lymph nodes, that the surgeon wasn’t able to remove (close to major arteries), show tumor activity or not. This will become clearer with further tests, chemo/stem cell transplant, and targeted radiation.

We’re looking forward to some time off around Easter with Stefan and Kristin. Stefan will have to undergo several tests and scans over the next couple of weeks in preparation for the stem cell transplant, which will take place towards the end of April. Stefan’s grandparents are coming from Iceland to stay for the next couple of months to help out at home during the transplant procedure, where Stefan is expected to stay in the hospital for several weeks, followed by isolation at home for about 3 months.

Many of you have asked about blood and platelets donations for Stefan for the upcoming stem cell transplant. The doctors recommended that people should begin donating around the time the chemotherapy starts prior to stem cell transplant. We’ll post the date on this website once it has been confirmed with the doctors. We thank each and every one of you for all your prayers and support.

Sunday, March 30, 2003 9:02 PM CST

The surgery went well and Stefan is now in recovering after a 5½ hour laparoscopic procedure. The surgeon was able to remove the primary tumor intact along with the left adrenal gland. We’re just amazed and thankful that the doctor was able to do all this without a major incision, which would have meant more discomfort and longer recovery. The only visible signs are 4 small scars, on the left side of his belly (one of them being the belly button), which are covered with glue (no stitches). The surgeon was not able to remove lymph nodes by major arteries, because it’s simply too risky and will be targeted with radiation in addition to the upcoming chemotherapies.

Stefan was full of energy leading up to the surgery. He received blood transfusion couple of days before the surgery, so he was happy and playful. Thursday turned out to be a long day, as we had to be at the hospital at 7:30am for a 9:30 surgery, which was delayed until 11am (he couldn’t eat after midnight the night before). Besides that, he was telling stories in the operating room (before they gave him anesthesia). He came out of surgery around 5pm, and was in intensive care for about 24 hours. He was moved to the pediatric wing Friday evening (where he usually stays). He had soreness around his body, and was on morphine until Saturday morning. He came around Saturday around noon, and started to play with his toys and order us around (good sign!). He was walking around today, and riding a tricycle with his sister around the hallways.

We expect to begin the 6th chemotherapy (3 day chemo cycle) early in the week, so we should be home by end of the week. This is the last chemo that he will receive as part of this phase of the treatment. He’ll then get high-doze chemo (7th cycle) before the stem cell transplant (towards the end of April).

The last days have been quite stressful, but Stefan has been so brave through all this that makes every day go by easier. We thank you all for your prayers and thoughts over the last days. We feel blessed that everything went well, and Stefan seems to be recovering just fine. We’re just happy to be passed this point in Stefan’s treatment.

Sunday, March 23, 2003 6:01 PM CST

Stefan’s surgery has been scheduled for Thursday, March 27th. The surgeon will try to perform a laparoscopic surgery, but it may be difficult since the tumor is still sizable. He will receive a blood transfusion before the surgery, probably Tuesday or Wednesday in the day hospital. We expect a hospital stay for 10-14 days, since he will start his 6th chemo once he recovers from the surgery.

We took Stefan to the Rockefeller Park last weekend for a little walk. The weather is getting better, so he really enjoyed being outside, climbing and running around. He does get tired quickly, but it’s wonderful to see him just being himself.

Friday, March 14, 2003 7:11 PM CST

Stefan did well at home the week after his 5th chemo, but besides taking preventive medications his nosebleeds got to a point where we had to take him to the hospital. He ended up receiving blood and platelets transfusion last Sunday. The good news is that we didn’t have to stay overnight.

The CT scan was initially scheduled for March 17, but the doctors wanted to get him in earlier so the scans were done on the 12th. We don’t have complete results yet, except that the primary tumor has been “reduced significantly”. The plan is still to meet with the surgeon on the 19th to discuss the surgical procedure.

Stefan had some visitors today from the wonderful people at the Make-A-Wish Foundation. It’s an organization that grants wishes to children with serious illnesses. Stefan’s wish was to dress as Spiderman and fight the “bad guys”, and save his sister Kristin. We are very much looking forward to that day!

We appreciate everyone’s prayers and support. Many thanks for the great meals. - Arni and Andrea.

Sunday, March 2, 2003 6:56 PM CST

Stefan came home from his 5th chemotherapy Friday evening. He did well throughout the chemo, but experienced nausea before he left the hospital and over the weekend. We gave him medication to control the nausea and he has been feeling relatively well. Some of Stefan’s school buddies came to visit him at the hospital and he was very happy to see them. It has taken him some time to adjust to all this and feel comfortable with visitors, especially children. We were very glad to see that he enjoyed having his friends around. He can have visitors when his counts are up (few days before and during chemotherapy).

This is the last chemo before surgery. The doctors want Stefan to recover before he undergoes a CT scan, which is scheduled for March 17th. We will meet with the surgeons on March 19th to discuss the surgical procedure and date of surgery. We anticipate staying in the hospital for 10-14 days, as he will have his 6th chemo immediately after he recovers from the surgery.

Saturday, February 22, 2003 9:26 AM CST

Things weren’t as quiet as we had expected, Stefan had to spend 4 days in the hospital and was released last Sunday. He had a fever that was spiking above 101 F (38 C), so we had to bring him to the emergency room. He was immediately put on antibiotics to make sure that he wasn’t fighting some infection. This was around the time that his white blood cells count was practically at zero after his last chemo, and therefore had no immune system. He ended up getting blood and platelets transfusion, as all his counts were low. We thank you for taking time to donate blood and platelets.

We thought we had prevented nosebleeds at this point, but late Monday evening Stefan had nosebleeds again. We gave him new medication that was supposed to help with the blood clotting, but at first it didn’t seem to be working so we got everything ready for another trip to the emergency room. Thankfully, with Stefan’s cooperation and the medication kicking in, it stopped. Besides couple of exhausting hours we were happy to be able to stay home.

Stefan is becoming somewhat used to the routine and doesn’t complain too much anymore. He’s happy at home and loves to play with his toys, color, and play PS2 games. We switched all his medication that he takes at home to pills, which has made a big difference, and minimized the daily stress. Mom gives him shots (to boost his white blood cells) every day for 2 weeks following each chemo. He’s not happy about that, but Mom is getting pretty good at it. Kristin had a winter break this week, so Stefan was very excited to have her at home. She was busy helping out at home, but thanks to many of you, she was able to go out and enjoy time with her friends.

Stefan will have his blood checked again on Monday, if everything looks fine he will be admitted that same day for his 5th chemotherapy. This cycle is a little longer so he’ll probably stay in the hospital for 5-6 days.

Saturday, February 8, 2003 8:45 AM CST

Stefan came home from his chemotherapy yesterday. He handled the medication well, and was happy and playful during the stay. He had a wonderful roommate, who taught him a lot of new tricks on PS2 (Stefan was very happy!). He was full of energy when he came home and he played until late night with his Legos. We expect some side effects in the next few days, but it should be mild. Stefan will see his doctors next week, and will probably receive a blood and platelets transfusion to avoid another trip to the emergency room.

Stefan will go to the hospital again the week of February 24th for his 5th chemotherapy. He is scheduled to have surgery before his 6th chemo, so he will have some scans done in early March in preparation for the surgery. We will have an indication then how effective the chemotherapy has been in reducing the primary tumor in his abdominal area.

Friday, January 31, 2003 at 10:50 PM (CST)

Stefan was sick for few days after his last chemotherapy, but bounced back and was happy and playful at home. We were hoping to stay home until the next chemo, but we had to take him to the emergency room again last weekend because of sever nosebleeds. He ended up staying for 2 days in the hospital, and received 2 blood and platelets transfusions during his stay. He was full of energy when he came home. We’ve had great moments with him, and he makes us laugh. He looks forward to Kristin coming home from school every day. She has been a great help, and she is very patient with him.

Stefan is scheduled to go in for his 4th chemo on Monday. He’ll probably stay for 4-5 days (the chemo itself runs over 3 days). We’re hoping that the doctors will give him a blood and platelets transfusion before he leaves the hospital or soon thereafter to avoid another trip to the emergency room. His blood count seems to hit a low point around the same time after each chemo, so his uncontrollable nosebleeds are becoming quite predictable. Hopefully warmer weather will help (it’s been very cold!).

We want to thank you dear friends for taking the time to donate blood and platelets to Stefan. He did receive transfusions from a direct donor last weekend. This is a wonderful gift, and we are very thankful. Many thanks to our friends at St. Theresa and our neighbors for cooking for us, and taking care of things when Stefan is in the hospital.

Saturday, January 18, 2003 at 11:02 AM (CST)

Stefan came home from the hospital yesterday after 4 days of chemotherapy. He did well and even played Playstation2 with the hospital staff. He started getting tired towards the end and experienced stomach pain and nausea. He was quite tired when he got home and didn’t have much appetite. He received different medication during this cycle. We just have to see how he handles the side effects this time. The doctors gave him additional medication to take at home. It’s a challenge to get him to take his medicine (he wouldn’t even take Tylenol before all this happened).

We did receive some good news this week. His bone marrow is clean. According to his doctors it doesn’t change his treatment plan. We have to continue to be patient. It appears that Stefan does not have to go for another stem cell harvest, but we’ll find out next week when we meet with his doctor. The 4th chemotherapy is scheduled for early February.

We are very thankful for all your support and prayers. It gives us great strength.

Thursday, January 09, 2003 at 06:18 AM (CST)

Stefan’s nose started bleeding got out of control last weekend so we had to rush him to the emergency room. His platelet count was very low, so he needed a platelet as well as blood transfusion (red blood cells were low as well). He’s had some minor incidents since, but with enough platelets in his body it’s manageable. Stefan had never experienced a nosebleed before his first admission to the hospital (end of November). We’re trying to keep his nose moisturized with saline spray, since it’s not able to heal properly as he goes through the chemo.

Besides all this, the doctors did proceed with his stem cell harvesting on Monday. They were able to collect enough in one day, so no follow up visit was needed on Tuesday as initially anticipated. Stefan did a great job, and played video games and watched TV during the procedure.

We took Stefan for bone marrow test on Wednesday. We took him in early morning and he was out by noon. He hadn’t eaten since the night before, so he was very hungry when he woke up after the procedure was done. It’s great that he’s such an appetite – he needs to gain some of the weight back. Besides some pain following the procedure, Stefan went right back to playing once he got home. As always, Kristin plays with him whenever she’s not in school. She’s been very understanding and helpful through all this.

We have to wait now for the results from both procedures. We did learn that Stefan received blood from a direct donor during his stem cell harvesting, and possibly over the weekend as well. We’re very grateful for such a gift, and ever so thankful that people care so much.

Friday, January 03, 2003 at 07:51 PM (CST)

Stefan finished his second round of chemotherapy treatment on December 26th. He did very well and was discharged right after the treatment, which took 4 days. We were excited to be able to come home so soon and enjoy some of the snow. The next day Stefan wanted to go outside and play, so we bundled him up and took him out to play with Kristin, Dad and Lucky (our German Shepherd) – he got tired after a little while, but it was great to see him enjoy being outside.

We’ve had no major complications and he has been feeling relatively well since we came home. His nose started bleeding on New Year’s Day and we had to rush him to the hospital fearing that his platelet count might be too low. He was released after few hours once his blood work had been checked. Everything turned out to be okay, although his immune system (WBC - white blood cells) was at zero as expected following the chemotherapy.

We are now waiting for his blood count (WBC) to go up so he can be ready for Monday (January 6th), when his doctors will attempt to collect his stem cells for future transplant. He is due back to the hospital on the 13th for his third chemotherapy treatment.

Many thanks to our family, friends and community for the wonderful support you've given us - Arni and Andrea.

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