Gunnar on his third birthday
5-23-01
Dear Friends and Family,
Our little hero went to be with the Lord today at 8:20 this morning. It was very peaceful and he wasn't in any pain. Dr. Patel came over this morning to take blood for routine check and it turned out to be a great comfort to us that he was here with us when it happened. He has been a very dedicated and loving doctor and he was always an advocate for Gunnar. He will always be a part of our lives because of this. Gunnar passed away in Irene's arms where he felt so comfortable so many times before. God did make sure that things went as easy as possible for Gunnar. We were at home, his doctor was here, and he was in his mommy's arms. We couldn't ask for better for Gunnar. We continue to pray for all the other children and their families. God bless all of you.
Sincerely,
Curt Harwerth
5-22-01
Dear Friends and Family,
This is the news that I thought, or at least hoped, I would never have to report. It looks as if we have lost the war. Gunnar won many battles and he fought the good fight but this monster is just too much. Since the last update in April we tried one more regiment of chemo. It was a continuous infusion of vincristine for 5 days and at the same time a continuous infusion of topotecan for 3 days. Dr. Patel has had luck with this treatment on other kids with residual solid tumors. He felt that it was as good a chance to have an affect as any Phase 1 trials that were being used. After a week it was starting to affect his counts and he needed platelets and at one point some blood. Little did we know that the tumor was already spreading and that it was having an affect on Gunnar while he was trying to recover from the chemo. He started having a hard time walking and was pretty much couch bound. On Friday May 11th Gunnar's counts were showing that they had recovered. Then over the weekend he had some seizures so we were having to medicate him pretty heavily. On Monday it was time to see if the chemo had worked. We had an MRI of his brain and the results showed that the main tumor had indeed shrunk by 15 to 20%. However, the tumor had spread all through the lining of the his brain. This explained the pressure and the seizures he was having. This is the day that Dr. Patel told us the news that it looked like we were finally out of options. As you all could imagine this news was extremely difficult for Irene and I to take. Up until that moment we still thought there was a chance. That news is very hard to accept.
He asked us if we would continue to care for Gunnar at home and if so he would have hospice come to speak to us. There was no question that we would be at home with our sons. On Tues. the 15th Gunnar had the most intense seizure to date. I had to give him two doses of Ativan to calm his little body down. It left some paralysis on his left side and over the next two days Gunnar was awake but was having tremors and was not focusing on us. On Thurs. night I talked to Dr. Patel and told him that Gunnar had not slept in two days and that he was starting to look exhausted. He said to give him a half dose of Nembutol so that he would relax and get some sleep. He slept for nearly 12 hours. But when he woke up he wasn't having any of the tremors and he was moving his left hand again. Since then he has said or done very little. He doesn't seem to be able to see us but he is listening. We do have hospice on board now and so far it is just a nurse coming to check him over 3 times a week. The last couple of days it is really apparent that there is a definite progression happening. The one consolation is that he does seem comfortable and is not in any kind of pain. He is mostly sleeping and I haven't had to keep him too heavily medicated. Irene and I are talking,singing, carressing him, and holding him as much as possible. We are playing tapes for him to listen to(Blue's Clues of course). We are having a tough time dealing with the finality of it all. I don't think we will ever experience anything tougher in our lives. We hold on to the fact that Gunnar is a blessing in our lives and has made us better people. He has been so strong and has taken everything in stride. He never lost trust in us even after we put him through so much. He has lived up to his full potential even though he is only 3. He is and will always be my hero. God bless all of you and your families. We continue to feel all the prayers and love from everyone.
Sincerely,
Curt Harwerth
4-22-01
Dear Friends,
I am afraid to tell you all about this but we have very bad news. Gunnar had a spinal tap on Mon. April the 16th and the results showed malignant cells again. He had an MRI of the brain and spine on Friday the 20th and the results shocked us. His spine had not changed but the tumor has returned to his brain. It is already quite large. The last MRI of his brain was only a couple of months ago so this monster has come back very fast. It is in the area adjacent to the original site and may be too delicate for more surgery. His last spinal tap was a month ago and the results were very promising. There were no tumor cells seen. So this news was so shocking and devistating to Irene and I. In the last month or so Gunnar has been showing some symptoms that we were attributing to him still recovering from radiation. He seemed very sensitive about certain stiuations, his eating has been minimal, and he has had some episodes that we were either thinking were stomach problems or headaches. Now we probably know what was causing all this. Dr. Patel is doing some research on some Phase 1 drugs that are being used at St.Judes, and at Duke University and he is talking to some colleages around the country to see what our options are. We know one thing for sure and that is that Gunnar cannot handle any more dose intensive treatments. We ask that you pray for a miracle for Gunnar and also that Irene and I may stay strong for our son during the weeks to come. When we decide what is going to be done I will send another update. God bless you all.
Sincerely,
Curt Harwerth
Feb. 22, 2001
As most of you know our family has been through some trying times over the last year and a half. However, I believe that the last three and a half months were as tough on Irene and I as any time during this whole ordeal. My last update stated that Gunnar had a reccurence of malignant cells and the start of a tumor at the base of his spinal cord. On Oct. 30th we met with Dr. Patel to discuss our options. We discussed doing full radiation to the head and spine as opposed to just the spine. Also radiation accompanied with chemo. Dr. Patel told us that of all the cases of recurrence of ATR tumors he had researched there was no cases of recurrence in the spine. All the documented cases had come back at the tumor bed. We decided that the safest route to take with this tumor that is so aggresive would be to do full cranial/spinal radiation with chemo. Dr. Patel also touched on the side effects that were possible from the radiation since Gunnar is still so young. Of course there are quite a few possible side effects but there was also a good chance Gunnar could make it through without any major side effects. And we felt that not doing anything at this point would be giving up and letting the tumor win. The plan was that Dr. Patel would give an injection of vincristine once a week during the treatments. Also Gunnar would take temozolomide capsules once a day for 21 days.
On Monday Nov.6th we met with the radiation oncologist for the planning of Gunnar's treatments. They did cat scans to set coordinates for the radiation and also made a mask for Gunnar's head. Since Gunnar is too young to comprehend staying still during the treatments he would have to be sedated each treatment. There would be 20 treatments total. And he would get a total of 3600 rads. The radiation oncologist sat down with Irene and I and pointed out the tumor on the copies of Gunnar's scans. Then he pointed out something that shocked us. He showed us the last scans of his head and showed us 2 or 3 questionable areas. Irene and I looked at each other and didn't quite know what to say. He had gone over the scans with a radiologist who had pointed out these areas on the surface of his brain(not the original tumor site). The radiologist that had reported the results of this scan back on Oct. 7th did not catch these spots. Therefore, Dr. Patel wasn't aware of these spots. We told the radiation oncologist that this was the first that we had heard of this. He could tell that we were disturbed but quickly assured us that this was not going to change our plans for radiation. The spots were minute and the radiation should work on them. The spots on his spine were more than likely tumor because it was backed up by finding tumor cells in Gunnar's spinal fluid. But the spots on his brain weren't tumor for sure. They could have been there as a result of the shunt revision surgery. However, you have to treat them like they are the worst case scenario. Well when we got home from the planning session you can guess who the first person I called was. Dr. Patel was shocked that the these spots were not reported by the radiologist. I assured him that Irene and I were very angry and that we felt that we had lost a month of time that we could have already been doing something. Not to mention that if the spinal fluid tests had missed the malignant cells by chance, then Dr. Patel would probably not have ordered an MRI of Gunnar's spine for another 3 months or so. And of course the tumor could have been getting out of hand by then. Dr. Patel said that the radiologist missing the spots was something that happens because reading the results of an MRI can be extremely subtle. I told him that if he could not trust the specialist to read these subtleties then who can you trust. Irene and I thought that we had possible grounds for a lawsuit against the radiaologist. But at the same time we felt that we were wasting our precious energy on being angry instead of what Gunnar was going to be going through for the next month. So we put this behind us the best that we could.
Since we didn't know how Gunnar was going to be handling this whole ordeal we cancelled all of his speech therapy and his sessions with the teacher until further notice. On Nov. 8th we went to Dr. Patel's for his vincristine injection. We had given Gunnar his temozolomide pill that morning. That afternoon Gunnar got his first session of radiation. It lasted about 20 minutes.The treatments were quick but it would usually take Gunnar about 45 minutes to an hour to awake from the sedation. The next two days which were Thurs. and Friday he also got treatments. We had the weekend off. The first three days he was already getting nauseous. So it would be steady doses of Anzamet and Zofran until he would be finished. We started treatments up again on Oct. 13th and continued through the week till the 17th missing one day because the machine was down. On Friday the 17th the radiation oncologist sat us down while Gunnar was recovering from sedation. He proceeded to tell us that the Friday before on the 10th, Gunnar had received radiation to the wrong coordinates. In other words instead getting radiation to his spine that day he received radiation to his lung and kidney. Of course at this point Irene and I are looking at each other in disbelief. We didn't say anything to each other but we were both thinking the same thing." What is up with all this bad luck?" Of course we started bombarding the doctor with many questions. The main one was how would this affect Gunnar's health. He assured us that the single dose for the day to those areas was not enough to cause any kind of permanent damage. The other question was how could this happen and how can we feel totally sure that it wouldn't happen again. He told us it was the tech's fault and that really the machine should have picked up on the mistake and sounded an alarm or not turned on. But since it didn't the physicists would have to work on the machine and a report would have to be made and sent to the state as well as the state sending out someone to investigate what had happened. Apparently the state takes this kind of thing very serious as well it should. The only positive from all of this was that the staff there would definitely be on their toes from here on out. Since on that day Gunnar did not get his full treatment we would have to add one more day to the end so that they could treat his spine. We would later receive a formal letter of apology and a statement saying that they were not satisfied with the treatment we were given that day. Another potential lawsuit and another thing that Irene and I had to put behind us for the time being so that we could concentrate on Gunnar getting through the rest of his treatments.
Once again after a weekend off we presumed we would be starting treatments again. Up until now Gunnar was handling everything okay except for the occasional nausea. His energy level was okay and he was still eating okay. But starting this week things changed. On the 20th Gunnar's counts were getting pretty low. The radiation itself should not have done this at this point. So it was the chemo he was getting at the same time. Therefore we had to stop with that. His appetite was starting to dwindle also and he was starting to lose weight so Dr. Patel started the TPN. He would get it for 12 hours at night which meant he wouldn't have to be hooked up all day. This is a blessing and it is also a blessing knowing that if he doesn't eat or drink as much as he should in a day then he is still getting all the nutrients he needs. Irene and I had enough stress at this point without having to worry about hounding Gunnar to eat or drink. The TPN does a good job of maintaining his weight but it does kill his appetite somewhat. However, he was eating about the equivalent of one good meal per day.
He was able to get the treatments for the 20th, 21st, and 22nd and the rest of the week we would get a rest because of Thanksgiving holidays. We were hoping that the rest would help Gunnar's platelet count to recover. The doctors told us that if it had gotten any lower than 50,000 then they would have to halt the treatments so that he could recover. On Mon. the 27th his platelets were too low to proceed so the doctors told us that it would probably be wise to wait till the following week to continue. By Fri. the 1st of Dec. they were on the mend and it looked like we would be able to start again on Mon. the 4th. The rest was good to have, but when your in this situation then you kind of just want to get things over with. And although they assured us that halting the treatment for these periods should not affect the overall effectiveness of the treatments we still always thought, "Is it going to work as well?" On Mon. the 4th Gunnar continued his treatments once again. This stretch lasted for 2 weeks until Fri. the 15th. During this time Gunnar continued on the TPN and was still handling things pretty well. On Mon. the 18th Gunnar's platelets were again too low to continue with the treatments at this point. On Tues.the 19th Gunnar went to the hospital to get platelets. By Fri. the 22nd he got platelets and blood. Christmas weekend was here and we were definetly not planning anything special. We would be staying at home for Christmas eve and Christmas with just the grandparents visiting to bring the boys their gifts. On Tues. the 26th we started his treatments again. At this point we had 5 more to go counting the make up day. So we finally finished on Tues.Jan. the 2nd.
On Wed. the 3rd we took Gunnar to see Dr.Patel. Irene and I had noticed that Gunnar's shunt valve was looking a little red so we pointed it out to the doctor. He agreed that it did not look normal and that it could possibly be infected. He sent us over to Gunnar's neurosurgeon so that she could see him. She agreed that it could be infected but she didn't feel certain that it wasn't just under the skin and not involving the valve. After Gunnar's shunt revision surgery he still had a little scab that was still there when we started radiation. The radiation did not allow it to continue to heal properly so this could well have been the source for the infection. She told us to see how it looked after a couple of days and call her on Friday. By the next day his head looked more red and was swollen in that spot now. So we didn't wait and went to see the surgeon. She said that it would have to come out. So we went to the hospital that day and she started Gunnar on antibiotics. She set up surgery for Fri. the 4th in the evening. By the time we had checked into the hospital Gunnar was starting to run a fever. So the doctors started getting blood cultures to see if they could tell what organism was causing the infection. He was pretty miserable that night in the hospital. His fever was pretty high and I think his head was sore also. Any way, neither of us got much sleep that night.
Gunnar would need platelets to get up to a safe level for surgery so they gave him platelets on Friday afternoon about 2 hours before surgery. The surgery went very quickly(about 45 minutes) and everything went well. The next couple of days would show if indeed he would have to have the shunt put back in again. The area around the valve was definetely the source of the infection. The surgeon said that it was covered with puss. They cultured this and found it to be staph aureous (I'm not sure that's how it is spelled). The doctors told us that this could potentially be a very nasty bug. Once they knew what antibiotic would work best they put Gunnar on Napfcillin. The regiment was a dose every 6 hours for 2 weeks. On Monday the 7th they did a cat scan on Gunnar's head to see if the fluid level on his left side was stable. This would tell us if they would have to keep him to place a new shunt or whether we would get to go home. Things looked good. So if there was a blessing with his shunt becoming infected it was that we were able to get rid of it. It was supposed to be temporary but he probably would have had it for at least another year or two.
We got to take Gunnar home and we would have to keep administering the antibiotic for the rest of the 2 weeks. Gunnar continued on the TPN and would stay on it till we were at least done with the antibiotic. When we got home from the hospital Gunnar had a chest cough. The doctors were aware of this and weren't entirely convinced that the fever that he had experienced in the hospital wasn't the start of a virus. But other than the cough it didn't seem to affect him too bad. On Mon. the 15th we took Gunnar to the surgeon to remove sutures. At that point he told us that it looked like Gunnar was going to be safe without the shunt. Again this was great news for Irene and I. That day I started to feel like I was getting a cold so I was thinking that I either got it from Gunnar or from someone while we were in the hospital or at Dr. Patel's. On Thurs. the 18th Grant was coughing and had a runny nose and was very clingy. We decided to take him to the pediatrician's office. He listened to his lungs and decided that Grant should be tested for infection or RSV. The pediatrician was seeing a lot of kids with this at that time. Sure enough Grant had RSV. Which meant we probably all had it. Irene started getting cold symptoms a couple of days later. We had heard about RSV before and how serious it could be for the kids but I actually think I had it the worst. Grant had a pretty bad cough for about a week but the whole time he had it he was still playing like normal. And I guess Gunnar never had it that bad either.
On Friday, the 26th we finally stopped the TPN. Right away Gunnar lost some weight. But over the next few days he got back into eating and drinking pretty good and was maintaining the weight. On the 29th Gunnar had an MRI of his head. This was the first since the radiation. Later that evening we got the results from Dr.Patel who had met with the radiologist that he trusts the most. This was key considering what had happened the last time. The results were good. The questionable spots were gone and his fluid level was stable. Irene and I just thanked God and hugged each other.
On Friday the 2nd of Feb. Gunnar had an MRI of his spine. We were more nervous about what we would hear about this. We would have to wait for almost a week because that radiologist that Dr.Patel uses was out of town till the following Thurs. Also that Thurs. the 9th Dr. Patel would do a spinal tap to test his fluid. Well in the mean time along with being stessed from the waiting for results we also had to deal with Grant being sick again. On Sat. the 3rd Grant threw up and then got very sniffly. By Sunday he had thrown up most of his meals. And by Mon. he started to get fever along with diarrhea. He was also very lethargic which is also the exact opposite of his normal personality. Irene and I were of course concerned. Also that Gunnar would catch it. We talked to the pediatrician on Tues. after he wasn't getting better and we thought that he should be. He informed us that it sounded like Grant had Rotavirus. Many kids had it at this time. Grant's symptoms were classic. It lasted for 6 days and finally he got over it about Friday evening. What a week that was. That virus is a nasty one.
Any way back to that Thurs. the 9th. Gunnar got his spinal tap done. And the results of his MRI were good. The tumor spots were less prominent and there were no new spots. The fact that the spots were still there made us a little uneasy but the radiation is not going to disintergrate the tumor. It just doesn't work that way. The spinal fluid did have cells that appeared to be the same as the last time but the difference was that these appeared to be dead and or dying. Dr. Patel said this is what he expected to see and that he felt very good about the results all the way around. Again Irene and I were generally relieved.
So we were feeling pretty good starting that weekend. Hold everything. Gunnar started acting sick on Sat. the 10th. Now when he starts throwing up we have to guess if it is brain related, radiation related, or does he have a virus. He is still very speech delayed and all this has probably set him back some more so he can't tell us what's bothering him or why he feels bad. We just know by the throwing up and the upset look on his little face. After Sunday and him not eating or drinking much we decided to take him to Dr. Patel's on Mon. the 12th. He put Gunnar on fluids so that if he did have the Rotavirus he wouldn't dehydrate. On Tues. morning at about 12:30am Gunnar started getting episodes which seemed to be like bad cramps in his mid-section. They came and went every 10 or 15 minutes for a couple of hours. I called Dr.Patel and since the cramps didn't seem to be subsiding he said to take him into the emergency room. He phoned ahead and they were expecting us and knew what had been going on with Gunnar. There they gave him something to relax him which helped. Then they did xrays and cat scans to rule out any serious, obvious problems. They did tests on a stool sample and it was definetly Rotavirus. So we got him home about noon that day and kept him on fluids as well as some zofran and anzemat for the nausea. For the next several days till about Sat. or Sun.(the 17th and 18th) he really wasn't feeling himself. Not so much throwing up thanks to the nausea medicines but quite a bit of diarrhea. So finally we took him off the fluids on Tues. the 20th and the last couple of days he seems to be perking up and his appetite is coming back. Finally things are starting to seem just a little bit normal.
The plans for the future are a spinal tap probably around the 8th of March. That would be a month since the last one. Then MRI's about a month after that. It looks like Irene is going to be starting back to work next week. I will be staying with the kids for as long as is financially possible and Gunnar is past needing so much special attention. He will start his speech therapy, some physical therapy, and his teacher sessions again starting next week. We are excited about him getting back on track with all that again. Thanks to everyone who has kept Gunnar in their prayers. I'm sorry it has taken me so long to update but I just had to wait for some positive news. God bless all of you and your families.
Sincerely,
Curt Harwerth
October 29, 2000
Dear Friends,
After rigorous testing of Gunnar's spinal fluid and a very detailed MRI study of his spine I am afraid to report that there appears to be some malignant cells present. Of course this changes many things in terms of how we are going to finish his treatments. We are going to meet with Dr. Patel on Mon. to see what our options are. Please start your prayers for Gunnar. The doctor told me that I can't lose hope so I guess he thinks we caught it early. God bless you and your families.
Curt
October 19, 2000
We have had some ups and downs in the last two months but for the most part Gunnar is doing well. He has continued with his speech therapy twice a week and he is making excellent progress. Thank you again to everyone who has kept us in your prayers.
On September 1st Gunnar had his first dose of(post chemo,post radiation) intrathecal chemotherapy. He received Thiotepa and also had a spinal tap to check his spinal fluid. Dr. Patel told us that we shouldn't be seeing any major side effects from the once a month intrathecal chemo treatments. Gunnar did do okay physically after the treatment and the only thing that happened was that his platelet counts dropped a little but not enough for a transfusion. However, Irene and I noticed that a few days after the therapy he seemed to regress a little on his speech. He was starting to use a couple of sentences and he seemed to have lost them. It was about that time that we also noticed some other unusual behavior from Gunnar. He was getting frustrated and agitated easily and would hit his head at the tumor site. He was also throwing up 2 or 3 times a week right after a meal and coinciding with a bowel movement. Irene and I were puzzled because the MRI's that he had a few weeks before showed no recurrence of tumor. Dr. Patel decided to do another MRI to see if there were any changes. The MRI showed that there was still a significant amount of fluid on the left side of his brain (the side of the tumor). This has been the case for the last couple of months. His subdural shunt appears to have drained the excess fluid on the right side but not the left. Up until now Dr. Patel and the neurosurgeons didn't seem too concerned about the fluid not being drained off on the left side. However, Dr. Patel thought that this could be the cause of the behavioral changes since he had seen a similar case in another child. He sent us to the neurologist with a copy of the MRI so we could get his opinion as well. The neurologist decided to take Gunnar off of the Phenobarbital that he had been taking for over a year since his initial surgery. He felt that the Phenobarbital might have been contributing to some of Gunnar's unusual behavior. He also wanted Gunnar to get an EEG but he knew that the fluid would not allow for a good reading. Dr. Patel agreed. Within a few days Gunnar appeared to be less agitated and was sleeping better at night. Because there was still a significant amount of fluid his doctors decided that the best course of action would be to extend his shunt tube so it would reach the area where the excess fluid is. This was a tough decision since he was already starting to show signs of improvement after stopping the Phenobarbital but if his well being would approve we thought it was the right thing to do. He had surgery on Wed.Sept. 27. The surgery went well and he stayed in the hospital until Fri. Sept. 29. He was just starting to grow a good head of hair and they shaved it off for the surgery. When we brought Gunnar home of Friday we were unpleasantly surprised to find his baby brother Grant had been throwing up. On Saturday he continued to throw up and was running a fever of 103. He also had a cough that sounded "seal like". Since the pediatrician's office was closed we took Grant to the emergency room. They told us he had croup and not only were we concerned about Grant but we were also afraid that Gunnar would also get it. The doctor at the hospital told us to keep the boys separated from one another. On the other hand Dr. Patel said it was too late to worry about separating them because Gunnar was already exposed. We still decided to separate them for a couple of days just to be safe. Irene and Grant were quarantined to the master bedroom while and Gunnar and I had free run of the rest of the house. We think Grant picked up the virus nine days before from the pediatrician's office on his 1 year well baby visit. We are happy to say he is doing good now and Gunnar never caught the virus. Thank God!!! However, Irene did get a little sick later that week.
Gunnar had healed up from the surgery quite nicely. He had an EEG on Tues. Oct. 10 to check for any seizure activity. He also had a follow up MRI on Thurs. Oct. 12 because Dr. Patel wanted to see if everything was looking okay before he was given another intrathecal chemotherapy treatment. He planned to give the therapy the next day Friday Oct. 13 but when we got to the office he informed us that he could not see the end of the shunt tube on the MRI. Therefore he didn't want to proceed with the therapy and sent us to the hosptial for a CT scan. The rest of the day Irene and I were quite worried with the news they had given us even though the MRI still showed no recurrence of tumor. When a doctor tells you that he can't see something on an MRI that the surgeons just put in, it is a little un-nerving to say the least. Later that evening Dr. Patel gave us the news that the shunt tube was in place and was functioning. We were very relieved. Since all was well after the surgery he wanted us to proceed with the next round of therapy which was October 18. Gunnar got a triple dose injection which includes Methatrexate, Cortizone and another drug that escapes me at this time. Dr. Patel calls it the "triple Margarita". He seems to be fine so far.
We have met with the officials in our school district and Gunnar has been enrolled in the Homebound program for this school year. It will include speech therapy and early childhood special education instruction. We will also be continuing his speech therapy at the hospital as well.
On the lighter side of lives of the Harwerth family we had a couple of birthdays. Grant turned 1 on Sept. 21st and Gunnar turned 3 on Oct. 7th. Unfortunately we didn't get to do much celebrating on either birthday but we are so grateful and thank God for giving us this time with our sons. We continue to pray for all of the children on the Website and thank everyone for their prayers for Gunnar. God Bless You All!!
Sincerely,
Curt Harwerth
Aug. 16, 2000
Hello to everyone who has been with us through this whole ordeal. Everyone who has been there with support, prayer, thoughts, and positive thinking. It's time for another update on Gunnar's progress. Irene and I are happy to say that he is doing very well.
On June 1st we attended a "Brain Tumor Clinic" with Gunnar. This is something that the hospital does for children who have gone through having a brain tumor and is intended to be an aide to the parents. It lasted about 4 hours and we got to talk with different hospital personnel about how things are going with Gunnar and what would still need to be done. We met with therapists, a nutritionist, an endrocrinolygist, a radiologist, people from social services, as well as his regular doctors. After the meetings these people all met and discussed Gunnar's case and made evaluations and recommendations for us. Over all we thought it was good to hear that Gunnar was on the right track for the most part. We did get recommendations for speech therapy and this is something that Irene and I knew he would need at some point.
Dr. Patel set up a meeting with a radiation oncologist for us. He spent many weeks prior to this researching as much as he could so that he could come to a sound decision and present us with the course of therapy he thought we needed to take with Gunnar. He knew he didn't want to do full brain radiation at this point. Gunnar is still too young and the side affects could be devastating. He felt that "involved field" would also be too intense for Gunnar. He wanted to go with "intensity modulated radiation" and since San Antonio has one of only twelve Peacock Radiation machines in the country this would be the route we would take for Gunnar. On June 7th we met with Dr. Ameduri, the Radiation Oncologist, for the first time so that he could explain everything that we needed to know about what Gunnar was going to be going through . We had heard all the horror stories about radiation on young children and we expected to be very depressed after the meeting. However, we were pleasantly surprised that the news we were given was not that gloomy. He said that the dose was small enough that we didn't have to expect any major side effects. This was such a relief. He told us that this machine delivers a dose so specific to the site that it would allow for a relatively low dose. Since the dose was going to be small and it would be given only to the tumor bed the side affects would be minimal. The dose that he and Dr. Patel had decided on was 1200(Rads, I think). Gunnar would get it over a 6 day period(200/day). We would also have to go in one day for planning which entailed CT scans and molding a mask for Gunnar's face so that when he is on the table he stays absolutely still even though he would be sedated. On June the 15th we went in for the planning session and on the 21st he began the radiation. We went back on the 22nd and the 23rd. Then after the weekend he started again on the 26th and finished on the 28th. Gunnar did have to be sedated every time and I forget the name of the sedation but it was very quick acting and fairly quick to ware off. He really did not mind going on those days maybe because he wasn't remembering what was happening each day. Now Dr. Patel wanted a short break for Gunnar before we got some more tests done. This would also give us a chance to observe Gunnar and see if indeed he was or wasn't going to have any adverse affects to the radiation. On July 9th Gunnar got a very special visit from the star of his favorite TV show. Yes, you guessed it. Steve from "Blue's Clues". The Make a Wish Foundation arranged it for us. This is something that we asked for but never assumed it would happen. It was unreal. Steve was in our home playing with Gunnar for 2 hours.
He came all the way from New York City and was here for no other reason than to see Gunnar. Gunnar touched his face when he first saw him as if to say "are you for real". It was a truly great experience and Steve and his assistant were as nice as could be. I got some great video footage of the visit. Grant even seemed to enjoy it.
For the last couple of months Gunnar has really been growing a great head of hair. Wouldn't you know it that the only visible side affect from the radiation would be losing some hair. About three weeks after the radiation he lost very precise amounts of hair on both sides of his head in his temple area and above the ears. It's so exact that people have asked us if we cut it that way. It does look kind of in style for kids these days. Really, we are not that disapointed about this. I mean, if this is the worst side affect he will experience from the radiation then thank God!
On July 19th Gunnar started speech therapy at the hospital. He goes twice a week. Irene and I have known for quite a while that he would need this. It was just a matter of when to start it. Dr. Patel suggested that we wait till he was done with his treatments so that he could progress without the hinderance of therapy. We figured that he was about a year behind developmentally. On Aug. the 3rd we got a neuro-psychologist's evaluation on Gunnar to determine a base for where he is at and see what kind of work we have ahead of us in helping him to progress. He is going to be three soon and we want him to catch up so that when he does eventually go to school he will be ready. Right now with his immune system still being compromised school or daycare is out of the question. The evaluation told us just about what we were thinking. Gunnar is behind developmentally in some areas. The most obvious is his ability to communicate verbally. However, we feel that he is still a very bright child and that he will catch up to his age eventually. He is already making great strides with his speech since he started therapy.
This brings us to the last couple of weeks. On Aug. 7th Gunnar went in for an MRI of the brain and GFR or kidney function test. As I have mentioned before these days are always nerve racking for Irene and I. Thank God the news was good. The MRI shows no sign of tumor. Dr. Patel said that there is some signs from where the radiation caused scarring but that this was to be expected. On Aug. 14th Gunnar went in for an MRI of the spine and for an ecocardiogram. More good news. The results were good in both cases. We also saw the ear doctor recently. Gunnar's hearing is still okay. He is well within the range for normal verbal communication. Things are looking good right now so where do we go from here. Dr. Patel wants to bridge him to another year by using a once a month chemo injection to the spine(for about 6 months). He's telling us that this therapy will not have any major side affects like the other chemo did. He thinks that this would be wise and it would bring us to a point where if we had to it would be safer to do full cranio-spinal radiation. Irene and I don't want him to go through any more radiation. So hopefully at that point he is still showing no reoccurence of tumor and there is more data to back us up on not opting for the radiation.
Today it has been a year since we learned that our son had the tumor. That day sticks in my head like it was yesterday yet it seems like it has been ten years with everything that he has gone through. I feel that the only positive that could possibly come out of this is that doctors maybe learned something from Gunnar's case to help them with future cases. Irene and I thank God every day that our son is still with us and is doing well. He also blessed us with another beautiful son. Grant is doing great. He is almost 11 months old now and he took his first steps just yesterday. He is a little ball of fire and is into everything. He crawls so fast that we are really hoping he starts to like walking so that it will slow him down. Of course we are aware that walking leads to running but that's a little ways off.
Irene and I have still been on leave from our jobs but the time is nearing and we will probably be going back to work soon. Our employers have been wonderful and so understanding about our situation. They have not pressured us in any way and have kept our positions for us. We appreciate all their support .
Again we want to thank everyone that continues to keep us in their thoughts and prayers. We continue to pray for all the children on the website and know that we are thinking of you too. God bless you all.
Curt Harwerth
May 28th, 2000
Well the last month and a half weren't quite as stressfull as the last round but we did have some complications. Gunnar started his 7th round of chemo on April 10th. The same two day regiment was given as the last two rounds only there was a reduction in the amount of Thiotepa by 25%. Dr. Patel didn't reduce the amount of Carboplatin because reducing it any more would mean it wouldn't be effective. Dr. Patel sent him home with fluid bags both days which had a steady drip of Zofran. Once again we had to bathe Gunnar every four hours after the first dose of Thiotepa and it ended about 24 hours after he got his last dose. All together Gunnar had to endure 12 baths in that 2 day period. We wanted to really make sure he wasn't going to have any skin problems. I think the reduction in the doses of the meds made a difference with the nausia. Gunnar didn't seem to be as prone to throwing up this round.
Wed. the 12th started with the last couple of baths then we went to the hospital for his stem cells. The procedure went very smooth thanks to the efforts of Deborah Dewinne. She is the main transplant nurse at the hospital and she has worked with Gunnar since the beginning. We can't say enough about her. She has been fantastic. She is extremely knowledgable and has a great repoir with the kids. She also works very closely with Dr. Patel. We have been truly lucky to have had her work with Gunnar.
Gunnar started on TPN that day also. We gave it to him for 12 hour periods overnight. We also started him on gCSF. By Friday the14th Gunnar was neutrapenic. We made it through the weekend but on Mon. the 17th Gunnar needed to get platelets. When we left the hospital his temp. was up but not to a critical point. Dr. Patel was out of town that weekend and was not due back till late Tues. Early Tues. morning about 5:00 am Gunnar woke up with a fever of 102.9. So we called the on-call doctor and he said to get him over to the hospital. By 6:00 am Tues. the 18th we were in the hospital room. Dr. Patel was notified and he gave instructions to start Gunnar on an antibiotic called Fotase( not sure about spelling). It's a broad spectrum antibiotic so whatever was causing Gunnar's fever would be affected. More than likely he became septic. His own natural gut flora takes over when his immune system is nonexistent . And sure enough a couple of hours after he was in the hospital his temp. was back to normal. But he still needed to get the antibiotics every six hours round the clock the whole time we were in the hospital. They ran it through both ports alternating them every other dose. We saw Dr. Patel on Wed. morning and he told us that until his white blood cell count came up we would be in the hospital. It looked like we would be there till at least Sat. Hopefully we would get out before Easter. That day Gunnar received blood and platelets. The whole time we were in the hospital Gunnar never felt bad. His spirits were up and he thought that nothing was wrong. This makes it very difficult to convince him that he has to stay in bed. And when he's hooked up to antibiotics and TPN at the same time and he's trying to stand up in bed it becomes very challenging. He watched a lot of "Blue's Clues and played with his blocks and other toys that we could lug to the hospital. His WBC's inched up on Fri. the 21st. The pattern that we have grown accustomed to seeing is nine days after receiving his stem cells he always starts to climb out of his neutrapenia. So Saturday came along and Dr. Patel said we could leave after he got some platelets. We were home by about 1:00 that afternoon. What a great feeling! We were home for Easter not that we had anything special planned but still it was nice. We kept Gunnar on TPN for the next few days. On Mon. the 24th Gunnar's counts were doing okay. On Wed. 26th he needed blood and platelets so we were at the doctors and hospital all day. Dr. Patel decided to take Gunnar off the TPN starting Thurs.the 27th. He wanted to see if Gunnar's appetite would increase by doing this. It did and by Sat. he was starting to eat pretty good. Dr. Patel left his port accessed over the weekend just in case we needed to start him back on TPN or he needed meds. On Monday May 1st we went to Dr. Patel's and since Gunnar's counts were alright he deaccessed Gunnar's port. He also told us that the next step would be extensive tests for Gunnar to get another base line before we proceeded with the next phase of treatment. He also wanted to speak with other doctors and gather some data and that would take a couple of weeks. He set up the first round of tests for Mon.the 15th. If his platelets were high enough then he would also do a spinal tap on Wed. the 17th.
On Mon. the 15th Gunnar had an MRI of the brain, kidney function test, and hearing test. On Wed. the 17th we went to Dr. Patel's for a spinal tap. The results of all these tests came out great. There is still no recurrence of tumor, his spinal fluid is clear, his hearing is good, and his kidneys are functioning normally. Irene and I were thrilled to hear the news. Dr. Patel set up 2 more tests , an MRI of the spine and an ecocardiogram. He didn't want to do the MRI's on the same day because of the length of time it takes and the amount of sedation that is required. So he split up the tests. On Wed. the 24th Gunnar had the spine MRI and the eco. We were thrilled again to hear that every thing looks good. This is the point that we're at now. Gunnar is acting pretty normal. His speech is still a bit behind and he is still not 100% physically but for the most part he's a 2 1/2 year old. Grant is growing like crazy and is 8 months old now. We have some difficult decisions to make in the coming months. It looks like we will be starting radiation soon and with Gunnar's delicate age the controversy comes in. This coming week we will be getting the input from a few different doctors on which course to take. I think it will be "site specific" or confirmational radiation first and try to wait as long as we can before whole brain radiation.. Again we want to thank everyone for all the prayers and well wishes and to please keep us in your prayers and ask that God guide us down the correct path. We continue to pray for all the other kids on Michael's page. Thanks and God bless all of you.
Curt Harwerth
Update April 8, 2000
Two things that we cannot say about the last 7 weeks are that they have gone by quickly or easily. A few things that we can say about the last 7 weeks are worrisome, frustrating, nerve-racking,.....I think that sums it up. And here we are again psyching ourselves up for one more round.
Gunnar started his 6th round of chemo on Feb. 21st. He got the two day regiment of carboplatin and thiotepa with a 25% reduction in the carboplatin. And of course with this round came the baths every four hours. I think it was 12 in the two days starting with when we got home from the doctors on Mon.the 21st and having his last bath on Wed.the 23rd. He got his stem cell transplant on Wednesday and that went very smooth. Dr. Patel started him on gCSF(neupagen) that day and decided to give it to him IV this time rather than the injections that he has always gotten. The doctor felt that this would be more beneficial to helping his marrow recover at this stage in the chemo. We thought that this was great because it is a lot less stressful for Gunnar and Irene and I. He does not like those injections. That night we started him on TPN running for 12 hours at night. On Friday we took him to the doctor to check his counts and so that they could change his needles. His port site looked a little irritated then but not too unusual. On Monday the 28th his counts showed that he needed platelets. On Wednesday, when we went in for counts and needle changes, his port site looked very red and I knew that Dr. Patel was concerned about how it looked even though he didn't make to big a deal out of it. He did however make sure to remind me about checking his temperature often after we got home. Gunnar was very neutrapenic at this point with his white cells at 100. His temp.did go up that afternoon and worried us but an hour later it was back down again so we didn't think too much about it. The IV neupagen speeds up metabolism and can cause a low grade fever so we thought that this could be what was causing it. Thursday morning about 4:00 am Gunnar was up and I took his temp.and it was 102. He was admitted to the hospital at 4:30 am.
Gunnar has a dual port and it was his lower one that was infected. Dr.Patel thought that more than likely there was an affect from the thiotepa on the skin at the site of his port and that the infection was a secondary result caused by who knows what. But when your that neutrapenic it's easy for an infection to set in. They started Gunnar on antibiotics as soon as he was admitted. Vancomyacin was the important one since it works on specific staph. and strep. organisms which more than likely were the cause of the infection. He received the antibiotics and TPN round the clock and on the second day in the hospital the doctor decided not to have the lower port accessed. The whole time Gunnar was in very good spirits other than being bored but he felt energetic and was acting fairly normal. This made things tough as far as having to keep him entertained. Thank goodness for "Blue's Clues" tapes. He did need to get blood and platelets on 2 occasions. We were in the hospital for 5 days. It may have been a longer stay but his counts had started to slowly climb while he was there and he wasn't running a fever after the 1st day so Dr.Patel decided to let us go home on Monday. However, Gunnar was to remain on the Vanco and TPN round the clock for the next 10 days. This was going to be a challenge but anything is better than having to live at the hospital.
Gunnar was very glad to be home but not so glad to be hooked up to his pack 24 hours a day. He got used to it fairly quickly and handled it pretty well. On Thursday the 9th he needed platelets. The whole time Gunnar was on the antibiotics and 24 hour TPN his appetite was almost nonexistent. The TPN did help to maintain his weight. On Wednesday the 15th of March we stopped the antibiotics and TPN but Dr. Patel kept him accessed still only on the top port. He would see him on Friday and if he still wasn't trying to eat anything then he would start him on the 12 hour TPN. Irene and I really wanted for Gunnar to be needle free for a while to give the skin around his port a chance to heal. He did start to have an appetite after he was off the TPN so on Friday the17th Dr.Patel flushed his line and de-accessed him. The site was looking good and it seemed as if the infection was gone. On Monday the 20th we went in to check counts and Dr.Patel's nurses tried to access his top port but it would not flush or get a blood draw. He sent Gunnar and I over to the hospital to see if they could flush his port by means of a blood thinning drug. The transplant nurse who works with Gunnar all the time has gotten very good at unclogging clogged ports. They do it fairly routinely and only rarely do they have one that they can't get to flush. Wouldn't you know it? Apparently Gunnar's was a severe clot and even though they did get the lower port to work Dr.Patel wasn't going to take a chance on leaving the top port this way. He felt that if we started another round of chemo just using the one port that when Gunnar got neutrapenic again the site could become infected where the clot was. Gunnar would have to have surgery to remove and replace his port. Needless to say, this was very upsetting to Irene and I. We knew he would do fine with the surgery but did he have to go through one more thing besides what he is already having to deal with.
For the next 10 days we would wait for the surgery. His platelets were not high enough to risk bleeding during surgery. They needed to be at least at 100,000 before he could have the surgery. On Thurs.March the 30th Gunnar had his new port placed. They used the same side(the left) but just shifted it over a bit so that it would be new skin over the port. The pre-op went smooth because they were able to use the lower line from his old port to sedate him before they started anything. It was only a day visit to the hospital so that worked out great too. The surgeon accessed both lines of his new port and left it that way so that if he was to need any meds or anything else then he wouldn't have to be stuck with a needle on his tender new site. Dr.Patel flushed his lines the next day and left him accessed. He scheduled tests for Monday the 3rd of April.
On Monday we went to the hospital for an MRI of his head, a renal function testGFR), and a hearing test. Irene and I are very thankful to say that the results were all good. There is still no reoccurrence of tumor, his kidney's are functioning normal, and his hearing is still well within the range for normal speech development. As usual before MRIs, we were very nervous that day in anticipation of the results. When we received the good news we jumped up and down and thanked God. Gunnar looked at us and thought we were nuts.
So that brings us to this point. Gunnar's doing great. The doctor took his needles out after the MRI and his surgery site has healed up nicely. Grant is 6 months old now and weighs 18 pounds. Let's just say he doesn't turn down any meals. He is an extremely silly baby and gets a kick out of whatever Gunnar is doing. He is fascinated with his older brother and Gunnar continues to be very affectionate with him.
We're starting the next round of chemo on Monday the 10th. We're praying that the weeks ahead will be far less eventful than the last 7 have been. Thanks to all who continue to pray for Gunnar's health. God bless you all.
Curt Harwerth
Update 02/20/00
Thanks,
Curt Harwerth
Update 01/05/00
Gunnar did remarkably well after his 4th round of chemo. He recovered without incident. He needed blood and platelets but other than that he made it through fairly easily. Dr. Patel reduced his doses somewhat for this round but he told us the other day that Gunnar has received the equivalent of 6 rounds in 4. Another thing that Dr. Patel did for this round was that he started Gunnar on TPN immediately after the chemo. Irene and I feel that this made a huge difference in his recovery. For one thing, he didn't lose any weight even though he went through some nausea and not eating great the week after. The TPN makes us feel a little more at ease because we know that he is getting nutrition and vitamins even when he is not that willing to eat very much.
Since he was feeling good for Christmas we had an enjoyable holiday. He isn't at the age that he knows about Santa or why he gets presents but he seemed to have fun because he was able to run around and do what he wanted. One thing he received was a "thinking chair" exactly like Steve's on Blue's Clues. It's really a neat little piece of furniture and Gunnar loves to sit on it. His grandfather bought him that and it made him very happy to see Gunnar go sit in it as soon as he saw it. But the best thing about Christmas for Irene and I was just seeing Gunnar acting like a normal 2 year old.
The following week we went for tests. He had a renal function test which showed that his kidneys are functioning normal. He also had an MRI of his brain and his pictures all look good. Thank God!! Irene and I were so thrilled about the news. This week he is going for a hearing test. Hopefully this will turn out okay.
Next week he will be starting consolidation. We have already been told by Dr. Patel about having to bathe Gunnar often for the 2 days of chemo. Because of the high dose of Thiotepa he will be getting and because it will be given into his port there can be complications. It can cause extreme cases of dermatitis because it exudes through the skin. We are not looking forward to having to worry about washing every inch of his skin 3 or 4 times a day. Oh well, we will deal with it like we have every thing else so far.
Grant is now 3 1/2 months old and is doing very well. Gunnar seems to be enjoying the role of big brother. He constantly goes up to Grant and gently touches his head and says "baby". He is so sweet. Gunnar's vocabulary is improving all the time and he is starting to put syllables together. His first complete sentence is "It's a clue." If you haven't already guessed this of course is a reference to his favorite show Blue's Clues.
We had a very uneventful and normal New Year and this was quite pleasant. We hope that your New Year was great and went without any glitches. We want to also thank you for creating the web page for Gunnar. It is great and I will do my best to keep it up.
Thanks again for everything!
Update 12/12/99
Hi Lisa,
Glad to hear all the positives about Michael. I know that it's been a while since Gunnar's last update but it wasn't to long after that that our second son Grant was born. Sep.21st to be exact. It was the same day that Gunnar was scheduled to have his stem cell harvest procedure. What a hectic day that was. Anyway, he has been through 3 more rounds of chemo since then. The second was very tough with 5 days worth and 4 of it with cisplatinum and 3 of the days with adreamyacin. The latter was very hard on his throat and led to him having to be put on TPN. However, they harvested more stem cells from him than they had ever gotten from anyone that they had done the procedure on. This means that he has been able to get stem cell rescue after every round of chemo instead of waiting till consolidation rounds. I really think that it has made a difference in the length of time he has needed to recover after each round. The first two rounds we were lucky and he didn't need to be hospitalized for any infections or complications. This really through Dr. Patel for a loop. The third round we weren't so lucky and he was hospitalized for five days because he became septic. He just completed the 4th round today. This time no cisplatinum but 3 days of adreamyacin. Were hoping no throat or mouth problems.
Gunnar has made it through all of this with incredible stamina. He has had 2 MRIs and both were clear and 3 spinal taps and his fluid has been clear. Also all his kidney function, cardiogram, and hearing tests have come out fine. We can't expect much more out of a 2 year old who doesn't really know what is going on. His attitude towards everything has been incredible. On the weeks that he has had to be hooked up to fluids or TPN and he has his large pack he is a little depressed if we don't walk around with him. But on the times that he doesn't need the pack (or if he is only on TPN at night) he acts like a normal 2 year old. He runs around, plays with toys, watches his favorite shows or tapes(Blue's Clues, Tele Tubbies, Veggie Tales) and eats his favorite foods which is mostly cheese.
Well that about sums it up for the last few months. Oh yeah, he also seems to like his baby brother. Irene and I have been lucky enough to be able to stay out of work for this whole time and we have no idea when either of us will be going back. Our employers have been very supportive.
We hope everyone has a great Christmas! Thanks. Curt Harwerth
Update 9/18/99
Hi Lisa, Thanks for your e-mail. We will be happy to provide you with some information regarding Gunnar's condition. We first started noticing symptoms around July 1st. Gunnar started throwing up occassionally in the mornings. He also showed a general lethargy which led to a change in his behavioral patterns. For example he began to be very tentative about doing any of his normal physical activites. He was always a very active child who had been walking since the age of 8 1/2 months. These symptoms made it easy to see that something was not right. During this month we took Gunnar to see his pediatrician around 5 different times. We attributed these symptoms to his teething (back molars), a diagnosed double ear infection, and a stomach virus.
After a period of time my husband and I felt that something beyond these common illnesses were causing these problems. His pediatrician ordered blood a test which all came back negative and then the following week he sent us to a neurologist. That was Monday August 16. After discussing his symtoms with the neurologist he felt like they were being caused by pressure on the brain. He ordered an MRI that same day and a 23 hour observation in the hospital. That evening he broke the news to us that Gunnar had a sizeable tumor in the left frontal area of his brain. It was located in one of his fluid ventricles. Later that evening we met with the neurosurgeon and discussed our options and he suggested immediate surgery.
The following evening they operated and removed the entire tumor. He was in intensive care for the next ten days. He had a subdural shunt placed in his head as well. His pathology slides were sent to Jons Hopkins Hospital where it took 10 days to get the results of his pathology. This is when we learned that he had an Atypical Teratoid/Rhabdoid tumor. We have been home from the hospital for two weeks now(since Sep.3rd). At the time when he had the portacath procedure(Sep.1st) he also had a spinal tap and his first intrathecal dose of chemo.On Tues.,Sep.7th he started his first 3 day regiment of chemo.So far he has handled the chemo. fairly well.Of course his blood counts have gone way down this week and it has zapped his energy but he has hung in there.He received blood and platelets yesterday(Sep.18th). He is feeling much better today.
Late next week is when they are planning to harvest his stem cells for use later during consolidation. His oncologists name is Mahendra Patel. His phone # is 210-614-4011, fax # -210-614-3201, and email is patelmahendra@netscape.net . He would like to speak with the doctors that are treating the patients that seem to be winnning the battle. Would you be able to provide us with there names and numbers. If so please email them to us as soon as possible. We as well as Dr. Patel would really appreciate this information. If there is any other information that we can provide you with please let us know. --------------------