Last summer, our son Erik was a typical 7 y.o. just finishing up his first season of Little League. He and our other 2 children usually accompany us to softball, but on August 4, 1997, they all chose to stay with a friend and play. We received a page around 11:00 p.m.: Erik was throwing up, but it was probably just the flu. Let him stay the night and pick the kids up in the morning. By the morning of the 5th, he didn't seem any better, so I took him to the pediatrician's office.
Dr. Carmen wanted to rule out a severe stomach flu or viral meningitis, so I drove Erik to the hospital for a spinal tap. We got to the hospital at 10:10. By then, he was complaining of a severe headache and was becoming lethargic. He didn't budge when they did the spinal taps. Both of them were completely bloody. The staff asked if he had suffered a head trauma recently. I told them he had been hit in the head with a baseball bat. I knew he had been hit in the leg, but my brain said head. So they did a CT scan. Now I was getting worried. They sent us to ICU to await the CT results. Then our worst nightmare started. A patient rep was waiting for me in ICU. They already had the results. Rare disorder. Could die. Brain surgery. NOW. That's all I heard. Before I knew it I was saying goodbye as he was wheeled into surgery and praying that it wasn't our last goodbye.
In the days to come, we were told that Erik had a birth defect called an arteriovenous malformation (AVM), in which the arteries and veins in his brain did not form correctly, and therefore the blood flow was interrupted. The initial prognosis was not good, as the AVM was much larger than those which are considered treatable (5 cm vs. 3 cm) and the shape was irregular ("C" shaped, not circular), with numerous offshoots. They say another hour or so and Erik would not have survived. While grateful that he did, we still weren't sure if he would see his eighth birthday in September.
Erik recovered from the initial hemorrhage extremely well, but local specialists still were not very optimistic on treating the AVM or for his future quality of life. Until something could be done, he was required to be very calm and not allowed to do anything physical. While we were thrilled our son survived, we knew how hard it was for this athletic, young boy to sit home 24 hours a day, seven days a week and do nothing. We also knew it was very difficult on the family fearing that he would re-bleed at any time. Any severe headache meant a return trip to the hospital and another CT to check for a bleed. We've done that 5 or 6 times since August.
We got on-line and started researching AVMs and the numerous doctors and hospitals that treat them and talking to people with the same disease to find a cure. After submitting Erik's case to nearly 100 facilities and interviewing a few of them in person, we decided on the staff at Massachusetts General Hospital in Boston. We visited in November after all the necessary tests were run and finally received some good news. They felt a technology called the Proton Beam could cure Erik's AVM. It administers a massive dose of radiation that hopefully will shrivel the AVM over the next few years until it has disappeared. They felt that any possible side effects could be treated or rehabilitated over time.
The Proton Beam's waiting list is long. Erik didn't received the treatment until February, 1998, but they had to do a smaller dose than originally thought because the possibility for negative side effects became too high with higher doses. The bead implementation (markers to measure the AVM precisely) was a little difficult and the anesthesia didn't go over well, as usual, but for the most part, the procedure went well. It was a long 10 days. Unfortunately, Erik is already suffering more severe headaches, more frequently. Worst of all, because the treatment is such a slow process, we won't know if any good portions of his brain were damaged from the treatment for quite some time.
Erik was allowed to return to school the week before Thanksgiving after we met with the staff of his school and educated them on his disorder and the actions that would be required in the event of a severe headache (the first indicator if he's re-bleeding). He has missed a lot of school in the interim, either from testing or the severe headaches he must deal with, but all in all, he's doing fairly well. All his schoolmates are aware of his AVM and are always great about emailing him when he is off. Erik is very knowledgeable about AVMs and has been known to tell a new ER doctor or a paramedic what tests needed to be run.
We are surviving as best as we can. We continually look for information about this disorder and for others who have, or are, going through the same thing. We know in our hearts that Erik is going to beat this thing and are eternally grateful to all those who have helped us through this horrible time.
Update 30 Sep 98
Erik had his first follow-up MRI at the end of August, 1998, three days before we moved. The doctor's called us immediately (knowing we were going to be out of contact for a while and being the great people we came to know very well of the past year); the MRI showed "complete and near resolution" of the AVM! Our pediatrician never anticipated such progress and has sent the MRI to Boston to see if the staff there wants the angiogram done now, or wait for the next MRI. We have not heard from them yet, but then again we were out of contact with everyone for about two weeks during the move.
Update 23 Jun 1999
The review of Erik's 1 yr. MRI was great! The brain swelling that appeared on his 6 mo. films was gone and there is NO sign of the AVM!!! There appears to be some minor damage to the right occipital horn from the proton beam, but we have been assured that this is of no consequence. Erik's docs aren't ready to give him the 100% cured label, though. They want to wait until February to do the angiogram to verify that the AVM is indeed completely gone. Erik doesn't mind putting that off at all.
The more we read about this disease and the more we talk to others in Erik's situation, the luckier we all feel. Erik's guardian angels have worked overtime most of his life, but especially with the AVM. The only side effects from the bleed and the proton beam are that his left eye is slightly droopy (it's worse when he is tired), he has a scar from the ICP shunt (a battle wound as Erik calls it) and his emotions are higher than they used to be. I really don't know that his emotions are necessarily a side effect, but it's a major change in him. We thank God daily that Erik has not had to endure permanent side effects and that he continues to enjoy a very high quality of life. He's even able to compete in one of his favorite sports -- baseball. He assures us that soon he will be playing football too (docs said he has to wait until after the angio to do that)!
Erik and I will be featured in a newspaper article this fall about what roles the Internet played in our lives during this medical crisis. This site will be mentioned as one of our sources of comfort. We could not have gotten through the past 2 years without support from the people at this site and others like it! Erik reads many of the narratives and much of the daily correspondence I receive about AVMs (I average around 30 a day now). It has helped him to realize that he is not a freak and given him the confidence that he will overcome this. It has also given us a venue to help others who are new to AVMs. We enjoy that the most now, as we remember all to well every detail of August 5, 1997, and how much help we needed at the time.
Update 13 Mar 2000
Erik had his angiogram on Friday, March 10th, but the results were not what we expected at all. Not only is the AVM still there, but they have also discovered an aneurysm. We have no idea what this means and are waiting for the docs in Boston to review everything. It just seems like we are back to square one again. Erik handled the news about the AVM much better than his father and I did. We haven't the heart to tell him about the aneurysm, especially since we don't know too much. If there are any AVM patients with aneurysms within the AVM, we would greatly appreciate talking to them. Thanks for listening.
Update 29 Apr 2000
After many delays and much confusion on Tuesday, Erik finally got in for his embolization at around 3:00 in the afternoon. The "gluing" went rather well, completely filling the aneurysm, but a little spilled into the vein. Some of that gave Erik a bonus as it closed one of the larger portions of the AVM that still remained, but they were still concerned & watched the area very carefully. All in all, the docs were very happy with the procedure.
Wednesday was a rollercoaster ride, to say the least. Erik's left side did not work at all, including his face. Testing showed that he had suffered a minor stroke sometime through the night. More testing and input from 5 different teams of docs led them to believe that this was a temporary condition. The docs feel with some intensive therapy, Erik should regain at least 90% of his motor skills.
Thursday and Friday brought only good news as Erik started to show movement and muscle control. His leg is coming along very well and he has more control in his face. His left arm is still non-functional, which caused some concern for the docs, but this morning he twitched his fingers!
Erik's spirits through all this have been wonderful. As he starts trying more things, and realizes the limits of his left side, he gets scared (who wouldn't) on occasion, but for the most part he likes impressing the docs with his improvements and showing them his new "two-sided" smile! He's definitely a trooper.
The months to come will include some very intensive physical, occupational and speech therapy, but he is confident that he'll be back stronger than ever. We can't begin to tell you how much your prayers and well wishes have meant to his recovery and to our family's ability to remain strong during this time. We hope to be home by Tuesday or Wednesday next week to start his road to recovery.
Thanks for all your support!
Update 15 May 2000
Erik's leg is coming along WONDERFULLY! He can get along without the cane for short periods and only needs the wheelchair when we're out for hours. His face is progressing quite well, too, as it only shows signs of deficit when he is tired. He seems to be getting control of his emotions too (they were pretty extreme for a few weeks). His left arm is another thing. Initially, he could make a fist and hold onto your hand. That ability went away in the hospital, but they think that's due to more swelling. Right before we left MGH, he was able to move his elbow, but not able to control it - it just flails around and looks rather comical (especially because he giggles when he moves it like that). We've been into OT once and he seemed to get good control on the elbow movement, although still nothing with the fingers or wrist. He goes in next Monday for a splint for his hand (to straighten it out as lack of use has caused it to curl) and something for his shoulder (so it doesn't "fall" out of the socket).
All in all, his spirits are good and he seems to be concentrating only on the good things. He's bummed about not being able to play baseball, but he is going to be the official score keeper and hopes to be coaching first base by the end of this month (along with running). He sets his goals, I make sure they're not unachievable, then we work on them.
As for the rest of the family, we're doing ok. The kids are still adjusting to the fact that Erik requires more of my time, so they have to help out a little more around the house. My work is being EXTREMELY flexible and allowing me to work around Erik's therapy schedules. Good thing, because all the extra medical costs are adding up already. My family and our best friends are also helping by staying with Erik when I need to go out or to work if Scott is out of town.
Update 3 Jun 2000
Erik just celebrated his first full month of being home and what a month it's been. He came home in a wheel chair, with a droopy mouth and absolutely no use of his left hand. His leg and face started coming around first. He's basically using his cane only when he has to walk medium distances and we take the wheelchair when it's going to be a super long trip. He even runs around the yard when we're outside with the rest of the family! The only problem he seems to have with his leg is that his knee locks (hyperextends) when he walks. They are going to give therapy another few weeks before they put him in braces. But, they are quite confident he will recover. His arm had been very slow reacting. Then, 2 wks ago he was able to squeeze his left hand (even though he couldn't open it). It just keeps getting better every day now! Yesterday he was able to hold a milk carton with his left hand so he could open it with his right! Once in a while he can get something out of the cupboard with his left hand or open the refrigerator! And his speech therapist said 2 more weeks and he'll be done!
We are a far cry from where we were a month ago & the grace of God and the tremendous outpouring of good thoughts and prayers have been wonderful! Erik swung a bat on Thursday and has started throwing a ball again. His mental facilities are completely in tact and the only change he's had in his personality is that he giggles a LOT more and doesn't seem to stop smiling. If any body asks, he always says he's a LUCKY kid, never that he's had it rough!
Well, that's it for this update. May you and yours be as blessed as Erik!
Update 3 Apr 2001
I thought I would update this list one more time before I remove my name from it. Unfortunately, my husband was downsized, so we're switching roles. I'll be working a lot more hours and just haven't been able to find the time to read and/or respond to the posts.
Erik has done quite well, although there always seem to be bumps in the round that come up. We thought we had addressed all the issues related to his stroke, but a neural exam for the schools showed some sight problems, which an ophthalmologist confirmed. He has lost the vision in the lower left quadrant of his field of vision. While this wasn't unforeseen, we kind of forgot to check for it. Felt pretty stupid missing that one. Erik's adjusted quite well, although reading can be difficult at times (finding the next line can be tricky).
Then he had the freaky headache that "shot" through his head. Another emergency visit, but they were more alarmed than usual. So he had a sleep-deprived EEG and another MRI. Our new doc freaked a little over the MRI and the EEG. Seems the glue they used for the aneurysm looks weird on MRIs and they thought the aneurysm was ready to blow. She scheduled the angiogram before calling us with the results. First time that's happened. Then she called Mass Gen'l and they explained the glue characteristics; they weren't too worried about it. So she called us back and said we should postpone any action until Mass Gen'l read the films. They did and were thrilled about them. The aneurysm is still filled and the AVM is not distinctive on the MRI. We'll go for hopefully our last angiogram next April.
Next bump: the EEG also showed some abnormalities. This time Erik had to do a more intensive EEG (I forget the exact name). We thought it would be just like the last one, just longer. Boy were we wrong. The lines were shoved into his head, then glued with an ether-base product. Not only was it painful, but Erik spent the next 22 hours throwing up (his reaction to ether). First time they had had a patient react that way, but then Erik has always loved being first.
His arm therapy has also hit a bump. While his progress is not regressing, it's not improving, either. So his therapist is looking into a restrictive form of therapy in which his good arm would be immobilized, thereby forcing him to use his left arm. She's still doing some research, but hopes to have him active in the training by month's end.
Other than his glitches, Erik is doing WONDERFULLY! He continues to be an A-B student, even given all the time he misses for therapy and checkups, and he has made a ton of new friends this year. His biggest accomplishment, starts this week: he's back on the baseball team. We all debated and weighed all the advantages and disadvantages, then decided this was best for him and his attitude. His dad and I are the coaches, so we (and the baseball league) are more at ease that we can control the situation. He's playing a little modified in that he wears a batting helmet while playing defense, too, and that he's only allowed to play in positions on the right side of the field, to minimize his vision deficiencies.
He has come so far and still has bumps in the road ahead, but continues to have the greatest attitude. He's even started a drive to save can tabs for the Ronald McDonald House to help families reduce the cost to stay there. So far this school year, he has turned in over 35 coffee cans full! He's quite a card, too and cracks us all up with his favorite saying, "I'm the luckiest unlucky kid on earth!"
We can't thank these sites enough for all the friends we have met over the years, the real-life advice we have gotten and the tremendous support that held us together. We'll still have this email address, and hope someday to get back to being able to read and respond to all the posts. We hope that each and every one of you finds the guidance and strength you need and the cure we all pray for. We thank you from the bottom of our hearts.
A special thanks to those who have gone above and beyond: Dorothy, Joann, Bill and Ron! Our lives have been blessed by these angels on earth!
Author no longer active March 18,2011
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