History

Saturday, January 17, 2009 1:49 AM CST

What I remember about this night 3 years ago is saying good-bye to my only child. I kissed him on the cheek and told him, as he slept in a merciful morphine coma, "You can go. I will find a way to live without you."

I still haven't figured out how to do that yet but I am getting better at faking it.

Thursday, January 17, 2008 2:40 AM CST

Two years? Really? Still feeling the sting as though it happened yesterday. Still wonder why my incredible son is gone when he had so much to offer to the world. We miss Kyle every minute, every day. It doesn't 'come in waves', it is all the time. So we pretend. We pretend that we can smile, that life is normal, that we can function, that we find something funny--we will fake it until we make it I guess. What else is there to do? If anyone is still reading this site, please write a note on our guestbook. I still look at it every single day.

And by the way, we still love Megan very much and she is in our lives every day and for her and all of the love she brings to us, we are grateful. She is happier now, she has someone new and he is amazing - naturally!

Thursday, January 18, 2007 2:53 AM CST

I am writing this after midnight but today was the awful "anniversary" of Kyle's death. It was a difficult day ending an impossible year. We are not less sad over Kyle's passing and wish we could fast-forward our lives.

I still dream at night that Kyle is dying and I can't stop it, wake to realize that my nightmare is my reality. I don't understand what anyone can "learn" from losing someone so wonderful.

I am trying to be kind to everyone and more thoughtful in my actions. My wish is for Kyle to look at me from wherever he is and elbow the guy next to him, point at me and say with pride, "That's MY mom!"

I still want him back, whole & the way he was. I wonder if I will ever "accept" that he is gone from this earth?

Wednesday, October 18, 2006 2:46 AM CDT

We have just passed the 9-month mark since we lost Kyle. The same amount of time it takes to 'grow' a baby. It has both drug on and passed in a daze. We want to mention the friend Kyle met in Houston, a "brain tumor buddy", over a year ago, Logan Seifert. Logan joined Kyle in heaven recently and we are quite sure they, along with Kyle's friend of many many years Eric Fergen (who drowned on July 4 of this year), are playing some serious pranks on the Other Side!

Friday, September 1, 2006 2:53 AM CDT

It would have been Kyle's 23rd birthday today. I remember 17 hours of labor on Labor Day, the nurses thought that was pretty funny but nothing that night seemed funny to me. It still seems like his birthday is today but he is not here to eat cake. Or make jokes about cake. Or go to Chelan and have a second birthday party there with Frantastic cake.

I wonder many times, did he really get sick and die? Our own boy? Intellectually I know it happened but emotionally it is another matter altogether.

Happy Birthday Kyle, we sure miss you.

Saturday, July 8, 2006 3:00 AM CDT

We have learned that a tragic accident took the young life of one of Kyle's best friends from grade school through college, Eric Fergen. He leaves behind his twin brother, Matt, and another brother Brett, his beautiful girlfriend of many years Jessica, and a loving set of broken-hearted parents. One minute he was swimming and the next he was dead and we know in our hearts that as soon as he passed Kyle was there to meet him and share the wonderful secrets that we can only know after we are gone from here. We will miss Eric so much, we have loved him for many years and our hearts ache for his family, from the loss of Eric, and from losing Kyle. We miss him every day.

Sunday, April 23, 2006 3:59 PM CDT

Now just over 3 months since Kyle's death I wonder if anyone still reads my words. Do others think of Kyle every day? Every hour? Every minute? Weekly? Monthly? Is he gone but not forgotten, or just gone? I don't know. I am learning about grief and loss in such a personal way, something I never wanted to know just as you, reading this, do not want to know. I wish I could understand why he is gone. I can't even accept it yet. Mother's Day is next month and already the ads are screaming about what to buy mom for Mother's Day and I think, 'I'm not anyone's mother anymore!' How did this happen? How did my wonderful, happy, healthy boy get sick and die? Will I ever feel joy again?

I can't count the times people have said to me, "I can't imagine what you are going through." But I know they can. They don't live it, but everyone can feel the horror for just a split second - at least all parents can. I had a nightmare recently that Kyle was in the hospital, dying, and I couldn't stop it. I woke gasping for air and making a terrible sound in my throat and throwing covers off and finally woke up, and felt just a split second of relief--just an instant. Then I realized my life actually is my nightmare...

Wednesday, January 18, 2006 4:34 AM CST

Kyle lost the fierce battle he has been fighting at 2:20 Tuesday morning, January 17. The end came very quickly and he suffered terribly in the last weeks, and especially the last days. This whole odessey seems terribly unfair and we are grief-stricken in a way words cannot possibly describe. He was our only child and such a wonderful human being, with so much to offer the world. We know he will never be forgotten and we will miss him every day for the rest of our lives. Megan is heart-broken as well and cannot stop crying--of course none of us can. Thanks to all that have prayed for our family.

Tuesday, January 3, 2006 3:00 AM CST

Not a very happy new year for us. If Kyle's doctors are to be believed, this is the year our only child will die. And indeed, when looking at the spreading growth of his MRI it seems likely. We walk around in a daze of care-giving and fervently cherishing each moment, forever locking every nuance of Kyle into our hearts. We frantically search for something new and different to save his life and make him better. He is now suffering a great deal. He has no control over his right side and can only smile with half of his face. He can take a very few steps, and this he can accomplish only from sheer willpower and intestinal fortitude. He can no longer work his right hand and arm at all. His speech is garbled, almost impossible to understand and he is now having trouble with articulating words. This from our once so eloquent son that he was consistently chosen to be the speaker for every group he was ever involved with.

And yet he says he is going to beat this thing. We are beginning Etoposide, a newer chemotherapy on a metronomic dose schedule and soon will begin Tarceva, a small molecule chemotherapy that has worked for some tumor regrowth victims in the past. He cannot tolerate much because he is already so sick from his tumor, which gives him nausea, sleeplessness, fatigue, headaches, double vision, and a host of other troubles.

He still jokes with us and when he can't verbalize a joke he just makes funny faces. He and Megan are unbelievably tender with one another. Such true love is rare and they so deserve to have their lives together. We refuse to give up and agonize at his suffering, always wanting something better for him.

Please join us in praying for Kyle's recovery!

Thursday, December 8, 2005 1:39 AM CST

We had another trip to the ER, this time the paramedics came after Kyle had his first ever grand mal seizure. It was scary and seemed to last forever. Fortunately I was right with him when it happened and he did not fall. Megan was there too and she was amazingly calm.

Something, however, caused bleeding in his brain, either the seizure or the tumor - we don't know which.

The evil, ugly tumor is bigger. This was expected because we knew it was growing. During Kyle's hospital stay he had IV Dilantin and it got through his vein and under his skin so now he cannot use his right hand at all, and his right side is generally weaker than it was and not working even in his face. The doctor thinks this is from the seizure, or from swelling, because he is not as good as he was just days ago--before the seizure.

Fortunately the bleeding in his brain was confined to the tumor and not much blood. We had to keep him from throwing up because that can cause increased intracranial pressure--something we do not want because of his hemorrhage risk. Since he kept having breakthrough nausea we had to resort to putting him to sleep with Valium for many days to accomplish this--Carboplatin is the chemo that keeps on giving; making you sick when you get it and again when it hits the liver. Kyle never, ever complains about any of this.

We are hoping this chemo gives equally to the tumor and kills it, and shrinks it so Kyle can get well. He was slightly better this evening and the first thing he did was FORCE his right leg to work and took a few steps with his cane. Then he grinned with one-half of his face and told me he was going to live for a long time. It's hard not to believe him!

Saturday, December 3, 2005 2:45 AM CST

We took Kyle to New York for a special radiosurgery that we thought had an excellent chance of stopping the new tumor growth. When we arrived and had his final planning MRI and CT scans they found that his tumor had grown again in the 2 weeks it took us to get there, and is now wrapped around his optic chiasm. This meant that if he received any more radiation to that area it was a virtual certainty that he would be blind within a year. We were in New York for nearly 2 weeks anyway because we couldn't get a flight home because of the Thanksgiving holiday. New York is a magical city at this time of year and we enjoyed it as best we could. Kyle gamely toured around with us, in his wheelchair, and did what he could. It was a very distressing trip overall because we were not able to take the action we had planned.

So, we decided to come home and give chemo a try first. If we can get his tumor to shrink even a little bit we have a better chance at specialized radiosurgery. Open brain surgery is OUT, as stated by 3 of the top neurosurgeons in the world--all agreed he would die if they try. We are not going back to the 24/7 infusions because they never did shrink the tumor and were so unbearable to go through.

There is about a 20 to 30% chance that chemo will shrink Kyle's tumor and we are banking on the prayers and some good luck. Kyle is still working hard at learning to read again, walk again, and excercises his legs and arms as much as he can. He had his first IV dose of Carboplatin last night and seems to be doing well with it so far.

We are keeping our fingers crossed and I will post again when we know more. We won't know if this works for 4 to 6 weeks. The good news, if there is any, is that the part of his tumor that received gamma knife radiation is still quite dead. But the new "finger" of growth is pointed right at his brain stem, a critical area to maintain life.

Sunday, November 6, 2005 3:05 AM CST

Last week's extra tests show positive signs that Kyle's tumor has grown about a centimeter in 3 weeks, aimed toward the brain stem. It is likely this is what is causing his problems with walking and his right side coordination. Of course we are all very upset but trying to remain positive as we look into new treatments. The doctors are not giving us much hope, but we've been there before and he's still here so we are not by any means giving up.

We are meeting with a world famous brain surgeon at Harborview Hospital next Wednesday. It seems like an eternity to wait and in the interim Kyle does not feel well, sleeps a great deal of the day and night and is having headaches in addition to the rest of his many symptoms. It is hard on him to be dependent on others for basic needs and he wants very much to get well. We are also in touch with many other doctors and clinical trials around the country. Appreciate any prayers or positive energy you can send our way!

Monday, October 31, 2005 1:59 PM CST

We brought Kyle home from the hospital inpatient rehab on Friday night. We spent the weekend quietly adjusting to his getting around the house without a full time staff to assist him. This was difficult to say the least.

Today (Halloween) Kyle goes for his PET and MR Spectrocopy tests to look at with the MRI done last Thursday, so we can try to discern what the new "area of concern" is, exactly. When a person has a brain tumor the words "area of concern" are not easy to hear.

We will find out the results on Wednesday. We are hopeful that it is not tumor regrowth, but making a plan in case that is what is happening. Kyle is very tired all the time from the adjustment to medications and sleeps a great deal.

Friday, October 7, 2005 3:20 PM CDT

We took Kyle into ER on Sunday, October 2 and he was admitted into the hospital. He can no longer walk and we are very frustrated because no one can tell us why. Their best guess is that it must be radiation necrosis but the scans show that his tumor is not growing and that there is no radiation necrosis. We are treating him for necrosis because it is safe to do so.

He is a little better now than when we brought him here but the doctors think he needs rehab in order to safely walk again and regain his balance. Our medical insurer, Molina, refuses to cover this as well. We are fighting every inch of the way to get Kyle the care he needs. At least it is most likely not tumor progression.

He will work hard to get well again. We will be there along with Megan, every step of the way.

Wednesday, September 21, 2005 2:17 AM CDT

Kyle did get to celebrate his birthday by wading into a swimming pool on a glorious summer day.

Today he had another MRI that shows NO tumor progression, we are overjoyed at this news!

Kyle still has severe edema (swelling) in his brain that is causing a host of problems including confusion, balance and coordination difficulties, numbness and tingling on his right side, vision disturbances and the inability to read. We have him on a very high dose of steroids but to no avail. We don't know how we are going to get the swelling down but we are not going to give up until it goes away entirely and he can get off steroids, which are making his joints so sore he can hardly walk at times. So, he is still going through very trying times.

Still, the good news is very, very good!

Tuesday, August 23, 2005 10:23 PM CDT

We got the Final Word on Kyle's scans from the 16th and 19th, at last. Houston, we have a go! Kyle received the official permission from his doctors in Texas to go off of IV treatments and onto pill form. He may realize his dream of swimming on his 22nd birthday.

Kyle's tumor has not gotten smaller but for such an aggressive form of cancer stable is very good. His PET scan, coupled with the MR Spectroscopy, shows that his tumor is dead. Yes, DEAD!

The other good news is that his vision problems may correct as the edema goes down in his brain. This may not happen right away, or at all, but we are hopeful. At Kyle's age, the brain is pretty elastic so to speak. We are concentrating our hopes and prayers now on his ability to tolerate the pills (which should be doable), that they work to keep the tumor dead--also a highly likely probability, and that his vision is restored now that he won't be infusing an irritant any more.

Thank you all and please keep praying for Kyle.

Saturday, July 23, 2005 12:10 AM CDT

At last we received the "final" report of Kyle's July MRI. This has been one long week. The radiologists report came yesterday and said the tumor is stable with no growth noted. Whew.

There is more edema--swelling--which is not good but does explain Kyle's symptoms of not being able to read most of the time and the blind spot he has in his right periphery. The swelling should go down because it is most likely from gamma knife surgery last October.

He suffers from a condition called Aphasia without Alexia, which means he can't decipher written words but he can write perfectly and can speak and understand words perfectly. It is very rare and when it does happen it is most often to the elderly - so the therapists are excited to work with someone so young and otherwise healthy.

They also think all of his vision problems may resolve spontaneously when the swelling goes away.

The plan for his experimental chemo infusions remains the same. If we can get him through the next one month with no changes, no growth or shrinkage, they will take him off of the infusion pump and put him on capsules. We are counting the days, the hours, and the seconds to that moment. His dream is to be able to jump into a pool on his 22nd birthday, on September 1st.

We ask for your continuing prayers/good thoughts/energy for this next month. A special push for stable tumor size, a "clear" PET Scan next month, for the swelling in his brain to reduce and go away, and for his vision to return to normal--that is our prayer and in that order.

Thank you for caring,
Sheryl

Friday, June 17, 2005 11:20 PM CDT

We are happy after today's doctor appointment. The preliminary news is good, that Kyle's tumor is unchanged, i.e., stable. For the type of tumor he has, a GBM 4, no growth or disease progression at this 6 month mark is
huge. Kyle's doctor seems pretty surprised and the medical team at the cancer center is beginning to look more seriously at Kyle's experimental chemo as a new hope for brain cancer patients. One doctors here has begun to refer patients to the Burzynski Clinic, having seen the success of Kyle and I think some others.

Kyle continues to have unexplainable vision disturbances, and he will undergo a series of tests with different specialists in the upcoming weeks, along with trying some new medication doses to see if it might be related to edema. We are hopeful that his reading ability will return in the next few days with the temporary increase in steroids (to a very high dose). That will demonstrate that it is temporary--this vision disturbance--and would be very good news for Kyle.

We are waiting to receive the final stamp of approval from the doctors in Houston. Hopefully, this latest news puts us at only 2 months to go of infusions, then he can progress to oral medication and it should keep Kyle's tumor in check indefinitely, because it will be dead.

Please continue your thoughts, energy, and prayers for Kyle. We all believe in the power of collective prayers and healing. He is beating unbearable odds right now. We know it has been a long pull and we have asked over and over for more prayers, and we continue to ask for more of the same--it's working so please don't stop.

Wednesday, May 25, 2005 11:28 AM CDT

STABLE. That is a very good word with respect to a brain tumor, and it is what we heard after this week's MRI. Kyle's tumor has not grown and we are all very happy about this. The swelling in his brain is reduced by one-half. After an extremely difficult month he is improving because the swelling seems to be under control, i.e., he feels better, has better balance, etc. The tentative plan is to get him off infusions and on oral medication as early as August and we are crossing all fingers and toes that everything goes well enough--that the tumor remains stable, neither shrinking or growing--for this to happen. We appreciate every single one of the entries in our GUEST BOOK, we read them all, and we appreciate all of your contributions and prayers too. Thank you!

Thursday, April 21, 2005 1:36 AM CDT

We received Most Excellent news today. Kyle's tumor is SMALLER. His MRI results were positive in every way. This is a good indicator that the experimental therapy is working. We appreciate all the prayers and support.

If you happen to see a mom walking about one foot off the ground and grinning stupidly, it's me!

Saturday, February 19, 2005 11:30 AM CST

I've been waiting for the "official" and final word to come in on the incredible news we had from Kyle's most recent test, an MR Spectroscopy--which is more definitive for that area of concern around the periphery of his tumor and the news was...it is NOT tumor cells! It is regenerating normal brain tissue cells. Don't ask me how they tell this because I don't understand this one but the doctor is pretty happy. There is one tiny area they are still going to watch but Kyle's tumor seems to be dying. This is partly from the gamma knife surgery and partly from his experimental chemotherapy treatments. They are working and that is HUGE news.

We have a long way to go so please keep praying/sending good thoughts for Kyle. Our goal is for him to be cancer free by his 22nd birthday, September first. We dream of having his Hickman Line pulled from his chest to celebrate his birthday.

We have been basically walking on air for the past couple of days. Thank you all for your support,
Sheryl

Thursday, January 6, 2005 1:40 PM CST

Look for Journal updates around February 9th, when Kyle will have his next scans.
~Charvat Family

Thursday, January 6, 2005 1:30 PM CST

We have finally received the results of Kyle's PET Scan and his MRI and the news is good! The MRI shows the tumor to be larger but it is mostly cystic in nature and cystic is not cancer so that is good. The PET Scan shows less activity than 4 weeks ago--also very good.

It looks like the experimental therapy Kyle is receiving is working! We are thrilled at the prospect because in all the cases we know of, if it is going to work it works all the way--meaning Kyle can be tumor-free at some future point.

To anyone that has contributed to this expensive treatment, thank you, and to those that keep on giving for our continuing expenses, thank you. For your prayers, THANK YOU!

Wristbands are being sold to help pay for Kyle's treatments. Anyone wanting more information about this can contact CJ Bowles, email: cjbowles@u.washington.edu
or by phone, 425 941 8760

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