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Wednesday, March 12, 2008 1:17 AM CDT
Thank you to everyone for the truly overwhelming response for prayers and concern. This brings our family tremendous comfort.
We are spending our second night at Children's. After the rough night Sunday, E's Dr and nurses told us to bring E in so they could get the seizures under control while preparing to have hospice come to our home. I will not go into details (too hard) but Ethan's condition went from bad to worse so fast that it soon was even farther our of our control than ever thought imagineable. This morning, was simply the worse day of our lives to date. Seizures took over and we could not control for 3 hours. We are thankful we are here at Children's for we know he requires additional help right now.We have a wonderful family of Dr.,nurses, childlife and social workers at Children's. Ethan feels their love and concern and as always, he is being welled care for by all.
We know our time is very limited now. Ethan rest peacefully tonight but hasnt spoken a word in two days nor has he woken up. Our family cherish's every single second we have with Ethan and really struggles to know how we will do without him. All aziwe want is his freedom from pain and knowing he lays peacefully in God's arms.
Please continue to hold Ethan close in your prayers. He is an amazing child and someday, we will all understand God's plan.
All our love,
The Grimm Family
Tracy, Marcy, Asia and Ethan
Monday, March 10, 2008 3:23 AM CDT
The past couple of weeks have been a bit rough. The good days were only sprinkled throughout and those dreadful days simply seem to linger. Our hearts are so heavy, seeing our brave little warrior just slipping away from us.
Today has been especially rough. Ethan could not get out of bed due to his head hurting so much. He sleep all day, without eating, even passing up Christy Crème chocolate malt. Mom insisted he at least take a bite or two of one of his favorite meals – pasta and bread. We moved Ethan from his room to the couch where we fed him a few bites. Ethan wouldn’t eat but a few, but he gave it an attempt. For all of those who visited Ethan over the past couple of months, you know how much food has comforted him. It brought his family joy to see him light up with excitement when someone brought over treats or dinner. On the good days, a chance to go out to lunch or dinner somewhere was better than going to Disney World. Ethan so loved his food!
Ethan began to get a bit irritated with mom or dad, the cat and the dog’s face, all trying to creep into a twin bed with him! Since Ethan seems to have an extremely bad day, we moved him to our room where it is easier to keep a close watch over him. Tracy was kind and offered to take the couch so not to crowd E too much but that changed only after a couple hours of sleep. Ethan had a bad seizure, accompanied by vomiting in his sleep. Thank God, that Tracy and I are light sleepers or who knows what could have happened. Afterwards, it appears that Ethan may have lost movement on his right side (the largest tumor is located on the front, left lobe) The left side of the brain controls the right side, and vise versa. Ethan’s right hand and arm does not move and is becoming very cold. Ethan did not speak to us after the seizure. We are afraid he may have lost his speech as well. Tomorrow, we will fully assess the effects.
I sit here updating Ethan’s site while he snuggles with his Dad. For it is now moms turn to befriend the couch. I pray the two of them, along with Asia, all have a peaceful sleep. Nothing could be more pleasing to this mother’s heart right now. Over the years, I felt a tremendous relief each night just to feel my whole family under one roof, sleeping peacefully. After so much time was spent separated during the first year of Ethan’s diagnosis, I realized how much I took this for granted. I promised God from that point forward; I would never again overlook just one more of his many blessings.
Tomorrow, a call will be made to the clinic to ask for help from hospice. It will be a very difficult for Tracy and me to do for we have cared for Ethan for 14 years. How can it be that we now have to call someone into our house to help us care for our son? We understand how hospice will help us but our hearts don’t want to place the call because it brings the realization that we are going to loose Ethan soon. His family is not ready to loose him but we believe, he might be ready and by God’s grace, we have to accept this.
As much as we love and appreciate all the visitors, please, call first to make sure it is a good time. We want to spend whatever time is left with Ethan as peaceful as possible. Please continue to pray, God will bless us with the gift of peace.
The Grimm Family,
Tracy, Marcy, Asia and Ethan
Monday, February 18, 2008 4:19 PM CST
An update at last!
It’s been a fairly quite couple of weeks. Ethan has had some good days and others, just could have been better. He continues to have a hearty appetite (a lot to do with the steroids) but along with that comes a lot of bloating and puffy cheeks. Unfortunately, this really bothers Ethan. He doesn’t like the way he looks and notices that his clothes are not fitting properly. He has gained more weight in the past 4-5 weeks than he had in 6-7 years. His family thinks he looks adorable and we tell him that all the time! He’ll catch mom smiling at him and say “I know what you’re going to say, but don’t “and I say, “but I have to tell you” and he’ll roll his eyes and give me the ok to say it “just one more time!” “You’re beautiful and I love you so much”….........E usually tries to turn away quickly so I can’t see the sweet little smile on his face. Something tells me, he doesn’t mind hearing that once in a while!
We continue to have many visitors, which brings a nice distraction to our somewhat quite life. This past week, we had a special visit from Ronald McDonald (yes, the REAL Ronald McDonald). During his visit, he mentioned that he has been a clown for 22 years and his only house calls have been to see Ethan! Council Bluffs is much safer place with Ronald and Ethan at our house – they are less likely to get in any trouble! The two amigos have had fun over the years playing “games” like, cookie toss out the drive thru window, play dough bounce into the fries and ring a customer with a frizz bee. The two are quite creative in their “Ronathan” Olympics! Our family loved seeing Ronald and look forward to his next visit!
Thank you so much for all the wonderful dinners, phone calls, cards and promises of prayer for our family. We are so blessed to be surrounded by so many caring friends and family members. This journey is so unpredictable and foreign to our family, at times it's hard not to feel lost. Tomorrow has unfortunately turned into something fearful to our family. Normally, there would be excitement of a new day however at this time, all we want is today. We want it to last a lifetime.
May God continue to give us strength to see each and every blessing throughout all our days.
The Grimm’s
Tracy, Marcy, Asia and Ethan
Monday, February 4, 2008 11:33 PM CST
The Superbowl is over, now what will my boys do for entertainment? Oh, I forgot, the Wii continues to consume their every waking moment. No worries about being bored in our house!! Asia has even squeezed some time in her very busy social life to sneak down to the “man cave” and play a little Wii herself. It looks as though, Mom needs to get with the program!
We had a great week. Ethan felt good and he really enjoyed visits from some very special friends……….friends who play Wii. Our First Data clan visited for lunch on Wednesday. This time it was Marty and Rick who brought Ethan’s favorite Chinese food and played a few games of Wii bowling. Ethan loved having someone come over for a mid-day mini Wii tournament. More importantly, he loved his food! The steroids he must take to help with swelling makes him VERY hungry so, food is ever so popular! On Thursday, the Diez family came over for dinner and to watch the season premier of “LOST”. Ethan and I are huge fans of the show so it was especially fun to have a party-like premier atmosphere for the premier. On Friday, friends, Ryan, Leah and baby Dahnovan traveled all the way from Iowa City just to see Ethan! As an Ethan requirement, there were a few games of Wii bowling played as well as food. The Wii games paused for a snack break and cookies were on the menu. Just to give everyone and idea of how much E loves his food, Ryan (former Hawkeye football player) went to take one of the 18 cookies and Ethan (all 4’3, 65 lbs) gave him a death look and said, “those are my favorites and you only get one!” It was a priceless, embarrassed mom moment. Ryan and Leah made a great recovery and got back into Ethan’s good graces by getting us out of the house for a nice dinner. Nothing could have made Ethan happier than more food! Thanks to all of our great friends for the visits!!
As I mentioned, Ethan had a really good week. He only had a few “tremors” but no heavy duty seizures like he experienced he week before. That was very scary for all of us and certainly don’t ever want to see that happen. Last night, during the Superbowl, Ethan had a slight seizure but more of a dizzy spell. Thank goodness we were at his Uncle Todd and Aunt Tammy’s house so he was comfortable and made himself a cozy spot on the loveseat. About the 3rd quarter, he asked to go home for he was tired. The two of us came home, watched the rest of the game and colored some pictures. It was a nice ending to our week.
Thank you to all our friends and family who send call (even those who simply leave voice messages), send cards and those who have brought meals. Many of you know, I love to cook but the past few weeks, it has been the last thing that I have wanted to do. Up until this point, I had my family believing I was the best cook in the world. Now that we’ve been graced with WONDERFUL meals, the gig is up!
In addition to everything that our friends/family has done for us, nothing comes without promises of prayers for our family. We struggle at times with what appears to be God’s plan however, knowing there are many prayers of strength for our family, help turn the fear into acceptance and peace. Prayers are the best gift you can give our family.
The Grimm Family
Tracy, Marcy, Asia and Ethan
**** Special prayers for our friends ****
Hannah and Sydnee: for strength to BEAT cancer and for their families.
Dane: healing for his illness and for his family
Ellie: her own healing so she can keep up with all those she has so faithfully prays for!
Sunday, January 27, 2008 0:46 AM CST
It's hard to believe our last update was over a week ago. The days race by without even realizing how many things were left undone. Now we have to weigh if any of those "things" were important in the first place. What we do know, we are thankful for each of the days this week.
Ethan had some good and not-so-good days this past week. He handled both in his typical E man style, saying each day he felt he was getting better. He is an amazing kid.
This morning was pretty rough for E (and his family) for he had several seizures which caused him to loose the last 24 hours of events. It started while he was eating breakfast before heading out for the last of his bowling league. The seizure caused him to question the day of the week, whether he had a basketball game, where the get well poster came from and why he had a Wii game when he only has a Playstation. All those questions he asked over and over and over. No matter how many times we gave him answers, he couldn’t remember what we had told him. It was very scary for all of us.
What began as a very frightening day actually ended very nice. Ethan went bowling and amidst having 2 more seizures, insisted on finishing out the 3 games. E was cheered on by his team mates, Michael, Joey and Logan along with the rest of his fan club. Although his memory was still foggy, he felt better and stayed to play 4 more games with his friend Trae. E his friend came home, played Wii for a couple hours, and ate dinner. We decided to meet friends for an early movie. Ethan belly laughed several times. That beautiful sound just warmed our hearts.
Ethan has enjoyed company this week. Thank you to all those who visited. Please continue to call prior to a visit for there are times, he just doesn't feel well. The meals have been absolutely incredible and cards, messages and especially the prayers, has meant more than words. THANK YOU TO ALL OF OUR FRIENDS AND FAMILY!
Please pray for two very brave little girls, Sydnee and Hannah who are battling another round of this terrible disease. Pray that God gives their parents strength and Doctors knowledge.
Special prayers for Renae (cousin on the Grimm side of the family) and her two daughters, Carly and Sydney. They lost their husband/father, Brett, to a brain tumor this week. They were all so brave and fought so hard. Our hearts are so heavy for them.
Please continue to pray that Ethan is free from pain and for complete healing. Pray for strength for our entire family.
Tracy, Marcy, Asia and Ethan
Friday, January 18, 2008 2:30 AM CST
All that we can say is “WOW” to an overwhelming show of support from so many kind friends. All the prayers and words of encouragement lift our family more than words can express. Thank you, thank you, thank you, for bringing so much warmth to our week!
This week passed like the speed of light. Overall, it was a good week. Ethan sleeps a lot but when he is awake, he is in a great mood. Thank the Lord that Santa managed to find the kids a Wii for Christmas! That has been Ethan’s source of non-stop entertainment ever since Christmas day. Kid you not, Ethan has probably bowled hundreds of games this week alone……one hand/arm gets tired, he moves to the other one. He is amazing! When he has visitors, he invites them downstairs to the “man cave” for a thorough beating in bowling, golf, baseball or boxing. Oh, and just to prepare those who think about visiting him, he will write down your score and display it for all to see. His score of course stands alone on its own sheet of paper just to show, E is the Wii champ in our house!
A picture of our family from last summer replaced one of the Hawkeye pictures (sorry Hawk fans – E is sure to give me grief!). The kids wonderful Aunt Tammy took this picture and we liked it so much, it was going to be included with our Christmas cards this year. Unfortunately, those darn cards did not address and mail themselves! This picture reminds us of warm weather. In case you are not living in the Midwest, consider yourself lucky, it’s pretty stinking cold right now!
As mentioned in our last update, this is a very difficult time for our family. We continue to pray that Ethan will be healed and free from pain. We know all of you are praying along side us. Each day, each hour, we are together as a family, is an absolute blessing. We appreciate all the love and support from so many. The visits, messages, cards, meals and even the voice messages “just thinking about you” mean so much. Our most sincere thanks.
Many blessings,
The Grimm Family
Tracy, Marcy, Asia and our super hero, Ethan
Monday, January 14, 2008 9:45 AM CST
It’s been quite awhile since an update has been posted to Ethan’s website. The simple reason is we’ve just been busy living a normal life. It’s been crazy and hectic just as everyone else! Unfortunately, it looks as though “normal” has now taken a turn to heartbreak. Once again, our family has been crushed by the news that the tumors have grown very large and we now watch him struggle with the pain. We pray God’s hand will ease all the pain and fear.
Last April we knew there was nothing more we could/would do to fight this disease. We agreed as a family to live each and every day happy and free from thought of cancer and we did just that. We took a family vacation that was absolutely perfect, Ethan played baseball (and his team won 2nd place in the play offs!!) he went to Camp COHOLO, started Jr. High, went to his first Jr. High dance, watch the St Albert Falcons win another state football championship, won a place in a father son bowling tournament, had the ultimate experience of touring the Hawkeye Stadium, locker/weight rooms, went to two Hawkeye games with his Dad, played basketball, continued with his bowling league and enjoyed the holidays of Thanksgiving, Christmas, New Years and his 14th Birthday. What a miracle we were all given by all these gifts!
We are trying to keep focused on all the miracles we’ve received over the past 8.5 years.
Ethan has battled this brain tumor since May of 1999 and Leukemia since 2005. Countless relapses, surrounded by so many prayers – gave us all these years. We are so very thankful for the many blessings however, our hearts are breaking and we are trying to accept this new turn. We are simply frightened.
We appreciate all the calls and visits, especially for the care and concern from my First Data family since we received the news while I was out of town on business. We are surrounding by amazing friends and family, we feel your love, and know you will help us through this extremely difficult time. We will post updates frequently to keep everyone posted. Our family wants nothing more but prayers for strength and as much time together as possible.
Many blessings,
The Grimm Family
Tracy, Marcy, Asia and Ethan
Monday, September 10, 2007 8:28 PM CDT
Hello everyone!
With school back in session, football in full swing and the cool evening air, these are all signs that Fall has almost arrived! The change of season always brings a whole new perspective and attitude. The Grimm Family is certainly looking forward to this season to be one filled with happy times and perfect health!
As mentioned in our last update, Ethan began Jr. High as St. Albert where Asia is a senior. Both kids enjoy being back into a routine and they have adjusted well. Ethan especially loves seeing his sister (and her friends) in the halls and at lunch! It’s a pretty big deal when you’re a Jr. High kid to have almost the entire senior class give you a high five as they walk by you in the halls! Ethan so loves his big sister and most definitely, takes advantage of her seniority at school.
Ethan continues to amaze us with his perfect health! We continue down the homeopathic road to recovery. By the grace of God, it has been a path filled with many blessings. Ethan feels great, he has no pain. His hair is growing like a weed and he even refuses to get a real hair cut! We can only “trim” slightly. He says he wants hair like his cousin Nate’s – who in his eyes is the coolest teenager he knows! Thank the Lord, Nate has a nice normal hair cut! It is just longer than what E could ever grow, until now! We are lucky, Ethan could have easily picked a Mohawk or something funky. As much as we have messed with his hair over the past eight years, we would have had to let him do whatever he wanted with his hair!
Ethan had the surprise of his life a couple of weeks ago! My kind hearted boss, Marty was explaining to his nephew Wade that Ethan was the biggest Iowa Hawkeye fan ever. Ironically, Wade just so happens to be a score keeper for the Hawkeye’s so he has a connection or two! Wade made arrangements for a complete day filled all things that would make a true Hawkeye giddy with excitement! Ethan, Tracy, Wade and Ted (Wade’s father-in-law) spent the day touring the Hawkeye football and basketball facilities, including the locker and weight rooms. The boys even got to see the famous pink visitor’s locker room!! To top it all off, they met Coaches Ferentz and Lickliter!! Ethan called as they were headed back home and he just couldn’t stop talking about the great day! He did say “Mom, there was just one thing that happened that sort of embarrassed me.” He said while they were touring the basketball arena, they had put his name, weight, height and picture on every screen in the arena! That wasn’t so bad but the girls volleyball team was practicing and one of them spotted Ethan taking his tour. E said one screamed “is that Ethan Grimm?” and then they all came running towards him! Thank goodness someone with a camera was handy and was able to snap a shot of E with all the girls! Hmmmm…….he doesn’t appear to be too embarrassed! As a matter of fact, I believe it looks like he is really enjoying himself!
Our most sincere thanks to Wade, Ted, Marty and everyone at Iowa who gave Ethan the most amazing experience ever! You’ll never know how much this meant to our super Hawkeye fan and his father! Thank you!!
Thank you for all the constant prayers for Ethan’s healing. We hope our updates will show you the power of prayer does work and Ethan is a living example! Please continue pray for our strength and direction.
We ask that special prayers be offered up for two families that have touched our lives. Please pray for the entire Lusk family. This amazing family has fought so hard to see their brave little girl Tanner through childhood cancer. Also, please pray for the Applegate family who tragically, lost their son in July. May both families continue to believe in God’s healing touch and know HE will never leave their side.
Pray that God holds these two families close to HIS heart and helps them through these extremely difficult times. As parents ourselves, Tracy and I can’t even imagine the heaviness of their hearts. If only we could take away your sadness, we would. Our prayers are with you!
Many blessings,
Tracy, Marcy, Asia and Ethan
Sunday, August 19, 2007 9:39 PM CDT
Where did the summer go!? How could it be time for school to start and to introduce routine back into our life!? Well, I guess we have no other choice but to accept it and be extremely grateful for the absolutely wonderful summer! Yes indeed, it was a perfect summer. Thank you Lord for your gift.
On Tuesday, August 21st Ethan will start his first day of Jr. High School at St. Albert. It’s so incredibly hard to believe that our baby boy is not only a teenager but one that is a Jr. High student. Even harder to believe, Asia is a senior this year! Both kids are excited for school to start. As much as they would never admit it, they do better with a routine.
Ethan went to his first Jr. High dance last week with his buddies, Nate and Alex! They walked through their schedule and practiced their lock combinations. Afterwards, there was a dance and pizza for all the kids. Unfortunately, mom was not in town to send him off but we talked several times during the day. We planned what to wear and when he should expect the Dunning's to pick him up (THANK YOU Tony and Lisa!). Ethan was anxious but yet, excited for this new experience. E called me as soon as he returned home and just blurted out, “I danced with THREE girls mom!” He had such a great time!
As for Ethan’s health, he has never looked or felt better than he feels right now. He is just amazing. Looking back to where we were in April and May (sorry, I wiped out my up dates by accident during that time frame so those who hadn’t read the updates, missed the part where E relapsed in April with the brain tumor and May with the tumors moving into the spine) it is nothing short of a miracle that Ethan could have such a wonderful, pain free summer. We continue with our “holistic” approach and we are so blessed to have so many providing direction. Do we know what it is that is helping Ethan to feel so great? Most certainly, yes, it is God’s gift to our family. Plain and simple, HIS hand is caring for Ethan. We are so very, very grateful for the gift of each and every day.
Thank you to all of our family and friends who continue to keep Ethan and our family in your prayers. Our strength comes from your beautiful gift. Please continue to keep Ethan and the many other children battling this horrible disease.
We ask for extra special prayers for Tanner and her family. Tanner’s spirit is amazing and her parents are pillars of strength though their hearts are breaking. Pray for that a miracle may shine down upon Tanner and her family.
Also, please pray for the Applegate family. They lost their beautiful son tragically in July. Although we have been told many times over the past 8 years we could loose our son, it is still incomprehensible to imagine loosing a child. Please pray for this family’s peace and healing.
Many blessings,
Tracy, Marcy, Asia and Ethan
May 1 2007 update:
** Found the missing update from May! Check the journal history for date specific updates**
This update we hoped would only appear in our journal history. Unfortunately, it is current and resembles many past updates. Once again, a relapse has raked havoc on the Grimm Family. We are back to battling the brain tumor.
On Good Friday, Ethan had a routine MRI that showed 3, possibly 4, existing tumors had grown considerably since the December 2006 scan. As one could imagine, the news was devastating especially since we had just celebrated 2 WONDERFUL years of stable. Thank God for a quick response from Dr. P at the Mayo Clinic, he trusted our request for Gamma knife treatment of the tumors. By Tuesday morning following Easter, he had appointments scheduled for Wednesday, Thursday and treatment on Friday. In a matter of one week, we identified a relapse, put a plan in place and received treatment! Not to mention had our insurance company’s approval! What a miracle that all these pieces fit into place within a short amount of time. This was another sign God has not left our side. Not even through our 2 year stretch of perfect health.
Ethan, though very disappointed that there was another hurdle to get through did amazingly well. His only request was “get it done” so he didn’t miss any of his baseball games. After spending 8 hours under anesthesia, Ethan came out of recovery howling “let’s go home! I have bowling and baseball practice tomorrow!” Dr. P said he wasn’t about to try and stand in between a boy and his game. So, head bandages and all, we threw E in the backseat and headed back for home!
Despite the freakish blizzard that turned our drive to Rochester more interesting than we ever care to experience again, we believed the trip was “mission accomplished”. From the onset of identifying the relapse, all four of us put our battle gear on and moved into position, just like we have so many times before. Asia quietly accepted that her family would be gone for a few days and took it upon herself to make her own arrangements of where she would stay. No need to ask her to do this, she simply came to us with her plan. What a blessing she has been through all these years. Asia has always quietly accepted the times where her brother’s health monopolized our family’s focus. Never resenting, never angry, just accepting. That’s our daughter. She is our balance. We love her more than words can describe!
Moving on with life as though our mission was indeed complete, only lasted a short while. Two weeks after our whirlwind trip to Rochester, E began having some severe pains in his neck and ear. After many calls to the Dr, tests and a trip to the ER, his Dr. suggested an MRI of the spine and neck. It had been 2 years since our last one but we were trying to rule out additional tumors or continued growth of the ones in his brain. The results of the MRI showed the brain tumors had dropped “seeds” into the spinal column. The tumors have “sugar coated” the spinal cord, making any chance of surgery (gamma knife) no longer an option for treatment. We have not had to deal with tumors in the spine since 2000. We’ve always known our options were limited if it were ever to return. The many years where the disease was not present in the spine were not taken for granted. Our thought was if there was progression in the brain, then we check the spine. As we have discovered, the cancer woke from a deep sleep and has raised its ferocious head. This news caught us off-guard and surprised us twice within a matter of a few weeks. Still recovering from the first blow, our family is preparing for another round of battle.
As mentioned, there are very few, if any, options available for treating E’s spine. He received a lifetime maximum dose of radiation to the brain, spine and neck when he was 6 years old. We recalled our Dr. in Omaha who had treated him mentioning there was a smidgen of radiation leftover. After checking with other Dr.’s to see if we could use whatever was leftover, we were able to confirm the risk far out weighs even the slightest hope for treatment in this form. It becomes a quality of life issue. This is one risk we, as Ethan’s parents, can not consciously agree to take.
So, our search for another miracle is on. We are providing this update as we are on the road back to the Mayo Clinic with an additional stop planned in Chicago to visit another Doctor. Until we get a clear message from God that it is HIS plan to bring Ethan home with HIM, we will keep looking for our miracles. As we’ve said so many times before, we are not limited on the number of miracles we can receive. We just have to keep our eyes and hearts open to the even the simplest of miracles, each and every day.
Please pray for Ethan’s mind, body and spirit. As of May 12th Ethan has successfully battled this disease for 8 years. Not only battling one cancer, but two. Pray for his strength to continue the battle.
Please do not limit your prayers to Ethan. The Doctors and nurses need to be lifted up in prayer as well. God gives them the knowledge to make the right decisions on treatment. Prayers for their strength are equally as important as it is for Ethan.
The entire Grimm Family, thanks to all of our family and friends who have called, left voice messages, sent cards (especially the kids and teachers at St.Albert, Diez Family, Ronald and my table 19 girls!) for all the prayers and kind words. Without your support, our battle would be entirely up hill. With all of you, the wind is at our backs. May God bless all of you for your support.
“We must go through it, to get through it.” This is an oh-so-true saying from a dear friend that plays over and over in our heads. It gives us the motivation to keep looking for that next miracle!
**Please keep a sweet young lady named Tanner and her family close in prayer as well. They too have another battle on their hands ****.
Blessings to everyone!
The Grimm Family
Tracy, Marcy, Asia and Ethan
Sunday, July 8, 2007 12:18 AM CDT
*** Our most sincere “Thank You” to all of the people who have been faithful in prayers and their gifts of kindness towards our family. The overwhelmingly generous gift given for our family cruise meant more than words can describe. Special thanks to Jacque and the rest of the Table 19 girls, our First Data Family, our Neighbors, our “Peeps”, all the Ya-Ya’s, our St. Albert Family, our St. Patrick Family, our Candlelighter’s family, the Falcon Green Team family, our Dance family, Ronald McDonald and the many other wonderful friends in our life. Thank you from the depths of our hearts! As you will see from our new pictures, the Grimm Family had the time of their lives! Our trip could not have been anymore perfect. ******
Thank you to all our friends and family for patiently waiting for our next update! The Grimm Family has been busy with all the normal activities that come along with summer. We have taken a FABULOUS vacation, had several dance recitals, a national dance competition, the Milestones walk for Pediatric Cancer Research, bowling league and a really great time with baseball! The Falcon’s Green team finished second in the league! WAY TO GO FALCONS GREEN TEAM!!! Thanks to Coach Quigley and Coach Ostronic for all their outstanding devotion to the team. You have no idea of the impact you have had on your team over the years. Thank you for your love of the boys and the game. Thank you for showing them how to be a real “team”!
The Falcons Green Team played the Our Lady of Lourdes team in the final tournament game. At the end of the game, Ethan was awarded with a special signed ball by the team and a trophy holder engraved with “The most courageous player in the League”. OLL Coach (and dear friend), Matt Peters gave a heartfelt speech and it was clear, every one of the OLL Players were incredibly proud to present the award to Ethan. The Falcons Green Team and OLL Team are the true definition of winners. It’s not simply because they are awesome baseball players, it’s because they get what it takes to be compassionate and caring young men! May they hold on tight to this very special gift and carry it with them throughout their life.
The past several weeks have been filled with simple things that are sometimes taken for granted. Our family has taken the time to slow down and really enjoy the time we are together and even have new pictures to prove it! Our vacation pictures are included in this new update but we have many more to share from all the wonderful times we’ve had and will continue to have this summer. We may not have the words to put down in writing but we’ll have pictures to prove the Grimm Family is doing well and enjoying the summer!
Now, for the update on Ethan’s health. We really struggled to find direction on how we were going to tackle this new chapter in our battle against childhood cancer. The message we wanted to share with everyone was that of strength and hope, not one of sorrow and defeat. Thankfully, our prayers were answered and we found the path in which we believe is where we are meant to take. A tremendous weight has been lifted from our hearts.
As a family, we decided not to enroll Ethan in a clinical trial but rather we will take a “holistic” approach to help him heal. Our approach will help heal his mind, body and spirit and never ending prayer will be our guide. Ethan has been through so much over the past eight years, we just couldn’t see him face any additional harsh treatments. Clinical trials are important in helping Doctors to identify possible cures or treatments; it’s simply not the right thing for our family. Taking an all natural, whole organic food approach with our diet, using Chinese and Ayurveda herbs and therapies will help to rebuild Ethan’s body (and ours) and make him strong again. This is certainly not an easy course of direction. To the contrary, it’s very, very difficult to make drastic changes in the way we think about what we put into our body. Multiply that by 4 family members, even more challenging. Our continued faith in God, who has never left our side, will oversee our journey and bring peace that we are exactly where we are supposed to be, united as a family where we ALL fight the battle with cancer.
Ethan had his final MRI of the Brain, neck and spine last week. Everything was stable and compared to the previous check, stable is a true blessing. We have chosen not to continue to have MRI’s to check to see if cancer is “still there”. We do not need the reminder or the confirmation of the status of E’s health. If Ethan feels good and has a great day, week, month or year, that is all that matters to our family. If an MRI tells us something is still there or growing, it will not change our direction, or God’s will. We stand firm in our faith that healing will take place for our family.
The past 3 months have been a whirlwind of emotions. We had our lives turned upside down again because of cancer. Reaching a clear decision on how we would prevent it from controlling how we live as a family, brought more peace than we have ever experienced. We are so grateful the good Lord has granted us this gift.
The tremendous outpour of support from our friends (new and old) and family has been overwhelming. We’ve been blessed with many prayers, cards and messages of encouragement. It means so much to our family just to hear a voice message or simple card saying “we are praying for you”. All the prayers have had a huge impact on our family. Please continue to pray for Ethan and our family. Also pray for the Doctors and the nurses that they make the right decision for all the children in their care. Pray for the many other families battling childhood cancer, especially a very special little girl, Tanner Lusk and her amazingly strong family.
Many blessings,
The Grimm Family
Tracy, Marcy, Asia and Ethan
May, 2007
Monday, January 1, 2007 7:11 PM CST
Happy Memorial Day!
Happy 4th of July!
Happy Labor Day!
Happy Thanksgiving!
Merry Christmas!
Happy 13th Birthday Ethan!
and
Happy New Year!!
Whew! Our 2006 just flew by and we did our best to live the past year to the fullest! This was our best year in the past 7.5 years! The Grimm Family was happy,healthy and thoroughly enjoyed a year of “normal” living – it was been wonderful!
Tracy’s business kept him busy, Asia kept busy with Dance and Cheer; got her driver’s license; her first job; two trips to Okoboji (one for Cheer camp and the other with the Keucks) and an amazing 10 days in Spain with Mom. Ethan went non stop with bowling, basketball into baseball and back again and he is officially, a teenager! Ethan turned 13 years old on December 30th Yikes! Harley is now 18 months old, smart as heck and full of energy! Zinc, just spends a lot of time defending his right as a cat and let’s the 85lb puppy know that cats rule. As for mom, well, continues with the best of intentions “once life slows down, I’ll get those closets cleaned out and the house in order!” Yes, I believe “one day” will come! It just didn’t happen in 2006!
Although Ethan continues on with his treatment for Leukemia, he has been in remission for the past 18 months! Additionally, he had a follow-up MRI before Christmas and the brain tumor(s) continues to remain stable!! It has been stable for 20 months! Ethan is doing so well. He feels great! See, I wasn’t kidding when I said 2006 was the BEST year!
Ethan has been invited to go on a ski trip in February with the Grant Wistrom Foundation-Circle of Friends. He will be traveling with his amazing nurse, Anisa, and 3 other kids from Children’s hospital in Omaha. Ethan is THRILLED beyond words to this opportunity to “hang out” with the players. February seems a long ways away………….visit the website for more info on Ethan’s up coming trip!
http://www.grantwistrom.net/
Circle of Friends: The Circle of Friends experience begins with a four day Wisconsin winter trip that brings together 40 pediatric oncology patients from 9 U.S. Cities. They enjoy skiing, tubing, disco bowling and snowmobiling, along with discussing the latest fashion trends and the newest music to hit the charts. For many of the participants these new friendships offer encouragement and support as they navigate through their course of recovery. Every two years the group is reunited on a summer trip where new adventures await them. Jerry Wunsch, Brian Young, Rich Coady, Jared Tomich and Chris Kelsay join Grant in hosting these events.
Thanks so much to all our family and friends for yet another year of prayers and support! We are forever grateful. Not a day goes by that we don’t count our blessings!
Wishing you a New Year filled with perfect health! May your 2007 overflow with happiness!
The Grimm Family
Tracy, Marcy, Asia, Ethan
Harley (dog) & Zinc (cat)
Sunday, April 30, 2006 11:08 PM CDT
Well, it’s hard to know where to begin my update! So much has happened since my last update. It’s really hard to believe that May is here and before I know it, the kids will be out of school asking when are we going on vacation! Yikes!
In my last update, I mentioned how Ethan hadn’t been himself for quite some time and we weren’t having any luck identifying a cause. After Ethan’s appointment with the Gastrointestinal Doctor, which only uncovered a bad case of heartburn, thankfully, Dr. A ran some additional tests. The tests reveal what we believed to be the culprit behind Ethan not feeling well.
It appeared that Ethan was experiencing a side effect of treatment; his body had stopped producing antibodies. This was particularly alarming especially since Ethan was going to school even during the flu and cold season. The blessing, there was a fix for this condition. Ethan was given an IVIG transfusion and within days, was back to his old self again! He will continue to receive a transfusion every month while on treatment (1 year down, 2 years to go!) extending a few months after treatment. Ethan goes to the clinic for chemo every month anyway so we just get the opportunity to hang out a little longer with all of our favorite nurses, child life specialist, social workers and families sharing the same experience as we are! What great company!
Our family had a wonderful Easter! It was really nice and relaxing. Family came to our house and as always, there was enough food to feed a small army! It was very nice. The Easter Bunny even made his usual stop at our house just long enough to drop a few eggs for an Easter egg hunt! This was an extra special Easter, especially knowing where we were last year. Oh, life is sweet!
My rule is only to look back to see what has been gained by the past, not to dwell. I’ve spent a lot of time lately looking back to where we were one ago and I realized, we have made it through some really incredible hurdles and met some terrific mile stones.
I would like to share that one year ago, we only held on to our faith that Ethan was going to survive a second cancer. One month before, the brain tumor (Ethan’s original cancer) had grown and additional treatment as well. I must admit, it was a very dark time for our family, not knowing what lie ahead.
Today, my heart is bubbling over with thanksgiving for our prayers were answered. The leukemia remains in remission from the first round of chemo, one year ago! Ethan is now in the “maintenance” phase of treatment which means the roughest, most awful part of treatment, is now behind us. Although there is 2 more years of treatment, we are thrilled to be a third of the way through it!
Ethan had a routine MRI to check the brain tumor a couple of weeks ago. As always, our family nervously awaits the results knowing that at anytime, bad news could send us back into the mode of weighing the few options available. Once again, our prayers were answered. All tumors were stable!
“Stable” is a truly a beautiful word to our family but these results had more meaning than they had in the past. The results marked the first time in almost 7 years where we would have 12 straight months of “stable”!! Ethan has never made it 12 consecutive months without a relapse. The longest stretch was in 2004 which he went 11 months, 11 days.
May 12th will mark the 7 year anniversary of Ethan’s diagnosis. He was a wee 5 year old little boy. Now he is 12 years old, playing sports, going to school and has beat TWO cancers! May God continue to shower us will the blessing of perfect health!
As you can see since my last update, life has brought many wonderful blessings. There are many other bright spots in Ethan’s life in addition to his health. He has topped his high score in bowling. He bowled 150 last week and ran into the house screaming to tell me about the new high score. Ethan was so proud and so was his family.
Ethan is playing Baseball and loving it. He is so excited to have the same team and wonderful Coaches from last year. He loves the game so much that he invites everyone to come watch him because he’s sure the feeling about the game is mutual! This season, Ethan will really get to enjoy the game without feeling sick or tired from treatment. It will be a wonderful summer.
Ethan received a visit from his buddy, Ronald McDonald (for those of you who may not have read our past updates, eat your hearts out, this is the REAL Ronald McDonald) this week. Our dear friend Jacque“McDiez”, brought Ronald over to the house (this was safer than Ethan meeting him at McDonalds……...chucking cookies out the drive thru window wasn’t likely on the top ten list for making your customers happy! Ronald McDonald is a wonderful friend to Ethan and our family. He has a heart of gold and holds the magic for making everyone around him feel great! Our family has years of wonderful memories with Ronald and we are looking forward to many more!
** As a special note ** CONGRATULATIONS to both Tony Diez, aka “McDiez” and Ronald McDonald. Both received the highest of awards for their outstanding efforts in the community, years of service and for their wonderfully kind hearts.
I am pleased to share all our great news in this update. It is looking as though we can set the worry aside and enjoy a peaceful, relaxing summer! Someone just told me last night “go for it, you deserve it!” You know, they were right, we do! Thanks to all the heartfelt prayers and support, we will!
Please keep all Doctors and Nurses in your prayers. May God give them the direction for caring for the sick. Especially our children who are so innocent and deserve to live life without cancer.
Many blessings,
Tracy, Marcy, Asia, Ethan and that adorable puppy……….Harley
Sunday, March 5, 2006 10:19 PM CST
Hello everyone! I know it’s been awhile since I’ve updated the website, my apologies! It’s been even longer since I’ve updated the pictures! As I prepare to post this update, I will quickly snap a picture of Ethan and his best buddy Michael who are hanging out today. I will keep the picture of the two boys from Christmas so everyone can see how well Ethan’s hair has come back.
E loves the look of his smooth, bald head! Regardless of the big scar that covers his entire left side of his head, the look is one he has learned to love and accept over the years. Ethan told me he was thinking about “balding it ” this summer. I politely told him that I was really fond of yet another new color and texture of his hair. It reminded me of Harley’s puppy hair but just in a nice shade of dark, dark brown! E’s smile makes me think he may just reconsider “balding it”.
As I wrote in my last update, Ethan has been having tummy problems. It has lingered on for several weeks and after an ultrasound, several Dr. appts and every homeopathic remedy I could think of, his tummy seems to be doing better. He is not completely back to normal, just not as painful when he eats. Just as Ethan’s tummy problems started to turnaround, he caught a cold, complete with cough, stuffy nose and fever. There is so much yucky stuff going around. We attempt to keep Ethan from crowds as much as possible (other than school) but, it appears the “crud” has managed to find its way to our little man. We pray that all the bad germs will be whisked away and this week will be a better one for Ethan!
As strange as it sounds, Ethan has had to continue his chemo through his illness the past several weeks. He was allowed to stop some of the oral chemo for a couple of weeks but received his Vincristine this past Thursday. The Vincristine is only given once a month but really wipes him out for about 48 hours. He gets flu like symptoms and a slight fever. Ethan does his best just to sleep it off, which is what he did this weekend.
We’ve pretty much spent the past 6 weekends home doing very little but sitting on the couch watching movies. Honestly, a side from Ethan being sick, it was a welcomed relief not to run around all week. Ethan’s illness of course didn’t slow his sister down. Asia continues on just as any oh-so-very-close to 16 year old girl would! Her continuance with “life” makes E a bit grumpy towards her but Tracy and I have artfully learned how to distract and defuse the little darlings!
Ethan went bowling on Saturday and Sunday. He’s just sick of being at home, not feeling well. It isn’t typical of his personality. Even when he was going through the really rough chemo (April-Dec 2005) he didn’t slow down as much as he has the past several weeks. Ethan’s spark shone through when he came home and told me that he has a new bowling average……..100! He picked up some tips from someone at the bowling alley on Saturday and was thrilled to see instant results. Tracy had no choice but to take E back to the bowling alley today just to see if the bowling tips still held their magic power. Ethan was pleased to announce, they did!
Baseball starts this week and that has Ethan’s spirits high. He’s excited to play with his same team from last year. Great group of boys and the best two coaches ever! Now we just have to be patient and wait for spring.
I think back to last year, going to Ethan’s baseball games with our new puppy Harley. He was small, easy to stick in a clothes basket so we could take him along anywhere. Now, we have the just turned 1 year old Harley, who thinks he could still fit into the clothes basket, and insists on going for a ride anytime someone heads for the door! Thankfully, Harley got over his motion sickness however, I would like to figure out a way to teach him to clean my car windows after he’s blown puppy snot and drool all over them! YUCK! His newest trick, see how far back he can stretch his neck to wipe snot and slobber on the rear window! Beautiful, just beautiful! I was given a book to read by a friend of mine from work. “Marley & Me” was written as the authors real life experience with his yellow lab “Marley”. I’ve only read the first 6 chapters but now see why my friend thought I would like this book. The stories about Marley completely mirror ones I could share about Harley! Quotes from the book such as “but then there were those moments when he would explode into a manic sort of hyper drive, as if some invisible prankster had just goosed him” and “some little voice in his head seemed to be whispering to him “Go ahead! Pick it up! Drool all over it! Run!” appear to be written for our Harley, not some dog named Marley! This is really a great book and for those who have labs, it’s a must read.
God bless everyone and thank you for the prayers and support. We thank you from the bottom of our hearts. Please continue prayers of healing for Ethan and the many kids battling childhood cancer. Pray for their Doctors and Nurses that God grant them the knowledge to heal.
All our love,
Tracy, Marcy, Asia, Ethan and “Harley”
Sunday, February 12, 2006 9:39 PM CST
Happy Valentine’s Day!
Thankfully, it’s been a fairly quite few weeks! Ethan only has to go to the Clinic every two weeks now. Eventually,once his medication is regulated, he will only have to go once a month! Going from 2-5 days a week since April 2005 until January and now once every two weeks, soon to be once a month, now that’s a schedule we can get use to!
Now that we have all this free time, it's possible this website will be updated with new photos. We would love to show off Ethan's new head of hair! He's like our very own Chia pet!
Ethan has been feeling a little under the weather with some tummy problems since last Wednesday. Nothing serious, just a bug that seems to be hitting a lot of people everywhere. He tries to convince us that he feels better so he can go outside, go to a friends, have a friend over or go to the Falcon’s Basket ball games etc. He did not win. He had to rest up and spend a lot of time home with his mom and dad.
We try to keep him away from crowds (other than school) as much as possible since his immune system is compromised. This is just a scary time of year with the flu and colds running rapid. Please say some extra prayers that Ethan’s immune system remains strong and can fight against the many viruses floating around.
Ethan finished up Basketball and Winter Hitting League. He is anxiously waiting for Baseball to start in March. Bowling league continues, as a matter of fact, it has been continuous over the past 3 years! E was thrilled with his new high score – 130! Ethan and his best buddy Michael have greatly improved their averages over the past few years. They go to the bowling alley and can easily bowl 5 straight games. I don’t think either one of them could not bare going to the bowling alley at least once a week! It’s incredible how Ethan manages to give all he has to each and every game all he plays, despite feeling weak and sick at times. Give him a cheering section (Asia, Michael and his parents, Memo and Papa, Rick, Lisa and Kyle) he’ll push even harder!
Ethan and his father worked on his Valentine box this weekend. There was a lot of thought put into the colorful shoe box mom gave them. It is a box with all his favorite things, basketball, baseball, his Dog Harley, Harley Davidson Motorcycles, Mom, Dad, Asia and God. He is very proud of his creation. E managed to get through half of his Valentine cards and we’ll complete the rest tomorrow night. As I have in past years, I planned to go to the school Valentine party however, this year, I have a client in town and can not make the party. Tracy will be going in my place. I must admit, I had hoped my little man would take it a bit harder when I told him I couldn’t make it. Before I had a chance to give him my back up plan, he blurted out with a smile on his face “Can Dad come instead?”. Ok, I really didn’t want him to be upset that I couldn’t go, just not so darn happy that I couldn’t! Ethan will really love having his father at the party.
Thank you to everyone for all the kind words and prayers. No words can describe how much this lifts our family. We know there is no way to repay the acts of kindness. We will simply have to pay it forward.
Please keep close in your heart all the children who battle cancer and their parents. Pray their Doctors and Nurses are guided by God’s hand. Pray for those who earned their wings and have left their families behind, especially angel Brooke.
Blessings to all!
Tracy, Marcy, Asia, Ethan and that loveable pup, “Harley”
Friday, January 20, 2006 11:17 PM CST
Today we received some great news! Ethan’s MRI results stable and one area (the last area we treated at the Mayo Clinic in March 2005) was slightly smaller! Naturally, we worry ourselves sick just before we have an MRI. Our hearts tell us everything will be fine but our minds like to drive us crazy with worry! We’ve come to know that one simple test, could turn our lives upside down and we would need to scramble to find treatment. Praise God for being so gracious to our family!
The brain tumors have never let Ethan rest for more than a year. The closest we’ve come in almost 7 years, was 11 months of stable. As some of you might recall, we had gone to the Mayo Clinic for Gamma Knife surgery in February-March 2005. During that procedure, the Neuro Surgeon felt there were some enhancements that appeared on the scan within the lining of where the spinal fluid flowed. It was apparent that his reaction was not meant to create panic, just something didn’t seem right.
Upon our return home, we visited with Ethan’s Oncologist. We decided to do a spinal tap to see if the tumor had dropped “seeds” in the spinal column, something we encountered in 2000 and successfully beat. After some sharing some additional thoughts about Ethan’s complaints, especially the pains in his legs, Dr. A decided to do a bone marrow aspiration while doing the spinal tap. No one expected to find Leukemia, the shock took us all by surprised. I can still see the faces on the Ethan’s Dr. and Nurse. I’ve known them for many years and this was not a look I had ever seen before. I pray that we never experience that look again.
That was 9 long hard months ago! Here we are today, Ethan just won his basketball game tonight, we ate sushi (kudos’ to Michael, E’s best buddy who was willing to give sushi a try) and celebrate great MRI results! This great news washes away all of the “uglies” that this week may have brought. Nothing is more important, more meaningful or more of a blessing than knowing E’s health is good. Ethan’s parents will sleep well tonight.
Our most sincere thanks to everyone for the healing prayers! We hope you sleep well tonight knowing that your prayers were heard.
Tracy, Marcy, Asia and Ethan
Tuesday, January 10, 2006 10:25 PM CST
Happy New Year! 2006 is sure to bring gifts health and happiness!
Ethan celebrated his 12th Birthday on December 30th! He chose the House of Genii to have his Birthday dinner. Ethan wore a huge smile on his face throughout the entire meal! He really liked our “cooker” and kept telling him what a good job he was doing preparing our meal. Mom had to pass catching the flying shrimp in her mouth just so Ethan could have two chances. He so loves the idea of throwing food…….especially when no one gets in trouble over it!
Ethan got a new, really cool, bike for his Birthday! It’s orange and black, Harley-Davidson colors, as he had to point out. Ethan has been riding it like crazy! He couldn’t ride a bike last summer in fear of him having an accident. Low counts and skinned knees do not mix well. It really was torture for him not to ride his bike. We managed to talk him into selling his bike at a garage sale with the promise of getting a new “big boy” bike once he got through treatment. It was the only way we could put a stop to those little sneaky trips around the neighborhood!
Ethan had a spinal tap and chemo last Thursday. This particular chemo is rough on him. He never complains but he just can’t hold back that he feels lousy after this treatment. He went to school and stayed all day, came home and went straight to bed. I asked why he didn’t call and have us come and pick him up from school. He said “I didn’t want to bother you at work”. Our little man shows strength beyond belief. We sure wish it didn’t have to be in this way.
Ethan has now officially been begun the maintenance phase of treatment. Maintenance consists of oral chemo daily, steroids 5 days a month and 2 other drugs once a month and a spinal tap every three months. This is far easier on him than what he has been enduring since April. As strange as it sounds, it is a welcomed relief. We will continue to rebuild Ethan’s immune system with several homeopathic approaches. Nature is essential to balance one's health.
Although treatment continues, rest assured, Ethan is doing everything he can to pack everything he can into each and every day! From school to basketball, winter hitting league, bowling league. Thoughts of Spring already has him thinking about, baseball, golf league and of course, bowling leagues run year round! Ethan lives life as though cancer doesn’t exist. Our hearts tell us, one day it won’t exist.
Thank you for all your healing prayers. It is truly, the ultimate gift.
Many blessings,
Tracy, Marcy, Asia, Ethan and all 85lbs of pure puppy love - Harley
Tuesday, December 27, 2005 7:51 PM CST
The Grimm Family hopes that everyone Christmas was wonderfully warm! The holidays are so very special to our family, especially this Christmas. This past April, with the news of yet another battle against cancer was beginning for us, brought painful thoughts of where we might be on Christmas 2005. We feel so blessed to have overcome a very difficult period of time and as our reward, given a wonderful Christmas.
Thankfully, Ethan was given a break in treatment the week before and after Christmas. He had to have a platelet transfusion but other than that, his counts seem to be heading back the right direction! I got to help out at Ethan's school Christmas party. What a hoot! The kids made a Christmas ornament, it was a pinecone skier. We've added it to our collection of homemade ornaments that is placed on the kids special Christmas tree. It's a magic tree! It's the only tree Santa visits in our house! The kids then played a game in which they had to work in groups and dress someone up as a snowman using toilet paper! Can you guess who was chosen to be decorated? Yes, Ethan's friends picked him! I've added a picture of the unveiling of my little snowman!
Santa visited the Grimm house and spoiled everyone, including Harley and Zinc! Harley got a few new toys and a collar, Zinc got catnip and a feather to play with! The two pets had to be right in the middle of all the action on Christmas morning! Zinc climbed in and out of sacks and boxes, Harley took a running leap into the pile of gifts, kids and the kitty in the bag! I tried to take a picture of the mess but both the kids and the kitty were not amused. Let me tell you what happens when 80lbs of puppy who decides to take a dive on top of everyone........he is sent to the corner with a bone.
Ethan's birthday is Friday, December 30th. He will be 12 years old! He is so excited. We haven't finalized the birthday fun but it is sure to include a dinner out with mom, dad sissy and a friend. His favorite place is the House of Genji, it's always his birthday restaurant of choice. He loves to catch shrimp in his mouth!
E is scheduled for an EEG on his birthday. We are checking to see if he continues to have seizures. He developed epilepsy after having 2 strokes (which left him paralyzed on his entire right side and unable to speak for a period of time) during surgery in 2002 to remove a brain tumor. The last time we experienced a seizure was Christmas Day 2002. Our prayers are the EEG will be normal and we can wean him off of his seizure meds.
Chemo will resume the week of New Years, beginning on January 5th with a spinal tap with chemo. This is the start of what is called "maintenance" which is expected to last the next 2.5 years :(. This phase will be much easier than what E has been receiving over the past 6 months. A routine MRI will be scheduled this month as well to check the condition of the brain tumor.
Please pray that E's immune system continues to stay strong during treatment and the flu and cold season. Pray for his Doctors, Nurses and parents so that we all make the right decisions for his health. In addition, please keep the Brion family, Darby, Nick and Gavin. Their little angel Brooke was sent to heaven for healing. May God's love shine through their loss.
Blessings of a happy, healthy New Year to everyone!
Tracy, Marcy, Asia and Ethan
Monday, December 6, 2005 10:52 CST
Hello Family and Friends!
Hope everyone is staying warm! The Grimm Family has been a bit slow at accepting the cold and the snow, but we’re trying! Ethan’s without hair on his head and Asia and I are just down right wimpy, poor Tracy has to listen to all of us complain! The one great thing about having the white fluffy stuff on the ground, knowing it’s a sign that Christmas is right around the corner! Christmas is so beautiful.
Ethan had a bit of break from chemo the week before Thanksgiving. He felt really good. You could just see it in his eyes! It was wonderful to see him feeling so well. He didn’t eat much for Thanksgiving but his appetite was better it has been over the past several months. He told me I was the “best cooker”! Now that just what an Italian mama loves to hear!
Ethan has been busy with basketball and now winter hitting league (baseball). He played his first basketball game against St. Robert, which just happens to be the grade school I attended! After the game, Ethan noticed pictures of the former classes in the hallway. Tracy was quick to hunt down my 8th grade picture to show Ethan. Once the laughter and jokes about my hair stopped, Ethan was back to being thrilled about a great winning game! He just beamed when he said “Mom, did you see me ALMOST make a basket?” He was so proud of himself. Tracy and I are proud of his every accomplishment.
Ethan began a tough phase of chemo last week. It was rough on him. He was sick Wednesday night and chose not to go to Basketball practice. Ethan really has to feel poorly to miss practice. Ethan came home from school and went straight to bed. E insisted that I go to school to tell his coach he was sick and couldn’t practice. It was cold and snowy but I just knew E would worry about his coach being disappointed. Although I worried the coach would think I was whacky for going out on a night like that, I didn’t want him to worry.
The bonus from my trip, I got to bring home E’s jersey! He was sound asleep so I laid it beside him in bed. Ethan woke up with a huge smile on his face when he saw the jersey. He asked me to hang it up for him. As I stood there and looked around his room, I realized, there were more clothes on his floor than in the closet! Lack of available hangers would not be a problem! Oh, my sweet little boy, is a messy one too!
Harley-Davidson Grimm (the puppy) is now 9 months old. He is a wonderful, sweet, walking disaster of a puppy. Harley weights approx. 75-80 lbs and by the way he runs through the house, he thinks he is the size of Zinc, our kitty! Harley still isn’t quite sure of the snow. He appears apprehensive when the snow is falling but loves to run around in it once it is done. We just love our very large, energetic puppy! His has brought much happiness to our home.
The above picture was taken by my wonderful sister-in-law Tammy! As comical as the “shoot” was, she still managed to get a great family picture. Harley’s sniffer went into overdrive and Ethan just doesn’t like to take pictures! Thank you Tammy for the great family picture! We love you!
This week Ethan will finish up this rough phase of treatment. After this, he will begin what the Doctor’s call “maintenance”. This will be a lot easier chemo plan however, it will last 2.5 years. We try not to dwell on the remaining timeframe. We try to focus on how thankful we are for surviving the worst part of treatment. It’s hard to believe that this past April there was so much unknown. There is still plenty of unknown for all of us. However, the knowing that everything is possible with God, and experiencing the gift first hand, sure makes the rest of the journey a lot less fearful.
Please continue to keep Ethan in your prayers. Prayers of healing from cancer, prayers for strong immune system and prayers that his spirit continues to be bright. Please continue to pray for Brooke and her family. Keep them close in your heart; they are in our daily thoughts and prayers. Pray for the Doctors and Nurses that care for these very special children.
Blessings to everyone! Stay warm!
Happy "Harley"days!
The Grimm Family, Tracy, Marcy, Asia and Ethan
Thursday, October 27, 2005 11:19 PM CDT
Hello everyone!
It’s been a long week and Ethan has completed 2 of the 3 rounds of chemo scheduled for this phase. I must say, our poor little man has had a tough time this week. Part of E’s treatment includes dexamethasone (steroids) which causes severe bone pain and one of the chemo drugs, causes jaw pain. Ethan has an incredible high tolerance for pain and never complains unless he is in real pain. The past week he has tried to carry on life as though it was normal but couldn’t keep the pain under cover. Thank goodness there were only 3 days of school this week. His teachers were so caring and made adjustments to his day along with placing check point calls to mom. St. Albert has always gone above and beyond in their care for children, especially when it comes to Ethan.
Ethan’s constant discomfort left his parents felling helpless. Everything we tried failed. It’s our hope that the next week will be better for him since he gets a break (7 days) from the dexamethasone (steroid) Once he completes treatment next Thursday, he will have a two week break from chemo in order for his counts to recover before the next round. If everything stays on schedule, the following round will last until the end of December. We know it’s going to be very rough so our anxiety has already started to build. Entering into the flu and cold season on top of heavy chemo really scares us. Our prayers ask God to send his healing Angels to surround Ethan with an immune system made of steel!
Ethan has been asking all month to go to the Pumpkin Patch. It’s his favorite place! We haven’t been able to squeeze trip into our schedule but we decided to go for short visit after his chemo treatment this afternoon. Ethan, and his closest buddy Michael, were both excited to go! The weather was perfect and the crowd was small, it was a great day for the Pumpkin Patch. Michael watched out for his little buddy, knowing he wasn’t feeling well. He went out of his way to lift Ethan’s spirits but little man was just worn out. The boys spent a couple hours walking around and brought home two HUGE pumpkins for Halloween! I bet they’ll be the best carved pumpkins in Council Bluffs!
It’s late and time to go check on our little man. He has chosen to sleep in his sister’s room tonight. He used to make a habit of sleeping in his sissy’s room when he first got sick (1999). Ethan sleeps on the trundle bed and takes his favorite pillow, blanket and Zinc (our fat kitty) and is out like a light! Funny, the kid that spends a great deal of time tormenting his sissy, still finds comfort by being near her. We remind Ethan daily about how wonderful his sister is to him. Asia’s always been so loving and caring toward him, even after he has just tattled on her for being on the phone past bedtime! Oh, sibling love!
In closing, we thank everyone for all the thoughts and prayers. We ask for the prayers to continue, especially through the end of December. Pray for Ethan’s immune system to remain strong and protected. We also ask you to pray for another incredibly brave child named Brooke. Pray God will give her and her family healing peace.
Many Blessings,
Tracy, Marcy, Asia, Ethan, Harley the puppy and Zinc the fat kitty
Monday, October 17, 2005 8:40 PM CDT
Great news everyone! It seems that our prayers have been answered once again! Ethan's MRI results (for the brain tumor) from Friday's scan came back with one area smaller than the previous exam (July 05) and the remaining areas are stable!
To explain in more detail, Ethan has 7-9 areas where tumors once existed from his original relapse in April of 2000. They are sort of like tumor “footprints”. Over the course of the past 4 years, each one of the “footprints” has grown in size, indicating reoccur rent tumor. The reoccur rent tumors have been treated by the Gamma Knife (last treatment was March 3, 2005, just two weeks prior to Ethan’s diagnosis of Leukemia) An MRI is performed every 8-10 weeks to monitor additional growth. This particular type of brain tumor is aggressive so for everything to remain stable, is a blessing!
Ethan is about to start another Phase of treatment for his Leukemia on Thursday. This next round will be rough on his immune system and brings extra worries due to the cold and flu season approaching. Ethan gains strength and heals best by carry on with life as normal. Going to school and being with his friends are most important. Please pray his immune system will be strong and fight off the Leukemia as well and be protected from colds and flu. Pray that we are able to find the perfect balance to help him to remain strong.
I will provide another update over the weekend to let everyone know how Ethan’s spinal tap, bone marrow aspiration and chemo treatment went on Thursday. Please pray that the Doctors make the right choices in treating Ethan. Pray that Ethan’s body remains strong.
Many blessings, Tracy, Marcy, Asia and Ethan
Friday, October 14, 2005 8:51 PM CDT
Hello!
Ethan had his Echo Cardiogram (heart), Counts(blood) and MRI (brain) today. We won't have the results until Monday but know that the good Lord will give us a healthy report!
During our visit to Clinic today, we saw some great old friends and met some new ones. Clinic visits bring many emotions. Everyone is there because a child is/or has been ill which is not an easy reality. However, to see these very same children overcome their illness, strengthens ones faith and hope. The nurses, child life specialist, social workers, Doctors and Sandy, make the gloomiest of visits bright. They are all the most amazing people and thankful for their gift upon each and every visit!
I will update this site next week once we receive the results from Ethan's tests today. Please say extra special prayers for Ethan's next round of chemo (some tough stuff) begins next week.
Many blessings, Tracy, Marcy, Asia and Ethan
Sunday, October 2, 2005 7:46 PM CDT
Hello Everyone!
As usual, I haven’t been very good at updating Ethan’s website with status of his treatment. One thing I can promise, if my updates are few, this is a sure sign life is going well for the Grimm’s. So if you check our website and see that it has been awhile since I’ve posted an update, please say a prayer of thanks that life treating us well!
Ethan had surgery to remove his central line and replaced it with a port. The central line and/or port are attached to a main artery in his chest and pumps the chemo quickly throughout the body. This is used for blood draws as well as transfusions. Ethan was thrilled to get the port since the central line prevented him from swimming all summer. We promised him once the difficult treatment was over with, we would go somewhere this winter that will be warm and sunny so he could swim his little heart out!
School is going very well for Ethan. Once again, he has wonderful teachers who give him constant encouragement and praise. His classmates are the best. Very caring and kind kids. Ethan loves going to school and it’s because of all the kindness and support he receives from his friends and teachers. Ethan recently decided he wanted to be in band. First he wanted to play guitar but when the band teacher introduced him to other instruments, he loved the trumpet! He kept asking about playing an instrument but thought it might just be a passing fancy. Oh no, not our son! He wasn’t going to give up until he got his way! After speaking with the band teacher, we decided to let E give it a try.
I brought home a shiny new trumpet (thank God they have trial periods and payment plans!) last week. I will forever remember the look on his face! He was thrilled beyond words! He immediately pulled it out and walked around the house proudly playing his new trumpet! Yes, I am sure, the entire neighborhood heard his official welcoming of this trumpet! His first lesson last Friday was great. He promised to work super hard to learn how to play! Tracy and I are tickled pink of his new found interest! May he enjoy learning how to play the trumpet.
A little update on "Harley-Davidson Grimm" (the puppy), he will be 7 months old this week and weights approx. 58lbs! He is a beautiful baby and has a wacky personality! We just LOVE him to pieces! He has learned how to shake, right and left hands, sit and beg. "Stay" and "Come" present a bit of a challenge. When Harley is outside, smells from the deer and other animals in the neighboorhood seem to take over his brain. Harley doesn't hear very well when is nose is working!
A neighbor mentioned that the deer apparently smell Harley too. Tracy was told there were about 10 deer in our yard digging up the grass. Sod was all over the driveway and we wondered who would do such a thing? Something about those unsightly yellow spots (courtsey of Harley) bother the deer too!
Ethan will end Phase III of treatment next week. He has had 56 days of oral chemo. Of course, he handled it like a champ. This phase was much easier than what he had to deal with this past May-August. Thursday, October 6th will be his last day of chemo in this Phase and he will get a two week break from treatment. On October 14th, Ethan will have an echo cardiogram on his heart to ensure the chemo has not caused any damage so far and that his heart is strong enough to tolerate the next ugly phase of treatment. In addition, Ethan will have an MRI of the brain to ensure the tumors are stable. This is just a routine MRI and it is a bit later than I normally like to schedule them. I typically schedule them every 8-10 weeks instead of waiting the standard 12 weeks. I feel better keeping a close eye on things so if we do have signs of growth; there is time to pull together a treatment plan. Ethan’s Doctors are kind and allow me to schedule the frequent MRI’s – as long as it makes me happy!
Once those two tests are complete (I promise to provide an update to the website with the wonderful news that Ethan is doing great) Phase IV of treatment can begin. Phase IV will start on October 20th. This is where the ugly stuff begins again. Ethan will have spinal taps with chemo, IV chemo, oral chemo and the dreaded steroids for a period I am not quite sure of at this time. I believe the Phase could last 6-8 weeks depending how Ethan’ counts hold up. Once he is through this phase, he will begin what they call maintenance. Maintenance will last 2.5 years and consist of chemo once a month (or so I believe at this time). As long as Ethan remains in remission, this is rest of the leukemia treatment plan. He’s endured so much these past months it hard to think there is still another 2.5 years left. On the other hand, he has come through the some very rough stuff, with more of it pending here in the next couple of weeks, like a champ. His constant fight to just be a normal kid keeps his life full and happy.
Please pray that October 14th will bring positive results on the Echo and MRI. I believe the echo results will be available that day but know it most likely will be the following Monday to hear back on the MRI.
Thank you from the bottom of my heart for your continued prayers and thoughts. Without them, Ethan’s battle would be even more challenging. God has been so kind and continues to answer our prayers.
Many blessings,
Tracy, Marcy, Asia and Ethan
Saturday, August 6, 2005 3:39 PM CDT
Hello Everyone!
I know it’s been several weeks since our last update and I apologize for the delay. Rest assured the delay comes from our life being very normal the past few weeks – crazy busy like everyone else we know!
Asia and Ethan both returned to school this week. Asia is a sophomore and Ethan is in 5th grade. Asia is already busy with cheerleading practices and fundraisers and St. Albert's first Football game is tomorrow night! The St. Albert Cheerleaders are sponsoring a week long fundraiser where activities like a dance and spaghetti dinner with the proceeds going to Make-A-Wish. This is a great opportunity for the kids of St. Albert to get involved and to have an awareness of what Make-A-Wish does for some very special children just like Ethan!
Ethan is thrilled to be back in school with his friends and teachers! I’ve had reports from his teachers that Ethan had a fabulous first week! It’s an absolute blessing to watch his excitement about school. He calls me every day at 4:03 to share the day’s events. For a child that struggles with short term memory, he doesn’t miss a detail about his day. School for Ethan is his home away from home!
Ethan began Phase III of treatment last week. This was after having wait a couple weeks for his counts to recover and two blood transfusions (or “go-go juice” as we so fondly refer to it!) to help speed up the recovery. Phase III consists of a spinal tap with chemo and 56 days straight of oral chemo. I know this sounds harsh but this is actually considerably easier on him than what he had during Phase I&II. He seems to be handling this phase with great ease. Our greatest challenge will be to keep him healthy and free of colds and flues. We have been attempting to build his immune system throughout his treatment and pray it’s enough to protect him at school!
The complete treatment plan is still not fully known at this point. Ethan’s Doctor keeps reminding me that baby steps are ok. I sometimes become overly anxious because I like to have a plan and have all the answers to my questions. Unfortunately, cancer treatment doesn’t cooperate this way. Thank God Tracy accepts the day by day schedule changes easily. His reaction helps keep me from getting too out of control!
The greatest thing about Phase III is that we only have to go the hospital once every two weeks! This is a huge break (time and gasoline) for us since we’ve been at the hospital 4-5 days a week since April! Let it be known, there is just no quick and easy way to get from Council Bluffs to Children’s Hospital! I often stop and think about those families that have a sick child and live a great distance from a hospital. I know there are more cases than I care to think of so, I set my “Auto pilot” on my car and before we know it, we’re there! It’s magic!
Ethan is feels great and continues to have incredibly high spirits. As I’ve said many times over, your prayers are creating miracles. Please continue the prayers for Ethan and our family for we have a long road ahead. Even more so, I ask you to pray for all those whose lives have been impacted by the hurricane. If today is a bad day, please stop and think about all those people who have suffered great loss. You may find your day suddenly turned brighter!
Many blessings!
Tracy, Marcy, Asia, Ethan and Harley
Sunday, July 17, 2005 5:20 PM CDT
Ethan’s off to camp for a few days so mom finally has the opportunity to update his web page! I took this picture of him in his cabin with a camping friend and counselor. It was hard to leave him!
We took Ethan to Camp Courage, Hope, Love (CoHoLo) again this year. The camp is for kids with cancer and this is Ethan’s 5th year!
The Doctors, Nurses, Child Life Specialists and other wonderful volunteers are the camp counselors. They not only do an incredible job raising money for the camp, they give the kids a camping experience they’ll always remember!
The agenda is jam packed with activities such as a Luau, sports, swimming and best of all……..pranks on the Doctors! Each camper receives a video of all the highlights of camp. We look forward to watching the tape to see how much fun Ethan and the other kids had at camp! There are some awesome people who make this all happen for the kids, THANK YOU to each and everyone of one of them! We thank First Data as well for their years of support of Camp CoHoLo!
Ok, now for an update on Ethan’s treatment plan. This up coming week should have been our final round in Phase II of the Leukemia gig. Unfortunately, Ethan’s counts were too low to do the chemo (spinal tap, intravenous and oral). His counts needed to recover from the last round of chemo before proceeding with the next.
Twice we reported for duty at the Cares Unit Children’s, got all comfy in a room, played with the Child Life Specialists, completed paperwork and prepared for a day/week of chemo. The first time, we were told to go home and the Doctor believed Ethan’s counts would return to normal after a week long break. We return the following week; go through the same routine as I mentioned above, just to be told once again, his counts were to low.
Let me start by saying that Cancer is a real schedule hater! It’s a horrible illness but when it throws a wrench in the plan to get better, it really makes us mad! Ethan’s in a hurry to get on with life! He knows by delaying treatment means delay in getting past all of this. Amazingly, patience is one of the biggest lessons I’ve learned over the past few years! Ethan will eventually learn that as well, we’re just not sure he’ll ever be patient with treatment – and why should he?!
Although the past two weeks should have been treatment weeks, it was nice to have Ethan feeling well and carrying on with his summer! We’ll try to start treatment again after he returns from Camp.
A huge highlight this week as the routine MRI to check the status of the brain tumor. Now, I have yet to see the written report but our fantastic nurse and friend Anisa, shared the good news with me over the phone. I did exactly what I do every 8-10 weeks after a scan. I try to prepare for what could be news that may turn our lives upside down, simply with one phone call. Miracle of all miracles, our friend was ecstatic to read a report stating all the areas of improvement. As thankful as I am that God gave us this news, I am equally as thankful that Anisa got to deliver it!
At a high level the report stated that all the areas of the brain either were considerably smaller, non-enhancing or no longer visible! What a miracle! This has to be the best MRI we’ve had in years! There is no way to explain it. It’s plain and simple, the outpour of prayers from friends and family are being heard loud and clear. THANK GOD!
Ethan has only been gone for a few hours but life already feels like it’s come to a screeching halt. Tracy and I haven’t had this much down time in months. I am not sure we’ll know what to do with ourselves! Well, we have until Wednesday morning to figure it out! We’re just thrilled knowing that Ethan is having a blast at camp. Just as a typical little boy should!
Thanks to our friends the Keuck’s for letting us spend so much time with them during Kevin’s all too short return home from Iraq. We had a great time and can’t wait until your family is all together again - for good! Our prayers are with you!
Our most sincere thanks to the following families, our own special “Cheering Section”, Salerno’s, Dunning’s, Clouse’s, Archer’s, Rallis’, Johnson’s, Shanno’s, Anne Lewis, Carol Versace, Cindy Assmann, Lisa Ball for the gift cards! We can’t thank you enough for the gift of ease! Thanks for simplifying life for us!
Thanks to the Drake family for the Harley T-shirt for Ethan and the toy for “Harley” the pup! You are too kind. Both boys love the gift!
Thanks to Mary Clouse for the custom T-Shirts for the Grimm Family. If you’re curious to know how they were “customized”, you’ll have to ask one of us! It’s a hoot and so true!! *Hugs* to you Mary!
A special thanks to everyone for all the prayers that have been offered up for Ethan and our family! Your prayers have shone through all the dark clouds!
Many blessings,
Tracy, Marcy, Asia and Ethan
Sunday, June 26, 2005 10:22 PM CDT
Hello from the Grimm Family! Once again, our updates are delayed due to our crazy schedule - which is not all inclusive of trips to the hospital! Thank the Lord!
In our last update, we were preparing for a test to see if Asia was a genetic match for Ethan. Asia had a 1 in 4 chances of being a match so we could use her stem cells to rescue Ethan's immune system if a stem cell transplant was a possibility for treatment. With an extremely sad heart, we must tell you, Asia was not a match.
As terrified as Asia was when we asked if she would be tested, she was equally as disapointed when she called home from cheerleading camp and asked if we had the results. Obviously, this is not the news we wanted but we are confident Dr. A and others will point us to a treatment plan - we're confident it will be the best choice!
Ethan started his first week of Phase II treatment last week. It included a spinal tap w/ chemo, iv chemo and 4 days of chemo "pushes" topped off with oral chemo taken at home. It was pretty tough on E. His only complaint was of tummy aches(heavy acid indigestion)but most people would not know a thing was bothering him. The treatment just slowed him down a notch. He was only able to manage 12 games of bowling and golf lessons with his buddy Michael last week! That's E's idea of "slowing down".
Our puppy, "Harley" Davidson Grimm is almost 16 weeks now. We love him to pieces! He is beautiful, smart and quite fun to have around. His only issue is his sleep pattern. He is still such a baby that when we wakes up in the middle of the night and we are not there, the barking starts. He just wants to be with his "pack" . Well, his "pack" needs him to sleep in his very own deluxe puppy condo (kennel). The Grimm family is a bit sleep deprived but hopeful our little one will adjust to separation. At least for 8 hours at night!
On Friday, we decided to delay our trip to the hospital for chemo by about 2 hours so we could go to the airport for a special landing. Our friend Kevin, was returning home from Iraq after being gone for almost a year. We hope to spend time with him before he returns to Iraq. Seeing him made the chemo trip much easier to handle. (Check the photo album for pics!)
Baseball ended last weeked for E. He was not ready for it to be over with so soon! His team and Coaches were the BEST! If there was any group that could lift his spirits, it was his team mates and Coaches. Huge thanks to the Falcon's White Team members, their families and Coach Quigley and Coach Ostronic! Thank you for allowing Ethan to feel like a typical little boy.
Ethan will begin week II of Phase II of treatment this week. It looks as though it will be chemo 4 times a week, oral chemo daily and a couple spinal taps for the next 35 days. We will speak with his Dr this week to see what are our next steps will be. It is still unknown if we can even consider an unrelated donor for a transplant. We suspect given Ethan's complicated history of treatment, it most likely won't be recommended. We believe this leaves us with the 3 year Leukemia plan. Our prayers will be for more treatment options and clear direction on the right plan for Ethan.
Please keep Ethan close in your healing prayers. In addition, please pray the Doctors find the right treatment for our son.
Blessings,
Tracy, Marcy, Asia & Ethan
Saturday, June 11, 2005 2:31 PM CDT
Hello everyone! Ethan finished his true final round of chemo in the first phase of treatment this week (I misspoke in my last update and thought the previous week was the final round, he had one more round in the spine) and a bone marrow test. The bone marrow test result came back awesome! No more leukemia!!! Thank God!
E had tremendous help preparing for his chemo this week. On Sunday, Ethan got the thrill of his life! Our wonderful friend Natalie arranged for a little surprise for our superboy - his very own Harely Rally!
Tracy's rental Harley was the first surprise for Ethan. We've never seen him so excited than he was as Dad drove up on a bike! Tracy told Ethan he was going to find a "gang" to go on a ride while he ate breakfast and got dressed. Ethan sat nervously on the front porch waiting with his dog "Harley", wearing his Harley Davidson shirt, waiting for his Dad to return for a ride.
E heard the sound of the bike and was thrilled to see his Dad turn the corner, then uncle Todd and cousin Nate, then friends, Rick and Lisa - and 16 other bikes! The whole neighborhood rumbled! It was awesome!
Friends from the Council Bluffs Police Department presented Ethan with a Harley Davidson Leather vest. The Burkey's and D R Painting gave him a custom painted helment (complete with flames, his name, a hawkeye and appropriatly, a superman symbol) and some very special friends from Omaha, Blair, Tekamah and Elkhorn joined Ethan for a fantastic ride through Council Bluffs! Now, how cool is that!?
Asia and I also got the opportunity to ride on a Harley too! It was our first time on a bike! Ethan and Tracy led the "gang" and started the rally with a "Let's Ride!"
After the ride, friends Matt and Jill opened up MJ's for pizza and pop for everyone. It was a great end to a fabulously fun day!
We can't even begin to tell all those involved in Ethan's Harley ride how much it meant to him (and us)! Thank you for such a great day! Your the best!
This coming week, we meet with Dr.'s to determine the next step in treatment. The Oncologist proposed a stem cell transplant using a donor, preferably, Asia. This is different then the Stem cell transplant he had in 1999 where they used his own stem cells. We will have tests done on Tuesday to determine if Asia is a match. There is a 1 in 4 chances she could be. Please pray she is a match.
We continue to work with a Naturopath as well as the Oncologist to determine the best treatment plan for Ethan. Please continue your prayers for Ethan and his Doctors. May they find the right plan for our little Superkid!
Thank you to everyone who visits this site! Ethan loves reading the guestbook entries! He checks them daily - if not more!
Tracy, Marcy, Asia and Ethan
Thursday, June 2, 2005 9:24 PM CDT
Our apologies for the delay in providing an update from Ethan's treatment this week. We've just enjoyed reading all the wonderful messages so much, it's hard to remember to provide an update! Our entire family is thrilled and overwhelmed by all the kind words of support! Thank you for brightening our day!
Ethan completed his final round of chemo in the first phase of his treatment on Tuesday. Tracy spent the day at the hospital with him so I could return to work. Ethan was thrilled to get to spend the day with his dad, even if most of the time was spent receiving his treatment at clinic! Hanging out with Dad,being spoiled by Anisa and Claudia (his nurses)and everyone else at the Clinic, made the treatment breeze by without incident.
Once again, Ethan handled it like a champ! Not a single complaint. Just a request to go home and help dad clean out the garage. I returned home from work and there he was, proud as could be of the clean garage! Ethan's special touch, he asked his dad to light a "smelly" candle so the garage would smell good too! Ethan's smile melted all the worry of the day away.
Memorial weekend was nice and relaxing. Ethan had 2 transfusions on Friday which prepared him for the long weekend. We call it "Go-Go" juice......it helps Ethan to go-go-go!
Later this weekend I will update our pictures on this site. Ethan is sporting a new "look" and he wants to post the new pictures. He asked our friend Lisa G. to shave his head this past weekend. E wanted to "bald" his head for Summer. It's cool!
This is the third time in the past 6 years that Lisa has had the unfortuneate honor to shave E's head. His hair is the one thing Ethan seems to be able to control. We never told him he was going to loose his hair, it just didn't seem to be an important detail. With all there is to worry about with cancer, hair is just not on top of the list for Ethan.
Ethan has Dr. appointments scheduled for Friday. The appointments will give us direction and next steps for treatment. Please continue to pray that the Doctors will make the right decisions for treatment and that Ethan's body remains strong to endure the challenge of the chemo. Help us pray for complete healing.
Many blessings,
Tracy, Marcy, Asia and Ethan
Thursday, May 26, 2005 8:37 AM CDT
WOW! How awesome to see all the messages posted to E's website! It has been the highlight of his (and our) day to see if there are new messages posted! Thank you for the strong words of encouragement!
As I mentioned, Ethan was scheduled for another round of chemo this week. This was the 3rd of 4 rounds in this phase of treatment. He handled it in his typical manner, just like a champ! E slept most of the day and woke the next morning as though nothing happened!
We were fortuneate that his Doctor decided to take him off the steriods. He was suppose to have 2 more weeks of them. His little face is cute and chubby and his appeitite is raging!! Now, nothing more makes a mom happy when their kids clean their plate but Ethan seems to be a bottomless pit! It's hard to keep up with the orders!
Tracy, Asia and I get a kick out of Ethan's steroid behavior. If there is a food commercial on TV, Ethan comments on how great it looks. If we drive by a fast food restaurant, Ethan comments on the WONDERFUL smell (YUCK!) He told me the other day(as he rubbed my arm and looked at me with those big brown eyes)"wouldn't it be nice if the two of us went to luch?" It was 9:00 am and he just finished 2 bowls of cereal and scrambled eggs and toast! I can't forget to mention, he told me all week long that I am the BEST cook in the whole world! Although this behavior is due to those awful steriods, food gives him some comfort and we'll take it anywhere we can get it!
The next round will be Tuesday and we will find out what is on the agenda for Phase II. As I mentioned before, E's Doctor has to put together yet another "Ethanized" plan of treatment. We are very thankful for the careful thought being put into his treatment plan!
Please continue to keep up the prayers! For those of you who get the opportunity to see him on a regular basis, you know he acts as though nothing bothers him! His spirits are great and we owe this to all of you! Your prayers and words of support continue lift him more than I can tell you. ** For the first time visitors, please check the journal history for a recap of how far Ethan has come. It is the first Journal entry**
Have a wonderful weekend and thank you again!
Tracy, Marcy, Asia and Ethan
Monday, May 23, 2005 10:02 AM CDT
We've had yet another miracle!!
As we prepared for Ethan's second round of chemo last week, his Dr. decided to do a bone marrow aspiration while he was asleep for the spinal tap. The results..........
After ONE abbreviated round of chemo, the marrow was CLEAR!! Ethan has already managed remission just after ONE round of chemo!! This is truly a miracle!
As much as we wish we could say, ok, we're done now, this is not the case. We have to continue down the treatment path. What this news tells us is the careful thought Ethan's Dr. put into this "customized" treatment plan for the kid who has had too much already, made the right decision. We know she struggled, as did we, whether or not treatment of any kind would be worth putting him through. We simply did not know if his little body could handle more.
Besides being a bit tired and a little grumpy from the steriods and lack of playing Baseball, Ethan is doing remarkably well! To see him, one would ever believe he has been through as much as he has over the past 6 years (Read journal history for the "recap" of the past 6 years). He is truly are miracle child - a regular SUPERBOY!!
E has his third round of chemo scheduled for tomorrow. Please continue your prayers so that his body may remain strong enough to withstand the treatment and fight the cancer!
Prayers of THANKS to Mother Theresa, Pope John Paul, St. Peregrine,Padre Pio, The Blessed Mother and her ever-loving Son, Jesus!
Many Blessings,
Tracy, Marcy, Asia and Ethan
Monday, May 23, 2005 9:03 AM CDT
Hello everyone!
Fist of all, Tracy, Asia,Ethan and I would like to thank everyone for the prayers and the well wishes! You have truly lifted our family's spirits!
Thank you for visiting our new website! It will make sending updates out much easier and we now can include pictures! It's a free service offered to families and we hope you book mark the web address and visit often!
For those of you who may not know Ethan's complete history, let me recap (it's not possible to be brief!)the road he has been down over the past 6 years.
Our journey began, May 12, 1999.Ethan was diagnosed with a malignant brain tumor (PNET)at the age of 5 years old.
Ethan's treatement consisted of Craniotomy to remove a very large tumor in the front left lobe of the brain. To follow was 5 rounds of intensive chemo (all required 3-5 hospital stays) and a stem cell transplant (required a 4 week and 2 day hospital stay, but expected 8 weeks!)
Just 3 months after completing this protocol,in April 2000, Ethan experienced a very serious relapse. The PNET had spread through out the brain and had now moved into the spine. The prognosis was not good and we were give 3 months even with radiation treatment.
The next step of treatment was to move forward with full blown radiation to his entire brain and spine. Knowing that there would be long term side effects that we would have to work through. We kept focusing our attention on the future, one day at a time.
At the time Ethan was going through radiation, we met a very special mother named Mary Jo and a couple Larry and Jackie, who had recently lost their son to cancer. The meeting of these individuals would completly change our direction and outlook on how we could take an active role in Ethan's treatement,from a natural stand point. With the help of some very wonderful people, we have focused the past 5 years re-building Ethan's immune system to enable him to prepare to win the battle against cancer.
In 2002, an exisiting tumor started to grow. Another craniotomy was performed in order to spare the optic nerve from further radiation. During that surgery, Ethan suffered two strokes and was completly paralyzed on his right side, unable to speak and swallow. Knowing the types of risks that are involved when performing surgery, this was not something that anyone expected.
Ethan endured 1.5 years of physical, occupational and speech therapy. He has since regained his speech and approximately 90% of his leg movement and about 70% of his right arm movement. Ethan simply learned how to do most things with his left hand and now only uses the right hand for eating and writting! His determination is amazing!
Over the next few years, Ethan had NOT developed any "new" tumors, only existing ones from the 2000 relapse began to flare up. We do follow up MRI's every 8-10weeks just so we can stay on top of things. If one does show change, we elect Gamma Knife as a our choice of treatment. Ethan has now been treated 5 times with the Gamma Knife. For whatever reason, it seems to really work on these stuborn tumors!
All this brings us up to where we are today, Ethan is now 11.5 years old. On April 8, 2005, we were told Ethan has now developed Leukemia. The Leukemia is caused by the treatment he received 6 years ago. Ethan has ALL and AML and is currently being treated.
As one can imagine, this has not be any easy road for our family to travel. For a reason we are not yet privlaged to know, this has been our cross to bear. Through our faith and prayer, we have managed to work our way through the tough times and learned so much along the way! We wouldn't be truthful if we said it was easy. There have been times of great dispare and sadness. However, Ethan's amazing strentgh and desire to be a normal little boy, has kept us forward facing.
Ethan teaches Tracy, Asia and myself about living life to the fullest, each and every day! All the miracles we have received over the past 6 years, reconfim our prayers are being heard.
May you be as blessed as our family!
Tracy,Marcy, Asia and Ethan.
Friday, May 20, 2005 10:02 PM CDT
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