Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Louie Guest Book        Photo Album UPDATE: 6-14-07 Hi, We just wanted to share how Louie is doing & also to let you know we are expecting a new baby at the end of October! We are very excited & thankful for another answered prayer. The girls are very excited & we are hoping Louie feels the same! Louie has been doing well in therapy. He started a new class at Children's hospital where he uses pictures to communicate his needs. He made a buddy too! It is a little boy the therapist thought he may battle with because they like the same toys but they are doing well together...pretty neat! We have his summer lined up with a decent amount of therapy, this is an ongoing uphill battle with autism. Therapy, meetings to keep therapy, services etc. Louie broke my heart today at Physical therapy. He was practicing steps in the hall & was watching 2 boys wrestle & got teary eyed & sad. I still am not sure why, if it scared him or maybe awareness of something he misses out on. He does this now & then & it tears me up. He fell down the steps with me right behind him & had to get a few stitches 2 weeks ago. He handled it like the champ he is though, much better than I did. One more scar to his collection! Mike will be taking him to St. Jude in June for his next MRI, we then get to go to six month visits for checkups! Pretty cool. Sometimes we get sad & think of the things he has or may miss out on....all it takes though is one of his hugs & giggles & "tickle" & it cures all our pain. He is becoming more & more affectionate & is starting to realize that his sisters can be pretty fun! This is a beautiful thing to watch. Please pray for his continued healing & for us to be able to fulfill his needs with love & compassion. God Bless you all & thank you for still checking on our little trooper, our gift from God. With love, The Hentz's UPDATE: 4-19-07 Hi, We just wanted to share how Louie is doing & also to let you know we are expecting a new baby at the end of October! We are very excited & thankful for another answered prayer. The girls are very excited & we are hoping Louie feels the same! Louie has been doing well in therapy. He started a new class at Children's hospital where he uses pictures to communicate his needs. He made a buddy too! It is a little boy the therapist thought he may battle with because they like the same toys but they are doing well together...pretty neat! We have his summer lined up with a decent amount of therapy, this is an ongoing uphill battle with autism. Therapy, meetings to keep therapy, services etc. Louie broke my heart today at Physical therapy. He was practicing steps in the hall & was watching 2 boys wrestle & got teary eyed & sad. I still am not sure why, if it scared him or maybe awareness of something he misses out on. He does this now & then & it tears me up. He fell down the steps with me right behind him & had to get a few stitches 2 weeks ago. He handled it like the champ he is though, much better than I did. One more scar to his collection! Mike will be taking him to St. Jude in June for his next MRI, we then get to go to six month visits for checkups! Pretty cool. Sometimes we get sad & think of the things he has or may miss out on....all it takes though is one of his hugs & giggles & "tickle" & it cures all our pain. He is becoming more & more affectionate & is starting to realize that his sisters can be pretty fun! This is a beautiful thing to watch. Please pray for his continued healing & for us to be able to fulfill his needs with love & compassion. God Bless you all & thank you for still checking on our little trooper, our gift from God. With love, The Hentz's UPDATE: 2-22-07 Hello to all of Louie's faithful followers. We appreciate you checking in with your thoughts, time & most of all your prayers. Louie & I leave for Memphis this Sunday. On Monday he'll have an MRI on his brain & spine & then a spinal tap to check for cancer cells in his spinal fluid. Tuesday he has an eye appointment, his eyes have been doing some interesting things in the last few weeks!! We get to hear the MRI results after this & Mike will post an update when we know something. It is always bittersweet, our trips to Memphis. We have been very fortunate to have clear scans since his tumor was removed. Our life can get so consumed with his autistic behavior & trying to bring him in our world again. Nothing like a trip to Memphis to give a good old reality check & to relearn the lesson over & over to just be so very thankful for this time we have with Louie & to just leave it all in God's hands. We are so fortunate to get to be there this visit with some of our St. Jude friends. Please pray for Louie, Easton Wargo, Carson Braun, & Tim Sheets to all have clear scans. Time with our St. Jude friends, seeing all of these guys blossoming is pretty amazing. It is heartbreaking to sit in the halls of St. Jude waiting & watching as families are just beginning their journey, but there is no better place for them & you find comfort in that. With love, The Hentz's UPDATE: 5-18-06 Happy Mother's Day! On a special day like today we can't help but think of all the mother's and friends of ours who have lost their children over the last year. As I read through some of their Caringbridge sites tonight, I was painfully reminded how precious each moment with them truly is. It seems impossible after all that we've been through that we need to be reminded of this but sometimes we do. I am very happy and very proud to say that as of today Louie is one full year off of chemo. And what a year it has been. We have had a lot of ups and downs over the last year, far too many to list here, but our son is tumor free and happy and for that we praise God everyday. I'm also very excited to share with you that Louie is starting to show some progress through all of his many Autism treatments. Over the last two weeks he has started to repeat words again. This is something that he was starting to do before he got into his cancer treatment. I can't describe the joy that we feel when Louie sings a song or repeats words like Mommy, Daddy and I love you. We still have a long way to go but we feel confident that we can get there. Of course we are never to proud to ask for your prayers to help us, especially next week on the 25th when Louie and Kerin go back to ST. Jude for his next MRI. Please be patient with us. With all of Louie's doctor appointments and therapies we haven't been updating very frequently but we'll try to do a better job of updating in the future. Thank you for continuing to check on us. Peace & love to you all. Praising God, Kerin & Mike PS. I would be remiss if I didn't offer a special thank you to my wife on this Mother's day. She is truly my son's advocate and she has been the difference maker in his progress. UPDATE: 3-23-06 Louie's MRI was good!!!!!! We are thanking & praising God for Louie's continued clear scans & for one very amazing hospital with a very, very amazing staff! Wow, I think we tend to get spoiled at St. Jude & have high expectations of care as always. They just blow us away sometimes with the help & input provided from all kinds af Doctors & Nurses, all in one day! We saw Physical Therapy, a wonderful Radiologist, Neurologist, Oncologist, Nurse Practioner & numerous caring nurses who I honestly do not know how they keep it up day to day. The weather was nice Thursday & Louie recovered pretty quickly from sedation so we shuttled over to the Target House(our old home) to play on their cool playground! We are so hopeful that there are still many paths to explore so that we can learn more about Louie's behavior & how to help him. Needless to say, this means the world to us. UPDATE: 3-2-06 Louie's MRI was good!!!!!! We are thanking & praising God for Louie's continued clear scans & for one very amazing hospital with a very, very amazing staff! Wow, I think we tend to get spoiled at St. Jude & have high expectations of care as always. They just blow us away sometimes with the help & input provided from all kinds af Doctors & Nurses, all in one day! We saw Physical Therapy, a wonderful Radiologist, Neurologist, Oncologist, Nurse Practioner & numerous caring nurses who I honestly do not know how they keep it up day to day. The weather was nice Thursday & Louie recovered pretty quickly from sedation so we shuttled over to the Target House(our old home) to play on their cool playground! We are so hopeful that there are still many paths to explore so that we can learn more about Louie's behavior & how to help him. Needless to say, this means the world to us. Thanks you again for checking on Louie. God Bless, Kerin & Mike UPDATE: 2-16-06 Thank you for checking in on Louie, we are so very touched how many people pray for him & still check his website for updates. We had hoped someday very soon that we would not have too much out of the ordinary to share about Louie….but his journey of healing & progress is going to be a long haul, yet one that we are so very grateful to even have. His next MRI will be on February 23rd. We will also get to visit with a Neurologist from St. Jude for the first time & catch up with the Sheets family from Utah(caringbrige.com/ut/timothy). We continue to focus on learning more about autism. We decided after his official diagnosis in December along with the fact that St. Jude & Cinti. Children's have never seen side effects to cancer treatment like Louie's that we really need to learn as much as we can about autism. We sent Louie's urine to be tested & were surprised to learn that he cannot tolerate gluten (wheat,oat barley). There is much research about autism actually being a digestive issue & then foods(like gluten & others) can in turn “leak” through & act as in a way as morphine. This explains the spacey, lack of eye contact etc. Louie's test basically told us he fits into this category. There is so much more to this but I won't go on & on….we are so very hopeful that along with his intense therapy, diet changes etc. that we may actually have a little control for once over helping our son. This past week we had the most productive, beneficial four hour clinic visit ever! To have respected doctors support me in my new findings & then recommend doctors(GI, allergists) which I thought I'd never be able to get a referral for was so very thrilling. Louie has really made some great progress since we last wrote. This is a disease that is incredibly sad, to me it really is another way of “losing your child”. My goal/dream is to beg St. Jude to one day take on autism research. Wow, what a powerhouse that would be to help the growing number of children affected. Although it is not a life threatening disease it does take your child in other ways. Ways some parents never get back. Thanks again for checking in on Louie, you'll never know how much support this site & your notes have given us. We always welcome prayers for Louie's continued healing & clean scans. UPDATE: 12-22-05 “May you have the gift of faith, the blessing of hope, and the peace of His love at Christmas and always”. The above was taken from the St. Jude Christmas cards I purchased but have not sent yet! We love the message & hope everyone reading has a blessed Christmas & promise a “real” card next year! Here are some Louie updates: We are ramping up his ABA therapy & are now up to 30-40 hrs per week. He has at least two sessions per day but many days four different therapies. All of his therapists/students are amazing. We have been given so many gifts since Louie has been diagnosed….Loving family & friends, Wise Doctors & surgeons, caring nurses, therapists with hearts of gold, awesome teachers for the girls, even a new best friend for Abby so she doesn't feel lonely with so much Louie therapy going on around her. He took the Autism test at Children's Hospital last week & we will learn the results next Wednesday. We know he is on the Autism Spectrum but not quite sure where he falls. He may have been born this way or the treatments may have damaged his brain similar to that of an autistic child. We are so very proud of him. His days can be pretty grueling. He is beginning to sign more & follow commands & we get glimpses of him being a “normal” two year old boy. He loves cars & trains now & roughhousing. Mike says “no more therapy toys”! It is awesome to see him progress. We always welcome prayers for Louie's continued healing & clean scans. We would like to ask that you pray for our friends STILL undergoing treatment. AND to pray for all of the families whose beautiful children have touched our hearts & are now with Jesus. God Bless, Kerin & Mike UPDATE: 12-5-05 What an emotional weekend it has been, from the highs of Louie's clean MRI to the lows of seeing friends that are still fighting for their lives. Please keep Hayden and Tyler high on your prayer lists. It was very heartbreaking to see them in pain without their usual beautiful smiles. Ronell is hanging tough & faithful as always but fighting nausea & very bad headaches from her treatment. We want to thank everyone again for their support and prayers. We are so blessed to have such wonderful families, friends and neighbors. I still remember driving down the street last year with Louie as he was coming home for good, only to find the street plastered with signs welcoming him home. What a great feeling that is to come home and be together. It's something I hope none of us ever take for granted again. I also need to take a moment to brag about my wife, who successfully completed her 2nd St. Jude Half Marathon (13 miles). She was able to raise over $1300 dollars for the hospital. Thank you to everyone that donated (donations are still possible by clicking the link at the bottom). Louie and I were able to run with Kerin for a block as she passed the hospital and yes I was winded after 1 block. Congratulations to Team Easton, they raised $11,735! Easton and our friend Carson Braun also had good scans). We have a big week coming up as Louie's therapies kick into high gear (30-40 hours a week). So as always we'll ask you for your prayers again as we try to get Louie's development back on track. God Bless, Kerin & Mike UPDATE: 11-21-05 Time is going very fast! Happy Thanksgiving to everyone. We have so many blessings to be thankful for & I know you all do too. Louie has been very busy with therapy & is beginning to use sign language for his favorite things. We are trying build up his new therapy time to 30-40 hours a week. Two wonderful U.C. students have begun working with Louie & he will begin at an Autism school in Ohio on December 5th. He will go for two hours a day & we all hope to increase our "therapy" & signing skills in the next month so we can really step it up. Louie is now in a little play group(or mom support group)with two little boys, Nicky & Alex. These little guys need prayers too. All three are on the "spectrum"(Autism Spectrum) & all three are so very different & so very sweet. Memphis time creeps up quickly & we are getting anxious as Louie's next MRI approaches. We go to St. Jude on December 1st & his MRI is on the 2nd. The St. Jude marathon is the 3rd & then we will fly home that night. Our friends the Wargo's will be there this visit too so we are looking forward to seeing them & hopefully the Bowen family(pray for sweet Easton's continued clear scans please!)We ask for your prayers in Louie's healing of cancer forever & for prayers for him to communicate with us better. Four children have relapsed & need your prayers. These families have all endured so very much & must go through it again....my heart is so deflated. Abby's preschool teacher Cathy Kirtley also passed away, pray for her family. God Bless, Kerin & Mike UPDATE: 10-8-05 This past Monday Louie got in to see a Development Pediatrician at Cinti. Children's. They believe for whatever reason(hmmm, experimental chemo to the brain,radiation, surgery)he has autistic spectrum disorder. This is a pretty broad spectrum that many little ones fall in but he will eventually get in to their Autism center to be tested “officially”, probably in a few months. Waiting lists have become our new frustration, nervous that we could be doing inappropriate therapy while his brain is both developing as well as healing. Things picked up quite a bit this past week with therapy thankfully & we are hoping to get started on some new treatment. Please pray for us to make the right therapy decisions as well as for the time, energy, & the best resources to accomplish this for Louie. A treatment plan called ABA was suggested & after we researched & talked to other parents it will probably be the way to go. A consultant will evaluate Louie at home this month & recommend a therapy plan & then train all of his therapists (new, old, family & hopefully a grad. student) totaling 30-40 hrs. a week of treatment. We will continue with his Speech, Occupational & Developmental Intervention once per week. Louie will also get two new therapists (Speech & OT) from Children's hospital per week to add to his collection! It makes for a crazy schedule but we realized that the past 9 months of therapy haven't helped much & he needs a change. Autism is one thing you do not wait & hope it goes away. The girls are doing great in school, Mike is lacking sunlight from working in the basement but hanging in there & I am staying busy with Louie, my mom, & a couple of wonderful Catholic groups for moms & children. Trying to keep God first in our life regardless of our schedule & what comes our way! Thank you for checking in on Louie & for your continued prayers. I have been stepping up my training for the St. Jude marathon. Mike's sister Lou, my friend Stacy & her sisters & my friend Randy are going to make the trek to Memphis with me again in December to help raise money for the hospital. If you'd like to support our team please click on the bottom link. Thank you very much for all those who have already donated! God Bless, Kerin & Mike UPDATE: 9-23-05 Exhale. Thank God, the MRI looks good. We won't get the official results until tomorrow but it looks like we get to breathe easy again, at least for the next 3 months. Thank you for your prayers. We hope you understand how much they mean to us and we ask that you keep them coming not only for us but all of our St. Jude friends, especially Ronell, Jay, and Taylor. Kerin & Mike UPDATE: 9-20-05 We ask that you please pray for Louie's MRI to be clear this Thursday. Thank you for your prayers, please know how much they mean to us. God Bless you, Kerin & Mike UPDATE: 9-9-05 Be warned this update is a long one, so much going on lately! Louie is doing very well, we are asking for your prayers for his upcoming MRI in Memphis on the 22nd. This will be the first MRI where he has had no chemotherapy/treatment to stop the cancer so please pray that he has beaten this forever! We are going to drive this time as we waited too long to book the flight & St. Jude's wonderful discount no longer applies! I think the 7 hour drive may be a better choice than the airport chaos & it will be nice to have some down time with Louie. We were discussing having a Neuro-evaluation at St. Jude & possibly extending our stay which is why we waited but have decided to do all of that here at home. Louie has had 5 official school days now & he is doing great. The girls were very protective of him but have spent some time in his class & are OK with it now! He has a new OT & a Developmental Interventionist who work one on one with him in his class for one of the three hours. The first few drop off's were tough but Louie did not seem to realize what was going on…he does now & this makes it harder but at the same time we are very thankful that he is aware of what is going on & is responding appropriately. He has many new friends now that he quit biting! I was in tears leaving school last Thursday as many of his new little friends called out “bye Wouie, bye Wouie, all the way down the hall & out the door! So many ups & downs with Louie. Friday was his Endocrinologist visit(which he doesn't need for 6 more months since he is over 90th percentile in BOTH height & weight & all is well here!). We did get sent to the E.R. though where we spent the day because his eye was swollen shut from 2 mosquito bites! They thought he had an infection & were talking admitting him, running IV antibiotics etc! After the 5th doctor though, we made it out with a prescription & Benadryl & he recovered nicely. Check out the photo of Louie's eye. It was very frightening! I think he just misses the attention. We really need your prayers for his development. Mike & I met with a Neuro-Psychologist today at Children's Hospital & they will begin following Louie's for what may be a long time. We expected this & are glad to have help with the aftermath of radiation & chemo. I just pray that he will not grow to be a frustrated child with more medical needs than a little guy should have to have. His EEG to monitor for deep sleep seizures is on the 26th. This could explain why he learns & then loses skills & can be treated but we prefer he be seizure free & we just keep plugging away in Therapy! He is also on the waiting list for their Development & Disability Division & we are looking very forward to get things going here. On a very bright side we have a new puppy! Her name is Grace & she is a Golden Retriever(she is the daughter of 'Mel' up the street who posed with Louie in a St. Jude article!) We'll have to update the photos with some Grace shots, she is a sweetie! If you are local watch Channel 9 for Louie's St. Jude story! St. Jude Children's Research Hospital is giving away a beautiful Dream Home in Batavia, Ohio, valued at approximately $390,000. The Dream Home has been built by Fischer Homes and will be given away live on WCPO TV 9 on September 18 between 2-4pm. To reserve your $100 ticket and for more information call 1-800-537-1735 or visit www.stjudedreamhome.org (website for Ohio residents only) or you can visit the customer service desk of any Cincinnati area Meijer or Hancock Fabrics locations. You can also buy your tickets at The St. Jude Dream Home, every Saturday 9-5 or Sunday noon to 5. The Dream Home is located in the Lexington Run community in Batavia. Team Love for Louie will be running at the St. Jude Marathon again this year in December. Being home for part of Louie's treatment really made it hit home how amazing St. Jude truly is....an absolute blessing so ANYONE can focus on their child & nothing else. Raising money for the hospital is one of the only ways I can think to ever begin repaying the care & kindness we were shown & to ensure their research continues. Peace & love to you all. Praising God, Kerin & Mike UPDATE: 8-4-05 Summer has been great, we are even going to sneak in a beach vacation before the kids begin school. Louie is enjoying Kings Island with his sisters & friend Erin above. He loved the wave pool & got to go down a pretty cool water slide about 15 times with his big sister Morgan. Morgan joined the diving team this summer & made it to the champ meet which is the top 2 divers from each swim club. We have had much fun with all THREE kids this summer, Abby has finally turned into a little fish too! We are feeling ever so blessed & fortunate. Thank you for still checking in. Peace & love to you all. Praising God, Kerin & Mike UPDATE: 7-24-05 No broken arm! It looks like it was a sprain & using the splint for a few days helped. Our visit to check his arm out turned into a very helpful session with a wonderful team of Neuro-Specialists. We have all been trying to figure out how to get through to Louie & what we can do to help him progress in his development. We now have an awesome team of a Neurologist, Neuro-Psychologist, Neuro Oncologist & the list goes on, we are so very ready for this. We were hoping once treatment ended & Louie felt better he would begin to progress better but it is not happening. We are going to continue with the State Development program but move forward in working with Children's hospital more. We are very relieved & grateful to have experts who can work with us & to have Therapists who have access to & can bounce ideas & Louie's behavior off qualified physicians. They would like to rule out that Louie does not have seizures while he is sleeping so he will have to be monitored for 24 hours with an EEG. This was a bit of a shock, but they are just ruling it out because it is not uncommon with what he has been through. We thought seizures where one sure thing Louie DID NOT have. We believe she is thinking this could be a reason Louie learns skills & then loses them. Please pray for Louie & his team to help him progress. We would love for him to be able to communicate his basic needs to us, especially ouch & where the ouch is! Please keep Cole Walker's family in your prayers & all of our other friends. So many families like ours get the news of cancer each day. I spoke with a family from Iowa trying to figure out where they will treat their 17 month old son who has ATRT yesterday. They also have two older children like us & it is so heart-breaking & frightening to make this tough decision to leave your other children. Please pray & praise! Thanks for still checking on Sweet Lou! Peace & love to you all. Praising God, Kerin & Mike UPDATE: 7-13-05 We chose not to remove Louie's Ommaya reservoir after a long clinic visit Monday. He is doing great & we hope we made the right decision....thank you for checking on our son! UPDATE: 7-11-05 We have been really bad about updating, but only because we have been very spoiled enjoying Louie, Morgan & Abby as a family this summer just doing “normal” things!. We are trying hard to live as Ryan Trewin's mom Jenni says and remember that "Every day is a gift...use it wisely." It is so very easy to get caught up with things that are just not important. Our big focus now is Louie's development(speech, physical, etc). He was approved for additional therapy time through the state & we thought this was enough. He currently has speech, physical, occupational & developmental therapy once per week. However, we all agreed last week that he needs additional speech therapy as well. We are all guessing at what we can do to help him along & what is going on in his pretty little head. We think the right hemisphere of his brain works very well & that over time this will transfer to the left where the language piece is…we hope! We are going to work hard & hope he makes great strides in the next few months as a child's brain is developing until age 3 & we want to take advantage of this time. Louie will have one last surgery tomorrow to remove his Ommaya reservoir in his head…this was our choice & we pray the right one. We hate for him to regress or be re-traumatized but we felt like while he is used to this environment we should go ahead and get the last bit of hardware that does not belong out. We are just so very grateful to have him with us & have him happy! He is enjoying all of his cousins, aunts, uncles & grandparents so very much. So many special moments this summer that we will cherish forever! It seems like more memories of his surgeries & treatments creep up now more than ever. Abby had tubes placed in her ears today & I walked past all of the operating rooms where Louie's initial surgeries were & where he recovered. It took a lot not to break down. I know the nurses probably thought “what a coo coo mom, it is only ear tubes!” Thank you all for checking on Louie & for your continued prayers. We'd love to share more of his good stuff…sometimes it just doesn't seem right knowing that so many who read Louie's website are still in the midst of treatment or have lost their precious child. I have officially left work & therefore have a new email. My new address is kerin@fuse.net but I haven't used it yet! Trying to cut down my caringbridge & email time for better mental health! ha...was this ok Julie? Thanks so much again. Peace & love to you all. Praising God, Kerin & Mike UPDATE: 6-15-05 Louie's MRI was clear!!!!! Thank you for your prayers & for staying in touch! Thank you God for this time we have been granted with our son! Spinal tap in the morning & then we hope to be home in the evening. UPDATE: 6-9-05 I know it’s been a while since we last updated but there hasn’t been much to share. I think we getting lulled into normal life and it’s a wonderful but scary feeling. Well, nothing wakes you up like an impending MRI and next week we’ll be back in Memphis for Louie’s first post-chemo scan. If all goes well (and please, please pray that it does) we hope to pull his line on Wed. before we come home. The girls are excited about this they’ve been swimming almost everyday for the last week and they keep asking when Louie can get in the pool with them. I have a vision of them having splash wars and dunking each other by the end of the summer. OK, I have to take a proud father moment and brag about my boy for a minute. Last night, thanks to Kerin’s brother Al, we all went to the Red’s baseball game. This was Louie’s first game and I was hoping he would last maybe three innings but my son went the distance, the full nine innings and helped cheer the Red Leggers to victory. One year ago he was finishing up his first week of chemo. Last night he was finishing up Morgan’s leftover chicken tenders and fries. THANK YOU GOD! Peace & love to you all. Praising God, Kerin & Mike UPDATE: 5-19-05 NO MORE CHEMO FOR LOUIE! This Monday his counts dropped to a number below what is needed to remain on the final doses of oral chemo. We got the official word from St. Jude & Children’s that he can stop for what we hope & pray is FOREVER. What an incredibly awesome thing to know he can only feel better & better each day. We are so so grateful to so many! We would love to throw a huge party to say thank you to everyone but it just doesn’t seem feasible right now or something that Louie would enjoy either since he is not big on large crowds. We will think of a way though... Please pray for a clear MRI on June 14th for Louie. If this is the case his line & Ommaya reservoir will come out the following week. We ask for your prayers for our good friend Easton Wargo who has his first “off treatment” MRI tomorrow. I put his link below along with some other friends who could use your encouragement & prayers. We also learned of another young boy from our area today who has Louie’s tumor type & their family must make the decision for his treatment plan very soon. Please pray for them as well. The little boy is Jack Schuermann. We recall this point being one of our most anxious, not knowing which protocol to choose. I haven’t mentioned the girls lately & just thought I’d let you know that Abby is graduating from pre-school Friday & blossoming & maturing every day! Morgan is a busy little athlete with soccer & baseball. She also played Mary in her school’s Passion play this year & that was quite an honor. We put a couple of new photos of them donating their hair for Locks for Love. Thank you for sticking with us through all of this and God bless you. UPDATE: 5-12-05 19 days of chemo left. Life is great. God is great! There is not much more that Kerin or I can say. We feel so blessed and so lucky in so many ways. Peace & love to you all. Praising God, Kerin & Mike UPDATE: 5-2-05 Louie is down to four more weeks of chemo! IT ENDS IN THE MONTH OF MAY & we are so looking forward to his chemo freedom. Tomorrow is his last clinic injection of Vincristine which weakens his muscles(YAHOOOO). They will then give us a 21 day supply of oral chemo to begin at home the following week. That is it! Louie had to be admitted Friday night with a fever because his counts were very low on Thursday(340). He was very fussy & we were scared to say the least. They ran antibiotics, did a chest xray & cathertorized(sp?) him & his counts rebounded to over 9000 with the help of his G-shots(which he needs never again now). We feel so safe here at home as well as St. Jude as they are super cautious. We got to come home Saturday afternoon & are back to the business of therapy & keeping germs away. His next big day is June 13th where he will have an MRI at St. Jude. If the results are good all doctors have agreed that we can remove his central line & take out his Ommaya reservoir when we get back home! No chemo, no hardware….awesome to say the least! Praising God(learning & growing in spirit & faith), Love Kerin & Mike UPDATE: 4-21-05 Louie is officially home from his LAST INPATIENT overnight stay for chemotherapy! We pray that it is forever. So happy to update something so awesome to us! Sobbing with elation & so full of pride for our son! UPDATE: 4-16-05 April 16th…..I had to rewrite this date. One year ago was Louie’s first brain surgery to remove this tumor. He went in at 7:00 a.m. & came out around 5:00 p.m. This day we learned what Medulloblastoma was & that our hope that his tumor was non-malignant was lost. We are so very grateful for Louie’s surgeon & his team. Grateful for giving it to us straight up & then remaining with us until we were strong enough and educated enough to move on from the Neuro world to the Oncology world. I can remember walking to the 5th floor (Oncology) at Cinti. Childrens Hospital just to get a glimpse of our future & leaving with a terribly sad feeling of hopelessness & just not wanting to be a part of “that world of cancer.” Boy, it is a club no one ever wants to be a part of but once you are for some crazy reason(possibly God)(for sure God)you are given strength, hope, new friends, friends for life & a fighting chance. Today Louie is walking, laughing, & a much happier child than when all of this began. We had no idea how much pain he was in. We are so in awe of him…and our daughters. Yesterday we delved into the world of Endocrinology. I had high hopes Louie would not have a need for this medical field but quickly learned I was wrong. We have another very caring doctor to add to our collection though. She is from St. Jude & in my book if any physician CHOOSES to work at St. Jude among so much suffering, I am honored that they care for my son. I brought Louie’s radiation photo showing all the areas of his head that were treated. She immediately said he will have problems because of his pituitary gland being radiated. My heart sunk, but quickly recovered. She said what you have been through this is nothing. Whatever may happen(growth issues, thyroid issues, delayed puberty, early puberty etc) it can all be fixed easily. It could take up to 9 years for these issues to pop up, so we will be a guest at Children’s for many years! It was funny, two other doctors just wanted to observe Louie & kept saying how much we have been through in the last year & I just didn’t feel so bad with all of our good news/scans. It reminds me of how women are given the grace to forget the pains of pregnancy & labor so that you can just keep on making these beautiful creations! If I really want to conjure up Louie’s suffering I can but it doesn’t really help anything/one. Pray for good counts, next Tuesday we SHOULD begin Louie’s LAST INPATIENT ROUND of chemo!!!!! Hopefully he will not be delayed & this final 6 weeks of chemo will breeze by. Thank you so much for your prayers & for checking in. I have met many people recently who check on Louie regularly & I had no idea. It is really touching & means so very much. It is part of our strength so don’t hesitate to sign in, even to just say your checking. I added a new prayer request to our permanent list below. Please pray for peace, faith & understanding for our friends & for everyone. Peace & love to you all. Praising God, Kerin & Mike UPDATE: 4-8-05 We have been absolutely spoiled the last 3 days with some wonderful weather and Louie has been loving every minute of it. I’m proud to say that our boy can walk out our back door and up a small hill to get to his swing set at the end of our backyard. The problem is getting him off of it once he gets there. There will be many hours spent pushing that swing this summer and that is fine with us. The scary part is that Louie’s ANC is only at 40 which is dangerously low and makes him a high risk for an infection. But we’ve been down this road before and we’ll continue to pray that God keeps him protected during this stretch like He has in the past. I feel like we are really dodging bullets here. It’s unbelievable for a one-year-old child to dodge a cold or fever for a year but to do so while we intentional beat down his immune system is beyond us. Thank You God!!!! As we get excited about getting closer to the end of treatment, we realize that we still have a lot of work ahead of us. Louie is getting up to speed physically but we are still pretty far behind with speech and development. Please continue to pray for his mental development and for his continued ability to tolerate these last couple of months of chemo. And please continue to pray for all of those other families in this battle as well. As always, thank you and God bless you. PS, added some new photos UPDATE: 3-24-05 Lesson In Patience! We just learned Louie’s counts are STILL too low to begin treatment. We are so very eager to get the clock ticking on these final ten weeks of chemo but know that we must be patient & wait for the right time. I am feeling guilty for wishing him to be inpatient on his second birthday, feeling guilty for not just appreciating that we are still in this battle & that we are winning. Someone told me recently that God gives you things in installments sometimes so that you not stray & think “thanks Lord, now back to our old life”. I pray that what we have learned about faith will only grow regardless of the outcome. We are all shocked at Louie’s numbers because he is looking so very healthy, eating like a fiend, is much more responsive & playing like crazy! All of the rest of us have come down with the flu, ear infections, croup etc. & Louie gets none of it! It just doesn’t make sense since he has had no chemo for 3 weeks but we will try again Monday & hope to begin these last 10 weeks of treatment & make all of this a memory very soon. I know that anniversaries of when children are diagnosed bring so many memories flooding back. Louie was diagnosed last year on Good Friday & this year it happens to be his birthday. Last year we were in shock to learn of the size of this mass in his head & clueless about what was to come. Louie was sent home Easter Sunday because of a mistake in medications to await his first surgery. What a strange, sad Easter but we got to share it with both sides of our families. The doctors were amazed that he had no vomiting, lethargy, etc. & said to watch for these signs. OH BOY, they came 2 days later. We were terrified, he began vomiting, we could not awaken him. We rushed him to Children’s hospital ourselves & got stuck in a.m. rush hour traffic, decide to drive in the emergency lane & got a flat tire(I recall this being the 1st time both Mike & I yelled to God for help & to ask why)! We used our cell phone to call Children’s, then called for an ambulance to meet us to finish our ride, but we decided to keep driving on the flat because they were confused of our location. I will never forget Mike jumping up & down in the rain downtown Cinti. flagging a police officer with the passion of the amazing father that he is. So many tortures for Louie ensued from there, too many to name. One highlight though, was the night before surgery he got a blood clot in his leg & we had to decide to wait months for this clot to clear(blood thinners & surgery were not an option)& wait for brain surgery. We all agreed that this tumor needed to come out as soon as possible & we had to pray for the clot to not move to his heart. This prayer & so many others were answered for us this past year. It would be so very wrong to not PRAISE GOD for answered prayers & lessons learned. We also want to praise you too Louie, for we hope someday you will be able to look back with pride at everything you have gone through & know what an absolute joy you are for our family. Happy 2nd Birthday Sweet Lou, WE LOVE YOU!!!!!!!!!!! Also Louie is featured on page 17 of the Winter addition of Promise Magazine, in an article about the conformal radiation that he received. You'll also see a very encouraging article about how they are getting close to curing Louie's type of tumor with a single pill. No Chemo and no radiation! Peace & love to you all. Praising God, Kerin & Mike UPDATE: 3-15-05 No chemo yet...We were surprised to learn today that Louie's counts are too low to begin his next inpatient round tomorrow so we will wait one more week to begin. He has only two more of these left. He looks so very healthy & seems to be progressing in his speech & responsiveness. His next scan will be the first week of June & from there we hope to free him of his central line & Ommaya reservoir. Louie loves the water so it would make for a much nicer summer if he could lose the line. We don’t have a lot more to update which is always good news. So many of our friends are hurting deeply now & we cannot help but feel their pain & hurt along with them. Noah’s family went home to New Mexico & are now set up with hospice. My cousin Garrett was diagnosed with Non-Hodgkins lymphoma. He & my aunt are in Rochester MN where he has begun treatment. A rough road for a 19 year old between childhood & adulthood. Please pray for them along with all of our St. Jude friends who are missing their children but know they are in a much better, pain free place. UPDATE: 3-14-05 Louie is ready to begin his FINAL 10 weeks of chemotherapy! Tomorrow he goes inpatient for “big chemo”, only two more of these left. He looks so very healthy & seems to be progressing in his speech & responsiveness. His next scan will be the first week of June & from there we hope to free him of his central line & Ommaya reservoir. Louie loves the water so it would make for a much nicer summer if he could lose the line. We don’t have a lot more to update which is always good news. So many of our friends are hurting deeply now & we cannot help but feel their pain & hurt along with them. Noah’s family went home to New Mexico & are now set up with hospice. My cousin Garrett was diagnosed with Non-Hodgkins lymphoma. He & my aunt are in Rochester MN where he has begun treatment. A rough road for a 19 year old between childhood & adulthood. Please pray for them along with all of our St. Jude friends who are missing their children but know they are in a much better, pain free place: Ben Bowen Helen Garner Aaron Hunter Paige Davis Let’s always remember these children, their families & what they have gone through to bring others closer to God. We know how much your prayers and support have made a difference in our lives and we know how much it can help others too. Thank you so much for checking in and may God bless you too. UPDATE: 3-10-05 Please pray for good MRI results for Louie. We will let you know when we find out, our meeting isn't until around 3:00 Memphis time! We have a lot of time from then until our flight home so hopefully we can update from the hospital's library with some good news. Thank you so very much! UPDATE: 3-2-05 Humbled & sad is the only way I can express today. I returned home from Ben Bowen’s funeral this evening to learn that my 19 yr. old cousin Garrett Kinkade has cancer. Please pray for the Kinkade’s & the Bowens as they are both facing unfamiliar futures. Garrett & his family are not certain right now of his treatment. Pray for wisdom for his Doctors & parents as they begin their battle to fight this disease. I don’t want to ask the question “why” but I know that without our families sufferings I myself would not have built a relationship with God as I have. I just pray that regardless of where we end up I can maintain this relationship & only strengthen it. It just makes sense but it does not always ease the pain & heartache. I strongly believe one of the best ways to help anyone in these situations is to let them know their suffering has brought you closer to God. Wasted suffering is so very painful. I feel once again humbled after watching Tom & Jennifer cover Ben with a warm blanket & close his casket….watching Eli release balloons & say “bye bye Ben” to his baby brother. Their pain has to be way too deep to ever describe. I was beginning to feel sorry for myself longing to be one of the crazy mom’s you see about town with ALL of their children in tow. I should be so blessed as I am just to have my three children to hold & to be able to see them smile. Here is what is going on with our Sweet Lou, who with an impaired immune system has once again escaped his sisters germ warfare. Prayers really do work! He has never been hospitalized for anything other than his scheduled treatment & we are so very grateful for that. Next Thursday is his next MRI. Please keep your prayers flowing for him. If all goes well, when we return he will go inpatient for “Big chemo” & then he has only 10 weeks of chemo left!!!! After that….we will pray to remain at “zero tumor” & work on getting the hardware out of his body(central line & ommaya). Please continue to pray for our friends listed above. Some of them are experiencing pain and stress beyond our imagination. We know how much your prayers and support have made a difference in our lives and we know how much it can help others too. Thank you so much for checking in and may God bless you too. UPDATE: 2-19-05 New photos added! We had a long meeting with Dr. Sutton, Louie’s Neurologist yesterday about our concerns with Louie’s development. She agreed that his regression in his speech was a concern and we need to monitor it closely but she also said that there really is no way to know what’s going on until he gets older and off all of these treatments. Physically, he seems to be slowly progressing but mentally it’s just so hard to tell. Some days it seems like Kerin and I can’t even get him to focus long enough to look at us. Is because of chemo? Is it the radiation? His surgeries? Or is just that he feels like crud from all of this and he just wants to be left alone at times. The fact is we don’t know and we probably won’t know for several more years. In the meantime we are going to petition to increase his therapies and hope that this will help him break through. Despite all of these concerns we know how lucky and truly blessed we are. Louie is still handling everything incredibly well and is truly a very happy boy. He is playing with his sisters more and more and absolutely loves to play outside when the weather allows it. His numbers are low right now and there is a chance that they will pull him off of the oral chemo that he has begun this week, but Dr. Wagner assures us that this is not a major concern. So we will continue to thank God for every day and try to be patient as we get closer and closer to the end of his treatment. Thank you so much for checking in and may God bless you too. UPDATE: 2-4-05 I wanted to give a more thorough update tonight. A couple of friends emailed for more detail & I realized this week that our family sometimes only knows how Louie is doing through this site. Many people are just afraid to call or disturb us so I hope this is not too much information. On Monday this week Louie’s blood counts were very high because of the nightly shot he gets after inpatient chemo to help him recover. His Oncologist decided to keep the shots going until we found out what his lab results were today. We all thought his numbers would be excellent. I let a puppy kiss his hands at the brace shop today(yeah, new braces that won’t fall off!) & let him spin his sisters dirty bike tire outside tonight because it made him happy & he looked like such a big boy! Then I walked in the house & learned that his counts tanked to 220! Less than 500 is no good & you need to be extra cautious sooooo….yikes! Our chemo visit this week went well, we are all very concerned about Louie’s development. Normally the Oncologist’s do not seem to concerned (maybe b/c they are battling the cancer piece & managing chemo side effects..hmmm) but this week it was different. I am going to take Louie back to his Neurologist in a couple of weeks & we have also petitioned for more therapy time as well through First Steps. When I made the call to find out the process to get more therapy I believe they were waiting on my call! Kind of a bummer of a week in some ways. Mike was so worried, he stayed up until 1:00 going through old home videos to find evidence to give the Doc’s & therapists of Louie’s decline in Speech etc. As far as Therapists, Home Health care & treatment at Children's Hospital goes we are once again very, very lucky. Louie has bonded with his therapists, Doctors & our home nurse Sally. He actually smiles at them & enjoys his time with them when he realizes they bring no torture! Louie is starting to show some terrible two signs which is great in many ways. Love when he is spunky & not spacey acting. I just feel so bad for him not being able to walk alone or to voice his needs & completely understand any of his fussing. His Developmental Therapist said it is like having the flu & people pushing you & controlling everything you do. I need to put a new picture up as Louie is bald & beautiful once again! In many ways though our quality of life as a family has only improved. I get sad when I think of all of the things Louie has missed that the girls got to do but then Mike reminds me of all of the one on one time Louie has gotten with his parents especially being a third child & how we got to know him so much better because of it. I am no longer working so I have time to enjoy my children, enjoy cooking, but most importantly I have gotten time to grow spiritually. Mike & I feel so very blessed & I feel like we have an opportunity to grow & to teach our children what is TRULY important in life. With the help of some very wonderful people I feel like I have been given a gift(at Louie’s expense sometimes I fear)& I am going to work very hard to learn God’s purpose for me & for my family. I am going to steal a quote from our friend Ray Gallegos’ son’s Noah’s website after they learned some difficult news & end with it. Ray & Jenny are 20 yrs. old & I believe very blessed with their faith. Each time I go to mass at “unusual” non-Sunday times & see young people I think “how lucky are they to experience God’s grace at such an early age.” Here is Ray’s quote which I hope he doesn’t mind but I think we can all grow from it: ….”I know one thing, God is great. He knew us even before we were born, he knows what to put in our lives and what to take out of our lives for the best. So all I ask is for God's will to be done here on earth, if God wants Noah to stay I will do everything I can to raise him into a servant for Christ, if God decides he wants Noah in heaven then I will do everything God wants me to do so I could be reunited with him. Please pray for Noah” Ok...not ending here as promised. I wanted to say thank you once again to all of our friends, neighbors & family who have helped us out in countless ways. We have never appropriately thanked you for all of your hard work. I wanted to let those who raised money for us to know how much it has eased any financial worries. We have needed the funds to help in tight situations here & there & they enable us to fly to Memphis together without the added cost. We are still very unsure of Louie's future & his needs so we are cautious & saving for his future needs, whatever they may be. It could be therapy, medical supplies, who knows what insurance will & will not cover(GOD BLESS ST. JUDE by the way where all needs are covered no matter what!!!!) Anyway, we want you to know we are very, very grateful. Please sign the guestbook, it is like getting a card in the mail & also is my excuse to break away now & then. The girls still think I am working when I am on the computer! I work to stay in touch with our friends also battling this disease! That's my story....God Bless UPDATE: 1-28-05 Round 2 of big chemo is done and again Louie has handled everything like a champ. He did need to get a blood transfusion before we left because his hemoglobin was low but besides that there were no problems. We can’t believe that we only have 2 more of these to go. We’ll start the G-shots again and hopefully his numbers will stay up enough to maybe get out of the house before to long. We do have another special prayer request to ask of you. Abby’s kindergarten teacher, Mrs. Kirtley who has been battling breast cancer told us today that the cancer has spread. Abby absolutely adores her and she has been very sweet and supportive of our family for the last several months. We ask that you pray that her new treatments stop the cancer immediately. We know we ask for a lot of prayers but we also know how well they have worked for us and so many other families (check out Jay’s link below for a great example). Your prayers are without a doubt the greatest gift you can give us and our friends that are facing similar battles. Thank you and God bless you UPDATE: 1-23-05 Louie is doing very well. He is scheduled to go inpatient for chemo on Tuesday but as of today his counts are too low to begin. We will know for sure tomorrow if he will be delayed. Being home and having delays is nothing compared to being separated and having delays. We are ready to end chemo though as it is affecting him very early this 2nd round. We knew it was coming but thought it wouldn't be for a couple of more months. The whole cumulative chemo/radiation thing is so very true(it adds up & stays with them). I just gave him a pre-chemo haircut so he doesn't shed so much. He is very tired & his appetite has decreased but he is still happy & playful. Just when you begin to feel sorry for yourself & for Louie you get a dose of others realities & stop & thank God for EVERYTHING. Please stop in & support the Bowen family if you have a moment, if not please say a prayer for Ben's comfort(just click on the Ben Bowen link above). Thanks for checking in on Louie, it is very nice to see how many people stop by each day. We changed the links at the bottom of the page to some causes we feel very worthy of support. Please consider being a blood and/or platelet donor as well as registering as a bone marrow donor. Finding a bone marrow match is very difficult but how rewarding to be the one to save a child(or adult's) life! p.s. See Louie as St. Jude's patient of the month at stjude.org And check out his modeling debut in the Christmas Catalog Also Louie is featured on page 17 of the Winter addition of Promise Magazine, in an article about the conformal radiation that he received. You'll also see a very encouraging article about how they are getting close to curing Louie's type of tumor with a single pill. No Chemo and no radiation! UPDATE: 1-9-05 LOUIE'S GOT GAME! (and his mom doesn't know how to adjust the photo size on here so you get a huge Louie & a view of our messy house!) Louie is doing very well, still working hard on walking. He will get some new braces for his legs which we hope will help him out. He has a wonderful Physical Therapist who has gone with us to his new Orthopedic Dr. & to get fitted for braces. He begins Speech Therapy this week & continue with Occupational & Developmental Therapy as well. He is really falling behind developmentally but it is hard to have high expectations when he has gone through so much. It really hit home when we were at gymnastics with his sisters & a little boy Louie's age came out from another class. I cannot imagine just dropping him off somewhere to play or go to school. We expect & hope things really pick up for him after chemo officially ends for good. His appetite has decreased a bit & he is a little queezy but I think the holidays helped him beef up(up to 31 lbs!). He enjoyed the warmer weather today so very much. He walked up & down the street with Abby & I & jumped(or got jumped)on the trampoline which is his favorite activity. He loves being outside which is one of his only reprieves from this house since he has gone back in hiding again with chemo beginning! There are so many friends & family to pray for, it becomes hard to single any one individual out sometimes. Our list grows & we ask that when you have time to pray for those who have lost their children, those who are suffering right along with their children, and those who have been given the gift of extra time on earth with their children. We changed the links at the bottom of the page to some causes we feel very worthy of support. Please consider being a blood and/or platelet donor as well as registering as a bone marrow donor. Finding a bone marrow match is very difficult but how rewarding to be the one to save a child(or adult's) life! p.s. See Louie as St. Jude's patient of the month at stjude.org UPDATE: 12-15-04 We were so thrilled to NOT have any updates. I think Louie was in need of some attention(he misses Nurse Valerie). After his bath yesterday we noticed his central line was much longer than it should be so we took him to the E.R. where they decided to just pull the remaining line out. Louie overheard that the doctor who was going to pull it out was a Resident surgeon going back to research for a career & just decided to wiggle it out himself! With a little help from the Teletubbies. Louie will have surgery within the next week to replace it. He is feeling very well & free without that old line! We are still working on getting his four at home therapies going. We meet Friday to discuss his needs further. The next big day for us is December 30th when Louie will have his post radiation MRI at St. Jude. Please pray for a clean scan! He will then begin his LAST 20 weeks of chemo on January 4th with a lovely inpatient round. Trying to keep him healthy for this will be a challenge. We got to see our wonderful pediatrician today(who we are so very thankful for sending Louie for a CT scan right away, many kids aren't this lucky). Abby has pink eye & an ear infection but we hope we caught it in time so she can keep it to herself. Until then, let the dry cracked over-sanitized hands carry on! Morgan & Abby are enjoying the heck out of Louie. He laughs so hard at them and they work very hard for this it is so sweet. It has been pretty neat to see him settle in here at home. He reminds us of the girls when they were little & enjoyed rough housing. So very wonderful to see. Counting our Blessings in soooo many ways.........please continue pray for our friends & their families & please keep providing us all encouragement if you have a moment. The support & prayers help so very much! Thanks for sharing Louie's journey with us. Kerin & Mike UPDATE: 12-6-04 Wow, what an emotional day. I know I can’t accurately describe all the feelings that we went through today but I’ll try to give a small taste. We woke up early and Louie and I drove Kerin and my sister Laura downtown to the big St Jude Marathon starting point where they met our friends Stacy, Randy, Jody and Gina who drove 8 hours from home to run with Kerin and show their support for Louie and St Jude. Then Louie and I headed to the hospital for his last radiation treatment, which like everything else so far, he handled incredibly well. It felt so good to walk out of those doors today. As we drove back to the Target House we saw thousands of runners going by us as we waited in traffic. I spotted a fellow St Jude mom, Tammy who lost their beautiful girl Hanna a several months ago. Again, overwhelmed with emotion I yelled out the window to her to keep going, which was really stupid because I know nothing would stop her. I’m very proud to say that nothing stopped my wife and the rest of Louie’s team either. I’m so proud of Kerin and the person she has become through all of this. Just another big item to add to my growing list of things to thank God for. When we picked her up after the race she told me how emotional it was to run by the Target House with all the time we have spent there and all the families we have met. The girls and Louie took a much deserved rest and then Louie and I began our marathon home. Yet once again there were a lot of mixed feelings as we left the apartment where we have been since May. Part of you wants to scream with joy as you escape and part of you feels complete sadness for all the friends that we’ll leave there that still have a long way to go and are still in need of our prayers and support. Kerin, teary eyed of course, dropped us off at the airport. She is going to drive the van back tomorrow so she can spend some time celebrating with her friends (They raised a lot of money for St Jude’s, big thanks to everyone that supported them). Louie was great on the flight as always and as we drove down our street, we received one last surprise. Good old Arcadia Avenue was lined with welcome home Louie signs and balloons in the neighbors’ yards and finally, there was giant inflatable snow man in our front yard, all lit up to greet us (Louie loved it). I hope you guys heard me as I was honking the horn the whole way down the street. Finally, the girls and Louie are sound asleep in our home tonight. We won’t be complete until Kerin gets here tomorrow but it’s a great start to the rest of this journey. Thank you family, thank you friends, thank you neighbors, thank you Blessed Sacrament Church, thank you St Jude/Cincinnati Children’s Hospital, and THANK YOU GOD UPDATE: 11-28-04 Hello everybody, I hope you had a great Thanksgiving. I’m happy to report that we did. We’ve been having lots of fun all week together, with “together” being the operative word. Obviously we have so much to be thankful for. Louie continues to do well and his spirit is still strong. Our girls have handled the shuffling and the stress of everything much better than we could have ever asked. Our family, friends, church and community have rallied around us to support us in anything we needed. We’ve been blessed to meet so many new families and so many inspirational children. And maybe more importantly our faith has grown and we know that God is with us no matter what. Tomorrow I will pack the girls up and head home. These days (transition days, as we used to call them) were the hardest of all because you never knew for sure when we would see each other again and even scarier I was worried what my son would look like the next time I saw him. Well this time I know that I’ll be back in 5 days to get my wife and son and I’m confident that he will look as wonderful as he does right now. Thank you and God bless you UPDATE: 11-22-04 Only 2 days left of week 4 radiation! Louie has a very good appetite & his counts remain up. We are focusing on walking & home therapy now because he is a little too grumpy from sedation to hang out at the hospital after his radiation treatment. We are getting very excited about getting home together for good & sending the suitcases to the basement where they belong! Mike & the girls will be here tomorrow. I cannot wait, Morgan & Abby bring a lot of joy & spirit to this House! We are going to have Thanksgiving here with some of are friends from St. Jude & looking forward to an apartment packed full of children! Louie will get a whole month off with no chemo or radiation, we will then come back here for an MRI & evaluation before he begins 20 weeks of chemo at home. He looks so handsome with his eyelashes, eyebrows & hair back but will be losing once chemo begins again. No big thing, but he just looks so very healthy I’d love to take him & run away sometimes(not so smart)! You can tell we are headed home soon by the number of exclamation marks! UPDATE: 11-18-04 Louie is plugging away with treatment beautifully. Week 3 of radiation is almost complete & week 4 will be somewhat abbreviated. His schedule will be Sunday through Wednesday do to the holiday & then ONE MORE WEEK & WE ARE HOMEBOUND!!!!! Mike, Morgan & Abby are coming down Tuesday for the whole week! What a great way to celebrate Thanksgiving(together). My good friend Hollie left yesterday, it was soooo very nice to have her here. We toured the lovely Graceland mansion & took Louie to see the Memphis pandas & she got to experience St. Jude first hand. What a treat for me(getting spoiled).As we approach our end date of treatment here at St. Jude we feel so very compelled to support this incredible facility & the amazing compassionate people affiliated with it! Last night Louie & I got to speak to a company who supports the hospital & tell our story. It was nice to be able to help out in our “very little” own way. UPDATE: 11-13-04 I can’t tell you what a great week Louie and I had together. We’ve been to the zoo, the art museum (that was a bit of a bust) and our favorite thing has been putting a mattress on the living room floor and wrestling. He is now officially done with 2 weeks of his radiation and has 3 to go. His numbers are coming back up and so is his weight. He looks so good and has been in such great spirits. I catch myself forgetting what he is up against sometimes and then I read update like this: www.caringbridge.org/ga/jay Jay is beautiful little boy that has the same kind of tumor as Louie. He had completed his treatment successfully and then this week at a routine MRI check up they found that a new tumor has begun to grow. This is the fear that we will learn to live with for the next 5-10 years. I’ve said this before but the mind games you play on yourself down here are relentless. You’re almost afraid to feel good about how well things are going because you don’t want to set yourself up for a big set back. You feel guilty when you catch yourself feeling normal or happy. It’s hard to describe what I’m talking about, but as we get closer to being home together again, we realize that with all the hard news down here that we still have a long way to go. I know by now that I don’t even have to ask but I will anyway. Please continue to pray for our boy and all the children that are fighting for their lives here. Especially UPDATE: 11-11-04 Week 2 of radiation is almost done and again Louie is handling it like a champ. He is starting to lose weight and his numbers are starting to drop but so far the doctors are not too worried about that. Luckily we have been getting in and out of radiation quickly so we have been able to get back to the apartment and get some good play time in before he crashes for his afternoon nap. With Kerin back home with the girls this week I’ve really been enjoying having Louie all to myself. Though I did have to share him with my Mom and Dad the past 2 days, he is all mine now through Saturday. I understand the importance of enjoying each and every moment with him especially after the tragic news that 3 close St Jude families have received this week. Thank you UPDATE: 11-6-04 Week 1 of Radiation down & Louie is doing very well. He seems to be getting used to the daily sedation & handling it better each day. We met with Orthapediccs yesterday & his leg is not re-broken, just healing still. He began putting pressure on it again so hopefully he will be up & walking someday soon. We owe a huge, huge thank you to Angie from Child Life for helping out with Abby Tuesday so that I could watch Louie receive his treatment. She has her own baby now with a Central line, leg braces, & radiation marks that she flushes each day. She teaches any child who will listen in clinic how to do it as well! Thanks to Crystal too, Abby’s manicurist who has shown us nothing but love from day one too! Soooo many to thank! So yucky to watch your baby on a TV alone in a big old cold room with his head taped to a table while face down. He has eight entry points of Radiation & the table spins for each. The actual treatment only takes about ten minutes. The preparation & sedation take longer but we now have a new group of wonderful nurses & Doctors taking very good care of Louie. Mike is coming down tomorrow & Abby & I will go home to be with Morgan for a week. We need some good Mo time & Mike is missing Louie. Hopefully Abby will get rid of her nasty cold too but she has already done the damage with Louie. They are so very sweet together. One last thank you to the Molnar’s too for taking Abby trick or treating at Target House Sunday, Abby loves little Gabby(Alex’s sister). This was especially important because she came back with many Butterfinger bars!!!! Thank you all STILL for sticking with us & for all of the love you show us & our dear friends at St. Jude. UPDATE: 11-5-04 Day 4 of Radiation down & Louie is doing very well. He seems to be getting used to the daily sedation & handling it better each day. We met with Orthapediccs yesterday & his leg is not re-broken, just healing still. He began putting pressure on it again so hopefully he will be up & walking someday soon. We owe a huge, huge thank you to Angie from Child Life for helping out with Abby Tuesday so that I could watch Louie receive his treatment. She has her own baby now with a Central line, leg braces, & radiation marks that she flushes each day. She teaches any child who will listen in clinic how to do it as well! Thanks to Crystal too, Abby’s manicurist who has shown us nothing but love from day one too! Soooo many to thank! So yucky to watch your baby on a TV alone in a big old cold room with his head taped to a table while face down. He has eight entry points of Radiation & the table spins for each. The actual treatment only takes about ten minutes. The preparation & sedation take longer but we now have a new group of wonderful nurses & Doctors taking very good care of Louie. Mike is coming down tomorrow & Abby & I will go home to be with Morgan for a week. We need some good Mo time & Mike is missing Louie. Hopefully Abby will get rid of her nasty cold too but she has already done the damage with Louie. They are so very sweet together. One last thank you to the Molnar’s too for taking Abby trick or treating at Target House Sunday, Abby loves little Gabby(Alex’s sister). This was especially important because she came back with many Butterfinger bars!!!! Thank you all STILL for sticking with us & for all of the love you show us & our dear friends at St. Jude. UPDATE: 11-1-04 Hello again. Louie has successfully completed day 1 of radiation. He will have a total of 25 treatments & then home for good! Let the countdown begin! I will get to watch his treatment tomorrow while Abby gets to learn about radiation with a doll with the help of lovely Angie from Child-Life. I wanted to update today because yesterday’s update was a bit whiny. I am no more tired than any other mom with young children with fun little virus’. Thanks so much for the nice words of encouragement(I think that is what I needed!). We are still trying to determine what is going on with Louie’s leg. His x-rays were sent to an Orthapedic doctor today & we should know more tomorrow. Thank you all STILL for sticking with us & for all of the love you show us & our dear friends at St. Jude. Our sweet friend & Louie's Big St. Jude brother Hayden Moore got to go home this weekend clear of all signs of a very nasty tumor! Please pray that it will stay away forever. Very scary to leave here & not have an MRI for 3 months(haydenmoore.com). "Lessons from the School of Suffering" quotes- " God always has an eternal view of what is best for us. For this reason, God will allow suffering & hardship to come into our lives to prepare & purify us for life everlasting. And there God will reward us many times for everything we have sacrificed, so as to enter into glory. " UPDATE: 10-29-04 What a week! What an absolutely crazy & WONDERFUL week! When I summarize the week you’ll know why the delay in updating! Monday was Louie’s MRI on his brain & spine(both totally clear of tumors), Tuesday he had physical therapy at 8:00, 8:30 Radiologist appointment which happened at 10:30, a 10:00 Oncology appointment which lasted until 1:00 because of our earlier delay & then a 1:00 Simulation appointment to prepare for Radiation which occurred at 3:30 & lasted until 5:30. This was about the time that Abby left Lebonheur Hospital in Memphis to have her cough & labored breathing checked out to make sure she would not infect Louie & all of the other children here! She just has some nasty allergies thank goodness. Then we were off to drop Mike at the airport for his business trip to Canada by 7:00. Then Abby threw up in the car & had to pee in the worst part of town while Louie was still very groggy from a long sedation. I was proud to catch most of the vomit while driving until it leaked all over & broke the paper bag! FUN FUN stuff(stinky, stinky car...still warm in Memphis)! That was Tuesday! Anyway, it was manageable thanks to Aunt Geri & cousin Ellen from AZ. visiting. What fun we had with them & will miss them so! I am thankful for my new sense of peace or numbness(not sure sometimes which it is for sure!). The pre-cancer me would have been a mental mess! Well, Louie is now all marked up with his blue X’s for radiation (almost as attractive as Easton’s who we miss terribly!) & will begin 6 weeks of radiation on Monday. His spinal fluid was clear of all cancer cells & we are still waiting word on his hearing test results(this was from his most fun 3rd day in a row sedation yesterday). He did well in Speech & Occupational Therapy today as well & is hanging tough overall. It will be a fun week here for the kids with lots of Halloween activities. Louie’s Memphis marathon team is up to 11 miles(thanks for pushing me Lou!) without any major medical issues. I think we will be successful at the 13 miles without stopping! We have a few new members joining our team to raise money for St. Jude on December 4th in honor of Louie & to support St. Jude. Thanks Jody, Gina, Randy, Lou & Stacy! Signed, Too many exclamation marks Kerin UPDATE: 10-26-04 Good news! We may be jumping the gun but we saw Dr Gajjar after Louie’s MRI and he said his brain scan looked good. He hasn’t seen his spine scan yet and there are other Doctor’s that need to look at everything plus more tests to come but we can’t help but be excited about what we do know. Obviously the brain was our biggest fear since that is where the tumor was. Keep those precious prayers coming. They are truly working. We will let you know the official results when we get them. Thank you, thank you! UPDATE: 10-18-04 The last time our families set up a prayer service for Louie, I went by myself because Kerin was in Memphis with Louie. I remember writing about it afterwards and saying how I was afraid to turn around and face everyone for fear of breaking down and crying. A lot of time has past since then and at last night prayer service what I think I’ll remember the most was standing up there with Louie and facing everyone while Kerin bravely and eloquently spoke to everyone and thanked them for coming. This time I looked everyone in the eye and I could see the true love and concern that everyone has for our son and our whole family. THANK YOU. We take so much strength and solace in knowing we have such an army of supporters behind us. I think we both always knew we had incredible families and friends that would do anything for us but I don’t think we knew what kind of church and community we have backing us as well. From neighbors to complete strangers, we are amazed with how people come out of nowhere time and again to say that they are praying for us and that they care for us. We know how lucky we are to have this because we have met many along the way that face similar situations without this kind of support. That’s why we always try to ask that people think of them as well. “To whom much is given, much is expected”. We thank God everyday for all of our blessings and even the things that don’t seem like blessings. We pray that we can pay forward the many prayers and kind deeds that were done for us. Last night was another special gift in an ever-growing list. Thank you and God bless you all. UPDATE: 10-16-04 Louie is doing very, very well! His cast came off Thursday night & he is up & around cruising again! His appetite is ferocious with only two more days of oral chemo left so we are thrilled with that. This week we got the ball rolling for Louie to continue his therapies here at home. He will have speech, occupational, physical & developmental therapy in our own home. We will head back to Memphis soon, his next MRI is on the 25th & then we meet with his Radiologist on the 26th. They will begin simulation that week as well(to target the radiation towards the area of the tumor). Please pray for good results, we know this is in God's hands & our hoping for the best news possible, ZERO TUMOR still! We will be bringing Louie to the prayer service tomorrow but his counts remain pretty low so we will be pretty careful with him & try to keep him somewhat isolated. The prayer service for Louie and our St. Jude friends is tomorrow, October 17th at 7:00 at Blessed Sacrament Church . Some very thoughtful & spiritual family members arranged this service prior to radiation. It will be about 45 minutes & we will all pray the rosary with Deacon Dave Meyer who did this with Mike & I the day of Louie’s first surgery at Children’s hospital. We found it so very powerful we’d like to share the feeling. We understand many of you have already done so much for us & we know the value of family time more than anyone so please do not feel obligated to attend. Any prayer for our son would be welcomed in any form. UPDATE: 10-10-04 Hello all, Not much going on but we wanted to update for those webstalkers like ourselves! Louie is handling this next batch of oral chemo very well so far. His appetite is still there & activity level good so we are very happy about that. We are hoping to have his cast removed next Friday for good. His next MRI has been bumped back until October 25th. Please pray for a clean scan(NO TUMOR GROWTH!) & that his hearing has not been effected by the chemo as he will lose the hearing in his left ear after his upcoming radiation treatment . The week of the 25th will include an MRI, hearing test, and a spinal tap to check for cancer cells. He will then move into radiation simulation before his six weeks of radiation begin. This will be every weekday so no more home time for Louie until close to Christmas. This will be the last big chunk of time away from home so I think it will easier to handle knowing we all won’t be apart for more than a few days ever again. There will be a prayer service for Louie and our St. Jude friends on October 17th at 7:00 at Blessed Sacrament Church . Some very thoughtful & spiritual family members arranged this service prior to radiation. We hope Louie & our whole family will be able to attend. It will be about 45 minutes & we will all pray the rosary with Deacon Dave Meyer who did this with Mike & I the day of Louie’s first surgery at Children’s hospital. We found it so very powerful we’d like to share the feeling. We understand many of you have already dedicated a lot of personal time to Louie & we know the value of family time more than anyone so please do not feel obligated to attend. Any prayer for our son would be welcomed in any form. Louie’s marathon team roster is growing! Stacy Morgan, Randy Wesley, Laura Taylor & a few others are considering running with me in December for the St. Jude Memphis Marathon & I am very excited & honored! We have raised over $1700 for St. Jude in Louie’s honor which will go to pediatric cancer research. Sincerely, Kerin UPDATE: 10-5-04 Louie’s counts are up enough to begin his last round of oral chemo(VP-16)until next year. He should take this for 3 weeks if his counts remain ok & then will have his next MRI. We are very nervous about this one as his intrathecal chemo treatments slowed down quite a bit in the past 10 weeks. We are praying that the tumor has been defeated already & that the reduction in chemo won’t be a factor. Louie will then begin 6 weeks of daily 3-D conformal radiation aimed only at the tumor site & the area around it. Radiation has been a big fear of ours since the beginning. A child’s brain is not developed until age 3. St. Jude has more experience than anyone in 3-D conformal radiation so all we can do at this point is to keep praying. We have gotten to enjoy a lot of family time(all 5 of us!) lately & we are feeling so very back in the groove it is scary! Louie has adjusted to his cast, crawling very quickly now! Hope to have it off in 2 weeks & get back to physical therapy & walking! We have been spoiled before the upcoming 7-8 weeks where Louie will have to remain in Memphis for radiation. We find comfort in the fact that treatment time is going amazingly fast & that this will be our last big hurdle away from home. We still have a long haul, chemo until June, but going through it together at home will be much easier on everyone. Also, Kerin is raising money for St Jude Hospital by running in this year's St Jude Memphis Marathon in December. Research is so very important to Louie & other children with pediatric cancer. The chances of their cancer's coming back will always be a threat & the odds are a lot higher than adult cancer. They know a lot about Louie's tumor type(Medulloblastoma). Check out the St. Jude website for very recent medulloblastoma research. We are forever in debt to St. Jude(as well as to many of you reading!). If you'd like to support her you can click on the 1st link at the bottom of this page. Thanks so very much! __________________________________________ Thank you all for sticking with us & for all of the love you show us & our dear friends at St. Jude. UPDATE: 9-29-04 Just a quick update. Louie is doing well. He received his last intrathecal injection of chemo (lumbar puncture) on Monday and handled it like a champ. The only problem is that it has made his counts drop again so we have to wait for them to go up before we can start the oral chemo that he is supposed to take for the next 3 weeks. The good news is that we should be able to spend more time at home during these weeks. As always, thank you for your thoughts and prayers. We feel like we’re almost past the first big stage of his treatment and we know that all of your prayers have helped get us here in good shape. UPDATE: 9-24-04 We thought it was time for an update. I have run into people while at home who are confused as to where Louie is & what is going on. Us & confusion go hand in hand so here is my best summary! Louie is home now & should go back to Memphis(we are choosing to drive more lately because we get the extra special search at all airports since we buy 1 way last minute tickets!) for his last Intrathecal chemo to his spine on Monday, but his counts may be too low to do this. He gets no more chemo directly in his brain. We are just going to lay low until we find out when he recovers enough to begin. We hope to be home quite a bit until October 11th which is when he will have his next MRI & then go into 6-7 weeks of radiation. After that we will be coming home for good! He will continue his chemotherapy here at home until roughly May. Last night was a very tough night, Louie was in as much pain as he seemed to be right after his initial surgery. We used up the little bit of Morphine that we had & learned today that he broke his ankle in two places(hairline fractures). He will get a cast & it appears to just be a fluke thing that should not effect his treatment schedule. He is so incredibly tough, I believe from this tumor being with him potentially since birth he has grown accustomed to pain, so to see him screech in pain at every movement was very, very sad. We'll just keep plugging away & keep praying for Louie & strength to be good parents & people. Thank you all for sticking with us & for all of the love you show us & our dear friends at St. Jude. UPDATE: 9-20-04 FYI: If your thinking about going out to eat tonight , please consider going to a Chili's resteraunt. Today (9-20-04) they are donating all profits to St Jude's PS Louie's numbers are coming back up and he is doing great! UPDATE: 9-11-04 It's official, Louie has completed his last inpatient round of chemotherapy here at St. Jude. He still has a way to go before he gets to go home but it feels like a big hurdle we have gotten over. He was sent home(Memphis home!) on fluids because of his low magnesium level but we were able to get rid of that old bag today & switch to oral magnesium which gives him a lot more freedom! Abby & grandma are doing well also & Morgan is enjoying some solo dad time in Ky. Feels like we are in a very good zone right now. So many of you have kept up with us on this journey when I was sure things would eventually let up & most would move on but it has not happened. Your caring & generosity has only spread from our family to many others here at St. Jude & I will forever be grateful & in awe of that. My spiritual quote of the day from my favorite book!!!!("Lessons from the School of Suffering") "I believe God allows suffering to happen to bring about a greater good. In fact, what we first perceive as bad, upon later enlightenment, we realize is often a gift, a blessing in disguise." ok 2 quotes: "When life tests us, we need to remember that the only failure is the failure to learn & grow from the experience." UPDATE: 9-7-04 Hello all, Louie has officially begun his 4th round of Inpatient chemo. His numbers were well enough to be admitted last night & if he hangs tough as always this week should be his last St. Jude inpatient. We have been blessed to do the other four rounds at home in Cincinnati! We are estimating being home in early December. The remainder of our time here will be oral chemo, one more Intrathecal treatment, & a weekly injection of chemo along with his speech, physical & occupational therapies. He will begin 6 weeks of daily radiation in mid-October. Mike is headed back to Ky. this afternoon to be with Morgan. I think this is getting a bit hard on her & we don't want her to be without a parent for more than 2 days. Abby will stay here & "help" Louie with me! She loves it here & asked if she could live here forever. The answer....NOOOOO way! She is so very caring, the logo for St. Jude looks like a child with a bandage on her arm. Last night she asked if the little girl was here & that she was worried about her. She said she hopes she is going to be all right. I told her that is why all kids are here, to be all right. We are so proud of our kids through all of this & also of our family & friends who support not only us but are growing attached to other families here. Every time I sign other children's websites I see our friends & families words of encouragement & am so very proud. When I returned I got calls from those who received care packages, mail & notes on websites & they were so very appreciative & thrilled. I am amazed. OK, now to my newfound calling of evangelism. We were sent the most inspirational & helpful book I have read yet since this journey began. I would encourage anyone who is suffering or struggling with their faith to read it. It is called "Lessons from the School of Suffering" & only takes a couple of hours to read. It is the story of a priest from Cinti. who lost his battle with cancer but wanted to tell his story to help others in his situation. I am so touched & feel this book was written for me that I am going to keep a quote on Louie's website in hopes to inspire others who do not have time to read it. Here we go with quote #1: - "So often in our lives, the very situation that causes so much pain or sorrow is the very place we can experience God's blessing & new life." ..."when I think about the crosses we are asked to carry(Louie was diagnosed on Good Friday, his(OUR)cross to bear)we find ourselves at a crossroad in life where we have to choose between the right or wrong side of Jesus....If we choose the right side we must continually work at developing the right attitude about our suffering." There is so much more I want to share but I know once again I have been long winded! Please keep your prayers up for Louie & all other familes here. Special prayers are also needed for the family of Grant Jansen, a 15 yr. old boy from our town who recently lost his battle with cancer. Thanks for listening, we are so very grateful for your support! UPDATE: 9-2-04 It's a no go. Louie's numbers are still too low. We have to wait til Friday or Monday now. I hate lose a whole week but we have to be patient and keep the big picture in mind. Also, and more importantly,please keep the family of Tommy Vogt in your prayers this week. Tommy passed away in a car accident yesterday. Anyone that ever met or knew Tommy probably called him friend. He will be greatly missed. UPDATE: 8-31-04 Small set back today. We were able to get admitted last night, which is no simple task as crowded as they are down here but when we woke up this morning they decided that Louie’s counts were too low to give chemo. So, they discharged us(again not an easy task, it took about 5 hours just to get us out of there) and we’ll have another blood test on Wed. If his numbers are back up and there is a room available, then we should start the chemo then. This isn’t the worst thing that could happen. Yes, we’re disappointed that we’ll be behind schedule a couple days but we obviously don’t want to risk giving Louie chemo until he’s ready to handle it. This last big dose is probably going to be the hardest so please keep those prayers coming. Thank you, UPDATE: 8-27-04 I want to thank everyone for the words of encouragement in response to my last update. I hope I didn’t sound too incompetent. The point I was trying to make is that my son has made this a lot easier than it should be. One of our top prayer requests is that his spirit remains strong throughout this and I can attest that those prayers are being answered. This week has been great. Louie’s numbers are almost back to normal (yeah, no more shots) and he passed another hearing test today. Hopefully if its not too hot tomorrow we’ll try to find a decent swing in this town and spend some time out of the apartment. The next big round of chemo starts Sunday night and its bound to knock down again so we need to get out while we can. As always thanks for your prayers and guest book entries. I can’t tell you how much they mean to us UPDATE: 8-25-04 Well, Kerin called me Monday morning with the bad news. Louie’s magnesium was still to low and he was back on the portable IV. No trip home for Louie. But the good news is that Mommy is home with her girls today and she’ll be there to get Mo on the bus for her first day of school tomorrow. Plus, I get some much needed manly time with big Lou (I’m afraid he is starting to turn into a bit of momma’s boy. Not that I can blame him.). The other good news is that Louie was off of the IV last night and so far his numbers are holding. He is also eating well and is in a great mood. We hope this trend continues because next week he starts his last round of the dreaded inpatient chemo and we want him at full strength. We’re a little scared because he hasn’t fully recovered from the last round 2 weeks ago. I’m not sure why but I always get nervous when I’m down here by myself. I guess I’m afraid that I’m going to screw something up. Unlike Kerin I’m not the most organized person and you need to be down here with all the clinic appointments, medicines, dressing changes and line flushes. Today was especially nerve racking because I had to give Louie a shot for the first time. Again Kerin does this everyday, no problem, no complaints. But the cool thing is that Louie makes it so easy for me. As soon as he smiles at me all my doubts fade away and I know that everything is going to be OK. Even the shot was a piece of cake, he cries when he sees it coming but not when you stick him. It’s truly amazing and I thank God for his spirit everyday. We wound up having a great day and I can’t wait to get tomorrow started. As always thank you for your prayers and guestbook entries. I can’t tell you how much they mean to us. Please take the time if you get the chance to visit and pray for some of our friends bellow, especially the Bowen family who again face tough decisions this week. UPDATE: 8-22-04 Thursday, August 19, 2004 10:30 PM CDT ***UPDATE*** 8-21-04 Louie is off of his IV as of today so hopefully his numbers will be moving up so that he can still get home this week. Also, I added some more photos from his last home visit, which when viewed explains why we want to get him home so bad. _________________________________ This has been a tough week on Louie, which was kind of a surprise because he did so well with his last inpatient session of chemo. It looks like the cumulative effect of all these nasty drugs (especially Cisplatin) is starting to catch up. His ANC has been zero for a few days, which means he has little or no defense against viruses and his magnesium, phosphorous, & calcium are very low as well. As a result he has already had one blood transfusion and received platelets on Friday. Plus he has must remain on fluids through the weekend still. He has been fighting vomiting and diarrhea all week, yet has managed to keep his smile through it all. Please pray for Louie to rebound before he goes in for another round of inpatient chemo at the end of the month. Kerin has also maintained her incredible strength in watching over Louie through this period but it is getting hard for her as well. She has not seen her daughters in over 2 weeks and with Louie’s current state their trip home this week is in question. I’ll swap out with her if Louie can’t make it but its not same without the whole family together and Louie could sure use the belly laughs that his sisters always provide. THANK YOU ALL! UPDATE: 8-14-04 Note: Louie is on our list to visit next week... Louie is free!!!! We were released from the hospital around noon & Louie is doing phenomenal! Mike is flying home to be with girls. We feel so very blessed I wish I could share this peaceful feeling(one I do not believe I have ever had in my life) with everyone. I am going to try though! I don’t know if is our recent good news of Louie’s condition or the funeral that I attended yesterday for 3 yr. old Hanna Gibson but I feel very compelled to share our joy and blessings. Since Louie was diagnosed with cancer Mike & I have never asked “why us”, we have actually always felt that we were overly blessed & still do. I have felt like I needed to be strong & an inspiration for not only my family but others too & I just thought “I am not the person to inspire others. I only have enough in me to get Louie & my family through this in one piece.” Today I feel differently. I have been reading the Bible & inspirational books & wanted to share with everyone a message from a book called “God Calling” which has daily spiritual messages. It is from the one dated March 4th. I won’t write it all because I know I am already long winded enough but here it goes: “Remember that truth is many-sided. Have much Tender Love & Patience for all who do not see as you do. The elimination of self is the key to holiness & happiness, and can only be accomplished with My help. Study My life more, Live in My Presence. Worship Me.” There is no better place than to learn selflessness than here at St. Jude. The 4 minute drive to the hospital itself reminds me each day how blessed our family is. I see at least 10-20 people daily we are so much more blessed than, it saddens me. This is only the drive there! I want to share a few other stories JUST FROM THE LAST 2 DAYS!!! I am doing this because I think some of our family & friends feel we are getting “caught up” in St. Jude families & need to focus on Louie. Louie will ALWAYS get the maximum dose of love, the best medical care & attention a child could have. He is the reason for so much inspiration. I don’t want people to feel sorry for us but to know how lucky we truly are. UPDATE: 8-11-04 Yesterday was one of the saddest days for us here. Hanna Gibson passed away & we learned our little friend BIG BEN will undergo a very dangerous surgery Thursday to remove his bleeding tumor. At the same moment we learned this Louie began vomiting pretty seriously. Louie has since recovered & so has his appetite along with giving lots of love & sweet kisses(his newest trick!). I would have to say this is his best inpatient round yet! We may get to get out a day early & take his final 24 hours of fluid on the road(much preferred!). I went to Hanna's visitation tonight & couldn't help but think that her mom was like a rock, speaking individually to each & every person as she stood by her beautiful little girl. But I cannot forget Hanna's website where it says a cancer parent's strength is more like that of an egg than a rock. I cannot imagine her pain. Please pray for comfort for her family. Ben needs prayers in a big big way as well. He and his family are such an inspiration to so many here. Please pray with the same intensity that has helped Louie get this far. http://bens-story.com Both of these familes have shown us how to be strong parents in these incredibly difficult times. Please rally around them and strengthen them with your prayers Some good news for our friend Easton, he gets to go home in 2 1/2 weeks!!!! I will miss his mommy though but we are very happy for their family. Please keep signing the guestbook. It really provides us much needed encouragement & helps us get through these lonely days here in Memphis! UPDATE: 8-10-04 Wow AGAIN(it's going to be a long update)....Good friends, old friends, new friends, neighbors, our family, and family of all of the above organized one heck of a Benefit for Louie yesterday. We are now in waaaayyyyyy over our heads in the owing thanks department. So many people sacrificed their time & their own families to put this together & Mike & I are so very appreciative. Our hopes are to secure Louie's future, help fight this disease, & help other families along the way who are in need struggling to fight this terrible disease as well. I know there are a lot of creative and caring people out there who check in with us regularly. If anyone can think of a way to say thank you in a big appreciative way I would love some suggestions! We would have loved to attend the event & are sorry we missed it. Our family has enjoyed 3 out of the last four weeks together. Today was such a hard day when the girls left for home & will only get tougher as Louie goes in the hospital for his 3rd round of chemo at 8:00 p.m. He has two inpatient rounds this month & we are so worried it will knock his spirit down which then has a snowball effect on the rest of us. He is so tough though & this family time has built up a good supply of positive energy(his sisters overflow with it!) I know he will recover quickly. Our prayer requests stay the same, I am aching for my daughters but know they are in good hands. When Morgan starts 1st grade Abby will come back after Louie's inpatient rounds to be a Memphis gal with me! Target House needs her spirit & so do I! Please pray for them, I love them so & so painfully miss them already. Please keep signing the guestbook. It really provides us much needed encouragement & helps us get through these lonely days here in Memphis! UPDATE: 8-06-04 I'd like to start this update by saying "ZERO TUMOR"!!!!!!!!!!!!!!!!!!! Louie's first MRI results since he began chemo are in & there is no tumor at all! His hearing is normal as well & we are feeling so very very blessed & very very grateful to God for answering our prayers. Every prayer we have asked for since this journey began has been answered & we cannot express the joy. We believe & try to prepare for whatever outcome has been chosen. Today was so incredible words could never express, but the feeling that we will get to see Louie grow & be with him through his journey in life is pretty amazing. Morgan & Abby decorated the apartment for Louie's return home & then headed off to the zoo. Feels so "normal" it is kind of scary! Morgan also won one of the grand prizes tonight at an art show here. She made a cross for Louie when she got here & titled it "Louie, I love you". She had a few of us moms in tears! Louie heads inpatient Sunday night to begin his next 10 weeks of chemo & then will have 6 weeks of radiation. Believe it or not these first 10 weeks have gone pretty quickly for us & we hope to continue with this trend! Please keep praying for Louie & all of the brave St. Jude families and children. It is always uplifting when there is good news here but the pain so many others feel should never be forgotten. I wanted this update to be so eloquent & faithful & uplifting but in the end it is pretty mish-mosh like! Please keep signing the guestbook. It really provides us much needed encouragement & helps us get through these lonely days here in Memphis! UPDATE: 8-04-04 Well, we drove through the night Monday but we made it in around 3:30 am. Its pretty cool having the whole family here because they have so many activities set up for them here this week. There was an epic silly string battle at the Target House and the girls had a blast. My Mom (Carol) is also down here to help with the girls this week. She’s a rock, but anybody that knows her is already aware of that. OK, on to business, Louie had his hearing test today and passed which is great news, because one of the many side affects of chemo is hearing loss but so far so good. Tomorrow is the big day. Louie will get a MRI on his brain and spine to see if there is any return of the tumor but we probably won’t get the results until Thursday. This will be a very nerve racking 24 hours. We’ve had so many friends down here with bad news lately which makes tomorrow even scarier. But we know we have an incredible amount of people pulling and praying for us and that, plus Louie’s smile, is what keeps us going. Please keep them coming Thank you, thank you, thank you UPDATE: 7-30-04 Just a quick update. We are having a GREAT week at home. Louie is averaging about 2-3 hours on the swing time each day and if you try to take him off before he is ready he will let you know. He is having so much fun with his sisters. I can’t wait to get my film developed and post some new photos, I think we got some good ones. His numbers are still a little up and down so we’re still under house arrest for the most part. But being locked down in our home on Arcadia with the whole family beats being locked down by yourself in a 2-bedroom apartment in Memphis. We’ve been reading some more bad news for some of our St Jude’s friends. Please keep them in your prayers. And please continue to pray for Louie as we approach his big MRI next week to see how he is doing and whether or not this treatment is working. Your prayers have helped us get this far and we can’t thank you enough. UPDATE: 7-26-04 I wanted to send a Louie update & a big thanks before we head home tomorrow. Louie & I are eagerly awaiting dad's arrival here in Memphis! I know Louie gets tired of looking at just mom sometimes. We have become "spooning" buddies & pretty darn good cuddlers though! Thanks to all of you caring for the girls so Mike can get down here more(Terri & Joe, Lou & Bill, Al & Dar, & of course the grandmas!) We couldn't make it without you! Tomorrow Louie will receive chemo in his Ommaya(Only 4 Intrathecal treatments left!) & has occupational & physical therapy & then we are homebound! His counts are still very low so Louie will probably be pretty much homebound again. There is nothing sadder down here than when you meet families whose treatment had to be delayed(sometimes months)in order to clear an infection(inpatient mind you! NO FUN)because of low counts & the inability to fight it off. I think this week will be a little easier without the anxiety of meeting new doctors at Cincy in hopes they will take on his care for the last 20 weeks. It is sometimes hard to adjust being home, living out of a suitcase, & knowing "home" is not really "home" for quite awhile. It happens to a lot of us St. Jude families! I wanted to again thank all of my wonderful friends & coworkers who helped with the Benefit last night. I loved the call I received during the benefit & loved hearing Rene in the background working the crowd(I think she has a new calling Fidelity!). There are so many people Mike & I will never be able to appropriately thank. I did want to mention my job share partner Terri, Rene, Robin, Kelly & so many more though. They have their own families, careers, & responsibilities & dedicated much effort to last night. It was really neat to hear Mike talk about my coworkers. He really enjoyed himself & felt a lot of love. Terri, thanks for picking up my slack too! I am leaving Mike's quote: "I could not leave without first thanking everyone for a very special evening last night. I walked out with the overwhelming feeling that people really do care so much for us and our son. To all of the sponsors, donators, organizers, friends, and family that made this happen, we’ll never forget how you’ve helped our family". Please keep signing the guestbook. It really provides us much needed encouragement & helps us get through these lonely days here in Memphis! UPDATE: 7-20-04 Rather than write about how the week at home went for Louie, I'll just ask that you look at the new photos that I added. I think it tells the story better. We have 2 more weeks of “lighter” chemo before the heavy stuff starts again so we may try to get him home again. Please continue to pray for him and all of his buddies at St Jude’s. UPDATE: 7-13-04 I am very happy to say that we are all under the same roof as a family tonight. Kerin and Louie made it home successfully and all is well. Today is a very good day. Thank you everyone whose prayers helped make this happen. Also a special thank you for all of our friends at Fidelity, that were on Fountain Square at 6:30 am promoting the benefit on the 24th on the Channel 12 news morning show. That was very cool and I taped it for Kerin to watch. Thank you all so much. UPDATE: 7-12-04 Scary night last night, Kerin called me at about 2:00 am to tell me that she had been vomiting through the night. But that wasn’t her concern, the real scary part was that Louie would get what ever it was that she had. Just the day before his blood counts tested low again so his immune system isn’t at full strength. Talk about feeling helpless, here I am with the girls hundreds of miles away unable to do anything. I was about to get in the car and go but Kerin told me to wait. In the end she toughed it out and the vomiting stopped in the morning. Luckily, so far, Louie has shown no signs of catching whatever it was. As many of you know we were planning on getting Louie home next week but if he gets sick or if his numbers don’t come up, then it might not be possible. To call that a disappointment would be a huge understatement so please say a prayer to get his numbers up, to keep him healthy and to keep Kerin strong. UPDATE:7-7-04 Hello everyone, Mike here. Louie and I had a good manly weekend, mostly watching Teletubbies and Elmo, but manly none the less. Louie’s numbers are up which is good but his appetite still is not so good which is somewhat expected. His spirit is still strong but after being a way for a while I can see that this process is starting to take a toll. I don’t believe his spirit could or ever will be broken but I will continue to ask you to pray that it doesn’t. As many of you know we’ve been investigating a newer technology for Louie’s radiation portion of his treatment. There are only two centers in the US offering it and we were considering the one in Boston. Surprisingly, after talking to the doctor there that reviewed his case she has recommended that we stay at St Jude’s. She felt that their technique offered no significant advantage in Louie’s case. This is good news because we were not looking forward to moving again. But it is also sad because as a parent in this situation you are always looking for an advantage, a magic pill, anything. We know that the radiologists at St Jude’s are some of the best but we were hoping for anything that could help spare Louie some of the side effects and long term damage that is associated with radiation in children so young. Again I ask for your prayers. Kerin returned today and gave me the tag as we swap out again and I head home in the morning. It’s very hard to leave. I hate only seeing my wife for a couple hours at a time and I’m terrified to leave my son not knowing what he may look like next time I see him. Your imagination can be a terrible thing as a parent here. Lots of mind games with yourself. Again please pray (redundant, I know) (The following is from the last update in regards to the upcoming benefit.) I want to thank everyone for the really nice guest book entries lately. They really do help our spirits knowing so many people care. Speaking of caring people, I’ve been asked to put some information about a very thoughtful benefit that Kerin’s Fidelity coworkers are putting together. Neither Kerin nor I asked for this but that’s how most of this experience has played out so far. Family and friends just step up and do unbelievably selfless things for us in our need. This isn’t the only benefit either. A group of Kerin's friends are planning a benefit in August. My friends at the Kenny and Brian Williams Fund have helped set up a fund for Louie and my friends at the Cincinnati Legato office have already made a very generous donation. Kerin and I are overwhelmed by all of this and truly touched. Our hope is that we do not have to use this money and we can pass it on to places like St. Jude and Cincinnati Children’s Hospital. We know that a lot of people are putting in a lot of hard work and we promise that every penny that is raised will be put to good use. UPDATE: 7-4-04 Hey everybody, happy 4th of July. Louie’s numbers did drop very low as expected so we wound up getting a blood transfusion on Thursday. But the tests today say they are on the way back up which is good news. His appetite is slowing down and he is a lot more tired lately but hopefully this just a result of the low blood counts and will pick up as his numbers increase. I want to thank everyone for the really nice guest book entries lately. They really do help our spirits knowing so many people care. Speaking of caring people, I’ve been asked to put some information about a very thoughtful benefit that Kerin’s Fidelity coworkers are putting together. Neither Kerin nor I asked for this but that’s how most of this experience has played out so far. Family and friends just step up and do unbelievably selfless things for us in our need. This isn’t the only benefit either. Another group of friends is planning a benefit in August and yet another group of friends has already set up a fund for Louie. Kerin and I are overwhelmed by all of this and truly touched. Our hope is that we do not have to use this money and we can pass it on to places like St. Jude and Cincinnati Children’s Hospital. We know that a lot of people are putting in a lot of hard work and we promise that every penny that is raised will be put to good use. UPDATE: 6-29-04 Louie successfully received his Intrathecal chemotherapy this morning! It took a few tries but his Ommaya(device in his head to receive chemo) is still working. We are very glad for that and for the wonderful care he receives here from Dr. Gajjar, Tara his nurse & Davie his Nurse Practitioner. He may need to receive blood this week for this first time since surgery because his counts are very low. I ask that you please pray for guidance as Mike & I decide how to approach the radiation portion of Louie's treatment. Outside of the initial tumor surgery this decision is what weighs heaviest on us as we endlessly research & make what we hope are the best choices for Louie. Our family needs come second right now but are always a factor. We know that we can make it through anything together & that the next six months will be challlenging but are in Louie's best interest for survival. Someone wrote asking we give more detail & ask what prayers are needed. My wonderful sister in law once told me that when you are too tired to pray for a long time at night that others are also doing it for you. So here are some ideas for prayers that I ask: 1- Pray for Louie to be cured of his cancer without further deficits 2- Pray that Mike & I make the right decision concerning radiation 3- Pray for all of the other families here at St. Jude struggling with their battles of survival(Ben, Easton, Taylor, Hannah & so many others) 4- Pray for our daughters Morgan & Abby to remain strong & happy 5- Pray for the Doctor's & Nurses to continue their excellent care 6- Pray for Kerin's mother who also struggles with Brain Injury & needs attention & care to keep progressing in her illness 7- Pray for our marriage as we only see each other in passing! 8- Thank God for all of the beautiful treasures he has blessed our family and your own with Thanks very much for sticking with us everyone! Love, Kerin UPDATE: 6-27-04 So very thrilled this a.m. I wanted to write & let everyone konw! Louie is getting his appetite back & it is such a wonderful thing. It is coming back slow but it is there. For the past four days he really hasn't eaten much & just pushes food away. This morning he ate some of his old biscuits, gravy, egg & cheese combo! It is so important to try & keep him nourished so that his body uses the food to rebuild & not his organs. Grandma Hentz left this a.m. We were so lucky to have her here this week, it really made things much easier. I try to stay positive when writing these updates & it can be hard at times. I realized recently that many people think Louie just takes his medicines & then goes on with his day like a "normal" boy his age. Some days he sort of does this but it really breaks a parent's heart to watch him go through all of this. He is currently taking 8 different medications outside of chemotherapy, wearing an eye patch 5 hours a day & leg braces whenever he can tolerate. All of these chemo meds. have a cumulative effect on him & he is sedated every week for his Intrathecal chemo(directly into his brain & spine). While we were inpatient last week his Ommaya reservoir in his head was swelling up when they tried to inject the chemo, there was some blood in his spinal fluid, & we had to stop. He only received 1/2 dose that day. Say a prayer that this procedure works properly tomorrow. No fun to have to replace that device in his head. If anyone is interested in how things "really work" down here in Memphis I'd love for you to read our friend Ben Bowen's updates on his website (Bens-story.com & then select the update link). Ben's parents are very good at expressing everything their son & family are going through. Louie & Ben are on the same protocol treatment plan. Louie is about 6 weeks behind Ben in all of this but seems to have very similar side effects at the same time Ben had them. They are a source of strength & wisdom for me. Please keep writing words of encouragement here or by emailing me at the address below. It is one of the few ways I stay in touch with the non-St. Jude world & it really helps keeps me going! Please take care! Love, Louie & the gang UPDATE: 6-25-04 We have been freed from our 2nd inpatient Chemo! I shouldn't say "our", Louie does all of the hard work & the suffering as well. His reactions were a little different this time. He had a reverse reaction to a "calming" medicine the first night & was crazy until 3:00 a.m. I thought he made it without vomiting but that happened on the next night this time. He hasn't had an appetite for the last 2 days but still smiles & plays & makes every nurse googly for him! There were a group of interns that were touring the Oncology floor & they opened Louie's door knowing he would smile & wave(which he did). They said "now don't you want to work here". He is in Sales already! I will get to bring him home in July for almost a week! Very excited for him & our family. He gets a month off of heavy duty Chemo before he starts again in August. Please keep praying for his strength & that his spirit is not broken through this! Take care everyone. Love, The Hentz's UPDATE: 6-19-04 Hello! Here is a quick weekend update before Louie goes inpatient Monday