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Wednesday, October 1, 2008 11:31 AM CDT

Update on Skyler....please keep him in your prayers.....
Okay so most of my close friends already know what's kinda going on with Skyler. For those of you who don't I thought I would write this to fill everybody in. Skyler had brain surgery June 16th 2007 and thats why he has all this hardware in his head.

So, Skyler and I had a fun trip to the Emergency room Thursday night. I noticed a piece of metal sticking through his scalp...also noticed his skull didn't feel quite right either. So, being me I freaked and took him to the ER. Which, now I'm glad I did. So, after X-rays and a CT scan we found out that he has several screws loose. Ha Ha funny I know. The piece of metal was actually one of the screws working its way out. That one was easy to pluck out since about half of it was showing. So, they sent us home and we made an appointment to see his Neurosurgeon....

Monday, we got to see Dr. Tye the local neurosurgeon. Amazing guy with amazing bedside manner. :) So, this is where we are at now sitting between a rock and a hard place. Dr. Tye reviewed the scans with me...which I had already seen for myself in the ER. He said there are atleast 3 more loose screws. However, surgery isn't an option now due to Skyler's scalp being soooo paper thin from all the radiation he received last year. He said we could do it now and remove all the hardware however he would have an extremally hard time healing. He also said if he went in now it was basically opening a can of worms. No good. However, waiting is no good either. He's hoping that the other screws will work their way out like that one did. It will avoid surgery but does have a good chance of infection. No matter how we look at this it's a very high risk of infection. So, please keep my sweet, precious baby boy in your thoughts and prayers. He's an amazing kid and truly a trooper. He's such a miracle to me and everybody else he meets.



Thank you sooo much!! I honestly don't know where I would be without my friends and family.
THANK YOU!!

Sunday, August 10, 2008 5:29 PM CDT

Just wanted to post a quick update. Skyler is doing wonderful!! Thank goodness! He just made his trip back from NYC. So far all of his scans and other tests have come back normal. Thank you!! He's doing great. He's excited school is getting ready to start again. I'm a full time student now. In nursing school. It's fun...lots of hard work but lots of fun too. Sophie is doing well...Getting big. I'm posting new pictures of the kids. I know it's been a while. Thanks for checking in on my little guy!! Take care.

Much Love,
Kim

Tuesday, May 20, 2008 12:54 PM CDT

Hey!! Sorry for the lack of updating...this not having a computer stuff isn't fun. Skyler is doing good. He's on his third cycle of the 42 day Temodar. He's going to school and continuing to improve. He lost his first tooth yesterday and was sooo excited to see the tooth fairy brought him a dollar. We are still continuing to deal with his emotional issues. He's truly an amazing kid. We are soo grateful to have him doing as good as he is doing. His hearing aids have been giving us trouble lately yet he rarely complains about them. He had a CBC done Friday with pretty close to normal results. He looks the best I have ever seen him. He's FINALLY 18 Kilos....Please pray for other families fighting the beast. Please pray for the families who are dealing with being defeated. We love you all!! Take care.

Enjoy your day!!
Kim

Wednesday, April 9, 2008 9:48 AM CDT

This isn't going to be a long update. Just wanted it to be short and sweet. Our hearts are aching right now. We have lost one of our favorite families here at the RMDH. Justin Owens is now in Heaven watchin down over all of his loved ones. Justin and his brother Brandon are Skylers best friends. PLEASE pray for his family 2 have the strength.

We also found out our friends from back home Owen has relapsed again and isn't doing very well. Please pray that the treatment he is doing will help clear this up.

I don't understand why all this bad news is happening to such wonderful people.

Please pray for our loved ones fighting this fight.

Love Always,
Kim

Monday, March 24, 2008 2:42 PM CDT

Well Hello All!! Happy Late Easter. :) Things have been going along just smoothly for us. Skyler is finished up his 14 days of Accutane only to begin another 42 days of Temador. He doesn't seem to mind except for the lizardness he gets from the Accutane. :) Skyler is officially a Kindergardner. He started this past Tuesday. He LOVES it!! After spring break he will be riding the big boy school bus to school. I honestly never thought this day would come. He absolutely loves his school, his teachers and his new friends. They had a great Easter. Enjoyed all of their egg hunts and parties. Hope everybody had a wonderful day!! We are very blessed to have another year. Will update as soon as possible. Thank you!! Take care. Enjoy your day!!

Much Love,
Kim and Skyler

Wednesday, March 5, 2008 5:17 PM CST

Hey All!! Thought I would do a quick update since I have a few minutes on a computer. Skyler is doing WONDERFUL!! He's gained 5 pounds in the two months we have been home. We arrived in NYC Monday morning. He did his MRI of the brain. Tuesday he had his MRI of the spine, his pentamadine treatment and his MIBG injection. Today he had his CT scan and his MIBG scan. Spoke with Dr. Kramer she said his scans look good so he's still showing NO EVIDENCE OF DISEASE!!! WOOHOO!! I will get my first good nights sleep tonight. I absolutly HATE scan time I get sooo nervous about everything. I lay awake most nights just watching Skyler sleep wondering if his inside looks as good as his outside. I know that might seem crazy to most but after living in the life of cancer you learn not to take things for granted. I truly admire parents who have to make the toughest decisions and I pray every single day that we will never be in that position...however I know all too well what the chances are. So, I'm grateful for every second I have with my children. It makes me sick how sooo many moms out there just abandon their children, hurt or kill them while here are sooo many wonderful loving parents who have to fight for our childrens lives. It just doesn't seem fair or right. It's life and nobody ever said it was fair. Anyways, I'm hopping off of here to share computer time. Thank you all for keeping Skyler and all the other wonderful children in your prayers. Much love!! Will update as soon as possible. Take care. Always enjoy your day!

Much Love,
Kim and Skyler
XOXO

Please pray for Justin, Owen, Noah, Zack, Dylan, Taylor, Jack and all the other brave, sweet children fighting this fight. Please pray for the families who have to spend each night with only a memory of their precious child...please pray for them to have strength to go on another day.

Just wanted to add....my email account is soooo backed up I don't even want to check it. Hopefully one day I will be brave enough to. Sorry if I haven't written anybody back...not ignoring you!! Will do it asap. Thanks for understanding!!

Wednesday, February 27, 2008 4:18 PM CST

Hey All!! Okay I know I never update like I say I do. My computer is fried and intil I can get it repaired I'm completly lost without it. So please bear with me. Skyler is doing good. He's almost finished his 42 days of Temador. I was sure he would need atleast one platelet transfusion before we head back to NYC. However that is not the case...he amazes me every single day. We were going to our pediatrician for CBC instead of wasting all day downtown just for counts. The first time we checked his platelets were 68...the following monday dropped down to 61 the next week he jumped to 72 and this past monday he was 82...so amazing I must say. Otherwise he's doing good. We finally got his hearing aids fixed although he doesnt mind wearing them he just insists that he can hear us without them. I know better cause he's reading our lips. Sneaky little guy. He's going to school three days a week and really loves going. I'm soo pleased that was one of the things that made him sad in NYC that he would never go to school again. We are heading back to the city for our complete workup. March 3rd the fun starts and hopefully we will be heading home the 6th. I have court on the 7th for my car accident where I totalled my car. Luckily nobody realy got hurt and thank GOD the kids weren't in the car. Everything else can be replaced so I'm not too worried about it. I'm really keeping my fingers crossed that Skyler isn't HAMA positive anymore and we will be able to come back the following week for our second cycle of 3F8. I'm looking forward to it cause I know it's our only option at the moment but I hate it cause I know how much pain and agony it causes my sweet little guy. Otherwise, Sophie is getting big and bossy...She'll be three in April..where does the time go? Please pray for all of our friends in NYC and the ones at home fighting the beast. Not sure when they last time I updated was. However, we made a family trip down to Disneyworld as Skyler had never been before. Let me tell you. They had a BLAST!! We got to go with some really great families we have met along our journey. Will update once we are in NYC. I hate scan time and know looking at him on the outside he looks fantastic however we never know how the inside looks....sigh...I hate this feeling. I always wish I could fast forward through the scans and other tests and just get the results. Please keep him in your prayers for good results...and to be Hama negative. Keep our other families in your prayers. Owen just relapsed AGAIN and Justin is doing better but not as good we we'd like. Please pray for our other NB friends. Take care. Always try to enjoy your day...never know when it'll be your last.

Love always,
Kim and Skyler
XOXO

I will post new pictures of our trip to Disney as soon as my computer is back up and running!!

Saturday, January 12, 2008 10:38 AM CST

Hey All!! Yes, we all know I'm terrible at updating. Skyler is doing wonderful. Guess I should finish off by saying he the last two days of 3F8 weren't easy. Friday the 21st we missed our flight due to Skyler having such high blood pressure for over three hours. They had to give him some lasiks to help bring it down. Due to the pain meds they give him it kinda freezes his bladder so he can't pee. Which I guess in turn elevated his blood pressure. Sooo, we still made it home out of determination by way of the bus. :) We had a wonderful Christmas. The kids got sooo much stuff. I have to give a HUGE thank you out to Joyce Hayer and her family for making Skyler's Christmas extra special. We met Joyce back in 2004 in Clinic down at MCV. She was a volunteer there plus her son was treated there before hand. We fell in love with Joyce right off the bat and I believe she did with us. She even kept Sophie overnight one night when she was 6 weeks old. Skyler was being admitted for his 104.7 fever thanks to the Adenovirus. So, of course she couldn't come to the PICU. Anyways, Joyce has been a HUGE support to our family....even if we just need somebody to call and cry on the phone with. She's always there. She got a bunch of presents together for Skyler and Sophie. Payson another wonderful volunteer from the clinic....(he's always santa, easter bunny, etc.) We LOVE him!! He dressed up like Santa and somehow my father got the fire truck they use here in our area that has a sleigh on it for santa runs each year. So, Payson (dressed as santa) was sitting on top the truck and they came to our house. Skyler's face was priceless!! I have to say it brought tears to my eyes to know there are still soooo many wonderful, special people out there wanting to help others. Skyler was sooo happy and the moment was priceless!! Sophie was scared of Santa but enjoyed the toys, the fire truck noises and all the attention. I will post pictures asap. Anyways, Skyler's sixth birthday was Dec. 29th. I can't believe he's already six and all the torture he has had to endure the last three years. He's my hero and my insperation. Skyler has been going back to school three days a week. Wow, I have never seen a kid sooo excited to go back and want to stay there longer than he should. :) Finally, we have an appointment with Skyler's audiologist here in Richmond. He will finally get new molds for his hearing aids. YEAH!!! We are heading to Disney World on Jan 24th. We are all sooo excited!! We received word that Skyler is HAMA positive after only one cycle of the 3F8. You want HAMA just not this early. The Dr's really wanted them to get atleast four cycles of the antibodies in before HAMA. So, we are just waiting to hear from Dr. Kramer with our plan. I heard maybe 45 days on a at home, low dose, oral chemo? Well, whatever they wanna do let hurry up and get it started. I do not like waiting without do any type of treatment. I will try and update again soon!! I know I'm late but Happy Holidays and Hope everybody is having a wonderful New Year so far!!

Please pray for Brian's family as he passed away New Years Day!!

Please pray for Justin, Kieran, Zack, Zach, Sean, Dylan and all of the other children who are dealing with this horrible beast!!

Take care, Thank you all for checking in on us!!

Love Always,
Kim and Skyler
XOXO

Wednesday, December 19, 2007 2:07 PM CST

Hey All!! Okay so as we all know I'm horrible at updating. :) Things are good. Skyler had a round of scans and everything came back clean. Thank goodness!! His counts are still messing with us however transfusions always make those better. :)Skyler and I got to go back to Va for this past weekend. It was nice to see Sophie and to be home for a few days!! Skyler enjoyed it and played with Sophie almost the whole time...although she was attached at my hip. :) It had been close to a month since I had seen her. It was really nice. It's soo sad how fast she's growing up and I'm missing all of it!! Skyler is doing well. We started 3F8 antibody injections Monday, Dec 17th. Let me just say nothing anybody says can prepare you for what it causes. The actual infusion only lasts a half an hour with like a 10-15 minute flush. Skyler started with horrible pain only about 10-15 minutes into the infusion so he had pain for quite a while. That night he complained of his feet hurting him...which seemed to quickly disappear with a few good foot rubs. :) Yesterday, I have to admit was much easier. Skyler had a lot of pain. However, it didn't start intil about 20 minutes into the infusion and he handled it quite well. He seemed to kinda get into a zone and seemed to talk to himself...all I saw was his lips moving as if he was comforting himself. :) He's such a brave little guy!! He complained of his legs and feet hurting last night and didn't want to walk much. This morning his feet were still hurting him...which I heard was rather normal. So, today I have to admit was easier than Monday but harder than yesterday. Skyler had quite a bit of pain and was in just sheer pain for a good half an hour. He's resting comfortablly now. He's getting a blood transfusion as his hemoglobin was 7.7 and he will receive platelets tomorrow as he only has 21 today. I'm really impressed with how well he's doing with everything. He doesn't mind me giving him his shots in the morning...first thing. This morning he gave me a little hard time but still let me do it. I have been giving him these shots for a week now and Friday will be his last day of me having to do them for this cycle. Let me say I have done just about everything medical wise to him but I have NEVER given him a shot before this. I was really scared I wouldn't be able to....I'm actually very proud of myself cause it was easier than I thought. He told me it didn't hurt which made me feel better. I'm just soo proud of him for being such a brave, strong little guy!! Two more days of torture and we will be able to go home for three weeks. Let me say that is a gift in itself and will be our longest stay at home since we started this new journey back in July. Skyler and I will be at home for the holidays and for Skyler's 6th birthday which is in ten days!! He's sooo excited to be turning 6 and tells just about everybody that his birthday is almost here. :) Please pray that this treatment will cure his little body of this horrible beast. I can't imagine making him go through all this pain for nothing!! I will try and update tomorrow if not I will def. update Friday. Thank you for checking in on us!! Take care.

Have a wonderful day!!
Much Love,
Kim and Skyler

Tuesday, November 27, 2007 9:32 PM CST

Hey All!! Again it's been a while since my last update. Skyler has had hurdle after hurdle to get over just to do his second dose of the 8H9. He was admitted on a Tuesday night a few weeks ago. By 5am Wed. morning his liver enzymes were elevated AGAIN!! Sooo, He was due to be admitted today for the small dose of his 8H9 injection tomorrow. So, we get to clinic today...do a cbc. He has 7 platelets. Let me start out by saying they transfuse at 20. A normal persons platelet count is well over 100. Soo, he was extremally low. He had a transfusion in clinic today while we waited for our room which brought his platelets up to 121!! Let's see what they are by morning. We can't figure out why his platelets are disappearing sooo quickly. He also had to get a blood transfusion a week ago. He hasn't had chemo in months!! The 8H9 can affect the platelets just don't think this much!! The dr's are baffled to say the least!! They have scheduled a bone marrow asperation for the morning. Hopefully that will tell us something. Not sure if he's relapsed or not. Hoping not just know anything is possible with this horrible beast!! Skyler is in good spirts, active and happy as always!! So, that makes things a little easier!! I'm just worn out from all of this!! I know I can't give up and know Skyler is what keeps me strong!! So, hopefully we will find out what is going on soon. I will update as soon as I find out something. Please keep Kieran, Justin, Jack, George and all the families who are fighting this disease now!! Kieran is in the PICU with a horrible case of RSV. Please pray for him and his family!! Justin has relapsed for the third time. Please pray for him and his family!! Hopefully enough money will be raised to humanize the 3F8 antibody treatment. Please go to www.bandofparents.org and please check out www.loneliestroad.org. These are two wonderful websites with LOTS of things to offer!! Thank you for checking in on us!! Take care. Enjoy your day!!

Much Love,
Kim and Skyler

Wednesday, November 7, 2007 3:55 PM CST

Hey All!! Thought I would update a little!! Okay, well Skyler was admitted last night into the hospital for his next dose of the 8H9 antibody. However, today his liver enzymes decided to act up. They are well over 300 at the moment sooo that means no injection for him today! They are releasing us from the hospital soon. Soo, the plan now is to watch his enzymes over the next week...since they have been perfect for the last two weeks. IF they don't go down then they want to start him on the 3F8 antibody...which Matt and I both have mixed feelings about. Soo, he and I are supposed to talk tonight and decide on what we want to do at this point. IF his liver enzymes go down next week then the plan will be to go ahead and continue with the 8H9 which is REALLY what I would like to do. So, only time will tell now. Skyler is going to Rhode Island to spend time with Matt's family for the weekend. It'll be a nice break for him to get away from the hospital and the Ronald Mcdonald house for a few days. Plus, it'll be a nice break for me. :) I will keep you all posted. Hopefully we can continue with the 8H9....Take care. Thank you for checking in on our little guy!! Enjoy your day!!

Much Love,
Kim and Skyler

Sunday, November 4, 2007 9:17 PM CST

Hey All!! Okay so let's see how long I can keep this up. :) Skyler's doing MUCH better!! We spent most of the day in the hospital (Urgent care unit) on Saturday. Skyler was bruising very very easily and noticed quite a few bruises in really odd places on him Friday night. Sooo, figured his platelets were low. Yep! I was right! His platelet count was 16....they transfuse at 20. He didn't have to be back into clinic intil Tuesday...so I'm really glad I took him. Gut feeling!! Sooo, supposed to call clinic tomorrow am and see if they want him to come in tomorrow for a CBC to see if he'll need more platelets or just wait for Tuesday as scheduled! He is due to be admitted on Tuesday afternoon for his low dose of the 8H9. I always have mixed feelings on this!! I'm excited cause I'm ready to get this antibody into him and nervous cause it is experimental. Otherwise, he's doing wonderful!! NY had their annual marathon today! Wow! Does this city get excited for it!! It's a 26 mile run to raise money for all kinds of organizations. Lance Armstrong ran it!! Soo, a lot of the streets were blocked off!! It was really neat! Seemed like there was a parade instead of just runners. There was a dad from the house that ran...he also biked for the Loneliest Road. www.loneliestroad.org...and also check out www.bandofparents.org. Please help if you can!! Also, a guy that works at the RMDH also ran the race!! I couldn't imagine running 26 miles. Atleast it was a really nice day!! Hopefully enough money can be raised to finally humanize the Antibody treatment. This will help out soooo many children fight back!! Well, guess that's really it!! Skyler's hair is growing back and it's coming in quickly. Oh, almost forgot!! Tonight they had a really nice dinner/carnival type thing for the kids. They had clowns, Micky and Minni mouse, face painting, cotton candy, popcorn, ice cream, games, and toys!! It was A LOT of fun!! Skyler really enjoyed himself. However, I have noticed that when there is a lot of noise in a room he can't hear me without his hearing aids. Sadly, Sloan Kettering has an audiologist however they don't do hearing aids if needed. Which I think is strange. Sooo, I'm hoping I can get him an appointment to get new molds for his hearing aids when we are able to come home again for a hopefully two weeks at the end of the month!! Skyler's birthday is coming up in Dec. I honestly can't believe he will be six years old!! He's been fighting this beast of a disease for three years now!! He had his anniversary on the 26th of Oct. Seems like a day I will never ever forget no matter how much time goes by. Okay, well I'm going to close now!! Thank you soo much for checking in on Skyler!! He's my sunshine!! Take care. Enjoy your evening!!

Much Love,
Kim and Skyler
XOXO

Thursday, November 1, 2007 11:58 AM CDT

Hey All!! Again, I'm horrible at updating this page. Sooo much has happened since my last update. I know I will never remember everything!! Well, Skyler finished up radiation all 17 treatments. He also did several rounds of low dose chemo. Which he handled like a champ. He had his ommaya placed (the port in his head which will let him receive the 8H9 antibody injections) He received his first round...which consists of a low dose of the antibody. He tolerated it quite well except for his liver enzymes became elevated so we had to wait an extra week for the large dose. Which he also tolerated quite well. We then got 10 days off to go back to Va. It was nice to finally get back home and able to see Sophie and everybody!! Gosh, Sophie is getting soo big and I miss her sooo much!! She'll call us and talk on the phone now...she always wants to talk to Skyler. Sad part is she'll tell him she loves him and only tell me she misses me. :) Silly kids. Anyways, Skyler is HAMA negative so he will be admitted on the 7th of Nov for the next small dose of the 8H9. and Hopefully on the 13th he'll be admitted again for the large dose...all depends on his liver again. This injection makes him radioactive so we get a private room. The big injection they put this huge metal shield in between us so I'm not totally exposed to the radiation. Sad what we have to do to out children. Skyler is NED (no evidence of disease) He had an MRI of his brain on Tuesday and an MRI of his spine yesterday!! I'm sure most of you know Little Grace Oughton passed away early am on the 29th of October. She has been fighting hard for the last two years!! However, this beast was progressivly spreading. Please keep her family in your prayers. Grace is no longer hurting and is playing with her other friends in heaven. Please pray for her family to have the strength to get through this. I honestly can't imagine loosing Skyler. I will fight for him forever if I have to. Also, please pray for Grace's little brother Landon....I will update again soon. The RMDH has been keeping up busy with LOTS of activities for Halloween. Skyler went trick or treating yesterday and had LOTS of fun. He hasn't been feeling so good lately...Hoping it's just a stomach bug. Thank you for checking in on us! again I apologize for not keeping this site updated. I know I forgot a lot of things that have happened and I'm sorry for that!! Thank you!! Take care. Enjoy your day!!

Love always,
Kim

Please pray for Jack Brown....they left a couple weeks ago with bad news. They are starting the MIBG treatment in the UK. Also, please pray for George another guy from the UK. They left well over a month ago with bad news.....heard it's only getting worse. Please pray for him and his family!!

Friday, August 3, 2007 10:08 AM CDT

Hey All!! I apologize for not updating sooner. I had a wonderful weekend at home. Skyler enjoyed having time with his daddy, grandmother and grandfather. The following week Skyler had radiation and chemo combanation all week. He had radiation in the morning and a little over an hour long chemo afterwards. He handled it quite well. The only real side effect he got was diarreha but that didn't start intil monday of this week. So thankfully that is easily controlled with medicine. Thank goodness for that since he had lost a kilogram. He's only had radiation this week and we will finish up our 17 days of it this coming Wed. Skyler got 12 days of radiation to his head and spine. They are doing 5 days (which started yesterday) of a higher dose to just his head where the tumor was. His hair started falling out two days ago which was expected and he knew it was going to happen. A girl here at the house told him his hair was coming in so nicely. He looked at her with this serious look and said "No, it's going to fall out." He's soo funny cause it started falling out the very next day. Anyways, only the hair on the top of his head has fallen out with a few here and there. He looked in the mirror last night and said "Hey I look like grandpa." Hehe cause he has the hair on the sides but bald on top. I couldn't stop laughing cause he was sooo right. I still giggle when I think about it. I love it!! Kids are soo honest....you never know what to expect. Otherwise he's been full of energy intil last night he seemed to get tired quicker which is of course expected. We met with Dr. Kramer yesterday and she's VERY pleased with Skyler and how well he's handling things. His blood counts are still at a very good level considering. A lot of children who have done the same thing as him have already had blood or platelet transfusions so we feel very blessed we haven't yet. We are expected to be here in New York intil the 20th of this month. So, we still have a few more weeks. However, we will get 2-3 weeks off to go home. I'm really looking forward to this since I have to move again. When it rains it pours I guess. Skyler will have his CT scan on Wed. His MIBG scan on Thursday and on Friday they will be doing his bone marrow asperation. Here they test four sites where at home they only do two. Dr. Kramer told us from the bone marrow asperation/biopsy they did back at home in June was NEGATIVE!! Which we were told it was positive so that was really music to my ears. :) So we are keeping our fingers crossed this test will come back negative. IF all his scans and tests come back negative then we will do the following week of two chemo drugs. IF we get any positive tests back we will be doing three chemo drugs. It'll be for five days and she said he may need stem cells to boost his counts. However, she said out of the 10 children she has treated only 3 have needed that. So, I'm feeling pretty confident he won't. Luckily we do have plenty of stem cells saved from his harvest back in 2004. We also were fortunate enought that Viacord stored Sophie's cord blood for free for us so that is also another option if we need it. Sooo, that's kinda our plan. We also met with Skyler's radiation doctor yesterday and she too was very pleased at how well his blood counts are hanging in there considering everything. He's really handled the radiation like a champ. Skyler's daddy is coming to visit this weekend so I can have a break. Not sure what I'm going to do but sleeping sounds really nice at this point. :) The ronald mcdonald house is really spoiling us. They have soo many activities planned each day and almost every night they cook us dinner or have dinner donated from a local restaurant. We went Kayaking a week ago on the Hudson river and Skyler LOVED it. We were also able to go to a Mets game. We were in a skybox and felt like royalty. :) However, the rain got rained out but we made it to the 5th inning. The funny thing was on the way home NYC police are soo wonderful here and that is usually our transportation for any trips we take. We were on a police bus with an off duty office driving us. We got pulled over by a police car. Come to find out we had set off the radiation detector they had. So these poilce officers thought we had a bomb or something crazy on the bus. It was just the kids setting it off from the radiation they have had. Atleast 3-4 children out of 20 people had been getting radiation or were radio-active from treatment. We all got a big laugh out of this cause you never know. :) It made us feel safe that they are checking for this however it's kinda sad cause look at what we are doing to our children. The house had a carnival for the children two nights ago. It was really nice and I must say we are really getting spoiled from all the activities and great food. There are soo many wonderful people living here at the house. It's nice to talk to the other Neuroblastoma families so many similiar stories and soo many different. It's nice cause we can all relate and we all can understand about the disease. There are 70-80% of the families here that are Neuroblastoma. Some people have lived here for 3 years or less. It really makes us feel fortunate. I guess that's it for now. I will do a better job of updating as things will be getting rough for Skyler from now on. Even though I'm sooo proud of him. He still doesn't have a port yet and won't for atleast a few more weeks. they will put that into his head so he can get the 8H9 injections straight to his brain and spinal fluid. So, he has to get a temp. IV line every monday and it seems almost all week but last friday and today he has had to get an extra stick just for one day!! we get them to take it out on Fridays so he can enjoy his weekend without the extra "boo-boo." Skyler sits very still and does such a good job of getting stuck. He just tells them about the turnick(oops not a good speller) "don't tie it too tight." He's sooo brave and watching him gives me the strength I need to help him get through this. Thank god for that!! Anyways, I will update sooner I promise. Thank you all for checking in on our pecious boy. He's truly my sunshine and couldn't imagine this world without his bright rays of light. Take care. God Bless!! Always enjoy your day!! Even the worse days you have to enjoy cause it could ALWAYS be worse. :) We love you all!! Thanks again!!

Take care
Much Love,
Kim and Skyler
XOXO

Wednesday, July 18, 2007 5:49 PM CDT

Okay so thought I would add a quick update. Skyler is doing WONDERFUL!! He's enjoying NYC and excited for his weekend visit with his daddy. He started radiation Tuesday. We have done two days and only have 15 left. When I say only that's cause we have met many people who do radiation twice a day for MONTHS!! So we are pretty lucky in my opinion. Skyler really tried hard to get his treatment today without anesthesia however we finally went ahead and gave him a little nap. The molding he has to lay face down in is VERY hard and VERY uncomfortable. He would have had to lay completly still for 20 minutes. Which would have been hard for me to do myself. I'm sooo proud of him for trying as hard as he did. He makes me sooo proud and the strength he gives me is unbelieveable. He goes back tomorrow morning and same on Friday. He's handling treatment well and so far hasn't had any complaints except for a slight headache last night. We are expecting him to loose his hair from the radiation within a week or so. No suprise as that was expected and who cares hair always grows back right? Besides the least of our worries at this point. However, we took a trip with the Ronald Mcdonald house to the ASPCA here in New york. It's only a few miles from the house and it was nice to visit all the special animals who need wonderful homes. Not sure if you all have seen "Animal Precenct" on the Animal Planet. Well, we were fortunate enough to meet two of the wonderful officers from the show. They are truly amazing in what they do and I must say truly amazing people in general. It was very nice to chat with them and have them take some time out of their busy schedule. One of the officers has a daughter Skylers age who is thankfully in remission but had a brain tumor and continues to fight a disease similiar to Skylers. It was very nice to talk to him about his daughter. Saw pictures and she is absolutly GORGEOUS!! The officers let Skyler and some of the other children play in the ASPCA "cop" car as Skyler called it. They got to do the lights and make lots and lots of loud noise. :) Don't think the people living around were too happy but oh well. I got some good pictures and hopefully will be able to update the pictures on this page this weekend when I'm able to get home for a couple of days. Missing my Sophie girl and Skyler seems to be missing her too. So, hopefully she'll hitch a ride back to NYC to see her bubby. :) Skyler's making lots of friends and enjoying playing in the play room. They are having "camp" here at the house and we got to plant some flowers today. Skyler LOVED it and was a HUGE help in every way. He's my sunshine. :) Anyways, I think I'm just rambling now...so much for a short update right? :) I will update this weekend hopefully with new pictures. Soooo...thank you all soo much for your prayers and support you honestly don't know how much it means to us. Also, we have met many many wonderful families here. It's nice since 700f the families here are Neuroblastoma patients....some relapse some not. Soooo, it's nice to have others who can relate and share their stories. Also, nice to hear about their treatment and get tips on what to expect on our journey. Thanks again!! Much Love! XOXO

Always Enjoy your day!! Be THANKFUL for EVERYTHING!! Never take a moment for granted. :)

Love always,
Kim
XOXO

Saturday, July 14, 2007 2:22 PM CDT

Hey All!! Okay well I must start off by saying we are here in New York City!! We got here Thursday evening and are expected to be here for atleast a month. I'm a country girl so I'm completly lost here in the "big city." Slowly getting used to it though. Anyways, Skyler got his radiation stimulation done yesterday so he has more "polka dots" as he calls them. :) We are expected to start the radiation on Tuesday. They want to do 12 low dose treatments to his head and spine and 5 higher doses just to his head since that is where the tumor was found. Not quite sure yet when we will be starting the chemo or the antibody treatment. One day at a time is all we can do now. Skyler is feeling WONDERFUL!! He LOVES the city and enjoyed our little adventure to Central Park today. He LOVES the Ronald Mcdonald house and is more excited about getting the key than he was about the plane ride up. Silly kids. :) Anyways, we are having trouble with our insurance and they don't want to cover ANYTHING while we are here in NY since it's all out of state. Blah Blah Blah. Sooooo, gives us something else to worry about. Either way we have decided that Memorial Sloan Kettering is the BEST place for him and he WILL get treatment here regardless of the price or what we have to do. We want to cure this horrible monster of a disease not postpone it. No child should have to deal with this and if you know of a facility that can cure it then why would you want to go anywhere else? I know we don't. Well, guess I'm just rambling along now. :) I'll update next week and hopefully with only good news!! So far things have been great! We have met some WONDERFUL families here and the staff is AMAZING!! We love all of the doctors and their staff soo far too. Thank you all for checking in on our precious big boy!! It truly means a lot to us for all the love and support we are receiving. Take care. Always enjoy your day!! Please pray for Bria, Grace, Noah (who's relapsed again for his second time), Owen, Dylan and all the other brave children fighting a disease that they don't deserve to have. :) Love you!!

Much Love,
Kim
XOXO

Okay for some reason my email isn't getting changed below. Our new email address is: Skylermom01@yahoo.com.

Sunday, June 17, 2007 10:42 PM CDT

Okay so I must apologize first for being such a slacker on updating. It's been almost a year. Wow where does the time fly? HAPPY FATHERS DAY TO ALL OF YOU SPECIAL DADDIES!! Well, Skyler has done wonderful this past year. However, he has relapsed. They found a good sized tumor(about the size of a 9 volt battery...you know the small square ones.) Anyways, they found that tumor in his brain on Friday night. He had been very sick and vomiting all week...complaining his head hurt him very very badly. So, after being at the peditricians all week we decided to bring him to the ER. Where we did a head CT scan and found the tumor. We aren't sure if it's in his bone marrow again or not. We had a very scary night last night. Skyler has been in the PICU since we were admitted. Thank god for their wonderful very QUICK skills. Skyler wasn't very responsive yesterday...slept very sound most of the day. Around 8pm the nurses changed shifts. We noticed he wasn't responding to us AT ALL. So, she looked at his eyes with the flashlight. Bad news. His right pupil didn't dialiate. Soooo, the craziness began. They gave him some meds to reduce the amount of fluids that were on his brain. Preped him for an emergency surgery. However, in the process the left eye also didn't want to dialate so that really scared us all. However, they were finally able to get him to respond and say "Hi" before sedating him for surgery. They had to rush him to the operating room and remove the tumor ASAP. His brain was swelling and the pressure was unbelievable. The tumor had been bleeding but nothing recent. The surgery was very very successful. They were able to remove the whole thing and less than two hours. He's recovering very very nicely. You would never believe looking at him that he just had brain surgery 24 hours ago. He's sitting up, eating, talking our ears off and just being his sweet adorable little self. The nurses are all falling in love with him cause he's just soo polite and easy going. He's doing quite well and hopefully can go home soon. We aren't sure what the treatment will be for him. I know they still need to do a full body scan and to check his bone marrow. We'll worry about that in the morning. Otherwise I'm very pleased and couldn't be happier that the surgery is now behind us. We are very seriously considering taking Skyler to Sloan Kettering for the clinical trials they are offering there. Hopefully the DR will accept him into his program. We'll find out with the next couple of days...we hope. I will try and do my best to update. Just know that no news if good news....usually. :) Thank you!! Take care. God Bless!! Much Love!! XOXO Kim

Wednesday, August 30, 2006 8:58 AM EST

Hey All!! Here is our monthly update!! Whew!! Glad August is almost over what a busy month!! Let me start off by saying Skyler's scans were ALL clean..even the MIBG. Which we are opting to do this time around as well. :)
Sophie had her 15 month check up on Aug. 1st. She's still in the 50-75 percentile for everything!! She has hit a growth spurt and is really shooting up. She's teething and seems very irritable. She's still soo docile and just goes with the flow for the most part. Thank goodness!! She's my very own cabbage patch kid. :) She's truly a doll.
Matt and I had our 4th year wedding anniversary on August 7th. We had a nice dinner together. He's my world and my rock. He always keeps me strong and is truly the love of my life. :) Thank you for everything!! I love you Honey!!
We had our long over due family portraits done on August 12th. I'll be posting pictures from that. They really turned out very nice! We are soo pleased. We had them done at Maymont Park and must say we had a wonderful time. Skyler enjoyed rolling down the big hill. :)
Skyler had his hearing re-tested on August 14th. We received almost the exact same results from last time. Signifigant to Profound hearing loss. Sooo, He's being fitted for his hearing aids on Sept. 11th. Thank god for these remarkable inventions that make life soo much easier. We were told he had a "chemo" hearing loss which is very common for children who receive high doses of chemotherapy (cisplatin) and other drugs can affect this as well. The way we look at it is...well, it could have been worse. He's here with us to love and hold. Fixing the problems caused from treatment seems very minor since we know they can be easily fixed. :)
Sadly another year has gone by. My birthday was on the 18th and I turned 24 years old. Wow, seems like yesterday Skyler was just born. :)
August 19th we had a Crab Feast here in Mechanicsville. It was nice as I was able to go out with my friends and actually enjoy myself. Which isn't something I do very often....my choice of course. I prefer to stay at home with my family. Matt was soo sweet and stayed home to watch the children. :) Thank you!
Alright, remember how I was saying Skyler was having a full evaluation done for school?? Speach eval, learning eval etc? Well, we had our meeting on August 22nd to discuss everything. Skyler is in normal range for learning which means he will not need special education classes. Good News!! His speach he will require one day a week. I believe he's starting the day after he gets his hearing aids. I know we have another meeting on Sept. 12th. Either way the evaluation showed basically that he's a typical 4 year old. Praise the Lord!! He's had enough set backs in his life and I'm sooo happy to know that he's still "Right where he should be." :)He's starting pre-school on Sept. 6th. He'll be going Mon, Wed, and Fri all day. I know he'll enjoy it and we'll LOVE getting picturs to put on the fridge.
We had a worker from Make a Wish come out on the 23rd to re-evaluate his "treehouse" which when it was done was more like a very cheaply made Play house. Had to mention that it wasn't very safe for him. He got many many splinters from the front porch. The slide isn't bolted down, it's kinda rigged. So, when Skyler comes down the slide he either lands on his butt or on all fours it's almost impossible for him to land on his feet. There are many other problems with this wish. So, we contacted Make a Wish and with me being relentless they are going to take this playhouse away and actually give him the treehouse that he asked for. He had this house put in back in April and only played on it for the first week. He doesn't want to go back on it because it hurts him. I can't say that I blame him. So, she came out to look at sites and get some measurements. We will post pictures as soon as it's fixed. The whole point of Make a Wish is to grant a terminally ill child's ONE wish and to make this child HAPPY! Unfortunatly that wasn't done here...they are working on it though. Thank you!! Skyler hasn't stopped talking about it and seems very excited.
Skyler had clinic yesterday and saw Dr. Massey. We haven't seen her in months. She's the sweetest lady I think I have EVER met. She's truly amazing! Skyler is doing wonderful!! He weighs 32 pounds which he seems to be maintaining...just like through treatment he ALWAYS maintained 28 pounds...even with chemotherapy. No TPN needed here except in transplant but that was scary..try and forget those days. His blood counts are ALL within the normal ranges. PRAISE THE LORD!! His liver enzymes looks the BEST that they have ever looked. THANK YOU LORD!! Which means he can finally discontinue the Ursodiol which he's been on for over a year. 3 times a day is really hard to do when we seem to always be on the go now a days. No complaints though as it could ALWAYS be worse. :) With this medicine gone he no longer has any he needs to take. He finished up the Bactrim in July. Wow, I honestly never thought we would see this day with him and NO medicines. We couldn't be happier.
Life seems pretty normal now. I must say it was a hard adjustment from the totally abnormal lifestyle we knew for atleast 16 months to this one normal one. We are soo grateful to be where we are today!!
Well, that puts an ending to our month of August. Skyler doesn't go back to clinic for 6 weeks. So, far September looks pretty boring except for school. :) So, I'll update as soon as possible. Probally in another month. Skyler re-scans in Oct.
Thank you all for always checking in on our very special boy. We love you all!! Take care. Enjoy your day!!

Much Love!!
Kim

Wed, Aug. 3rd, 2006

Just wanted to update everybody on Skyler's scan results. Everything came back NEGATIVE!! The MIBG was clean!! We are sooo pleased with the results!! We will re-scan in 3 months. Skyler is doing just wonderful. He went to clinic Monday the 31st and got a great report!! He's doing absolutly wonderful!! I've updated the pictures as well!! Skyler is very comfortable at the pedatricians office and they love him. Our fav. nurse is going on leave soon to have her baby boy. :) We are going to miss her. However, when we went for Sophie's 15 month check up we got to meet the new nurse. She's very very nice and let Skyler wear her glasses. :) He LOVES this picture and thought I would share it!! I've also updated pictures of Sophie and more of Skyler. :) Hope you enjoy then!! I'll update soon as Skyler goes to clinic the end of this month. Take care. Enjoy your day!! Much Love!!




Sunday, July 16, 2006 12:40pm EST

Hey All!! Wow! Times flies. I apologize for the delay in updating. We have been busy busy busy! Let's see...where to start. :)
Skyler did very well at his dentist appointment and was helping them clean his teeth by the end of it. That boy is not shy!! He did give us a kinda hard time getting X-rays but we were all laughing by the end of it. He did GREAT!! They just LOVED him...it's hard not to though!! Well, we got bad news from the dentist but it was kinda expected. 19 out of his 20 teeth need to be capped. From the harsh drugs at such a young age did a number on his teeth. I honestly believe it had a lot to do with the Adenovirus after his transplant. He was just soooo sick with the virus and not to mention he had a very severe case of moucisitis(sp?) Anyways, teeth can be fixed very easily so it could have been worse. :) Skyler had his teeth done on June 29th. They went ahead and did all 20 teeth. I'll have to post pictures from before and after. It's AMAZING!! He is such a handsome boy! He's soo funny. When he first got his "new teeth" he had to show everybody and find out what they though. :) He did wonderful though!!
Skyler had his speach and learning ability evaluated in June. He will be doing speach therapy once a week when school starts again. Which isn't as bad as we thought. It's probally from his hearing loss. Which he will be re-evaluated for that again on Aug. 14th. So, we'll see where we stand then. :) As far as his learning ability he's "right where he should be." Which was such good news to hear!! I didn't have any concerns but it's always nice to know for sure. Skyler will be starting Pre-K this fall. We were able to get him into one of the BEST programs in our area. We are very fortunate for that. He'll be going three days a week. Mon, Wed and Fri. I think this is going to be harder on Mom than on him. Atleast I'll have some much needed one on one time with my Sophie girl. Skyler will enjoy all the enteraction with the other children. He's such a social butterfly. :)
Skyler got his live vaccinations on June 12th. He's up to date on his vaccination intil Sept. Wow, I can't believe we've already done them all over again!! When he starts school he should be fully covered from any bad germies. That just makes me feel much much better about sending him to school. :)
We all took a vacation to Rhode Island for a family reunion on June 22nd-27th. It was really nice to see everybody. My sister-in-law is pregnant with her second baby girl. She's actually past due now and will be enduced on Monday. I have to say she looked soooo beautiful. We had a really nice time visiting everybody. It ended way too soon and we are hoping to be able to move there soon.
We hope you all had a wonderful 4th of July. We enjoyed a nice cookout at Matt's cousin's house. The children enjoyed playing the pool and with the other children. We then went to the Richmond International Raceway for fireworks. It was an extremally HOT STILL day!! But, the evening turned off very nice! It cooled down and we had a nie breaze. Skyler LOVED the fire works!! Daddy let him sit on top of the van so he could get a good view! We actualy got two shows (as we could see the fireworks from the Richmond Braves Diamond) Sophie sat in my lap and was in awe with the whole thing. She didn't get spooked intil the grand finale but Mom covered her ears and hugged her tight. :)
Okay, Skyler had his CT scan July 10th and his Bone scan July 11th. He did BOTH without anesethia!! He drank both cups of contrasting and did wonderful!!! The bone scan he was just silly...Dr. Dunn called us on the 11th. (I must admit I was petrified that she called. The motto "no news is good news" is usually what we go by for scans/labs. A phone call right away usually means very bad news!!) She said his scans "looked great no questions asked!!" So, that was a HUGE relief as I've been rather nervous about the scan results. Both little boys we know with NB at VCU/MCV hospital have both relapsed. As most of you know Owen is already in treatment in NY and doing absolutly WONDERFUL!! However, the other little boy Noah has relapsed. This family is going through a really though time right now. They are not sure if they will be able to do NY due to a lot of issues going on in the ir life. PLEASE PLEASE PLEASE pray for this family and send them LOTS of happy thoughts as they need it. Anyways Owen relapsed at 6 months off of treatment and I believe Noah relapsed at 9 months off treatment. Skyler is now 6 months off of treament. We know the odds of this horrible disease and want to stay as far ahead of it as we can. So, Matt and I both requested they do an MIBG scan. The CT scan is only of his abdomen and pelvis so they do not scan the rest of his body for tumors. They do a whole body bone scan but not a whole body tumor scan. So, we are doing it with the MIBG scan. Skyler gets injected on July 18th and he'll scan the 19th, 20th and 21st. please pray for good result from this!! Both boys relapsed in their skull as I've been told is the fav. place for NB to come back....regardless if it was there or not to begin with. Just want to stay on top of it. :)
Alright, I scared myself on Friday. Sophie has been having a few symptoms very similiar to Skyler before he was diagnosed. She was sweating a lot, very very fussy a lot of diarreha, and she'd been sleeping a lot. So, Friday was just a bad day. I freaked out! I took her to the pediatrician to have labs run etc etc. When we got there the DR was unimpressed basically as she was active, playful, brain function looked good, she was growing blah blah blah. He said looked at her hands, feet and mouth, along with her back etc. He said she had Hand, Mouth and Foot disease?? He said it's just a virus and would be gone in a few days. He said since with the family history of NB that he would reassure me and do bloodwork. I asked him if he thought it was necessary and he said no he didn't. I hate to make her go through something if she doesn't have to. So, I said that I would keep an extra close eye on her for a few days. IF she didn't get any better I would bring her back for those tests. She does have her 15 month check up on the 1st of Aug. So, they can always be drawn then. We didn't see our usual DR and will wait to speak to her. She is the DR who diagnosed Skyler and I would feel a little more comfortable talking to her and knowing her opinion. :) She's WONDERFUL!! Sophie weighs 24 pounds and 3 ounces. She's just the cutest, sweetest baby. She reminds me sooo much of a cabbage patch kid. She has these beautiful chunky legs and these beautiful rosy cheeks. Oh, she was born with straight hair...this child now has the curliest hair. It's ringlets. We get compliments on it EVERYWHERE we go. Some people would pay good money for her hair....I know I would if it could look as gorgeous as hers. :) She's babbling and saying a few things. She's walking everywhere. She's sooo laid back and easy to please. Thank goodness because Skyler is very high maintance. I always thought the boys were easy and the girls were the tough ones....I guess that chages with the age. :)
Well, We are taking a mini family vacation to Va Beach this coming weekend. We are going camping at a state park there. It's beautiful as it's right on the Chesapeake Bay with a private beach. Skyler will enjoy playing the sand. He bought a spongebobe kite (He's driving us crazy to fly it but we have tooo many trees where we live it just wouldn't work)and Sophie I know she'll love the sand and the water. Matt gave Skyler his skim board..Skyler calls it his "skateboard" so Skyler is really going to enjoy himself. We are leaving the 21st in the afternoon and will get back on the 24th. We all need a relaxing getaway after all the stressing we have been doing.
Skyler goes back to clinic on the 31st of July. So, I'll update afterwards. alright, I think that's it for this update. I hope I didn't leave anything out!!
Please pray for Good MIBG results for Skyler. Please pray for Owen as he is HAMA positive right now BUT doing fantastic!! Please pray for Noah and his family as they are going through an extremally rough time right now. Please pray for Miss Bria to get rid of her infection so she can have her surgery!! God Bless!! Thank you all for checking in on us!!

Much Love,
Kim

Thursday, May 18, 2006 3:46 PM EST

Hi All!! How are you doing? Here is our monthly update. I've also posted new pictures. :) Skyler had another bone scan on Monday the 15th. We went to clinic today to find out the results. He had a spot on his fibula (front shin bone of leg) that was lighting up. He rescanned and has another spot on the other leg. The doctors aren't worried about these spots as they are very common for "rough and tough" little boys like Skyler. We also found out that Neuroblastoma usually starts at the end of a bone not in the middle. So, that made us feel MUCH better. :) Skyler weighs 32.8 pounds...He's gained 2 ounces since last month. He's 98.3cm tall. He also sat very still and let them stick him for blood. He did WONDERFUL!! I'm soo proud of him! He doesn't have to go back to clinic for 6 weeks!! We are very blessed!! He's doing absolutly wonderful!! I must add this funny story too!! Skyler decided today that he was going to pee in a cup in front of EVERYBODY in clinic. We went to get a cup and he had already pulled his pants down and was ready. Thank goodness he waited. LOL :) I've never been sooo embarrassed. However, they all got a good laugh out of it. :)

We do need to have his speech evaluated and have another hearing test done. He does show some signs of his hearing loss and we need to determine the full extent of it. He also will be going to the dentist on Tuesday the 23rd. He will just have a checkup and a cleaning. We need to determine the extent of the damage from all the drugs he has received over the last two years. This will be his first visit to a dentist...this will be very interesting. :)

Sophie is 13 months old now and walking. She's sooo cute. Her hair is soo long and thick....not to mention very curly. She came along to clinic today and got eaten up by everybody. It's been a couple months since she last went to clinic with us. She's a wonderful girl and still sooo passive. Skyler's very good with her and she just thinks the world of him. She's talking some.

Make-A-Wish is coming out Saturday at 10am to set up Skyler's treehouse. We are all very excited about this....expecially Skyler. I'll post a picture of it. What a wonderful organization!!

We have been having the crazy spring Va weather. We've had some really gorgeous days with lots of rainy days in between. :) No complaints it's very nice this time of year!! We've been enjoying OUTSIDE as much as possible these days!!

I'll update again when our month is up! I may update before then. Take care. Thank you all soo much for checking in on our precious child. We are soo blessed to have him with us and doing well. Take care. Enjoy your day!!

Much Love,
Kim

Saturday, April 29, 2006 11:27 PM EST

UPDATE: We received some news back on Skyler's bone scan. There is an area on his fibia that is lighting up. It's very possible that he could have bumped or hit the area. However, we aren't sure and he will be rescanned hopefully before the 18th of May. PLEASE pray for good results. We aren't too worried unless it shows up again. Skyler is ALL boy so that means rough and tough. His little legs have several bruises so we are hoping that is just the cause of this myterious spot lighting up. Please please please pray for him and pray that we will NOT receive bad news....



Friday, April 21, 2006 7:47 AM EST

Good Morning!! Just wanted to quickly update Skyler's page. We have been enjoying April with all the beautiful weather we are having. Skyler is doing wonderful. I kinda goofed on his scans this week. His bone scan was on the 17th and CT was on the 18th. Yikes we forgot about the bone scan and never got a reminder call so that is rescheduled for the 26th. However, we went to clinic yesterday. Skyler's CT scan is good and shows NO reaccurances....PRAISE THE LORD!! He also was able to drink the contract and do it WITHOUT anestheia...which he has NEVER done before. I'm sooo proud of him!! He's doing well and Dr. Dunn seemed very pleased with him.

Sophie had her first birthday on the 8th of April. I'll be posting new pictures of both soon. I hope everybody had a wonderful Easter as we enjoyed ourselves. Skyler enjoyed the easter egg hunt we had at the house.

Also, I received a phone call from a woman who runs program through ASK an orginization that helps families who have been affected by cancer....A lot like Child life. Anyways. She wants me to be a part of the program and be a mentor for a new family. Newly diagnosed with NEuroblastoma stage IV. A little girl 2.5 years old. I do not know much about this yet as I'm meeting with Leslie on Monday to talk with her. However, I found out yesterday that they have an 11 week old baby. This truly touched my heart and sounded SOOOO familiar to us. Skyler was diagnosed 2 months and 3 days before his 3rd birthday.....I was 14 weeks pregnant. I can totally relate to this family and am hoping this family decides to become a part of the family to family program. :)I feel very honored that they thought I would be perfect for this.

Let's see we haven't had a lot going on here. Skyler had another baby shot on the 6th of April. Skyler will start getting live vaccinations at his next pediatrician visit. YIKES!! But, I'm soo happy we are finally to this point. Sophie goes for her year check up on the 25th.Time flies when you are soo preoccupied. I still can't get believe Sophie is a year old already. She's sooo cute and has 6 teeth.

We will be having a fundraiser on the 22nd (this aturday) to benefit 3- $2,000 scholorships for three Hanover High Seniors who have been affected by Cancer, ASK a local orginization that helps families with children who have cancer and the rest will go to Skyler's medical fund. It's calling for rain but please pray God gives us a GORGEOUS day!!

I'll update again soon. I'll be posting new pictures from Sophie's birthday and Easter soon...Hope all of you have a wonderful day!! Take care!! God Bless!!

We love you!!
Kim

Sunday, March 26, 2006 7:19 PM EST

Hey All!! How are you doing? I know my month isn't up but wanted to update. :) We all have been doing just wonderful. We have gotten a final answer on NY. We will NOT be going!! YEAH!! We feel this is really good news. They would not want to treat Skyler unless he relapses or was no later than 4 months out from stem cell transplant. Since he's still showing no evidence and is doing sooo well they do not want to do anything. So, that makes me feel MUCH better. We as parents just want to do the best thing for our child....don't we all? Skyler does have a bone scan and CT scan on April 17th. Please pray these give us good results. We will than see the DR on the 20th. Hopefully only to hear good news.

We have a play date with our buddy Owen on Wed. Skyler and I are both very excited. We haven't seen Owen and his mother, Karin in quite sometime. So, this will be nice for us.

We were fortunate enough to have the Richmond Times dispatch do another story on Skyler. Well, it's to help bring attention to the benefit we will be having in April. It's called the Jamie and Skyler Day of Hope!! If you are interested in information on this I can mail out flyers. Also, will post the website for the article once it's printed.

Skyler goes back to the peditrician on the 6th of April. If I remember correctly he'll only get one shot this time. That'll be pretty easy for him. Considering he was getting three and four at a time. Starting Sept. he'll be going ot "big boy" school. He's soo excited.

Well, just wanted to quickly update. Thank you all for checking in on us. I'll be updating the photo album soon. Take care. Have a wonderful evening!!

Much Love,
Kim

THIS IS A QUICK UPDATE 3/31. The Richmond Times Dispatch has been kind enough to have Skyler in another article. Here is the link and instructions to see this article. Very cute!! Thank you!!

www.timesdispatch.com
Then click on Metro & Virginia
Than click on Local News
Than click on Hanover county
I think it's the third link down on this page. It says "A Thank you from the zoo." Please check it out!!

Saturday, March 18, 2006 2:29pm EST

Hey All!! We don't have much news for this month. Skyler is continuing to thrive. He's growing and steadly gaining weight. This boy is FULL Of energy!! So needless to say he's doing wonderful!!

He saw his oncologist earlier this month. He enjoyed going to clinic because he's FINALLY off of isolation. He's been on that since he as admitted for his stem cell transplant back in April '05. So, this is a HUGE deal for him. It's been his first real visit that he could interact with the other children...besides sitting in his room and looking out. His dr. was very pleased with him. Skyler did very well with being stuck for his blood tests. He goes back to clinic April 20th. He does have a bone scan and CT scan on the 17th. PLEASE pray for good results.

Skyler also went to see his nurse at the pediatricians for three more shots. He goes back in April for only one. YEAH!!! Skyler was soooo sweet. His nurse gave him the shots...he's screaming and crying of course. She got him a sucker with these funny teeth on one side. He said thank you and then grabbed her and said "I need to give you a hug and kiss" so they hugged and she turned her cheek to him for her kiss. He said "No, I want lips." It was the sweetest thing. He then of course had to hug and kiss three or four other ladies before we left. He then had to tell them "Bye, I love you!!" before we could leave. :)

Matt and I have been struggling with one of the hardest decision I think we have ever been faced with. We are trying to decide if we want to start taking Skyler to MSKCC for the 3F8 clinical trial. We want to make the right decision for him and not make him go through anymore than necessary. However, we do want to stay ahead of this horrible disease.....Please offer your thoughts....expecially families who are already in the program. Please pray that god will give us the strength to make the right decision. Our little buddy, Owen goes and his mother speaks very highly of it!!

Sophie continues to thrive as well. She's such a flirt. She smiles and giggles at everybody. I mean EVERYBODY!! Today we went into the gas station the man behind the counter was too busy playing with her then ringing us up. She was just smiling and giggling away at him. Oh boy! Are we in trouble.....:) She's standing for short periods of time without holding. She's almost able to stand up by herself without any help. She's in a hurry to keep up with Skyler.....again I'm in trouble. :) She still doesn't have teeth yet but they are just below the surface....so it won't be long. She babbles away and will tell you what she wants in her own way. She's such a cutie pie. She'll be a year old April 8th. She'll return to the peditrican for her year check up towards the end of April. She's a big girl and such a sweet snuggly girl.

My father is recovering quite well from his double-knee replacement. He's walking on his own without any help. He's driving again. YEAH!! :) He has lost 27 pounds!! WAY TO GO DAD!! We are all soo proud of you!!

Well, I guess that concludes this journal update. We have had a pretty boring month as far as appointments. We've been enjoying this gorgeous weather by going to the park, to get ice cream and just hanging around the house outside. Thank you for checking in on us!! Take care. Have a wonderful weekend!!

Much Love,
Kim

Please don't forget to sign the guestbook. I'll be updating the photo album soon. :)

Tuesday, February 21, 2006 2:49 PM EST

Hey All! Sorry for being a few days late updating. We've had such a busy month but, with LOTS of great news!! Let's see, Skyler took his last Accutane on the 19th of Jan. So, he's OFF of treatment. YEA!!! All of Skylers scans/tests came back negative. He had his double lumen hickman removed the 9th of Feb. WOOHOO!! He's healed up nicely and is enjoying having no "lines."

He went to see the audiologist on the 6th of Feb. His hearing has dramatically decreased in both ears. It's possible that it is from the chemotherapy and will repair itself but then again maybe not. So, this is the only not so good news we received...not too bad. However, Jennifer the audiologist said the hearing decrease looks like it's drug related. We have been noticing a speach impairment since atleast Sept. So, he will be evaluated and then decide what our next step is.

Skyler is steadly gaining weight and getting sooo tall. He's FINALLY potty trained. He still wears diapers at night but the last two nights they have been dry. He's just a truly amazing kid.

We just got back yesterday from Rhode Island. Matt's grandparent's celebrated their 50th wedding anniversary. It was a suprise party and it was soo wonderful. We enjoyed seeing everybody only wished it had lasted longer. We love and miss you all!!

Boo-Boo is doing wonderful. His knee replacments are working properly and he's now walking without a cane or any support. He's truly amazing and it's nice to see him out and about again. He said he doesn't feel quite ready to drive yet but hopefully soon. I made a mistake in my last post. My father is a type two diabetic I thought it ment he was insulin dependant that is very wrong. Thank goodness. His type is controlled by diet. He's already lost 14 pounds in the past 6 weeks. Way to go Dad! We are all very proud of you!

Matt went back to working 5-8 hour days instead of the 4-10 hours days we have been used to. We all miss him on Fridays! He did however get a weekend away with the guys. He and three of guys from work went to Myrtle Beach the first weekend in Feb. It was 4 days full of golf...his paradise. :) We are all happy Daddy is home we missed him very much!! He had a great time though...a much needed break!

Sophie is standing and walking...holding on of course. She's just figuring out that she can get around faster crawling on her kness instead of the army crawl. :) She's still a very big girl...she's thinning out and getting sooo long. She's still the best baby...she's finally truly teething so we are hoping anyday now we'll have her first tooth in. :) She enjoyed all the attention when we went to visit her Great-grandparents, grandparents, Aunts, Uncles, cousins and everybody else we didn't mention. :)

Skyler loved seeing everybody again. He's really missed not getting to see all of the family. He's used to going up to Rhode Island and staying for 2-6 weeks. Not for 2-3 days. But, he did very well He enjoyed playing with his cousins, Aunts and Uncles. He's a ball full of energy and a chatterbox. But, everybody loved seeing him. :)

Skyler goes back to clinic on the 2nd of March. He'll go back to the peditrician on the 7th for 3 more shots. He received 4 shots on the 7th of Feb. I'll be glad when they are over. He was a very big boy at last visit I must say. He sat still on the table while she gave him the shots. He screamed and cried but didn't move. Nobody had to hold him....like we usually do. So, he got several spongebob stickers and a slurpee! What a big boy!! We are soooo proud of him.

Well, Thank you all for stopping by and checking in on us. I'll update next month. Take care. Have a wonderful day!!

Much Love,
Kim

Sunday, January 15, 2006 11:04 AM EST

Hey all!! Just wanted to update and sorry for the lack of. We have been very busy here with the holidays, appointments..etc. Well, Skyler had a wonderful Christmas and got most of what he asked for. He then turned four on the 29th of Dec. He got the rest then. :) He wanted an ice cream cake and a spongebob pinatia...so of course he got it. :)

Skyler went to the Kidney dr. on the 4th. They are still running tests but there seems to be some kidney damage...it's very minimual but still there. I'm guessing it's from the Cidovior a chemo drug that was used to kill the Adenovirus...which almost took our baby boy from us. So, I will take what I can get to have our son. :) We need to get a 24 hour urine sample for a test called electro phoresis. We've always done the 12 hour urine sample for his protocal but I believe the 24 hour one is going to be a little tricky. It's worth a shot instead of them putting a catheter in. That will be our very last resort.

Skyler and Sophie went to the peditrician on the 10th. Skyler has to get all of his baby shots over again. Due to his stem cell transplant this wiped out all of his protection he had gotten as a baby. Which may be a good thing and hopefully it wiped out the Neuroblastoma too. Only time will tell. However, it felt funny taking Skyler to the peditrician. We saw Dr. Philips and will continue seeing her. She is the Dr. Skyler last saw before we were sent to the ER in Oct. '04. He had to get 4 shots this time and will go back in four weeks probally for four more. He still can't have live vaccinations and will probally be atleast 6 months before he can get them. So, we'll do the easy ones first. He did run a low grade fever from these but no other symptoms. Thank goodness!! Skyler weighs 32 pounds and is 37 inches tall. Skyler is still showing no evidence of disease and has gained 4 pounds since he finished Chemo and gotten over the Adenovirus. He's steadly growing and looks amazing!!

Sophie had to get 2 shots. She doesn't go back intil she's a year old in April. She is 19 pounds and 11 ounces and she's 27.5 inches long. Gosh, they grow fast. She's sitting up all by herself. She's ALMOST crawling. She gets on her knees and rocks so we are thinking any day now. She's strong on her feet. If she's anything like her brother she'll be walking before the end of Feb. She is a good eater and is sleeping through the night. She's the best natured baby and is soo happy all the time. She's very patient already and is such a dream come true. Still no teeth thought but, we are working on that. :)

Skyler has gotten his first haircut...besides the one he gave himself. :) He's due for another but can't believe he actually has hair to cut. We've been taking him to the park to get out and get some fresh air. He met a little boy there on Friday. Skyler had a small scratch above his eye. The little boy pointed to it and said "what's that?" Skyler responded with "My hair." :) The mom then explained that he has a birthmark on his face and is soo used to everybody asking what it is. I thought it was the cutest thing!! Skyler is soo used to not having hair that he's very proud of it.

We have been having awfully strange weather. It's been in the mid to high 50's. Not complaining but we are just taking advantage of it while we can. :)

Skyler is on day 11 of his last cycle of Accutane. YIPEE!! I thought this would never come. He begins his scans and tests again the end of January. He has his bone scan, CT and Bone Marrow Asperation again. The MIBG will begin the first week of Feb. Wed, Thurs, and Friday. So we'll have a busy week. Then, if all of those come back clean...which they will then they will remove his hickman!! This will be a gift in itself. No more worries about it getting pulled out. No more maintence and no more flushing!! Skyler tells me that the "funny white medicine" (propafol)makes his lines come out. :) He's rather excited about it too. He keeps saying he can't wait so he can go to the park with no "band aid." We can set our pool up this year and he's sooo excited that he can go swimming. He was sooo sick last summer that the only thing we had on our minds were getting him out of the PICU and home. Skyler and Sophie both LOVE the water. Skyler has always been my waterboy. The summer of '04 he was in the pool EVERYDAY!! It was a smaller pool. Our family has grown and we upgraded the end of last summer. The one thing I noticed that summer was with Skyler in the water/sun all day everyday he never got a tan. He was always sooo pale but I never thought anything of it. He's always had a fair complexion and I do too. It takes me FOREVER to get a base tan and by then the summer is over. :) But, this year he actually has freckles. :) So we are very excited!!

Wanted to update you all on our little buddy Owen. He's doing well he spent Christmas and the beginning of the New year in the hospital due to Phenumonia that he caught when his counts were very low due to chemo. He's doing well and is starting the clinical trial 3F8 antibody injections at Sloan-Kettering very soon. Please pray that this rids his precious body of this horrible disease. Bless him and his family. We love them!!

My father or better known as Boo-Boo had both his knees replaced on the 9th of January. He's doing better but isn't expected to come home for another week or so. He's always been a border line diabetic but they have started him on Insulin shots and declared him as being type two diabetic and he will now be insulin dependent for the rest of his life. Two shots a day. Poor guy. He can only have 5 ounces of sweetened ice tea a day...I believe and that is all dad used to drink. He LOVES sweets and will now have to be very careful to eat a heathly, balanced meal. He's doing physical therapy now and has been told he's doing very well. He's very overweight and hopefully he can work on that too. We are planning to go visit him today.

Well, Hope all is well for everybody who is checking in on us. Please sign our guestbook and let us know who you are. I have updated the pictures so please be sure to check them out.

Please pray for Skyler's tests/scans to all come back negative. Please pray for Owen and that the 3F8 antibodies will rid his precious body of this horrible disease once and for all. Please pray for our friend, Laura her mother underwent surgery on the 9th. Please pray for Boo-Boo to get home soon....We miss him!! Please pray for Ami to return home where she belongs.

Take care. Have a wonderful day!! I'll update as soon as I receive Skyler's results from his scans/tests. God bless you!!

We love you!
Kim

Sunday, December 18, 2005 2:34 PM EST

Hey All! It's been a month since my last update and will probally continue updating once a month. Not too much is happening here. Skyler is almost finished his 5th cycle of Accutane one more left and treatment is finished. All of Skyler's scans and bone marrow asperation all came back negative. He's continuing to improve every day. His hair is getting long and in need of a haircut. He gave himself a little haircut himself on the 8th. We went to visit family in Rhode Island and left here on the evening of the 8th...Skyler sporting his new all by himself haircut. :) We stayed for a few days we all had a wonderful time but only wished we could have stayed longer. The weather has been pretty mild here considering it's almost Christmas. Matt and I have just about finished our christmas shopping. Due to Skyler's stem cell transplant he will need to get all of his baby shots again as they have been wiped out of his body. So, he has an appointment to get that done on the 10th of Jan...along with Sophie for her 9 month checkup. Skyler also has an appointment with the kidney dr the first of Jan....sometime. Otherwise, things are good here and we are all getting ready for santa to come. Well, sorry for such a short update but we have been enjoying our time together at home this year. I will update if we have any news but intil then take care. Enjoy your christmas and have a happy new year!!

Take care! God Bless!!

Love you all!
Kim

Thursday, November 17, 2005 8:39 Am EST

Hey All! Thought I'd do an update on Skyler's page...I'm getting so behind on it. Anyways, Skyler had his scans all last week. So far so good...no news is good news. But, from what I've heard everything looks good. They have scheduled his Bone marrow asperation for Dec 1st. Let's just pray that comes back negative too. Skyler is doing great! He's battling a small cold but seems to be doing much better today. Sophie also has it. Lucky for Matt and I we both haven't gotten it yet.

Yesterday was a sad day for me. I found out that one of Skyler's little buddies passed away on Sunday. They were in transplant together. Latraz was only 5 years old and won his battle with ALL(leukemia). The funeral is today and I'd really like to go but not sure if I would be able to handle it. So we are planning to send her a gift card or something special besides flowers. I think I'd like to remember Latraz the way I knew him. An extremally adorable, precious 5 year old boy. He had to use a bone marrow doner for his transplant and was having some issues with graft vs host. I do not know the reason he passed away. Please pray for his friends and mostly his family to give them the strength they need. God Bless!!

On a happier note I'm going to be out of commission for several days. I'm having my wisdom teeth removed Friday morning. I've never been under anesthesia before and am a little nervous. But, lucky for me I only have two bottom wisdom teeth my top two never developed...I guess that only makes a half wise. :) Just kidding. They are using three anesthesia drugs, two have been used for Skyler before. Propofol (wrong spelling) but that is Skyler's famous "funny white medicine." So, I'm nervous and curious at the same time. I've heard the propofol gives adults VERY nice dreams but besides that I could use a good uninterupted 45 minute nap. :)

We will be wrapping gifts for ASK the week after Thanksgiving. We are still in need of volunteers to help us wrap. Please email if you'd like to help! Also, gift donations would be greatly appriciated as well. Well, I'll do my best to update his site again next week. Thank you all for checking in on us and keep up with Mr. Skyler. It truly means a lot to us. Please don't forget to sign the guestbook. We'd like to know who you are!! :) Thank you! Take care. Have a wonderful day!

God Bless!
Much Love,
Kim

Saturday, November 5, 2005 9:21am EST

Hey all! Thought I would update today. I forgot to mention in my last post that Oct 26th marks our year mark for Skyler's diagnosis. I can't believe it's already been a year but in a way I can. I can remember everything about that day like it was yesterday. Skyler is doing soo much better this year than he was last....we are very thankful to still have our little guy around. Can't wait for his 4th birthday!! We did have some issues with his Hickman last week and had to have it repaired on Monday and on Wed. I thought it was infected so I took him to clinic. It wasn't thank god!! We only have a few more months before the Hickman will be taken out. We can't wait!! I just can't emphasis enough on how well he's doing. He's gained a pound in a week and is up to 31 pounds. He's getting soooo tall and shooting out of his 18-24 months that he's been in for two years and straight into 4T. YIPPEE!!! Skyler's scans start next week...the week of the 7th. Monday he gets his bone scan, tuesday injected for his MIBG. Wed, Thurs and Friday he'll have his MIBG scans. Wed. after his MIBG they will transport him to CT scan....since he needs to be sedated for the scans anesthesia doesn't like to put anybody out twice in a day...Makes it easier for me. :) Anethesia will already be with us soo no waiting for them. When he gets CT scans we always have a problem with Anethesia being very late..one time they were almost 2 hours late and since Skyler can't eat 8 hours before it's very hard for him and me since he doesn't understand why he can't eat. Not sure what day he'll have his bone marrow asperation....they are trying for Tuesday but not sure yet. Not sure If I mentioned before but having his bone marrow asperation is optional this time in his protocal. But, Matt and I have decided we would like to go ahead and do it. Next scans and tests aren't for another 3 months so we'd like to know as soon as possible if something isn't right. Well, I'll update again soon. Just remember no news is good news! :) Thank you all for checking in on us and keeping up with us through the good and bad times. Take care. Have a wonderful day!!

Much Love,
Kim

P.s. Sophie is doing great!! She's rolling all over the room and doesn't stay in one spot too long. I'm afraid she's going to be like her brother....always on the go. He started walking at 9.5 months and by 10 months he was RUNNING!! I was hoping she'd sit still for a while but doesn't seem that way. :) Take Care!!

Wednesday, October 26, 2005 6:00Pm EST

Hey All! Sorry for the lack of updating. Skyler is doing great! He's off of his antibiotics and doing much better. He had clinic today and his counts are still going up. His platelets have FINALLY gone above 100 thousand...he's at 107. Hemoglobin was 10.3 and ANC was 2.6. He's been leaking protein into his urine but it's slightly lower this time. They believe this is from the Cidovior that was used to treat the Adenovirus. He had to take a medicine 3 hous before, 2 hours after and 9 hours after the cidovior that was to protect his kidneys. This was the hardest medicine to get in him. It only came in pill form and was quite large. However, Skyler doesn' have the concept of swallowing a pill...he's only had liquids. So we crushed it and for a while he had an NG tube in his nose which was easy to get the medicine in....however once that was gone the pharmacists crushed and tripled flavored it for him and he still made him sick. So, it's very possible his kidneys were slightly damage from this. Which in my opinion isn't too bad considering the cidovior saved his life. Anyways, he will be going to see a Kidney Dr soon to discuss this with him. Today is Skyler's last day of the Accutane for this cycle...three down and three more to go. :) Starting the week of the 7th Skyler has his scans and tests starting again. The Bone marrow assperation is optional at this point but I would rather cover all the bases and find anything early than wait another 3-6 months. So, we'll find out for sure about that tomorrow. Well, Just wanted to update. Sophie went to her dr's appointment with Dr. Philips(who admitted Skyler) Sophie weighed 16 pounds and 11 ounces she is 26.5 inches long. She's doing great!! Dr. Philips was very pleased to see Skyler and also very happy to see Sophie....Poor Sophie has been through sooo much even before she entered the world. :) Well, Just wanted to update. I'll update again soon. Just think if this site isn't updated than Skyler is doing great!! Thank you for checking in on him. Take care. Enjoy your day!

Much Love,
Kim

Please sign the guestbook let us know you where here. Also, I have updated the Photo Album...check it out!

Tuesday, October 11, 2005 2:19 PM EST

Hey All! Thought I would quickly update! Skyler came home Friday evening from the hospital. He has a serious blood infection but is now feeling MUCH better. He's bouncing off the walls. :) He's on gentimician once a day, vancyomician twice a day and merripenem three times a day all IV. The anitbotics will continue for about another week. Let's hope this clears up the problem. Skyler hadn't been in the hospital for 3 months before this happened. We should have known that was too much of a break. :) Skyler was able to go to The Incredibles on Ice Sunday. He really enjoyed himself. He's still talking about it. :) Skyler had clinic today and checked out okay....we are still waiting on his counts etc. But, I'm sure they will come back just fine. Sophie has her 6 month check up tomorrow with the doctor who admitted Skyler almost a year ago to the day. I counted back from the day he was diagnosed and from what I remember she saw him on the 14 of Oct last year. So it's going to be a very emotional visit but a good one I hope. Sophie has a lymph node on the back of her skull that has worried me since she was born. However, every doctor visit I ask about it and it always checks out okay. So please keep your fingers crossed. I haven't seen Owen in clinic recently so that is a good sign. I have to assume he's doing good. Well, Take care.

Have a wonderful day!
Much Love,
Kim

Wednesday, October 5, 2005 2:06 PM EST

Hey All! Sorry for the lack of updating. Everything was going very well for Mr Skyler for several months. We however had to take him to the ER on Sunday evening due to a fever. He was admitted of course and hasn't had a fever since Monday morning. They thought his hickman was infected but it isn't...he has a type of bacteria in his blood. He's doing much better and is ready to go home. He was supposed to go to Disney on Ice tonight. It is the Incredibles. Disney is doing a really great special program for the Richmond Metro area. They are pickig an Incredible police officer and an Incredible kid for each county in the metro area. Skyler was picked to be the Incredible kid for Hanover County. However, since he's in-patient he isn't able to make it to the special event before the show. He would have met Mr. and Mrs. Incredible. We were told that we will be going home by the weekend and the last show is on Sunday...so please pray he'll make it. I can't express in words how grateful and how much this truly means to us to be honored like this. The Incredible officer that was assigned to Skyler came to visit him today. Skyler was sleeping but I woke him up before he left. He brought Skyler lots of goodies. Skyler was tickled...a little grumpy at first but once he woke up he was very excited. We are now watching the Incredibles. :) Well, I just wanted to update and let everybody know how things are going. I will update again soon. I hope all is well. Thank you all soo much for checking in on our baby. Take care.

Enjoy your day!
Much Love,
Kim

Thursday, September 15, 2005 12:23pm EST

Hey All! Just wanted to do an update. I'm slacking in that department. :) Anyways! Skyler is doing GREAT!! He's gained 3 pounds since April...2 of those were within the last 3-4 weeks. I'm sooo proud of him. He's doing sooo much better. He's VERY active so he's feeling like his old self. He is getting sooo much hair. Please forgive me for not updating his pictures. I will soon....I promise. :) We haven't been able to start the second cycle of Accutane. Skyler is leaking just a little bit of protein into his urine so that is keeping us from starting. We are a week behind but we are hoping for good results from the tests today. We should know shortly. I'll try and get the new pictures up by the end of the weekend. Sophie is also doing great! She's getting sooo big. She's getting very frustrated because she can't move much yet. She is rolling over and sitting up supported. She loves feeding times and is a good eater. :) Well, I'll update soon. Take care. Enjoy your day!

Much Love,
Kim

Thank you for checking in on our precious boy. It truly means a lot to us. So please let us know you stopped by and sign his guestbook. Thanks! :)

Wednesday, September 7, 2005 12:59pm EST

Hey All!

Just wanted to update Skyler's site. He went to clinic today and has gained 2 kilos in two weeks. YIPEE!!!He's doing absolutly wonderful. He has gotten soo many comments on his hair. He tells everybody that his hair is green. :) No idea why but who cares. He starts his second cycle of the Accutane tomorrow. His counts are good as well. He's VERY active so I would say he's feeling like his old self. Sophie went to he doctor a week ago. She weighs 14.9lbs and is 25 inches long. She's in the 75% for her height and weight. So she's doing GREAT!!! Double her and you almost have Skyler. :) We started feeding her baby Hi Kim
I think I told you that this is my mom's house and furniture so I am just trying to set it up for you all cause she doesn't have or know how to use the computer-LOL
ANyway, she is not able to help you lift so it will have to be on Saturday after 5 PM cause she works every weekend too and she is having her other furniture delivered on Sunday so she has to absolutely get it out of the house on Saturday. She said she spent 2 hours vacuuming and getting the sofa and chair looking nice for you
I am sure you can find it on mapquest so here is her address, she is off of Williamsburg road between Bulter and Eanes and the address is 2403 Farrand St, Richmond VA 23231
Email me what time you and your husband can be there so I can let her know-thanks
Lisa

cereal last night....I love this stage. :) Well, I'll update more later. Skyler doesn't have to go back to clinic for two weeks. Yippee!! He goes tomorrow to see Dr. Morris who is his Radiation therapy doctor....just for a follow up visit. So, hope everything is going good for you all. Thank you soo much for checking in on us. Take care.

Have a wonderful day!
Kim

Monday, August 29, 2005 12:28pm EST

Hey All,
How are you doing? Things are going great here. I haven't received his counts yet as they were going to let me know via telephone. So, waiting for that but I'm sure they will be great. He's truly doing wonderful. However, He's still "shedding" the Adenovirus but nothing to worry about unless it gets into his blood again...Please pray that doesn't happen. He's still slowly gaining weight. Pediasure drinks have become our best friend. Skyler drinks his maximum of 4 a day. He's on day 4 off of the Accutane. He will continue that again on the 8th. So far so good. The Accutane are geltabs and he takes them like a champ. We give them to him with chocolate frosting. So what a good treat too. I will update again soon. We don't go back to clinic intil the 7th of Sept. Please pray that we won't have to return any sooner than that. Thank you all for checking in on us. It truly means a lot. Take care. Keep the prayers coming. Also, a quick update on Owen. He had his CT scans the other week and they showed no evidence of disease. They also did his bone marrow biopsy and that came back negative...however they still want to give him another bone marrow transplant. This time with his sisters....if she is a match. They did the DNA testing last week I believe. So PLEASE pray that she will be a match. Otherwise, He's doing great!!! Thank you all!! Take care. Have a wonderful day!!

Much Love,
Kim

Thursday, August 25, 2005 7:23pm EST

Hey All! I just wanted to quickly update Skyler site. He's doing great. His hair is getting long...a little longer than an inch. :) He's acting much more like himself before transplant. He's eating good and not vomiting. He's had a little runny nose the last two days but no fevers. So hoping it's allergies. Tonight is Skyler's last dose of the Accutane for two weeks. Wow, did those two weeks of him taking the medicine went by fast. He doesn't seem to have really bad dry skin like I expected. I'm sure his next two weeks on will dry him out. He's really tolerating his medicines good. Skyler LOVES Sophie now. He still won't admit it but he wanted her to watch Monster's Inc with him in his bedroom. He's such a sweet little guy. He's been drinking quite a few pediasure drinks daily. We are hoping that will put some weight on him....he needs it. :) Well, thank you for checking in on Skyler. He goes back to clinic on the 29th and I will update then. Take care. Have a wonderful weekend! God Bless!

We love you!
Kim

Thursday, August 18, 2005 11:31pm EST

Well, Skyler is "shedding" the adenovirus still. But, it's not in his blood. So, not too big of a concern. He's no longer doing his 12 IV fluids at night. His magnesium is a little low but nothing that can't be easily fixed. He was full of himself today. Matt and I are finally getting away without the kids. We are leaving tomorrow and getting back Sunday evening. Skyler and Sophie are staying at Aunt Cal's house...Auntie Danielle and Alivia are coming down from RI to visit. They will get in Saturday afternoon and leaving either Tuesday or Wednesday. Skyler can't wait to see Alivia "CooCoo." But, he thinks he's going back to RI with them. About this time last year.....maybe a few weeks earlier. He went to RI for 3 weeks...and a week or so the year before. He's doing much better but not that good. His platlets are still low around 27 and hemaglobin between 8-9. I will update later. Skyler goes back to clinic on the 29th. This is such a nice break. Well, take care. Enjoy your weekend..I know we will. :) Thank you for checking in on Skyler. Take care.

Much Love,
Kim

Thursday, August 18, 2005 11:31pm EST

Well, Skyler is "shedding" the adenovirus still. But, it's not in his blood. So, not too big of a concern. He's no longer doing his 12 IV fluids at night. His magnesium is a little low but nothing that can't be easily fixed. He was full of himself today. Matt and I are finally getting away without the kids. We are leaving tomorrow and getting back Sunday evening. Skyler and Sophie are staying at Aunt Cal's house...Auntie Danielle and Alivia are coming down from RI to visit. They will get in Saturday afternoon and leaving either Tuesday or Wednesday. Skyler can't wait to see Alivia "CooCoo." But, he thinks he's going back to RI with them. About this time last year.....maybe a few weeks earlier. He went to RI for 3 weeks...and a week or so the year before. He's doing much better but not that good. His platlets are still low around 27 and hemaglobin between 8-9. I will update later. Skyler goes back to clinic on the 29th. This is such a nice break. Well, take care. Enjoy your weekend..I know we will. :) Thank you for checking in on Skyler. Take care.

Much Love,
Kim

Monday, August 15, 2005 9:00pm EST

Hey All! Just wanted to update Skyler site. He's doing great! He's slowly gaining weight. He has started his final step in his protocal. He's taking Accutane and started taking that on Saturday. He's taking it twice a day. So far so good. He's tested negative for the adenovirus two weeks in a row..one more negative and we will be sure it's finally gone. They did the swab today and should know next week. :) Skyler went to clinic today and doesn't have to go back intil the 29th. WOW! This is the first time since Skyler was diagnosed that we didn't have to go to clinic atleast once or twice a week. His hair is growing in sooo fast. I will have to update his pictures again. He's hit his 100 day mark and is finally able to go outside and play without his mask. That is a huge step for us. Sophie is getting big and starting to coo. Skyler is very fond of his sister now...thank goodness. :) We saw Owen today in clinic. He's doing great! However he had a bone scan today..please pray Karin gets good results from that. He also has a CT scan and bone marrow asperation on Friday. PLEASE pray that these tests show no evidence of disease. Owen and his whole family are just amazing...they deserve some good news. I will update more later. However, if you don't see the page is update that you know Skyler is doing great!! Take care. Thank you so much for checking in on Skyler. Have a wonderful evening!

Much Love,
Kim

Saturday, August 6, 2005 7:45pm EST

Hey Everybody! I just wanted to update Skyler website. We have had nothing but good news this week. Skyler's bone marrow came back negative. He has his ultrasound on Friday to check on his liver. It looked great! His liver enzymes are now down to a pretty normal level. We are hoping to start the Accutane this coming week. That is the last part of Skyler's treatment protocal. He's doing great! His hair is coming in sooo fast. He's feeling good, eating good and pretty active. He reminds me of a 30 year old in a 3 year old's body. I have been told many times that Skyler is very articulate. He's a little perfectionest. Well, Thank you for checking in on Skyler. I will update more later. Take care.

Have a wonderful evening,
Much Love,
Kim

Wednesday, August 3, 2005 4:03pm EST

Hey All! Just wanted to do a quick update. Skyler is doing good. He has one more does of the cidovior for the adenovirus. He's testing negative for it right now but did that before and then tested positive for it again. So hopefully this will finally kill it off. However, his liver enzymes still aren't going down. So, we are hoping that it's not diseased..please pray that it isn't. Skyler had his hearing test and did pretty good. His left ear isn't perfect but doesn't need any special attention. He can still hear very well. We were pleased with the results. He's maintaing his weight and eating pretty good. His hair is growing soo fast. I will have to take new pictures and update them again. :) He had his bone marrow asperation a week ago. We are hoping to get the results back on Friday. Well, I will update as soon as I know the results to the bone marrow asperation. His MIBG came back negative...YIPEE!!! Well, Take care. Thank you for checking in on Skyler. Have a wonderful day!

Much Love,
Kim

Tuesday, July 26, 2005 12:45pm EST

Hey All! Just wanted to quickly update. Skyler had a good day in clinic yesterday. His counts are holding steady and he's doing quite well. He has 5 treatments of the cidovior left. Please pray this kills that nasty Adenovirus that almost took our baby boy from us. His hair is growing in soo rapidly and his eyelashed are sooo lon and thick. He has his bone marrow asperation tomorrow...please pray that is comes back negative. We will have a long day at clinic tomorrow but it'll be worth it for good results. :) Well, It's always worth it for Skyler. Skyler is eating MUCH better and not throwing up...YEA!! That is a huge accomplishment. We have been trying to potty train but he's not 100% but is trying very hard. :) I will update more later. Skyler's nurse Kathy called me today and left a message that she has Good News!! I'm waiting for her to call me back. IF it's really good news i'll make another update. :) I'm hoping it's just his scans all came back negative. Please pray for Skyler and for Owen. Owen is doing good and Karin cut his hair really short..he's almost lost it all again. :( Karin and the whole family is truly amazing. Please pray for them. Take care. Thank you for checking in on Skyler. It truly means a lot to us.

Much Love,
Kim

Friday, July 22, 2005 6:44pm EST

Hey All! Just thought I should update now. Skyler finished up his MIBG scans today. He has done 3 doses of the cidovior again and need to have 6 more. Hopefully this will finally get rid of this yucky Adenovirus. His hair is rapidly growing in. He now has an outline on his head. :) He's walking around and eating well. Owen started Radiation on Thursday. He's doing really good. We saw him today! Skyler will have his bone marrow asperation on Wed. Please pray we get good news from that. His counts are up Hemaglobin 9.4, ANC 1.6 and platlets 37. I will update more later. Take care. Have a wonderful weekend. Thank you for checking in on us.

Much Love,
Kim

Monday, July 18, 2005 4:43pm EST

Hey All! We are just now getting home after a loong day at the hospital. Skyler had quite a few appointments today. Whew! Glad it's over. Well, Skyler's CT scan showed nothing new which is great news. He did however test positive for the Adenovirus again. But, this time he doesn't have any symptoms. He will start the cidivoir again tomorrow and get 3 treatments of it. We are hoping that will finally get rid of it. He's doing great, his hair is rapidly growing back. He's very proud of that and likes to tell people. This week is going to be very hectic, but we'll get through it. :) We saw Owen today, he's doing great!! I will update more again later. Please pray for Skyler and Owen that god will rid their little bodies of this horrible disease. Thank you!! Take care.

Have a wonderful day!
Much Love,
Kim

Saturday, July 16, 2005 11:33am EST

Hey All!! I apologize for not updating yesterday as I promised. Skyler finished up his radiation yesterday!! Yipee!! I was also told the CT scan looked "fine." Whew! I was extremally worried about it. He has the rest of his scans and bone marrow biopsy next week. It's a full week too. :) But, after that is done I believe Skyler will only be going to clinic twice a week. It's going to be very strange not to have anything to do every day. Not complaining as the rest is much needed. :)Owen starts radiation I believe either Monday or Tuesday. He looked great on Thursday when I saw him. He's a very brave little guy! Please pray for him and his family. Let's not forget about Miss Sophie. She's getting soo big and strong. She's not quite sitting on her own yet. I gave Skyler and Sophie their first bath together the other day. I asked Skyler if he wanted her to join him and he was thrilled. They both loved it. Skyler was my big helper and helped me rinse her off. :) Sophie is soo content and happy. She sleeps through the night and will maybe wake up one time. She slept the other night from 9:30pm intil 5 or 6am the next morning. I woke up around 3-4am and checked on her. She was still sound alseep smiling away. Anyways! I have cleaning today. Take care. Thank you for checking in on Skyler. Please pray we get good results back from his scans and biopsy. Please pray that Owen will be rid of this disease once and for all. Have a wonderful Day!!

Much Love,
Kim

Thursday, July 14, 2005 9:16pm EST

Hey All! I just wanted to update Skyler's page. Skyler will finish up radiation tomorrow. YIPEE!! I can't tell you how happy I am to be able to say that. He had a CT scan yesterday and I'm very nervous about it. I was told by the people who do the CT's that there were some abnormalities and needed to take a couple more pictures. Great! Just what I wanted to hear after hearing about Owen relapsing. I'm hoping it's nothing or it's something that was already there. We have to go to clinic for counts after radiation, i'm hoping i'll get the results then. He has several scans next week. Please pray that god will rid Skyler and Owen's little bodies of this horrible disease. I will update tomorrow. I'm keeping my fingers crossed that Skyler won't need any transfusions tomorrow. He's FINALLY eating much better and keeping it down. That is a HUGE step. He's back to himself and boy is he a busy boy. :) Thank you for checking in on us. Take care. Have a wonderful evening.

Much Love,
Kim

Monday, July 11, 2005 2:42pm EST

Hey All! I have FINALLY updated all the pictures. I hope you enjoy them. Skyler is doing great!! His counts have come up on their own. YIPEE!! Thursday his hemoglobin was 7.9 and today it's 8.3. His platelets on Thursday was 27 today they are 41. So he's doing much better. I don't think he's going to need physical therapy anymore. He's up walking and running around the house. He was pretty irritable this morning but once he took a nap he woke up happy again. :) Anyways! Owen is doing good. He goes for his stimulation on Thursday to get more tattos for Radiation. I believe he'll begin Radiation again on Monday or Tuesday. Karin is looking into several different studies. Please pray that god will rid Owen's little body of this horrible disease. He doesn't deserve to have to go through this torture again. Please pray for him and his family. Thank you for checking in on Skyler. Take care. Have a wonderful day!!

Much Love,
Kim

Friday, July 8, 2005 7:21am EST

Well, I have good news and I have VERY bad news. Skyler is doing great...that is the good news. :) He's halfway through his radiation. He's off of the TPN and eating much better on his own. He still hasn't been transfused with blood as his body is still bringing his counts up even with radiation zapping them. The bad news is....Owen a little boy that was diagnosed with the same thing Skyler has they had the same exact treatment protocal. He was a year out from Transplant on April 27th 2005. He relapsed just recently within the last couple weeks. I saw him and his mother yesterday in clinic. It was not a very good day. Poor Karin she's an angel. She has been there for us ever since Skyler first was diagnosed. She has helped us sooo much and prepared us for what was ahead. She and I have gotten very close and it broke my heart yesterday to see this. They found a large tumor in Owen's head during a 6 month checkup CT scan. The tumor has been removed and Karin was told that 99.9% of the tumor was removed. However, It is back in his bone marrow. So they are talking about using his sister's bone marrow and he has to go through transplant AGAIN. Once is hard enough. PLEASE pray for Owen to get better and finally rid his body of this horrible disease. He's an adorable little guy. I will get pictures of the two together hopefully on Monday. Please pray for him as they mean sooo much to us. Take care. I will update more later. Have a wonderful day!! PRAY for Karin and Owen Lea. Thanks!

Much Love,
Kim

Wednesday, July 6, 2005 12:24pm EST

Hey All! How are you all doing? Skyler is doing GREAT!! He started radiation a week ago today. He has 7 more treatments to do. He's at home and FINALLY walking around. He has been doingt he physical therapy but in the hospital he never wanted to get out of the bed. I guess he just didn't feel good enough. Now, he's walking all around, climbing in and out of his bed and ours. He's getting back to his old self. His hemoglobin was 7.8 yesterday. They usually transfuse at 8 or below. They decided to wait and see what his body could do on it's own. But, most likley they will transfuse him tomorrow with red blood. The TPN is finished. Sykler is eating more on his own and they decided to take him off of it. YEA!!! They had cut him back to 10 hours of it instead of 14. Now he doesn't need any!! His hair, eyelashes and eyebrows are growing back in. Looks a little darker than his hair was before. It's going to be funny to see him with hair again. I can't wait!! He can't either. :) I will update this weekend. Thank the lord the prayers paid off. Thank you for checking in on Skyler. We hope everybody has a wonderful and safe 4th of July. Take care.

Have a wonderful day!
Much Love,
Kim

Monday, June 27, 2005 4:43Pm EST

Hey all! Just wanted to update Skyler's page. He is now HOME!! He's doing great and his spirits are VERY high. He's nibbling here and there and I am hoping to have him off of the TPN or atleast less of it soon. He's not too fond of Sophie anymore. He's gotten jealous and is not impressed at all. :) He has a CT scan and an MIBG tomorrow. He also has an MIBG Wed. Thurs. and Friday. Radiation starts Wed. morning and he has 12 weekdays straight. Then he will start the Accutane for 6 months and once that is completed he will be done with treatment. We will have tons of clinic visits and scans, tests and bone marrow biopsies to do. But the toughtes part is out of the way. He's feeling much more like himself and talking a lot. :) He still has the EG tube up his nose and will for maybe a week longer. It's much easier to give him his PO meds and this way we know he gets all and usually keeps it down. He has two more treatments of the cidofovir. They did cultures today to see if he is free of the adenovirus. This virus was fatal about 5 years ago. There is only one type of medicine to treat it and it's a type of chemo. Once he's done with the last two treatments then his hair will start to grow back. His eyelashes already are along with his eye brows. I'm going to miss his smooth, bald head. But, I'm going to enjoy washing his hair again abd brushing it. :) It's amazing what we used to take for granted. Now, I can't wait intil he can go swimming and get haircuts again. I also can't wait for people in public to stop staring at him and whispering. It doesn't really bother me but it does bother him. He knows there is something different about him, hecan tell by the way people treat him and act towards him in public. He handles it really good though. He LOVES Caillou. Caillou is a show that comes on PBS. It's perfect for kids with cancer. Caillou's a cartoon and he's 4 years old, bald and very curious. He likes to ask lots of quetions. It's a great teaching show. He has a younger sister and a cat. Everybody else in the show has hair. It's great! Skyler says that he is Caillou. Well, enough babbling. I'm soo excited Skyler is home. HE means the world to us. Take care. Thank you all for checking in on him. I will be extremally busy this week so please bear with me as far as updates. Take care.

Have a wonderful day!
Much love,
Kim

Thursday, June 23, 2005 12:47pm EST

Hey All! Just wanted to update you all. Skyler is doing soo much better. He's still without a fever and trying to eat. It's amazing what we used to take for granted. He's still on the TPN for 14 hours a day. I'm hoping he'll starting eating and be off of it soon. His physical therapist came in for about a half an hour today. We got him out of the bed, he walked around it and climbed into bed.(with help of course) :)He also got to walk back and forth on it. I gave him a nice warm bath today. He stayed in for about 30 minutes playing with a small white cup. He really enjoyed it and I'm sure if felt good. His body is stiff from being in the bed for 8 weeks. He has a horrible diaper rash. We are putting "bootie cream" on it. LOL The nurses make this wonderful diaper rash cream and they call it that. :)Anyways, he got 3 units of platelets and is getting his dose of Cidofovir today. He was taking his nap when I left earlier. My dad is sitting with him today. Matt's Aunt Cal is staying tonight with him. They have been such a HUGE help by sitting with him for a few hours or staying a night here and there. Skyler LOVES it too. I'm sure he gets sick of just mommy and daddy. I took Sophie for a visit today. Skyler wasn't impressed as always. :) He just turns his nose up and continues watching cartoons. He still has the EG tube up his nose, that really helps him keep down his PO meds. I will update more later. Thank you all for checking in on him. He's now "out of the woods." Take care. Have a wonderful day!

Much Love,
Kim

Tuesday, June 21, 2005 4:24pm EST

UPDATE!! Skyler is now out of the PICU. YEAH!!! He's been without a fever for over 48 hours. He's doing MUCH better. His liver enzymes are down from over 1000 to 200. His bilirueben is down from 6 to 3.2. He's not as yellow anymore and is getting the "whites" back to his eyes. :) He's doing great!! The drug Cidofovir that treats the adenovirus is a chemotherapy drug....so much for no more chemo. :) But, who cares as long as it completly kills this virus. He's on the road to recovery now and will hopefully be home soon. Just wanted to do a quick update. I will update as soon as I can. Thank you for everything! Take care.

Much love,
Kim

Have a wonderful day!! HUG and KISS your kids several times DAILY!! :)

Monday, June 20, 2005 12:56pm EST

Well, they diagnosed Skyler with Adenovirus last Monday. This virus is really dangerous. For a normal immune system it would only cause a cough and sneezing that would last for about 10-14 days. With a suppressed immune system it could be fatal and would have been several years ago. They have only one type of medicine to treat it called Cidofovir. It causes some pretty bad side effects towards the kidneys and GI tract. But is working wonders soo far. He's doing MUCH better. His liver ensymes are finally going down and his liver is getting back to normal size. His temp. hasn't gotten any higher that 100 since around 6pm last night. We may be able to take our little boy home soon. :) We are sooo thankful he's acting more like himself. We have been soo busy. This Wed. Skyler would be in the hospital for almost 8 weeks straight. He was in for 2 days shy of 4 weeks for transplant. We had him home for 2 nights and Wed will be the 4 week mark from then. On another note. :) Sophie went to the Dr on Tuesday. She weighs 10.6 pounds and is 22 1/5 inches long. She had to get 5 shots and didn't cry too much. She's a great sleeper at night. She's waking up about once a night usually around 4-6am. Which is nice. She's very content and just a love. She's the best baby. We are soooo thankful she is. :)

Well, I'm going to run. I have a lot of catching up to do around the house. Take care. Thank you for praying for Skyler. Please keep up the good work.
Take care. Have a wonderful day!

Much love,
Kim

Friday, June 10, 2005 7:46pm EST

Well, this week has been crazy. Skyler has had an echo, ultrasound of his abdomen, chest x-ray, TONS of cultures, a full body CT scan. Everything has come back negative so far. The CT scan showed his sinuses but ENT is reasurring us that even if Skyler was home and playing it would still show that. It's too dangerous to do that surgery again with his condition. His liver enzymes are still going up. It's not the type oe enzyme that TPN causes to go up. They are thinking some sort of virus. Maybe a type of Hepatitis. Not hepatitis c. They said some are treatable and some aren't. He's very weak and it's hard for him to get out of the bed now. He needs physical therapy due to this. The radius of a normal foot is 20 degrees. You need 15 to go up and down stairs. Poor Skyler only has 5. We still aren't sure what are causing the fevers. He's vomiting quite a bit as well. He started back on the G-CSF yesterday. Everybody PLEASE pray for my little boy. Please pray that god will heal his little body of this horrible disease so he can live a long and fulfilled life. Thank you for your support. Take care.

Have a wonderful evening,
Much love,
Kim

Monday, June 6, 2005 11:08pm EST

Just wanted to update everybody on Skyler. Sorry it's been a while. Things have been really crazy here. Skyler is still in the hospital still running really high fevers. They took him to the OR a week ago tomorrow to have sinus surgery. That drained his sinuses to help clear up the infection. However, he's still running really high fevers. ENT wanted to clean his sinuses one more time a week after his surgery...so we are all hoping that is our problem. Two of his cultures grew something several days ago and now neither one of them are. He was SUPPOSED to have a CT scan done today of his whole body to try and figure out what is going on. But, of course it won't happen in MAYBE Wed. He's in the intensive care because his blood pressure got really low today and they just wanted to monitor him closely. Matt said not too long after I left earlier this evening that Skyler pulled the sheet up over his head and went to sleep. The highest temp. was 104.something...under his arm which is really 105. something. He's still on the TPN and not wanting to eat. He's drinking some water but doesn't even seem interested in eating. We had a huge benefit on June 4th. There was a great turnout. The weather was gorgeous and everything really fell into place. Around 1500 people showed up throught the day. My father has a farm with lots of exotic animals. So, it was just wonderful. Too bad Skyler couldn't have been there but he was in spirit. I got him some paint and poster board. He had a great time finger painting them for the benefit. He had to cut them and glue things. He also helped me glue pictures of himself. We had a great time. :)Please keep Skyler in your prayers. Take care. Have a wonderful evening.

Much Love,
Kim

Saturday, May 28, 2005 10:12am EST

Hey all! Skyler is back in the hospital. He came home Monday evening, we were in clinc all day Tuesday and Wed. he was admitted to the hospital again due to a high fever. Come to find out he was a very severe sinus infection. While he was in the hospital after his transplant he kept having bloody noses and ENT came up and packed his nose. Well the packing stayed in way too long and we believe that is the cause of the infection. So he's still having fevers te highest one is 103.3 and that was last night/early morning. He's doing okay and needed a blood transfusion last night. He got sick this morning at medicine time...which has sorta become a routine with him. We were hoping he was coming home yesterday but since he was still spiking fevers that was out of the question. So he'll have to be in intil atleast Tuesday...altough I doubt he'll be coming home then. He's not in the intensive care unit but a step down unit where they can monitor him more closely than him being out on the floor. His platelets are holding steady..which is pretty unusual because with his high fevers his body usually burns up the platelets pretty quickly. He usually needs several transfusions of them to keep his count up. So that is good news in my opinion. I was able to donate blood yesterday at the hospital. They had a drive going and I stopped in to see if I was able to give. I couldn't remember if it was 6 or 8 weeks after having a baby that I could donate. Well turned out it was 6 weeks so I went ahead and gave some. It's saved my son's life and I know it'll help do the same for somebody else. It's the least I could do. Poor Sophie has been passed around and been staying with different people at night. She can't come to the hospital with me since Skyler is on contact precautions...I wouldn't want her around all the germs anyways. So everybody has been a HUGE help by keeping her. Although I was telling Matt that everybody else is enjoying her but us. She's such a sweet baby and sooo easy going and content. Everybody who keeps her just loves her and says she's the greatest...thank goodness. Well, I'll update more later. Raditation was supposed to start this coming Wed. But I doubt his counts will be up good enough to start that. Anyways. Thank you for checking in on us. We really appriciate it. Take care.

Have a wonderful day!
Much love,
Kim

Monday, May 23, 2005 8:50am EST

This is a very quick update. Skyler is coming home today!! YEAH!! He's doing great. I'll update more once we get him home. Thanks for checking in on him. Take care.

Have a wonderful day!
Much love,
Kim

Friday, May 20, 2005 1:42pm EST

Hey! I stayed with Skyler last night. He's feeling MUCH better and is being a little clown. He's doing quite well. We were suprised at the last minute today for a sedation and CT scan to prepare for Radiation. Things went well. Skyler got a couple tattoos so he can begin radiation Wed the 25th. These are real tattoos but they are just small dots. He has 12 treatments to do...I thought he had 15 so that was good news to me. :) He's doing great!! The doctors wanted to keep him a little longer. So he may be coming home first of the week....of course depending on how he's eating on his own. They are tapering him off of the TPN. I will update more. Thank you! Take care.

Have a wonderful day!
Much love,
Kim

Sunday, May 15, 2005 8:43PM EST

Hey! Sorry again for the lack of updating. I've been sooo exhausted. Skyler is doing great. His white count is up to 6. So he's really do well. He's able to go walking in the hall again...of course wearing his mask. He should be coming home by the weekend. Wed. is his 2 week mark from Transplant. His mouth sores are improving and he's talking quite a bit more. He's even talking about his fav. thing again which is FOOD!!! He's still on the TPN but as soon as his mouth feels better i'm sure he'll be eating again...of course if his stomach agrees with that. We have quite a bit of things to do before he can come home. We have to put new filters in the house, steam clean all the carpets, new sheets for his bed, sterilize his bathroom and only he can use it...etc. But, it'll all be worth it to have him home and feeling good again. He's soo used to sleeping in our bed it's going to be hard for him to have to sleep him his bed every night. I go back to the OB tomorrow....I can't believe it's been almost 6 weeks since Sophie was born. Time really does fly around here. Sophie is doing great. She's the sweetest baby I have ever met. She hardly ever cries and only when she's REALLY upset. It's not too often which is soo nice. She's soo adorable and just a love to have around. We are sooo thankful for her. She's awake quite a bit of the day just checking everything out. I'm sure she can't wait for her loud big brother to come home and keep her company. I know I miss my Big Helper!! I'll do my best to update again soon. Take care. Have a wonderful evening!

Much Love,
Kim

Friday, May 13, 2005 8:40pm EST

Hey All! Just wanted to quickly update Skyler's page. He's doing much better. He was sitting up in bed playing play-doh for about an hour and playing with his fishing pole. We were having a great time. The Dr's said Skyler is "right where he should be." He's in GREAT spirits and acting much more like himself. His white count today was .4....so it's slowly coming up. :) We all can't wait for him to come home....expecially Sophie. :) Well, I'll update more later. I'm exhausted tonight. Take care. Have a wonderful evening!

Much love,
Kim

Tuesday, May 10, 2005 8:34pm EST

Hey All! Yesterday was a pretty good day for Skyler. He finally broke his fever and played some. Of course, I wasn't there to see it as "Boo Boo" went up for a visit. It gave Matt, Sophie and I a chance to be together for a few hours. He's hooked up to a pump that provides him with morphine as needed for pain. His lips are now just about completly healed up. He got a total of 5 platelet transfusions yesterday. He has a good day intil he got two really bad nose bleeds yesterday evening. They finally got somebody to his room to "pack" his nose. Poor guy took it like a champ. He's such a tough, brave boy. Today he got a double dose of platelets and a blood transfusion. His nurse joked and said he's a local pharmacy today due to all the medicines and transfusions he needed. He's talking a little more and sounds better. You can tell his mouth doesn't hurt him as much. He's not complaining of the pain in his mouth or his throat. He just keeps saying his stomach hurts. He was able to drink a few sips of kool aid and keep it down...which is a HUGE step. They offered him a popcicle but I think he's afraid of getting sick...and I don't blame him. He did spike a fever again today and when i left this afternoon it was still pretty high...not as bad..101.1F where earlier if was 102.8F He'd gotten a high fever this morning...broke it around noon and spiked another one around 2pm or so. He's been sleeping most of the day. He didn't want his mommy to leave again...and told his daddy to "go home." :) Poor daddy. So I promised him I would stay tomorrow night with him again. I will try and update again very soon. We are hoping that by the weekend Skyler will be feeling more like himself. His white couts are starting to come back. They were .3 today which is a good sign. They usually come back pretty quickly once they start. However, since he's feverish he's burning up lots of platelets so i'ms sure he'll need more of them. Well, please pray Skyler can get rid of this fever and feels better soon. We are hoping he'll be coming home towards the end of next week. That is if all goes well...I'm keeping my fingers crossed. He's been such a brave boy. Take care. Thank you for checking in on our brave soldier. Sophie is also doing very well. She's such a great baby and actually lets us get sleep at night. Take care. Have a wonderful evening!


Much Love,
Kim

Monday, May 9, 2005 11:57am EST

Hey All! Sorry again about the lack of updating. I stayed at the hospital last night and will again tonight. Let's see Friday night Skyler got 3 platelet transfusions while he slept and another a little later in the morning. He started with the mouth sores friday so Saturday he was in quite a bit of pain as the mouth sores start in his mouth and go all the way to his stomach. The mucousitis is really bad and he's not talking a whole lot. Poor guy. I feel sooo bad for him. They started him on morphine and is hooking him up to a pump today for the pain. He's sleeping a lot. He also spiked a fever yesterday the highest was 102.8F. Saturday night he got a blood transfusion and more platelets. Last night he got platelets because his count was 11. After the transfusion his counts came up to 13. So as I was leaving today he was getting more platelets. He still has the pretty high fever. Poor guy he's usually a chatterbox and it hurts him to even move his mouth. His lips blistered up on friday. I will update again tomorrow. Please pray we can get this fever down. Happy belated mother's day to all those very special moms out there....you know who you are. :) Much love! Take care.

Have a wonderful day!
Kim

Saturday, May 7, 2005 12:12pm EST

Hey All! Sorry for the lack of updating. Things are going very well for Skyler. He got his transplant on Wed. Thursday he was a little sluggish. He received a platelet transfusion after several nose bleeds. He also received a blood transfusion Thursday night while he slept. He woke up Friday FULL OF HIMSELF!! He's in great spirits although he's sick of being in the hospital and wants to go home. :) He received more platelets last night and possibly more today. Otherwise he's doing great! He's still trying to eat although his stomach won't let him keep anything down. He's feeling good today as well and is still asking for Soft tacos and pepperonini pizza. :)Still no mouth sores which is great news. The dr said yesterday that he was doing "very good." So that is great news! I will try and update on a more regular basis but don't hold me to that. :) The Richmond paper did an article about Skyler. There is a website where it can be read. He's such a brave little guy and we are soooo very proud of him. I tell him how proud we are of him all the time. :) I will put the address to the website at the bottom. I hope all is doing well. Sophie is sleeping good for me at night, she's such a sweet doll baby. :) Take care.

Have a wonderful day!
Much love,
Kim


www.timesdispatch.com
Click on Metro & Virginia
Click on Religion
and then click on Inspiration.

Hope you all enjoy the article as much as we have. Thanks!

Wednesday, May 4, 2005 9:07pm EST

Hey All! Skyler had his transplant today around 2pm. He was pretty drowsy from the benedryl when I left around 7pm. So far so good. He's still trying to eat but nothing seems to stay down. All he's been talking about is soft tacos, pepperoni pizza and "Booboo" egg, bacon and sausage. "Booboo" is what he calls my dad. I will update more tomorrow. Please pray that everything continues to go so well for Skyler. He's still maintaining his 28lbs. :) He was admitted at 30lbs but throughout the last 6 months Skyler has maintained 28lbs. What a big boy. :) Sophie is doing well. She's still being a very sweet girl. Take care. Thank you for checking in on Skyler. Have a wonderful evening.

Much love,
Kim

Saturday, April 30, 2005 1:26pm EST

Well, so far things are still going good. Skyler did well yesterday. I brought him some of his fav. foods and snacks so he ate pretty well yesterday. Matt stayed the night with him last night and Skyler couldn't have cared if I left or not. Today my dad relieved Matt so we could have a few hours with Laurie, my mother in law before she left tomorrow. My dad said when they brought his oral medicines he took 2 out of the 3 and then got sick. Not from the chemo but probally just got his gag reflex going and that was it. It happened at home the other day too. But, otherwise he hasn't gotten sick yet. He's only got about 24 hours left of his chemo. We are thinking he'll have the actual transplant on Wed. Anyways I'll be staying the night tonight and will hopefully update tomorrow evening. Thank you all for the continuous support and prayers. Take care. Have a wonderful day!

Much love,
Kim

P.s. Sophie is doing well too. She's such a good and sweet girl. :)

Thursday, April 28, 2005 7:25pm EST

Hey! Well, Skyler was admitted yesterday for his transplant. They started chemo last night at 4:30pm. So far so good. He's doing good and wanting to eat Scooby doo mac and cheese. He was real irritable today, guess the chemo is already working. He's "sooo hungrey" but then food comes he doesn't want it. So he'll be eating Scooby doo mac and cheese tomorrow. :) He already wants to either go home or to clinic. He wants to eat a Boo Boo egg andtwo pieces of sausage. Boo Boo is my dad and lives next door. So Skyler is used to eating breakfast there early in the am or really anytime. :) Matt is staying the night with him tonight, but he didn't want mommy to leave. Well, I'm exhausted and will update more tomorrow or the next day. Thanks so much for checking in on Skyler. Please sign the guestbook and let him know you are thinking of him. Take care. Have a wonderful evening.

Much love,
Kim

Tuesday, April 26, 2005 3:01pm EST

Hey! I just wanted to update and let everybody know Skyler will be admitted tomorrow for his stem cell transplant. He was re-evaluated today and everything is a go for tomorrow. He's still on the antibiotics every 8 hours through an IV pump. Even as of today the cultures taken last week of the ooze that was coming from his central line site is still negative for infection. So that is good news. I'm still a little nervous about him being admitted with his site still red and still oozing some. The bone marrow dr says it doesn't look bad so we are hoping for the best. Please pray very hard for him. He will be admitted early tomorrow 8:30am and I'm hoping by noon his chemo will be started. I'm ready to get this over with and ready to see the light at the end of the tunnel. Thank you everybody for the continued support and love. Take care. I will try and update as soon as possible so please bear with me. Thanks!

Much love,
Kim

Friday, April 22, 2005 12:11pm EST

Hey! Skyler came home from the hospital yesterday. Peds surgery is still "uninpressed" with his central line. So we are hoping he will be able to keep it. He's on several different medicines that he's never had at home before. He has to be hooked up to an IV type pump for two hours every eight hours for antibiotics. So hopefully that will do the trick. His cultures didn't grow anything as far as infection. His stool did finally grow the C-dif and we will be treating that. He has to be in clinic Tuesday morning at 9am and then will be re-evaluated by transplant again at 10am. Hopefully if everything goes okay he will be admitted Wed. for transplant. Tonight at the Richmond Kickers soccer game during halftime there will be a check presented to one of us for Skyler's medical fund. A local family who lost their son to leukemia on 2002 due to complications to transplant, he was 10. They do a lot of fund raising for transplant and Dr. MCcarty, the transplant DR will be there to make a speech. Everybody has been sooo wonderful to us. I just can't express in words how much this means to us. I will keep everybody updated on how things go on Tuesday. On another note, Sophie's bili FINALLY came down to 14 and she is OFF of the bili blanket. I'm sooo relieved that i can actually hold her without having to worry about the two foot cord getting tangled or pulled out of the machine. She can finally be carried around the house and loved on like she deserves. All the prayer is paying off...please keep it up. Thank you again. Take care. Have a wonderful day!

Much love,
Kim

Wednesday, April 20, 2005 7:41pm EST

Well, today was a better day. When we got to the hospital at 8am this morning Skyler had been NPO since midnight. The plan was to have the central line removed and have the pick line placed. However, that was changed as Peds surgery refused to remove the central line. I guess we caught the infection just in time so hopefully we can salvage the line. Peds surgery refused to remove it because they claimed it was "unimpressive" and since they had such a hard time placing it they didn't want to take it out unless absolutly necessary. Since no fevers that was a good sign. But, we just found out today that they did have a hard time placing it. That would explain the extreme swelling in his neck and bruising around the area. So hopefully please pray that we can keep this line. It'll be SOOOO much easier for Skyler in the long run. He's doing MUCH better today. They have gotten his potassium back up to a pretty good level. His heart rhythm is back normal. Thank goodness. We were all sooo worried about him last night. I stayed the day with him today and my mother-in-law is staying the night tonight. I have to take Sophie to the dr tomorrow and HOPEFULLY her bilireuben has come down and can come off of the bili blanket. She looks MUCH better as far as her color. Her appetite is very good and she switched over to formula quite easily....however that wasn't my choice, dr recommended. As she is coombs positive and the breastmilk wasn't helping out the jaundice at all. She's such a good baby even my mother-in-law has commented on how much of an angel she is. I just wish i had more time to spend with her. We are hoping Skyler will just go straight to transplant. We only have about 11-12 days so there is a time crunch. Anyways please pray that he'll get through this and keep the line. Also, please pray that Sophie can come off of her bili blanket. Thank you! Take care. Have a wonderful evening.

Much love,
Kim

Wednesday, April 20, 2005 7:30am EST

Well, Today was supposed to be the big day for Skyler. Transplant day. However, it doesn't seem that is going to happen. Skyler was admitted yesterday with a possible infection to his new central line. The line was just placed this past Thursday. They will be taking this line out and placing a pick line. Poor little guy. Atleast he wasn't running any fevers. Also, they have him in the PCU which is a step down from the intensive care unit. They are closly monitoring his heart because his heart rhythm isn't normal. His potassium was very low yesterday it was 2 and 3.5 is low so he was way under. My mother-in-law stayed with him last night and i'm heading up there now. Sophie is still on her Bili blanket, it was a week yesterday that she's been on it. It's a HUGE pain and we all wish she could come off of it. She goes back to the dr tomorrow to have her bili checked again. Please pray its back down to normal and that Skyler's heart rhythm will be normal again today. I will try to update this as best as I can. I will probaly end up staying at the hospital tonight as Skyler was VERY upset that his mommy wasn't there with him last night. Anybody know how to clone? :) Take care. Please pray this little guy gets better so we can get transplant out of the way. Take care. Thank you!

Love,
Kim

Please don't forget to sign the guestbook. Thanks!

Thursday, April 14, 2005 6:24pm EST

Hey Everybody! Sorry for the delay in updating. Well, let's see last Thursday I met with transplant and radiation. Skyler will receive 2.5 weeks of radiation about a month after he's released from the hospital from transplant. Friday he had his last scan and everything went well. Good news for the scans they didn't show us anything yucky. As far as raditation that was also a very nice suprise. They will be radiating his lower abdomin and only half of his kidney. So we are hoping he won't receive any long term effecs from that. Sophie was born Friday night the 8th at 10:32pm. She arrived weighing 7 pounds and 4.5 ounces. I guessedlbs and 4 ounces. So I wasn't too far off. She was 20 inches long. Has a full head of very dark almost black hair. She's a very good girl. We came home from the hospital on Sunday she weighed 7.2. Her bilireuben is really high and was tested positive for coombs. Which is where I have a negative blood type and she has a positive. So she had a reaction and is pretty jaundice. She's much better now. Sunday morning her bili was 7.6 that afternoon they re-tested at 3pm and it was 10.1. Monday it was 15.3 and Tuesday it was 17. It's supposed to be 0. When I took her to the pediatrition on
monday she weighed 6.9, tuesday she weighed 6.11 and again tomorrow. She is on a bili blanket 24/7 so can't wait for her to be done with that. It's hard holding her with this huge cord keeping us pretty inmobile. Skyler is getting better with her. Matt tried to get Skyler to hold her. He did for about 2-3 seconds and said she was too heavy...Matt was mainly holding her anyways. He then said he had to go wash his hands because they were dirty from holding her. LOL. He'll blow her kisses but doesn't want to touch her or kiss her yet. He'll even whisper to her. He had to have his central line replaced today due to the crappy repair job that was done. Anyways, he whispered to her this morning and I asked him what he said. He told me he was telling her he would see her later...like we were leaving her behind. I told him she was coming with us. He said "Oh, okay" :) Tuesday night Skyler rubbed her head and said "Mommy, I want hair" Poor guy. I just hugged and kissed him and told him he will have hair soon. :) I have pictures of Sophie but not with the two of them yet. My camera is also being a pain and I can't upload any new pictures to my computer. I'll figure out a way to get them on here. Sophie is sleeping very good at night. She slept from 12:30am to 5:30am yesterday morning and from 12:30 to 6am this morning. However, I kept waking myself up to check on her. I guess it just seems too good to be true that she's sleeping soo good already. She's a really great baby and is sooo sweet. I took her to clinic today and everybody just ate her up. She got passed all around. :) I just can't believe she's already here. With everything going on with Skyler it truly kept me pre-occupied. Well, I'm going to run. Thank you everybody for checking on Skyler. It truly means a lot to us. Please don't forget to sign the guestbook let us know who you are. Please continue to pray for Skyler. Also please pray for a little boy named Chase. I'm not sure how old he is but he's over a year and not yet two. Anyways, he also has Neuroblastoma. Please pray for him to get better and to let God rid his body of cancer. Take care. Have a wonderful evening!

Much love,
Kim

Wednesday, April 6, 2005 10:44am EST

Here I am again. Skyler is doing well. This week is full of scans. Please pray they will give up great news. He had his bone scan on Monday. He's getting his MIBG today tomorrow and Friday. I meet with Transplant and Radiation on Thursday. My dad took Skyler to his scan today. I have a million last minute things to do before Friday. Friday I'm due at the hospital at 8am. I'm exhausted and ready for this day to come and go. I spoke with a rep from Via Cord. They will store Sophie's cord blood free of charge for us. Which is a huge relief because I was told none of the cord blood banks would do this. I'm waiting on the supplies to arrive today so I can pack it in my suitcase. Yesterday was Matt's birthday. Skyler and I made him a cake and cupcakes. Skyler wanted them to be Spiderman cupcakes. :)Skyler has been eating good and chattering away. He's really been full of himself the last couple days. He's such a sweetboy. I can't wait for Saturday when Skyler comes to meet Sophie for the first time. We will be taking TONS of pictures. So I will update his picture page asap. My mother-in-law arrives on the 17th at 10pm. We are all very excited about her visit. It'll def. be nice to see her and have the extra help. I will update again tomorrow night. I'll have more information on Skyler's stem cell transplant and hopefully his radiation schedule. Take care. Have a wonderful day!

Love,
Kim

Please don't forget to sign Skyler's guestbook let him know you care. :)

Sunday, April 3, 2005 12:22pm EST

Well, first off I need to apologize for my laziness in updating. Skyler had his CT scan on Wed. Thank goodness Matt took off from work to come with us. It was very stressful as Skyler couldn't eat or drink for most of the day. His scan was scheduled at 1:15pm. Go figure ansethia didn't show up intil 2pm. Skyler had another appointment at 3pm that we just found out about late Tuesday afternoon. Anyways he didn't make the 3pm appointment. So that is re-scheduled for Thursday at 2pm. It's a consult visit with radiation, which is good because I have no idea what his protocol calls for. Thursday Skyler came with me to my last DR's visit. Everything is a go for Sophie to arrive on Friday the 8th. I also gained 3lbs from the week before. :) Skyler always gets a big kick out of coming to these visits with me. After we listen to Sophie's heartbeat we always have to listen to his "big boy." He always pretends that his "big boy" kicks and hurts him just like Sophie does me. :) What a cutie. :) Anyways, Friday Skyler had his bone marrow biopsy. Again, this was a pretty stressful day. Skyler couldn't eat after midnight or drink after 7am. There was 2 other children getting a biopsy done. So there was a hold up on ansethia. They didn't get there intil 12:30pm. Thank goodness they did Skyler first. I received a phone call from one of the nurses in clinic that night. Dr. Massey looked at one of the smears of his bone marrow. She said it "Looks good." So that is great news. Skyler has been full of himself the last few days. He has a week full of scans this coming week. Sophie will be here Friday, hopefully unless she's like her brother. :) Skyler won't have to go back to clinic intil the 20th when he's being admitted. YEAH!!!! So hopefully we'll hear the results from his CT scan on Monday. Please pray that everything comes back negative. He's feeling good today and chattering up a storm. Well, I'll try and do a better job of updating this week. Take care. Have a wonderful day!

Much love,
Kim

Please don't forget to sign the guestbook. Let Skyler know you love him and are checking in on him.

Wednesday, March 30, 2005 9:16am EST

Hey! Skyler went to clinic on Monday and didn't need any transfusions...YEAH!!! His white blood count was 7.7, his hemoglobin was 9.7 and his platelets were 54. He did need to get his white line repaired because there was a crack in it. I hope we caught it before an infection or any yuckies got in there. I noticed last night that his red one needs to be replaced too. So he's going to clinic today to have that done. He has a CT scan at 1:15pm so let's pray it'll give us good news. He also has an appointment at 3pm with Dr. Chung to discuss his Radiation therapy. Matt took off from work today to help out. Skyler can't eat or drink 8 hours before his CT scan since they will be sedating him. So this is ALWAYS the hard part for us. Skyler LOVES to eat and drink so it's REALLY hard to tell him he can't. I usually get VERY stressed out on days like this. Expecially when the scan is soooooo late in the day. Please pray that we'll get lots of good news today. Well, I'll update again soon. Take care. Have a wonderful day!

Love ya,
Kim

Saturday, March 26, 2005 9:58am EST

Skyler is doing well today. He had his Echo done yesterday and everything seemed to be fine. He then had to go back to clinic for a blood and platelet transfusion. We also had to evacuate the building due to a fire. Thank goodness Skyler only had about 15 minutes left in his blood transfusion. It takes about 3 hours for him to get blood. He then got the platlets once we returned inside. Thank goodness they are always quick....30 minutes or less. So we were home by 5:30pm or 6pm yesterday. Skyler slept all day yesterday as they sedated him for the Echo and then gave him benedryl & tylenol before platelets. So last night he was awake most of the night and wanted to talk and play with mommy. :) Poor guy. He's still wide awake now and hopefully he'll get back on his schedule. He's a little chatterbox today and in a good mood. So i'm very thankful for that. I will keep everybody updated. He has to go back to clinic on Monday. His counts yesterday were hemoglobin was 6.6...which he should have been transfused on Wed. but wasn't. His platelets were 17 and his white blood count was 1.3. Take care. HAVE A HAPPY EASTER!!! Skyler saw the Easter bunny on Wed. and he was there again yesterday but Skyler slept the whole time...lol. He got his picture taken with him and is soo proud of that now. Of course he wouldn't sit on his lap but beside him. :) Take care.

Love ya,
Kim

Please don't forget to sign the guestbook. It means soo much to us for those who do. Thank you!

Wednesday, March 23, 2005 1:42pm EST

Hey! Sorry for the delay. I haven't had a chance to get online latley. Been soo busy. Well, Skyler came home Monday afternoon. He almost didn't as they had a new peds oncologist start that day and she didn't want to send him home. But, since his other oncologist has already told us on Sunday he would be going home on Monday she let him go. Yesterday we had a beautiful day and we spent most of the time outside. Today Skyler had clinic. His counts are still low and in my opinion he should have been transufsed but wasn't. His hemoglobin was 7.8 and they usually transfuse at 8. So, hmmmm. His platelets are 46 and white blood count is .3. He was full of himself this morning but now he's laying in the bed watching cartoons. He still has a very good appetite so that is always good news. The Easter bunny came to clinic today. Skyler wasn't too sure about him so Skyler and I had to sit beside him to take a picture with him. Skyler liked the idea that he gave him candy but wasn't sure about him at all. :) We saw one of the other neuroblastoma families. Owen turned 3 in Sept. Skyler and him had a ball playing today. They were too cute. Of course I didn't have my camera. Anyways Owen went into transplant April 20th and had his transplant the 27th. Of course this happened a year ago. So the dates must mean something as Skyler is being admitted the 20th and hopefully will get his transplant on the 27th as well. Owen is doing great, so that makes me feel much better about transplant. Owen's mom Karin said that Owen was only in the hospital for 3 weeks. So we are hoping Skyler can do just as well. We are just doing scans and other tests for the next couple of weeks. I go tomorrow to the OB and have my weekly checkup. We have a busy rest of the week. Skyler has to be in clinic again on Friday and have an Echo done too. So, please keep him in your prayers. Also, don't forget to sign the guestbook. Take care. Thank you!

Have a wonderful day!
Much love,
Kim

Friday, March 18, 2005 9:01 EST

Welp, Skyler didn't make it to clinic today. I had to take him to the ER last night with a fever of 102.8. He's doing much better today. The fever has gone away on it's own. He's on anitbotics and lots of fluids. He's still having diarrhea and think we fould the reason for this. We have well water that possibly carries little parasites that are messing up his digestive tract. It would explain the fever, loss of appetite, diarrhea etc. We are hoping we'll know the results tomorrow and maybe he can come home. He's been having a problem with diarrhea for atleast two months now and no meds. we tried helped him. Please pray this is the answer. I spoke with transplant yesterday, not sure if i posted this yet or not. Sklyer will be admitted April 20th for his stem cell transplant. Skyler has lost several pounds due to the diarrhea, anybody have any suggestions on how to quickly put some weight back on him? Well, i will update again as soon as i know some more news. Poor guy didn't want mommy to leave him tonight. He told his daddy to "Go home" and kicked him. Not like him, it's usually the other way around. :) Well, everybody PLEASE sign the guestbook. I would like to know who's supporting us. Thank you! Take care. Have a wonderful evening.

Love ya,
Kim

Thursday, March 17, 2005 2:44pm EST

Well, let's see. Skyler went to clinic yesterday he had to receive blood and platelets. His hemoglobin was 8.2, white blood cells <.1 and his platelets were 30. He's doing okay today, tired and seems to be starting with a cold. He still has the diarrhea, which i'm hoping they will get a sample of it tomorrow in clinic. That way they can culture it and hopefully we can start him on some sort of medicine to clear it up. It's just a shame they have to wait 72 hours for the cultures to come back before they will prescribe him anything. Poor little guy. He's not eating very well today and is pretty slow. Please pray it's just a stomach virus that will be gone tomorrow. I went to my OB today and i've lost two pounds since my last visit two weeks ago. At my last visit i had gained 7lbs in two weeks. Yikes. Anyways, Sophie is still growing and doing well so no problems. My OB also said that i will not be delivering this baby earlier than the 8th, so that is another sigh of relief. I spoke with the transplant team today. Skyler will be admitted on the 20th of April. Thank goodness. I was really worried he would be admitted the week of the 11th. So that is another thing i can stop worrying about. He'll be able to spend a few days with his little sister before transplant. He will be getting 4 days of straight chemo. Skyler goes back to clinic tomorrow. I will update tomorrow with the news from that. Hopefully on news is good news. Just pray this diarrhea goes away on it's own. Please keep a man named Dennis in your prayers. I met him on Monday when Skyler went for his chect x-ray. He's in his 50's and has AML, a type of leukemia. He just had the stem cell transplant 3-4 weeks ago and started with a fever sunday night. I pray for him everyday and hope you all can too. I pray his fever goes away and he has a full recovery. That's it for now. :) Take care. Have a wonderful day!!

Love ya,
Kim

Tuesday, March 15, 2005 3:46pm EST

Well, Clinic went well yesterday. No transfusions but he'll have a blood transfusion on Wed. Nurse Kathy pre-ordered the blood so that should already be waiting for him. :) His Hemoglobin was 8.7, platlets were 70 and white blood cells were .8. He also had a chest x-ray and another test done yesterday. He was a very brave boy for both of them. He had fallen asleep waiting for the x-ray technicans, so he woke up in a scary room with this strange machine. He was really scared at first and i couldn't stay in there with him. But, he did great and it was over. We had to go eat at Mcdonald's afterwards as a reward. :) He had tons of bloodwork done yesterday as well. Just getting ready for transplant. I will list all of his appointments at the bottom of this journal. Today, he's really slow and has been in bed all day. Not asleep but mostly quite just watching cartoons. He's started with diarrhea again and i'm sure that is making him feel yucky. It's slowed down now and he seems to be perking up. So we'll see tonight. :) He may be mister chatterbox again. I will update again tomorrow after clinic. Take care. Have a wonderful day!


Love,
Kim

-3/23 bone marrow biopsy
-3/25 Echo 10:15am NPO 6 hours before.
-3/30 CT Scan 12:40pm, can't eat after midnight stop clear
fluids after 7am. I hate these days! Matt is taking off
from work to take him. Skyler LOVES to eat and drink.
-4/4 Audiogram 9:00am
-4/4 Bone Scan arrive at 10:00am injection Scan at 1:00pm
-4/5 MIBG injection 11:00am
-4/6 MIBG scan 8:00am
-4/7 MIBG scan 8:00am
-4/8 MIBG scan 8:00am

Please keep him in your prayers on these days. Also, pray they all come in his favor.

Saturday, March 12, 2005 3:05pm EST

Sorry in the delay on updating. Been quite tired lately. Skyler came home from the hospital at 2am Fri. morning. I'm soo glad we only like about 20 minutes away otherwise we wouldn't have been able to leave intil atleast 8am Friday morning. Skyler is doing great. He's such a little chatterbox usually at night as soon as he stops chattering away he's sound asleep. :) The hardest part is to get him quite. He's eating like a horse and seems to be always hungery. So far so good for this chemo cycle, even though it is still very early. Skyler has to be in clinic Monday morning at 9am for counts. Hopefully no transfusions. Skyler has about 2 weeks works of scans and another bone marrow biopsy before transplant. So plans have changed. Skyler's last scan is April 8th at 8 or 9 am. My father has agreed to take him to this scan so i can be enduced this day. It's a friday and i'm hoping it'll work out better. We'll find out on Monday but we are hoping Skyler won't go into transplant intil the week of the 18th or later. This is really how i was hoping it would work out from the beginning. I wanted Skyler to be home when Sophie comes home. That way we can have a few days with the two of them before the madness begins. :) I'm feeling much better about everything now. Although still nervous as i have no idea what to expect or if things will change again. Skyler goes in for his bone biopsy on 3/23 so please keep him in your prayers on this day that the results will still be negative. Well, got to go now somebody is hungery again. :) Take care.

Love ya,
Kim

Tuesday, March 8, 2005 1:03pm EST

Hey everybody! Sorry for the delay in updating. I told you i'm not the best at doing this. :) Skyler has been doing so well it's just amazing. He was admitted yesterday for his final cycle of chemo before transplant. They didn't start the chemo intil midnight last night. MCV isn't the best at doing things on time. :) But, hey atleast they get it done. Anyways, he woke me up at 6:30am wanting a hot dog. I don't even think his eyes were open. So i explained to him that i couldn't get a hot dog now but would later. So, he was satisfied with that and ate some chips, graham crackers, a piece of cake, and half of a honey bun. Then his breakfast came at 9am and he ate just about all of it. Which was sausage PIZZA for breakfast and cereal. What 3 year old wouldn't eat their breakfast on a day where they get pizza. :) He doesn't even seem to be bothered by the chemo meds. So hopefully this cycle will be a smooth sailor. Just hope everything works out in transplant. The closer it gets the more of a nervous reck i get. My Dr. still haven't given me an exact date. So, all i know is they are planning on enducing me the week of the 11th. Guess i'll find out on the 17th. Skyler should go into transplant the last couple days in March or the first couple days in April. He will be receiving 4-6 intensive doses of chemo, 3 days after the chemo he'll receive the stem cell transplant. So i'm hoping his counts will be coming back and he'll be doing better by the week of the 11th. Otherwise, i'm just going to let Sophie come when she is good and ready. :) I'm not too familiar with what happens in transplant. I need to speak with the transplant doctor. OR other families that have already gone through it.....hint hint. :) Skyler is expected to come home on Friday. Wed. night they are going to cathadar him for 12 hours to get a urine sample. Please pray for this little guy on this day. I know this will be painful for him. I will try and update again tomorrow or the next day. Take care. Have a wonderful day!

Love ya,
Kim

Hey! Check out our Neuroblastoma Warrior and other brave children. Click the link under links. :)

Wednesday, March 2, 2005 8:25pm EST

Hey! I just wanted to give everybody a quick update. Today i had my Dr's appointment. Skyler came with me. :) He got three suckers. He was a very good boy. My Dr was pleased with me as i have gained 7 pounds in 2 weeks. :) We are looking at the week of the 11th to bring Sophie into the world. I will know an exact date hopefully tomorrow. Things are going well here. Skyler hasn't complained of much pain today and has been soooo cute. I will update more maybe tomorrow. Take care. Have a wonderful evening!

Love ya,
Kim

Tuesday, March 1, 2005 1:02pm EST

Hey Everybody! Well, Today is a wonderful day! Skyler came home from the hospital. Yesterday he was up walking around and riding a little green tractor around the hospital. He's truly amazing everybody. Today the surgeon Dr. Bagwell came in and spoke with us before we left. He's an amazing surgeon and we are VERY thankful for him. I asked him if he was amazed at how well Skyler has done and he said fabergasted (i'm not the best spelling so please forgive me) is the word he would use. Which was sooo wonderful to hear. Skyler had to give him a kiss on the cheek before he left. :) Skyler made a new buddy yesterday named Caden. He has non-hodgekin's lymphoma, which is another disease they thought Skyler had before he was diagnosed with neuroblastoma. He's just a little over 3 years old and just adorable. The two were sitting in Caden's bed last night playing with play doh and having a wonderful time. Matt (dad) stayed the night last night so i don't know what happened after i left, i'm sure there was tons of giggles. :)Today, Skyler had to get in Caden's bed to play cards and connect four. They were a perfect match. They loved the same things and talked the same lingo. It was really adorable. Caden told Skyler "I Love you!" and Skyler said back to him "I love you too." Just too cute. We are hoping he'll still be there when Skyler is admitted again on Monday. This is his final chemo treatment before transplant. YEAH!! This is the 72 hour one so i'm sure it'll be the weekend of the 7/8th before he comes home again. Tomorrow i go to my Dr and see when we'll finally meet Sophie. I'm very nervous about this. Skyler will go to transplant 21 days after this next chemo. Where he'll be in the hospital for a month.....give or take several days. Sophie is due Mid-April so this is going to be hard. I know transplant and labor are close and getting closer all of this gets me more nervous. Just hope the timing works out for everything. Well, enough rambling for today. I will update tomorrow after my Dr's appointment. Wish me luck!

Love ya,
Kim

Sunday, February 27, 2005 5:57 PM CST

Hey! Sorry for the delay. I'm not the best at updating this site. Skyler had his surgery on Thursday. Things went very well. They were able to remove the whole tumor plus, most of the outside and connecting veins were dead. Which was great news! He was able to keep his kidney and it seems to be working just fine. They didn't remove the lymph nodes as the surgeon thought it would be too risky. Everybody was very pleased with how things went. The surgeons and oncologists are just amazed at how well he's tolorated everything. Skyler has been off of his pain medicine since yesterday afternoon. He's sitting up in bed today playing video games. He's already ordering demands so we know he's feeling better. :) He was given the okay to eat which was like giving him a brand new toy. He was just tickled. He wanted a soft taco...so that is what he got. :) We are hoping if he keeps up this wonderful progress he'll be able to come home within the next couple of days. I'm hoping to be able to get him in a wagon tomorrow and go "walking." We wanted to thank everybody who prayed for Skyler on Thursday and everyday. It truly means a lot to us. We all appriciate all the love and support. It truly makes this easier to fight. I promise i will be better about updating this site. :) Take care. Thank you soo much! We love you!

Take care,
Kim

Please check out the link Neuroblastoma Warriors i have listed on Skyler's site under links. Skyler is now listed under the warriors.

Monday, February 21, 2005 11:16 AM CST

This is my first entry so please bear with me. Today Skyler is doing well. He's always been a good eater and has LOTS of energy. He has surgery on Thursday. Please pray that his left kidney hasn't been damaged. I will post more after surgery.

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