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Saturday, October 28, 2006 3:17 AM CDT
Omgosh been forever since I've updated. Just a quickie then. Levi is 2 years 6 months old and still cancer free! His next MRI is in Nov. He had a surgery last April for a fake skull but it dissolved within a couple of months so then we scheduled a metal plate to be put in. However, I canceled that surgery has it didn't feel right.
He's really finally picking up words. He's in occupational and speech therapy. He's at about 20 months activity overall.
That's about it for now. :)
Tuesday, April 19, 2005 3:15 PM CDT
Been a long time since an update. Lots of things going on here. Some bad, some good, some great!
First the bad. A couple of weeks ago my grandfather was hospitalized for a few days then sent home and passed away a few nights later. I spent as much time as I could with him so that's where I've been recently. We had his funeral Friday, the day before Levi's birthday.
Saturday Levi turned ONE!! I was so emotional all day. Kept dancing around with him. I'm sure both my kids thought I was nuts. :)
Sunday we had his party. Had tons of fun seeing family members we haven't seen in awhile. Levi got lots of new summer clothes which he desperately needed. We missed Aunt Steffie and Kirk and our friend Mary. :(
Levi had his sleep study Sunday night. I called it quits about 3 a.m. He has something wrong w/ his nose, hates it to be touched and rubs it constantly. Well they had 3 different things up his nose so it just didn't work out. However, he did sleep for a couple of hours with it so hope that was enough.
Got some really great news today! Our insurance didn't cover very much of our Chicago medical bills. It was (WAS!!) out of network w/ a $10,000 out of pocket. Well, unbeknownst to us a few months ago they became IN NETWORK! What a relief. I'm so happy about that. That's a huge burden lifted financially. DH has been working alot of overtime (some of it forced) so we've been paying down bills as much as possible.
I want to take a moment to let you all know about a precious baby boy. His name is Samuel and he has a fatal disease. My parenting community has been working hard to send them money so his parents who both work can stay home w/ him these last few precious weeks. His website is Baby Samuel. Please take a moment and visit. Do some shopping or bidding on auctions or maybe send a straight cash donation. I'm taking orders for custom crocheted halters, ponchos, hats, etc and all profit goes to his family.
I think that's all. Levi doesn't go back to Chicago til June where he'll have an MRI and chest xray. He's still not gained any weight but he's chubby and healthy so I guess I'll just try not to think about that.
Livie's a 50/50 sister. 50% of the time she is so loving and sweet w/ Levi the other 50% she's sooo mean. I'm trying to spend alone time w/ her but it's not easy.
I'm working on getting some pics up. You all just HAFTA see Levi's helmet. LOL It's so cute!
Sunday, April 10, 2005 12:58 AM CDT
Been a long time since I've updated everyone. It's amazing how things change from month to month. I mean last year all I did was write in the journal. I was constantly fretting over finances (that's always like my thing to worry about), worried about this or that, writing rather frequently. You can tell things are better because I'm barely remembering to write even good updates now.
Right now we're dealing w/ possible failure to thrive, sleep apnea and the fact that his skull never grew back so now he has to where a helmet. It's amazing that he is ok w/ it! He HATES hats but doesn't seem to mind the helmet. The hole in his head is probably couple of inches long by couple of inches wide. Pretty good sized.
He's off of all meds except for phenobarbitol for seizures.
We're pumping him full of baby food to try to get him to gain weight. I think it's working. He looks chunkier.
Oh what else? I'm too tired to think. Oh yeah his sleep study is April 17th. I don't understand, though, how they can study someone's sleep pattern if they remove everything out of the equation. Like mommy and her breast. They said I could lay down w/ him to get him to sleep but then I have to get up. Um he nurses in his sleep ALL night long most nights. Oh well hopefully they can figure out why he wakes up crying about every hour.
We're planning a small birthday party here at home for his bday on the 16th. Can't believe that's coming up.
Ok Livie is being a total cranky monster child so I have to cut this short.
Hope you all are doing well and enjoying life!
Saturday, March 12, 2005 7:20 PM CST
We are HOME!! I know most of you already know most of this since it did get posted on the yahoo group (Thank you Cindy!) and in the guestbook (Thank you Skinny!) but I'll put it on here.
The MRI was clear! In fact he (Dr. T the neurologist) said that this MRI looked better than the last one which confused me. I mean if they don't see any cancer then what could look better?? Well then we got off on a tangent but I think he was refering to the bloodclot that is STILL there almost a year later.
Backing up a bit, the first night at the RMD house was AWFUL! Tuesday night. Levi bawled, screamed and coughed literally for 4 hours straight. Like midnightish on. He could barely breathe he was coughing so much. Wednesday night we all slept pretty well. Thursday we decided to go shopping for Mom's fun. Kind of a "I'm sorry you had to be dragged to Chicago on your bday". So we drive to the Watertower. It's 7 floors of shopping. I wasn't really impressed. They were all mostly high end, expensive stores and I'm a secondhand, mamamade type of shopper. So after getting shooed away from two parking garages for my van being too tall I decided to drop them off at the Ritz-Carlton and I'd drive around and find somewhere to park. An hour plus later I ended up back at the hospital and calling a cab. @@ So then we get a couple of hours shopping done and I realize Levi is feeling rather warm, actually quite hot. So we get back down to the ground, I get a taxi, go back to the hospital, get my van, go back to the watertower, get my mom and Levi, go back to the hospital (I'm not going shopping anymore if I have to drive!), take him up to the MRI nurses who we're quite friendly with and they took his temp. 100.3, decide to go home and see what happens. During the night at the RMD house his temp hits 101/102, with ibuprofen it dropped briefly to 99.6. He normally runs 97ish. So I was up most of the night with him Thursday night. Friday morning he wakes me up at 9:30 by puking all over me, the bed and himself. He was running 103 temp. Got the mess cleaned up, took him to the ER and after several hours there they dose him up w/ antibiotic through his port and sent us back to the RMD house. He threw up all his phenobarb before bed so no seizure meds at all on Friday so that had me worried. He finally felt better enough to go to sleep about 3 am but woke up crying a few times. Mom let me sleep til noon then decided it was time to head home.
I think I've covered everything. I have tons of work to catch up on. I'll have some crocheted ponchos and haltertops listed at Meltingpotshops.com on the 18th I think it is. I have to get everything ready for it now so I'll ttyl!
Thank you thank you for all the prayers and well wishes. It was so scary seeing Levi so ill. I've not seen him "act" so ill in forever and it was a little nervewracking.
God Bless all of you!
Monday, March 7, 2005 11:53 PM CST
Hi everyone! I know it's been awhile. Things have been crazy. We did have to put Boston down. That was extremely hard especially after what we went through last year. The events were too similar to not have them meld in mind as one.
Levi is improving w/ his motor skills. He can put himself up into a sitting position. Livie still gets excited everytime she sees him do it. It's too funny!
Speaking of Livie, she use to have beautiful long blone hair about halfway down her back...hehe now she has beautiful SHORT hair! She would never let me comb out the tangles and boy they would get horrendous! Awful spiderwebs as we call them. She's so cute w/ short hair!
Some exciting news! My best friend, Cindy and I have bought ButterflyKissesDiapers.com! Very very exciting! Hope to open before May but we have to drive down to KY and pick up all the products and materials then learn the pattern and perfect our skills at making them.
Please pray all day and night for the next couple of days. We leave tomorrow (Tuesday) for Chicago for another MRI. This one is too basically make sure that without chemo the cancer didn't come roaring back.
Also tomorrow is my mom's birthday! Wish her all a Happy Birthday! She's going up to Chicago w/ Levi and I. I told her she can tell all her friends her dd is taking her to Chicago for her bday. :) We do plan on visiting the watertower. My mom is a major shopaholic. :)
Anyway see ya'll later!
Thursday, February 24, 2005 2:03 PM CST
Picture of Boston on the picture page.
Wed pm
Some may recall that Boston (my dalmatian) has diabetes. He'll be 8 this May. He's rapidly lost alot of wt, is vomiting and not eating. Took him over to my vet friend who took his blood and gave him fluid and just by visual he says the blood doesn't look good at all. Says it's kidney failure or cancer, etc etc. Due to his health history and being a dalmatian we are assuming kidney problems. He'll take the blood to work w/ him in the morning and run the tests. He says most treatments aren't good for diabetes. Sigh. That was this evening. This morning the vet and his wife, who's my best friend had to take their 10 y/o daughter to the hospital for an MRI because she's showing symptoms of pituatary gland tumor. Double sigh. They won't know her results for a couple of days. So anyway please pray for Boston and Becca.
Thurs pm
Becca's MRI was clear. PHEW! Still have to figure out what's up with her vision. I can't describe the relief that came over me when her mom told me that.
Boston on the other hand. Not doing so well. His kidneys are in major trouble. Bloodwork is a mess. Doesn't seem to be many options. He seems to be in so much pain. He is so skinny and moves so slowly. He's like a skeleton. Going to give him more IV fluids and if that doesn't change anything or he gets worse then we'll have to put him to sleep. I can't describe the grief and guilt I feel. He was my sidekick, my buddy, my shadow for so long then I had my daughter. He still was my baby but of course she came first. Then this past year.. well I don't have to tell ya'll what it's been like. You've been here w/ me you know. I was just telling my dalmatian friends the other day how I can't wait for the kids to be older where I don't have to carry them or always hold their hands so Boston can go places w/ me again. He use to go EVERYWHERE with me. I just want to curl up on the couch and cuddle w/ him like we use to but being a mommy of 2 2leggers makes that impossible. He slept inside last night on his "indoor" couch. Livie covered him all up, gave him a pillow and stuffed animals. She even tried to share her banana with him. Then she just laid there watching tv w/ her arm around his neck. We finally coaxed him outside this afternoon. Dh did anyway. He peed. He peed. He peed again. Drank some water, refused food, refused to come back in the house. Just stood in front of his backporch couch with his head resting on it. So I put his front half up on it and he climbed the rest of the way up. You would think after fighting for my son's life that losing "just a dog" would be a piece of cake. But it's not. Boston has been my first baby for so long. He was a pound "puppy". From the moment we first met we've been in love. why why why do dalmatians have to have bad kidneys??
Wednesday, February 23, 2005 10:06 AM CST
I know, I know. Haven't been around in forever. Been rather busy with doctor's appts, dh working 80 hr weeks (so no break for me or time w/ dh) and I tried to go off my "happy/anti-bitchy" pills. The side effects were awful! I even took a pregnancy test that's how bad they were! For several days in a row I was dizzy, queasy and the exhaustion! I've never felt anything like it. Jason was home this past weekend and I slept very well Saturday night, took two 2-3 hr naps Sunday and was still exhausted. Decided I couldn't function that way so started my pills again and I'm almost normal.
Levi's just amazing. He scoots all over this house now. He can almost put himself into a sitting position and he recently started to deliberately go from sitting to scooting on his belly. Thanks to a couple of little girls he's had not only his first french fry but first cookie. Last night I had been feeding him his baby cereal mixed w/ his pheno. Left the room, came back in and he had it smeared all over his face. Asked Livie what happened and she said "I feed him!" She's so funny. They are really interacting together and it's so cute to watch. Last night he was fussing sitting on the floor. Told Livie to bring him to me and she grabbed him from behind around the neck and tried to lift! OOPS, well at least he wasn't crying anymore, too busy trying to breathe! Last night we all curled up to go to sleep and she told him "I love bebi".
She's been really growing up lately. Much faster than mommy likes but not fast enough some days. She spends alot of time w/ a friend's ten year old and you can really tell by her attitude. You know that "uuuuuhhhh" older make when you make them do something they don't wanna? Well everytime I tell Livie to do something she'll go "uuuuuhhh" w/ a deep sigh. You can almost hear those eyeballs rolling. She's also been afraid of the dark lately so we have nightlights in every room.
I think that's about it. Levi has an MRI on the 9th. I'll be leaving Livie w/ my friend since my mom is going up w/ me.
I have a poncho for sale: This is a one of a kind (OOAK) work at home mom made (wahm) by me :) crocheted boutique poncho. It is really gorgeous. Has hand crocheted colorful shamrocks decorating it. Included (but not pictured) matching green Old Navy "doo rag".
neckline to hem: 13 inches, over the head max about 20 inches.All items should be washed on cold w/ like colors. http://www.thatfatbaby.com/fpdb/images/shamrockponcho.jpg
Sizing is app and the great thing about ponchos is they are pretty much one size fits most so if it goes over your head and you aren't picky about length, especially since ponchettes are popular too then they can be worn for years.
$20 ppd funded paypal only. Thanks!
Email me at thatfatbaby@aol.com if you're interested!
Wednesday, February 2, 2005 10:28 AM CST
Sorry I haven't been around. Been swamped. Friday gone all day to doctor stuff, Saturday gone all day w/ my friend then dinner at MIL's and grocery shopping. Sunday I just sat. Didn't move lol. Monday and Tuesday doctor stuff again and today Levi's bloodwork and PT later.
I thought I had told ya'll about Livie's exciting time in Chicago and escaping our room and us getting written up. I promise I will tell ya'll about it soon enough.
Levi's still got an ear infection. Sigh. Poor thing. He's been coughing from the tips of his toes all day and night. Hence yesterday's doctor's appt. They were laughing at him in the waiting room and in the nurses area. They thought he was play growling. Nope that's him coughing. He's still in the 17 lb range. We're going to get set up w/ an ENT for a sleep study because we think he has swollen adenoids. The ped. said his soft palate is low. He has all the signs of swollen adenoids including sleep apnea (gasping for air and waking up crying), gagging while nursing, snorty nose while awake, major snoring at night and sleep apnea can cause FTT (failure to thrive) which he's not gaining weight but babies do stop gaining wt for awhile however I just sense this isn't that.
Ever since we took him completely off the chemo w/ the doctor's approval I have felt so much better overall. It's like a weight has been lifted.
I'm still fighting sore throat and earache. This has been the worse winter for my family. We've all been sick all winter. Chest colds, head colds, ear aches, pink eye, ugh! Livie's coughing bad at night too. Hard enough to puke the other night.
I have another poncho set I'll be putting up on ebay when I get a chance. The proceeds though will be going to Samual and his family. He's been hospitalized and his mom hasn't been able to keep up her sewing for their income. His website is http://www.momandmepouch.com/SamuelsUpdates.html. Here's a sneak peak at the poncho. http://thatfatbaby.com/fpdb/images/angelponcho.jpg
http://thatfatbaby.com/fpdb/images/angelponcho1.jpg
If anyone wants to buy it outright name your price! I'd like $30 for the set. It would save time and money to sell it outright instead of ebaying it. Here's the description. This poncho is called Levi's Angel Poncho. This is the poncho I worked on all through the last visit to Chicago. This is the poncho that kept my hands busy has we waited for him to get through his MRI. This is the poncho that caught my tears of joy when we received the good news of no cancer. The poncho, purse and scarf are all 100otton minus the fuzzy trim. The hem and neckline of poncho are trimmed in the fuzzy stuff, the edge of the purse and it's handle are and the tips of the scarf. Also are two angel appliques. One on the scarf and one on the purse. The colors are beautiful. There is strawberry pink and the multicolor yarn is of strawberry pink, light pink, lavendar and white. Reminds me of the color of Angel's Wings. This is app. 2-4t give or take. It fits Livie who's a 3T. Email me privately at thatfatbaby@aol .com if you have any questions. Thanks!
Monday, January 31, 2005 10:47 AM CST
My two crocheted ponchos are ending today! http://search.ebay.com/_W0QQsassZthatfatbaby
Feel free to share the link with others!
Friday, January 28, 2005 11:06 AM CST
Someone asked what's next. It's definitely not all over. He has to have MRI's every 3 months. He has to have PT for his left side weekly. He has to be monitored for seizures. Ironically the longer he goes without cancer reappearing the higher the chance of it coming back. That five year mark everyone is so excited about? Means nothing. I tend to forget on a day to day basis just HOW SERIOUS the cancer itself is because he's so "normal". The doctor gave me yet another wake up call when he held up Levi's file that was maybe 100 pieces of paper (in medical files that's really little and next to nothing) and he said "This is how much the entire world knows about Levi's cancer". It wasn't an inch thick. How scary to be born with something that has no known cure or even something to help slow it down or keep it from coming back. No one knows if this cancer is known to come back the size of a baseball at month 9 or if once successfully removed it probably won't ever come back. They just don't know. So where our day to day life is now minus giving him nasty chemo and I don't have the worry of what the chemo drugs are doing to his little body we still will always have the great fear of the cancer coming back, how we'll treat it, etc. 9/10's of NED life (No Evidence of Disease) is worry about it coming back. It's something you can't just forget. All day every day it nags at me. Everytime he acts a little funny I worry that there's something in his head and putting pressure on his brain causing him to act that way. Also since he has a port still he is still at risk for serious life threatenging infections and pneumonia. And since at this point it's accessed weekly then weekly he's at risk. Which brings me tooooo.....
Back in July when he was sedated for a CT scan the nurse forgot to wipe the tip of his central line before injecting it....came home and within a couple of days he was admitted for a serious, potentially life threatening bacterial infection. Had to pull his central line out and then had surgery later to put the port in. FFWD to this week. MRI was over, I had been holding him, feeding him, changing his diaper, passing him around, time to leave. The nurse picks up the end of the catheter that accesses his port for all the stuff they had to do for the MRI. Jabs the needle in it. I say "aren't you suppose to wipe that?" She apologizes, pulls out the needle, wipes it and sticks the needle back in. I had just spent 6 hours w/ these nurses, hanging out, talking, playing w/ Levi, etc and now one of them has just threatened his life by forgetting a bit of protocol. I hate being in this position. It's 9 pm. So I meant to call our onc the next day but between going home and getting home I forgot. So I called the oncall onc and she tried to blow it off said something about coincidence that I saw her. I said "Whether I saw it or not isn't it protocol to sterilize?" She reluctantly agreed. I said something about not wanting the nurses to get in trouble but someone needs to refresh their memories on what they're doing and how it can kill the patients. So then today I told our ONC and he said just to keep an eye out for fever. Sigh. Am I just overparanoid? Maybe he plans on saying something, reporting it or whatever. It's scary. Twice now I have caught the nurses forgetting to sterilize. Makes me wonder just how often it happens. And what about the parents that aren't paying attention or they themselves don't know any better?
Ok one more gripe. We didn't leave the hospital til 9 pm Wed. DH had to work 2 pm Thursday. So bright and early I got up and washed our linens, cleaned our room etc. By the time we were ready to leave the RMH office was open (9 to 9). So I stopped at the office to let them know we were leaving, give them the keys, etc. The young lady was the same one that wrote me up for Livie "being unattended" that one time and really ticked me off. Either she recognized me or she just always talks to everyone condenscendingly. Ya know she's the office help and we're just the lowly charity cases come to stay. Mind you she has no children. Anyway she asked if we checked out the night before. I said no we didn't leave the night before so I didn't check out the night before. We generally leave late at night and just slide our papers and keys under the office door. No one has ever said anything to us about this practice. She says "well because we discourage it." And the way she said discouraged it you would think we were discussing smoking pot in the bathroom or something bad. She kept saying about how the office is open FROM 9 AM TO 9 PM. And how "they understand blah blah" and I said well my husband has to work. "Well we understand that but the office...." I said "Yeah thanks bye" and walked out. Some people just grrr. She doesn't understand jackcrap. She doesn't understand what it's like to have to leave one of your children on a monthly basis to take your infant on a 4 plus hour drive to see if he's still healthy. To have your husband miss at least 2 days of work which means NO PAYCHECK for the week because the rest of the paycheck went to insurance and the cost of the trip. And that the workplace has to have proof why he was gone and they don't really take traveling w/ an infant into consideration. That the workplace acts like you should be able to drive 4 hours spend 12 in a hospital and drive 4 hours back home missing only one day of work. I don't like this girl she shouldn't be "mingling" with the guests. Keep her in that damn back office where she can live in her happy little world where no child has ever escaped the room while the parents were sleeping and life is so simple that we all can operate between 9 am and 9 pm and discourage anyone from doing otherwise. Ok done venting lol. Didn't mean to get all fired up again lol.
Wednesday, January 26, 2005 9:21 PM CST
THANK GOD!! NO EVIDENCE OF DISEASE!! Very long day. Started at Goldman's at 10:30 this morning. We told him that if the MRI was clear that we didn't want to do chemo for a number of reasons (to keep it short I won't go into it here). He said that he had no hard facts or evidence to tell us that it was a bad idea to take him off of chemo, etc. In fact he was much more ok with it than I thought he'd be. So after a couple of hours there we had lunch then went back to Goldman's to have Levi's head measured. Then waited around and went up to MRI to see if maybe he could get it done sooner than 3. Well gee whiz I fed him too late and we had to wait til SIX PM to sedate him. Of course I tried to argue about breastmilk but since I'm not a doctor I don't know what I'm talking about. 6 pm the next shift comes on and the MRI doctor said "well yeah breastmilk is gone no later than 3 hours. We would have had this MRI done long time ago. " Sigh. I love her. I want to keep her! So I told her everytime we come in for an MRI I'm making them call her! So they start to sedate him which usually only takes a few minutes. Not my son. OHHH NOOO!! An hour later and two full doses of two drugs and he finally just fell asleep. They honestly don't think he was sedated just tired. LOL He woke up once but went right back to sleep. Anyway he came out of there wide eyed and hungry. No fussing or anything! AND NO CANCER!!!! WOOHOO PRAISE GOD THANK YOU!! I've been crocheting all day so I'm going to stop typing. Thank you for all your prayers. We love you. We'll be home tomorrow afternoon if the weather holds. Good night!
Tuesday, January 25, 2005 5:21 PM CST
We made it. We got here a little before 9 am. We left at 4 am after not being able to sleep. We just decided to get up and go. I tried to sleep on the way up here but yeah right. I get terrible insomnia at times. Finally at 1 pm this afternoon Levi and I took a 3 hour nap. Daddy is still sleeping. Poor guy. Barely has had any sleep since Friday. All is well. I forgot not only my snowboots but my regular shoes too! All I had were my summer slip ons. UGH! Luckily dh found a brand new pair of boots at the thrift store. PHEW! I can't believe I forgot my shoes! The snow is deep and slushy everywhere. Dreading tomorrow. Of course.
There is a man here, Nick and his son Adam. They are from India. Adam is 11. They've never been to America before. They've been here since Dec 26th. Adam had some kind of heart surgery and had a stroke and lost complete use of his right side. I couldn't imagine going somewhere that far away. Sounds like they're going to be here for awhile. They're going to KY to visit w/ a family they met here then to Florida to visit friends then back here. Well guess that's it. Nick is watching Levi for me in the tv area since dh is sleeping and it's hard to get around a 3 story building w/ a double stroller lol.
His appt w/ the onc is 10:30 and then the mri at 3. Pray pray pray pray! Levi's here for a reason! God has made sure we know this. It is not up to us to question what or why. Just know that I have a very special son who is here for a very special reason.
Goodness getting emotional. Talk to you all later.
Monday, January 24, 2005 9:17 PM CST
Ebay seller thatfatbaby
Two more ponchos listed!
We leave tomorrow for Chicago. His MRI is from 3-6 pm Wed central time so pray pray pray!! I'll update when I can. Love you all!
Friday, January 21, 2005 7:25 PM CST
Hello all. Missed you all! My apologies for not responding to emails and what not. We were gone for about 10 days to Florida where we visited Mickey Mouse and Shamu. The children had tons of fun! Livie had a blast at Seaworld and Levi loved the aquariums. Anyway we got home almost a week ago and both kids had pink eye. I never knew pink eye could make one so miserable and sick. It's more than just a little pink in the eye. They're almost over that but the last couple of days I've been down w/ cough, severe SEVERE sore throat and earaches. Today I can barely talk. No energy. Have spent most of my time sitting in my recliner crocheting. My MIL picked up Olivia today for the weekend. Thank you so much Grandma Dee Dee!
Let's see..oh duh I learned myself hehe I mean taught myself to crochet while on our trip. Made some booties and a couple of small purses and now I already have something up on ebay! Toddler Rainbow Poncho/Purse set. If the link didn't go through you can search by toddler poncho or by seller thatfatbaby. I have another one almost completed and will list it tomorrow.
Dh and I working hard at paying down the rest of our debt. We've got better insurance coverage for him and the kids but at the moment I'm not covered. It would be another 400 bucks for me to have ins. through his work. So that's one of the reasons I wanted to make things to sell so I can buy me some medical insurance! How ironic huh that i get this severe sore throat?
For those of you that said prayers for Carina I thank you. Sadly she passed away. :( Lift her family up w/ your warm thoughts and prayers please.
I hope you all have checked out the auctions for little Zachary. They need some expensive equipment to make life easier for this little guy so please be generous and go bid! Ebay Auctions Seller name All4Zachary.
Levi has a brain and spinal MRI on wed late afternoon. Please please pray! If nothing shows up we're not going to continue chemo. We believe God has cured him but our earthly minds have a hard time dealing w/ it all. That made no sense I know.
Going to finish this poncho and head to bed. Night all. Pleasant dreaming.
Tuesday, January 4, 2005 7:58 PM CST
CHOCOLATE!! Who WANTS CHOCOLATE?? Now available Levi Ribbon Chocolate candy! Ordering info can be found here http://www.thekernsfamily.com/babylevi.html.
Don't forget donation giveaways are going on! Info for that can be found here http://melissasonlinegaragesale.bravehost.com/index.html
We're all packed and ready to leave for tomorrow! I dread the drive but can't wait to be in Florida!
The physical therapist was really pleased w/ Levi's progress over the holidays. Jason has been working nightly with him and it's paying off. He's starting sit by himself for several minutes at a time. He's grabbing a little more often w/ his left hand and raised his left arm up to shoulder height. She's still debating on getting him a thumb brace to keep him from clenching his left hand all the time.
I have officially started him on Cantron, an "alternative" medicine. He's still on 2 of the 4 chemo drugs. I was going to start the other 2 back up but generally during the 2 or 3rd week his blood levels drop and I didn't want that to happen while we were in Florida.
I am just so amazed at how so many people, strangers even, have surrounded my family with their love, prayers and help! It helps me keep going. To know others are fighting for my family's wellbeing too. that's it's not all just on my shoulders. I don't feel such a frantic need to find ways to raise money. I can concentrate more on my family, on research, etc.
Thank you to Melissa, Alisha, Midge, Lisa, Renee...oh there are so many! Thank you to all of you for sharing my burden with me. I love you all and God Bless you so much!
Monday, January 3, 2005 0:12 AM CST
Nice A Cozy's Midge wanted me to remind everyone that she is donating
20% of all proceeds to Levi.
Melissa has started doing giveaways and
other sites that are donating are listed at
babylevi.com/info.html.
Thanks! Please spread the word?
We are leaving on the 5th for Florida!! I dread the drive but am sooo looking fwd to seeing the ocean again. Some of you may remember we were preparing to move to Florida this time last year. For obvious reasons that's not happening but I still dream of the beautiful ocean and how relaxing and peaceful it is. Anyway we'll be back somewhere around the 15th. I doubt I'll have any internet access. Levi's MRI will be the 26th so please keep praying for NED!
Sunday, December 26, 2004 11:13 PM CST
Hello everyone. I hope you all had a great Christmas! We did. I want to thank all of you for your gifts, cards and warm wishes. They truly warm my heart and make me smile. I love telling my family members about Levi's "fan club". It makes my whole family feel good about the world out there. To know that he is thought of and prayed for.
We always go to my father in laws for Christmas. This was indeed a special night for us this year. My father in law (hehe he'll hear about this cause his wife, Gma Dee Dee reads this) is a bit quiet around alot of people. He gave a speech (I wouldn't say speech but lack of a better word) and said how happy he was that Levi was here w/ us. He remembered the doctor pulling him aside and saying to take Levi home and just love him (I'm crying!) and how thankful he is that we didn't listen and we fought for our son's life. I forget somehow in my daily life what we went through. Almost like it was a movie, someone else's life. Then something such as that reminds me of the hell that we went through. God sent us a miracle. A living miracle. And I want you all to know that. He is truly God's Gift. He chose us to go throw this and to make these life altering decisions and I praise him. He has changed my life for the better. I lived in my own little world and now my eyes have been opened. Every day I love on my son and realize that he shouldn't have been here according to man. Thank you God for this daily gift of love and "new eyes".
Ok enough tears and mush. Few things I don't want to forget. Thank you to our family members for the gifts we received yesterday at Janet's. I don't know who got what for my children as Livie was ripping them open and I was holding Levi so please don't be offended if I don't name specifics. I do know I am so happy to see Levi with new toys. I have felt guilty that I haven't been able to buy him the expensive gadgets like we did for Livie. Many of Livie's had been lost in the garage fire and/or just lost lol. Thank you for giving so generously to my children. Thank you so much Stephanie and Kurt for granting my wish of a donation to the Children's Hospital in my name. That made my day to receive the notice! We have to work on our family and get them all to do the same next year. You know what I'm talking about!
Lisa, I got your email the other day when I had my um mini-breakdown. I haven't replied because I haven't had a moment of peace. Even now I can hear Levi starting to fuss so I have to cut this short. I got the bottle of Cantron but haven't been able to start it due to the craziness of the holidays.
We leave Tues for Chicago but Levi has much congestion in his lungs and I'm not sure if they can put him under if he's sick. I am calling tomorrow to find out.
I love you all and think of all the good things you have done for my family. Happy Holidays and God Bless you.
ps Notifylist doesn't notify right away. On my aol acct I get notices of my updates DAYS later so I do apologize for that and if anyone knows of an easier way other than a yahoo group please lmk!
Wednesday, December 22, 2004 2:02 AM CST
Ok this is my final entry for tonight. Going to bed. For those of you just checking in might want to check the journal history. I have done some ranting tonight. Ironically I'm not the only one fretting about what we are doing for our cancer kids. Please read Jen's update for tonight. It is long but read. She talks about chemo and relapses, etc. Please pray for her Samuel. He's such a darling boy who's mom has told me much over the past few weeks. http://www.momandmepouch.com/SamuelsUpdates.html
Tuesday, December 21, 2004 9:51 PM CST
Thank you for the words of support and comfort. Today was a bad day to begin with and then to be told those things just sent me over the edge. Someone once counseled me when I was feeling guilty for feeling sorry for myself that even though other families have it way rougher doesn't make my families situation any less hard to bear.
Friends and fans of Levi expect to read more emotional posts in the days to come. It's the fear of the MRI, the holidays, etc. And ya'll know what I do when I'm stressed...I write! I moan, I groan, I cry, cuss (well not on here and hopefully not in front of Miss Parrot Livie).
I just read this in my email, don't know how long it's been there because yahoo tossed it in the spam box however the Lord made sure I read it at just the right time.
A Christmas to remember.
Pa never had much compassion for the lazy or those who squandered their means and then never had enough for the necessities. But for those who were genuinely in need, his heart was as big as all outdoors. It was from him that I learned the greatest joy in life comes from giving, not from receiving.
It was Christmas Eve 1881. I was fifteen years old and feeling like the world had caved in on me because there just hadn't been enough money to buy me the rifle that I'd wanted for Christmas. We did the chores early that night for some reason. I just figured Pa wanted a little extra time so we could read in the Bible.
After supper was over I took my boots off and stretched out in front of the fireplace and waited for Pa to get down the old Bible. I was still feeling sorry for myself and, to be honest, I wasn't in much of a mood to read Scriptures. But Pa didn't get the Bible; instead he bundled up again and went outside. I couldn't figure it out because we had already done all the chores. I didn't worry about it long though; I was too busy wallowing in self-pity.
Soon Pa came back in. It was a cold clear night out and there was ice in his beard. "Come on, Matt," he said. "Bundle up good, it's cold out tonight."
I was really upset then. Not only wasn't I getting the rifle for Christmas, now Pa was dragging me out in the cold, and for no earthly reason that I could see. We'd already done all the chores, and I couldn't think of anything else that needed doing, especially not on a night like this But I knew Pa was not very patient at one dragging one's feet when he'd told them to do something, so I got up and put my boots back on and got my cap, coat, and mittens. Ma gave me a mysterious smile as I opened the door to leave the house. Something was up, but I didn't know what.
Outside, I became even more dismayed. There in front of the house was the work team, already hitched to the big sled. Whatever it was we were going to do wasn't going to be a short, quick, little job. I could tell. We never hitched up this sled unless we were going to haul a big load. Pa was already up on the seat, reins in hand. I reluctantly climbed up beside him. The cold was already biting at me. I wasn't happy.
When I was on, Pa pulled the sled around the house and stopped in front of the woodshed. He got off and I followed. "I think we'll put on the high sideboards," he said. "Here, help me." The high sideboards! It had been a bigger job than I wanted to do with just the low sideboards on, but whatever it was we were going to do would be a lot bigger with the high sideboards on. After we had exchanged the sideboards, Pa went into the woodshed and came out with an armload of wood---the wood I'd spent all summer hauling down from the mountain, and then all Fall sawing into blocks and splitting. What was he doing? Finally I said something.
"Pa," I asked, "what are you doing?"
"You been by the Widow Jensen's lately?" he asked. The Widow Jensen lived about two miles down the road. Her husband had died a year or so before and left her with three children, the oldest being eight.
Sure, I'd been by, but so what? "Yeah," I said, "Why?"
"I rode by just today," Pa said. "Little Jakey was out digging around in the woodpile trying to find a few chips. They're out of wood, Matt."
That was all he said and then he turned and went back into the woodshed for another armload of wood. I followed him. We loaded the sled so high that I began to wonder if the horses would be able to pull it. Finally, Pa called a halt to our loading, then we went to the smoke house and Pa took down a big ham and a side of bacon. He handed them to me and told me to put them in the sled and wait. When he returned he was carrying a sack of flour over his right shoulder and a smaller sack of something in his left hand.
"What's in the little sack?" I asked.
"Shoes. They're out of shoes. Little Jakey just had gunnysacks wrapped around his feet when he was out in the woodpile this morning. I got the children a little candy too. It just wouldn't be Christmas without a little candy."
We rode the two miles to Widow Jensen's pretty much in silence. I tried to think through what Pa was doing. We didn't have much by worldly standards. Of course, we did have a big woodpile, though most of what was left now was still in the form of logs that I would have to saw into blocks and split before we could use it. We also had meat and flour, so we could spare that, but I knew we didn't have any money, so why was Pa buying them shoes and candy? Really, why was he doing any of this? Widow Jensen had closer neighbors than us; it shouldn't have been our concern.
We came in from the blind side of the Jensen house and unloaded the wood as quietly as possible, and then we took the meat and flour and shoes to the door. We knocked. The door opened a crack and a timid voice said, "Who is it?"
"Lucas Miles, Ma'am, and my son, Matt. Could we come in for a bit?"
Widow Jensen opened the door and let us in. She had a blanket wrapped around her shoulders. The children were wrapped in another and were sitting in front of the fireplace by a very small fire that hardly gave off any heat at all. Widow Jensen fumbled with a match and finally lit the lamp.
"We brought you a few things, Ma'am," Pa said and set down the sack of flour. I put the meat on the table. Then Pa handed her the sack that had the shoes in it. She opened it hesitantly and took the shoes out one pair at a time. There was a pair for her and one for each of the children---sturdy shoes, the best, shoes that would last. I watched her carefully. She bit her lower lip to keep it from trembling and then tears filled her eyes and started running down her cheeks. She looked up at Pa like she wanted to say something, but it wouldn't come out.
"We brought a load of wood too, Ma'am," Pa said. He turned to me and said, "Matt, go bring in enough to last awhile. Let's get that fire up to size and heat this place up."
I wasn't the same person when I went back out to bring in the wood. I had a big lump in my throat and as much as I hate to admit it, there were tears in my eyes too. In my mind I kept seeing those three kids huddled around the fireplace and their mother standing there with tears running down her cheeks with so much gratitude in her heart that she couldn't speak. My heart swelled within me and a joy that I'd never known before, filled my soul. I had given at Christmas many times before, but never when it had made so much difference. I could see we were literally saving the lives of these people.
I soon had the fire blazing and everyone's spirits soared. The kids started giggling when Pa handed them each a piece of candy and Widow Jensen looked on with a smile that probably hadn't crossed her face for a long time. She finally turned to us. "God bless you," she said. "I know the Lord has sent you. The children and I have been praying that he would send one of his angels to spare us."
In spite of myself, the lump returned to my throat and the tears welled up in my eyes again. I'd never thought of Pa in those exact terms before, but after Widow Jensen mentioned it I could see that it was probably true. I was sure that a better man than Pa had never walked the earth. I started remembering all the times he had gone out of his way for Ma and me, and many others. The list seemed endless as I thought on it.
Pa insisted that everyone try on the shoes before we left. I was amazed when they all fit and I wondered how he had known what sizes to get. Then I guessed that if he was on an errand for the Lord that the Lord would make sure he got the right sizes. Tears were running down Widow Jensen's face again when we stood up to leave. Pa took each of the kids in his big arms and gave them a hug. They clung to him and didn't want us to go. I could see that they missed their Pa, and I was glad that I still had mine.
At the door Pa turned to Widow Jensen and said, "The Mrs. wanted me to invite you and the children over for Christmas dinner tomorrow. The turkey will be more than the three of us can eat, and a man can get cantankerous if he has to eat turkey for too many meals. We'll be by to get you about eleven. It'll be nice to have some little ones around again. Matt, here, hasn't been little for quite a spell." I was the youngest. My two brothers and two sisters had all married and had moved away.
Widow Jensen nodded and said, "Thank you, Brother Miles. I don't have to say, "'May the Lord bless you,' I know for certain that He will."
Out on the sled I felt a warmth that came from deep within and I didn't even notice the cold. When we had gone a ways, Pa turned to me and said, "Matt, I want you to know something. Your ma and me have been tucking a little money away here and there all year so we could buy that rifle for you, but we didn't have quite enough. Then yesterday a man who owed me a little money from years back came by to make things square. Your ma and me were real excited, thinking that now we could get you that rifle, and I started into town this morning to do just that. But on the way I saw little Jakey out scratching in the woodpile with his feet wrapped in those gunnysacks and I knew what I had to do. Son, I spent the money for shoes and a little candy for those children. I hope you understand."
I understood, and my eyes became wet with tears again. I understood very well, and I was so glad Pa had done it. Now the rifle seemed very low on my list of priorities. Pa had given me a lot more. He had given me the look on Widow Jensen's face and the radiant smiles of her three children. For the rest of my life, whenever I saw any of the Jensens, or split a block of wood, I remembered, and remembering brought back that same joy I felt riding home beside Pa that night. Pa had given me much more than a rifle that night; he had given me the best Christmas of my life.
Don't be too busy today... Share this inspiring message.
Thank you and God Bless You Too.
Tuesday, December 21, 2004 8:37 PM CST
Ok this is the second entry in just a few minutes so if you want to read what I already sent out on the list you'll have to hit the hjournal history. I'm just so upset!
I know first hand other people have it wayyy worse we do. I see it every month face to face in the cancer waiting room. I see the beautiful children who are pale and sick and bald. I talk to the parents and listen to their fears every evening at the RMD house. I feel ASHAMED that while I'm holding Levi that ask me if my child is in the hospital and I have to tell them "no this happy, healthy blond baby boy is the *patient*." I pray every day for all the cancer children to get healthy, stay healthy. To give their parents strength to fight the battle. I give money to those that I can when I can! I'm trying to get raffles going so I can help other families!
This person who has ripped my soul out today only sees what she perceives has greedy (I'm guessing that's how she sees me). She fails to see the hurt, the fear, the strength, the tears, the smiles, the thankfulness, the prayers. She doesn't see what I do "behind the scenes". She obviously is ignoring the fact that I'm busting my butt to do things to raise money. Ugh I give up. I'm going to go veg w/ the kids and maybe do some sewing.
Tuesday, December 21, 2004 8:22 PM CST
Well today has sucked. Levi's MRI is a week from tomorrow and you can tell by my mood, words and actions today. I'm so messed up by it. I tried to reschedule but got a guilt trip for it so then I tried to get the original time back and oh what a mess. But got it straightened out. They didn't tell me it's a brain AND spinal MRI. So that freaks me out even more.
Then I got into a spat w/ someone who previously badmouthed me about how I spend money (bought a fifty dollar item a few months back) and so I just lit into her. So she threw it up in my face that she donated money or something (can't find anything in paypal but that doesn't mean she didn't I'm not doubting that she didn't) and oh my gosh. I started bawling. Here's my email to her the bolded part in the beginning is what she said that set me off:
Okay, I'm not even gonna to go there. Maybe I'll email you sometime about my >own personal feelings, but make sure to take a look in your Paypal history >sometime or look back over the benefit auctions from earlier this year before >you attack me. Your son is relatively healthy now. Rejoice in that. Some >moms aren't so lucky to get the 2nd chance that God gave you. Enjoy the >holiday season with your family, and remember that there are plenty of people >out there that are worse off than you.
(this is what i said) You don't even have a CLUE! Relatively healthy? Hmmm. So you must only read bits and pieces of my online journal...just enough to give you ammunition but not enough to see why your ammunition is invalid. First of all I've thanked as many people as possible PERSONALLY for their kindness and generosity. Second of all I didn't ASK ANYONE to give me money, they did it out of kindness! We WOULD not have survived had everyone not helped out. Have you read anything out of the journal to see what we've been doing to make sure we survive on our own? From selling stock and camper to heating our home w/ a woodburning furnace to my trying to find things to sell vs accepting free money? Have you read the story about how there has NEVER BEEN A SINGLE BABY diagnosed w/ this VERY RARE disease? How he's on hundreds of dollars worth of drugs that very well will likely cause secondary cancer such as leukemia? Let alone affect the kidneys, liver, stomach, infertility, brain functions? And the longer he goes without showing any signs of cancer NOW the higher the chances of it metastisizing at an older age?? That even the doctor has flat out said he doesn't know what to do for this cancer? You know that 80% cure rate they spout on commercials? That 80% "cure rate" does not include those same children that die from infections from the chemo killing their immune system. If a child ever has their tumor(s) removed then they are considered cured. They don't take that child out of the cure rate if s/he dies 3 months later from rapid reoccurance in the lungs, stomach, spinal cord, etc. He's not relatively healthy. He's healthy WITH A DISEASE! He's healthy w/ TOXIC DRUGS INJECTED DAILY THAT MIGHT KILL HIM!! Do you know that each trip up to chicago costs us a few hundred just for the trip? Not counting the 300 dollar bill we get 3 weeks later. So average we lose on ea monthly visit is $500!! I don't know about you but that's a whole freaking paycheck for us! And starting January first our insurance premium will either be almost $500 a month or if I get insured too it'll be $800 a month! TWO PAYCHECKS!! Just take a moment and think about it. Surviving a surgery he should have died during and showing no signs of cancer as of oct does not make the grim reaper disappear and he certainly won't take w/ him the thousands of dollars we don't have to pay for all this! He has to have MRI's every 2 months. He has to be put under for that. Did you know he had a "reaction" last time? And that the time before the freaking nurse didn't wipe the end of his central line (ya know that nice lil gadget that goes straight to his heart?) w/ alcohol and he got what could have been a fatal bacterial infection. He was hospitalized for 3 days. Do you know why he has to have his blood drawn every week? To see if he can go visiting, to see if we can take him out in public, to see if we have to wash our hands every single time we touch him. Otherwise his ANC levels could drop, someone could give him a common cold and he COULD DIE! Oh yes my son is relatively healthy.
Please let me know how much you "generously donated" to my family so I can give it back. I don't like taking money first of all and it's even worse when the person tries to make you feel bad for it. I certainly hope that whatever you feel towards me that you still have a little kindness in your heart to pray for my son to live at least half as long as your children.
Ok what I say next was not in the email just more rambling from me. I thank God every day for myself. I pray all day long to keep him "relatively healhty" and alive. And while alive to give him quality of life. There no "right" decisions to make concerning his drugs, etc. However if we make the "wrong" decision it could kill him. And if he dies we'll never know if the "other" decision would have been better. Either way whatever decision is made is made by US his parents and whatever the outcome is is OUR FAULT! Because we made the wrong decisions. I pray daily to let me know what the right decision is even though there isn't a right decision. It's all a guessing game. It's all a gamble. And Levi's health and life is the outcome. And we're the gamblers who don't want to play the game!
Tuesday, December 21, 2004 0:45 AM CST
Thank you for the cards and gifts! Thank you to the "Glicks" for the outfits! Wayyyy cute. Thank you to Dreamseeds for the smell pretties! Livie's got ahold of one of the soaps and is constantly washing her hands now w/ her "tope". My brain is giving out on me but thank you to Dawn of the oct board?/mommy group? for the card!
Grandma is you're reading this we got our gifts today! I put them under the tree which we just finally put up yesterday. Or should I say I put up.
The kids' pics are in so family members you'll be getting some soon!
Still trying to get his MRI postponed. How often does a trip to Florida/Disneyworld literally fall in your lap? I mean my best friends are going for a convention so gas/lodging is reimbursed and my MIL has two park hoppers left over from a trip there. So how can I NOT go? I've never been to Disneyworld and obviously Livie would LOVE it! Plus we have to have luggage racks put on top of my van for this trip (3 adults and 4 kids...not enough interior room!) and that can only be done next week which if I go to Chicago it'll be a 2 day trip at least!
Anyway finally starting to get excited about Christmas.
Oh some auctions are up.
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&category=26269&item=4345436800&rd=1
and
http://search.ebay.com/_W0QQgotopageZ1QQsassZthatfatbabyQQsorecordsperpageZ50QQsosortpropertyZ1
The ebay auctions that are listed under my name aren't done by me. I'm allowing Melissa to set them up as I don't have the time.
Also at http://babylevi.com/info.html are several other shopping options. Some drawings will be available probably after the New Year. I know nobody wants to do extra shopping right now so no worries! I'd rather wait til after the New Year myself. TTYL!
Sunday, December 19, 2004 1:14 AM CST
Hi all! First of all Happy Birthday to Grandma DEEDEE! Her bday was technically yesterday since it's Sunday morning.
We're all just 'popping along". I've been sick all week. Well off and on. Let me tell you if you've never given herbal med a second thought you should. I've been taking echinecea and fenugreek (sore throat) and they kick cold germs butts! If I don't take them I feel way awful, I take them and I can actually function w/ minimal cold side effects! I've not touched any regular cold meds and I feel mostly great. Sound awful but feel pretty good considering.
We've been working on Levi's arm. The PT said he'd be about 3 months behind. So every day several times a day I have to do certain movements and such w/ him.
I'm going to see about rescheduling his MRI. It's just nuts to try to get to Chicago smack dab in the middle of the holidays! Plus 5 or so days after we get home the kids and I are leaving for FLORIDA! And if something shows up on the MRI obviously we wouldn't be going. Now I'm not putting a vacation before Levi, please don't misunderstand me. I'm putting sanity first! Just for a couple of extra weeks. Besides if the MRI is in January then our new ins coverage should cover the entire visit. Our last dr's visit cost us over $300 just to see the doctor! Because insurance doesn't cover them!
G'night all. Pleasant dreaming and all my love!
Tuesday, December 14, 2004 6:18 PM CST
Wow mymind is racing a thousand different directions. At first I was so excited at the prospect of raffles to help not only my own family but other families however I can't find a straight answer to online raffle legalities, if it's a straight answer it's in legalese which I'm not fluent in. So then I thought well what if I create a page w/ paypal buttons to different families in need, the donaters send me the paypal receipts and their name would be entered into a drawing for a free item. So then I started getting excited again. But then one potential donor of an item decided to not donate because she wanted the proceeds to go directly to my family. Which is very sweet of her! However that wasn't something I anticipated. Melissa's emails were inaccurate when she said they were for my family. I fully intended on helping other families too. However Melissa's been trying to auction stuff off and those proceeds would go to my family however it's christmas and mostly too late for christmas gifts to be purchased online so no one's buying which I don't blame them. Which brings me back to the raffle ideas. I realized last night that this is the way I'm dealing with this. This is my small way of trying to control my life. By bringing in money but without people just GIVING it to me. Accepting charity is very humbling and sometimes embarassing and hard to do. But last summer we had to. We had no choice. We would not have survived without all the donations and gifts. Now dh is back to work (mostly) and I need to bring in money to supplement. That's why I'm trying to come up w/ ways to do it without someone just giving us money. I've started the cafepress store, I bought those rubberband bracelets (hmm not such a hot ticket), I've been searching the internet for other fundraiser ideas, adding affiliates to my site. I just want to do SOMETHING for my family's situation. I want to have control over something. Ok I'm getting emotional.
BTW I've added things to babylevi.com under info for shopping and stuff.
Sunday, December 12, 2004 9:55 PM CST
Just thinking about everyone out there who has done so much for us. I know you all probably think I'm a pretty negative person but really I'm not. I use this site to whine, moan, vent so that IRL (in real life) my husband and children don't have to put up w/ it. Not that I'm always cheerful and happy go lucky but when I get a chance to vent on here, all my inner thoughts and worries (i'm a major worrier!) then I can go play w/ kids afterwards or chat with my dh about other things OTHER than my worries. Someone complained once that all I do is complain (I guess she didn't expect me to catch on that she was talking about me) but come on! This is MY site. Don't read it if you dont' want to hear about it! And if you do please read all of it so you understand somethings you might get just by reading once or two updates. This is like an online diary for me.
Right now the children are at my feet and Livie is tickling Levi AND decorating a package I'm sending out for someone in need. It's so cute. Livie will roll Levi across teh floor and he just cracks up well until he gets fed up with it. Now he's trying to latch on to a box. Silly boy boobies don't grow on well boxes!
I thought I was smart when I installed a swinggate to my computer room. Ya know keep Livie out and all that so I can get work done. No, all I've done is lock her IN w/ me. Sigh. Will I ever learn?
I've been trying to clean up my filing cabinet. Ya know that last time I ever put anything in my filing cabinet? Ya know actually filed somethign away instead of piling it next to my desk? 2002. Yup you heard me almost 3 years ago.
Hmm Livie probably oughtn't sit on Levi. GTG her entertaining him for me is turning a bit unsafe. TTYL Oh now she's ringing a bell in his ear. Thanks daddy for teaching her that!
Friday, December 10, 2004 5:47 PM CST
Nothing much going on. Levi's bloodwork was good again this week. Jason got the fuel pump replaced.
He had an insurance information meeting this week. UGH is all I can say. For all of us to have the type of insurance we need to cover Levi it will cost us $800/month PLUS 20% copays. So we'll have insurance coverage just nothing to live on! We got turned down by Kidcare due to making too much money. Which gee after this month it won't matter we'll have great insurance coverage. I need to get my butt in gear get my store going again, start advertising Levi's store, get the other cafepress stores going. I KNOW I can make up partial difference if I just had TIME! Oh get this if we don't insure ME the insurance is only $460. Isn't that STUPID? Almost double just have me insured. So dh is looking into outside insurance for me. The only thing is I'm on a pres. drug that is over a $100/month.
It's so weird. When I was pregnant I was really getting things done w/ my store. Livie would happily play beside me or whatever and let me get stuff done. Now Livie won't let me do anything! It's generally not Levi that keeps me from doing what I need to do. I've considered putting her in daycare a day or two a week but of course that costs money and the bigger big deal is the germs she'd bring home.
I'm thinking I should pass on my diaper donation program. The dipes take up too much room, plus I eat alot of the shipping costs. I'll have to ask on the cloth diapering board if anyone is interested. I really hate to give it up though. It's always been my one way of giving back to mamas. I don't know.
Tuesday, December 7, 2004 11:19 PM CST
I've done some tweaking on the above info stuff. Took out all the info and moved it to babylevi.com.
You all are NOT going to believe this! UGH UGH UGH. Wasn't going to say anything cause I'm always whining about something (told ya I only write when I'm upset). Well on our way home from Michigan my dh tells (on the phone) that he was driving to work and the roads were bad cause of all the snow and a chunk of concrete ripped the entire exhaust system off his car. Sigh. Parts=$700.00. Fighting the town's insurance for coverage. Ok so fine if they dont' cover it will just cut back on this and that, he'll work even more OT, etc however tonight he calls me and tells me his car is dead at the gas station by where he works. Sigh. Thinks it's the fuel pump. It's 40 miles from home and about the same from our friend's garage. So he's waiting on a tow and I'm waiting for him to call me so I can go pick him up which is half hour away one way. Hmm guess maybe I won't be ordering my mom's Christmas presents. Glad Livie is staying the night at my mom's tonight. Only have to drag snorty snotty Levi out of the house.
So there's my gripe for tonight.
Sunday, December 5, 2004 11:26 PM CST
I wrote this late last night while hiding in the basement. :)
I always have so many things I want to put in this journal. During the day and especially late at night trying to get the kids to fall asleep in bed so many beautiful words of thankfulness, prayers and appreciation flow through my mind. By the time I get a moment at the computer they've gone one. Flowing back into the void. I try to coax them back but someone always needs me or I get caught up trying to research cancer, treatments, etc.
First-BabyLevi.com is UP AND RUNNING! It's not complete but it's there. Thank you to Leigh-Ann for all your hardwork. She did the graphics and webdesign. Her email is at the bottom of each page so contact her if you ever need someone to do graphics or webdesign.
Renee- omgosh thank you for your um words of persuasion in obtaining babylevi.com. :) You go mama! Hope we meet up next time I'm in Chicago. Ya'll should drop by her site firstclassfurnishings.com.
Tina, Tina, Tina, despite your own world of heartache you are still there for me and helping me out. Thank you for the webspace. If anyone is reading this lives in Northern Cali check out Tina's parenting website at Fresnofamily.com.
Secondly BRACELETS ARE HERE! I will mail them out as children and time allow. I have many ready to go just have to get stamps.
Thridly (is that proper english?) I received all the cards and notes that went to the Southside fund acct. I didn't even know they existed til recently! Thank you so much Amanda for taking care of all that. I truly appreciate it. God Bless you.
Fourth-In regards to my mommy's day out. I know some are wondering where dh came up w/ the money. Join the club. I do know that anytime he needs $ but doesn't want me to know he starts selling stuff on ebay. He has his own paypal and ebay accts. I've always left that to him. That's his little thing. They're his items (carparts, baseball cards, etc) so it's HIS money except for when we are severely hurting. Also he's been working alot of overtime (too much!) so he's probably been keeping a little bit back every week. Even though I handle the checking acct and bills I don't see actual paychecks just the deposits in the checking acct. What I do KNOW is that none of the money came from any donations and gifts. He came up w/ the money to treat me like a queen for a day all on his own. Any money donated through paypal go into my accts then into the checking acct.
Honestly I was a bit perturbed myself when it was all said and done. Here I am doing what I can to make sure we can handle any future hospitalizations and emergencies and he's spending money...on ME! I did ask how much the ring cost and I assure you all it wasn't outrageous or even expensive. That was the only thing I said to him in regards to money because I didn't have the heart to wipe the smile off his face by criticizing him for something he worked so hard on.
We survived the summer thanks to so many kindhearted and generous individuals and businesses. Now I'm doing what I can to not have to ask for help again. The fundraisers I'm doing now helps w/ the costs of Chicago trips which almost equal a week's worth of lost wages if dh goes and if we get to stay at the RMD house (more money if we stay at the motel). I have a really tough time w/ all this money given to us and have done my best to make sure it was spent wisely. I went through all our bills and figured which ones we should pay off (ones w/ interest for example) so we could pay more money on the medical bills when they come in. For example, let's say I paid off a credit card that was $100.00/mo. If I pay that off then that's 4 $25.00 payments to different dr's, clinics, etc. Alot of people don't realize that these bills may not roll in for weeks or even months after the fact. Right now we're fighting w/ insurance over an almost $6,000.00 hospital bill from when he was hospitalized in July for that bacterial infection.
Some say I don't have to justify or explain. I say I do. It's YOUR money. You deserve to know where it goes. And I want to reassure you that every penny in some way has to Levi whether it be medical bills, gas in the van or food on the table.
I love you all and God Bless each and every one of you. Through your prayers you have kept my son alive and through your generosity you have kept our home intact.
Tuesday, November 30, 2004 3:43 PM CST
HOME! We made it without much problem. The last couple of hours Levi was quite cranky but can't blame him. Took us about 8 hours.
Dh was quite happy we were home. Big family group hug. I didn't realize how much I had missed him til he walked in the door. He was at work when we got home. I stayed up too late as usual but slept so heavily when I finally went to bed. Woke up too early but that's ok.
My emails on my yahoo acct date back to Nov 21 so I'm trying to catch up! If you don't hear from me email me again!
Babylevi.com should be up and running soon. I have so much I want to put on it like thank yous, links to other sites, info, etc! Leigh has been working very hard and I appreciate it so much. I have no idea how I'll ever be able to repay her and so many others.
I said I was praying to God for a clear answer to what I should do...imagine my shock? awe? when I received an email from our very first internet angel Lisa who played a major role in saving my son's life. She's the one who contacted all the doctors for second opinions and got us to Boston. She is the sweetest person. She's probably the one person who could do no wrong in my book yet she's always so worried she's bothering me when she emails me. Would you all please say a prayer for her? She has a very emotional time coming up this month, it's not my place to tell the world what it is but she could really use your prayers for strength and inner peace. So please say a prayer to God to surround her w/ healing and loving light.
Anyway got lots to do so I'll ttyl. It's SNOWING!! Livie wants to "pay in the 'no"!
Saturday, November 27, 2004 9:32 PM CST
Still here in Michigan. We're having a very good time visiting w/ my grandparents and uncle. We (mom, uncle, me and the kids) hit the mall today. We picked up a Graco Euro double stroller at Sears. It's NICE! Only $110.00! It was so nice to be able to cruise the mall w/ both kids securely in the stroller. I just can't rave enough about it lol!
Liv had a blast in the play area. I was very impressed w/ the mall. It had a family bathroom where mom and/or dad could take kids into a private bathroom. It had a big people and little people toilet and sink. Plus there was a private nursing room complete w/ glider! I wish our local mall had that. I know most of you are thinking big deal but to a nursing mom w/ a toddler it was great!
We lost the key to the van!! UGH! But thankfully someone had turned it in. I never realized that the paper on it from the motel valet parking had put name/make/model and license plate on a tag and it was on my keyring! ANYONE could have found it and taken off w/ my van! WHEW thanks be to God for looking out for my family and I once again.
My dh is having a grand time baching it. Even though he's missed out on this trip he's getting some much needed alone time. He was doing the dishes today when I called! Whadda guy!
Levi is growing like crazy. He can balance in a sitting position by himself for quite awhile! Just started doing it the last couple of days. He also rolled himself all the way across the floor. He is so amazing. Everyone is so taken with him. Keep telling me what a happy baby he is and it's true. He will play on the floor for the longest time. Today at the mall he never complained.
I started him on his thalomid and celebrex again as the oncologist and I compromised on. On one hand these toxic drugs scare me and I want to believe as my MIL does that God has fully healed him but then I think of all the other children out there who's parents probably so badly wanted or even DID believe that and their child got cancer again. Chemo drugs can cause leukemia btw for those of you who didn't realize that. People think that oh well he's cancer free! Chemo is scary sure but he's cancer free! The drugs are so toxic though! It can do so much harm. But I need to remind myself as the doc did that many many experts are apart of his treatment. I know I should just trust and let someone else take charge but it's so hard to do that especially knowing that doctors are not God and do make mistakes. What if we had listened to the first doctor? Baby Levi would be Angel Baby Levi. I keep praying to God to give me a very clear, obvious answer as to what I'm suppose to do.
Little Livie funny: She doesn't call horses "horses". She calls them "neeeeiiiigh"s. She makes a horse sound and sometimes even paws the air like a bucking horse.
Well that's it for tonight. Happy weekend to all and God Bless.
Thursday, November 25, 2004 7:01 PM CST
We're in Michigan! OMGOSH the drive was awful! We left the Lincoln Park area of Chicago around 2:15 pm and didn't hit the Indiana/MI border til app 7 hours later. Traffic was horrendous and very scary weather. After seeing two different cars in the ditch on I94 we decided to pull over for the night.
The doctor's appt went as expected. He's not thrilled w/ the idea of taking Levi off the chemo drugs. However he said whatever I decide he will support. He reminded just how many specialists are working on Levi's case. His tumor has been sent literally all over the world. He feels that risks of the chemo is very very minimal. We have to go back for an MRI the 29th. Sigh. Right in the middle of the holidays which means dh will be working OT whether he wants to or not and will not be able to go w/ me.
This is the first trip to the hospital where we had to stay at a motel. This has been a very expensive trip but what can ya do?
I have no idea what to do about the drugs. I'm so torn. I don't have strong enough faith in western medicine or in alternative therapies to just say "Ok let's do this." DH supports whatever I decide which on one hand is great on the other hand I wish he'd discuss it with me, read the literature and give me feedback. It's not fair to leave it all on my shoulders but he doesn't mean to. He thinks it's easier for me to read all I can and decide knowing he trusts me to do what's right. Well what if it isn't? And how will I ever know either way?
Anyway he weighs 17ish lbs and is 26 inches long. Bye bye infant carrier. I was hoping to be able to use it all winter to protect him from the cold going in and out of the vehicle.
Speaking of my dh. He's so wonderful. He is so very good to me. Last Wednesday he gave me a piece of paper. It had a riddle on it. When I figured it out the riddle was a clue to another clue. The two clues together told me I had an appt w/ a hair salon/massage on Sat. So on Sat. I left the kids w/ him. I get to the salon and I was given a one hour massage! Plus a haircut. Then when I was leaving they gave me another clue which took me to another salon where I received a pedicure and manicure. I then received ANOTHER clue that took me to a store where I received a gift bag. In the bag was a ring. :) W/ SEVEN diamonds. One for each year we've been together. SNIFF SNIFF! Then there was yet another clue! This time it took me to a restaurant where my beloved was waiting for me! Then he proposed to me again. He wanted to give me a day for me. All by myself without having to worry about the kids or anything. He is the absolute best guy ever!
I know I have lots of emails to answer, please bear w/ me. We plan on heading home Monday if the weather is good enough then it always takes me a day or two to get back into the groove of being home.
Thank you for all your kind words and prayers! God Bless and hope you've had a wonderful Thanksgiving!
Monday, November 22, 2004 8:44 PM CST
Leaving tomorrow for Chicago. Yippee. The good part is we get to go see my grandparents. His neuro appt went well today. Upped his phenobarb and told me it will be a very long time before he's ever off of it. Sigh.
Tonight I realized I haven't really done any Christmas shopping and since I prefer supporting wahms I best start now!
Anyone make knit Christmas stockings? Levi doesn't have one and I would love a handmade one. If there's time I would I would love matching stockings for the kids. Email me if you can help us out!
Talk to you all later!
Friday, November 19, 2004 10:55 PM CST
Ahhh more whining about money! The bills from Chicago are rolling in. 1969.00 so far. Not too bad right? That's just 2 months of visits (July and Aug) to the ped onc and the neuro. OHOH Just noticed this 1146.00 bill was WHILE HE WAS IN THE FIRST HOSPITAL!! WHich we've been told will be covered even if the insurance balks BECAUSE he was ADMITTED, etc. I'm very grateful to the union members that argue w/ the insurance people over this. PHEW so $823.00 is not covered. Sigh of relief. We received our first notice from State Aid and we've been turned down for temporary help because dh makes too much money HOWEVER their decision might not be the same for actual state aid. Oh gee. Yeah right! Somehow I doubt they're going to change their minds. I can handle this. I've got fundraisers started...sort of. So what if the only cafepress purchases have been my own and the ribbon designer's. Anyone feeling guilty? Don't! It's christmas time so I totally understand. However I think the shirts are sooo awesome and would make wonderful Christmas gifts! I got one for my dh! I bought two (I get to buy them at the base price which ahah is quite high! You have to sell ALOT to make any money!) anyway I bought two for the silent auction for my MIL's church. And of course one for me. Hmm gee maybe if I quit buying the shirts I'd be able to pay bills! Just kidding! Less than a hundred bucks and I think it's money well spent.
Well I'm off of here! Have a great weekend! Remember, Monday Levi sees the local neuro for the first time and then Wednesday we'll be up in Chicago then we're going to visit my grandmother up in Michigan for a few days. Happy Thanksgiving everyone!
Wednesday, November 17, 2004 11:03 PM CST
Little funny. Livie biffed Levi upside the head (his good side and no it wasn't funny!). I made her sit in the chair. So she starts throwing a massive screaming tantrum mixed w/ "mommy you not nice!" Aww she loves me sooo much!
Another cute story. THe other night Levi had fallen asleep in my arms. Livie was in the other room. So I laid him down in his cradle and when she asked "where's Levi?" I told a white lie and said "he's upstairs asleep" knowing that as soon as she found him she'd be all over him waking him up. So I go down in the basement to put wood in the burner and I hear over the baby monitor sobbing and "Bebi's alll gone.........where's bebi???" She was frantic when she couldn't find him upstairs!
Monday, November 15, 2004 12:01 AM CST
There are so many things I want to at least touch on. I hope I get it all down before Livie wakes up.
First of all! Thank you for all the wonderful cards from around the country! She loved them! Oh the stickers! JOY JOY! Hours of fun for both of us (her sticking them places me unsticking them lol). I loved the My Little Pony stickers. I wanted to keep them! We had a great party. Livie received several nice gifts. Her favorite was the 'nake (snake), my favorite was the Leap pad. Levi's favorite were the balloons.
I feel I should update you on our finances. I've whined about the bad side of them so I should speak of the better parts too. Because we sold off our stock :( and our camper :( (I almost cried when they pulled out)and thanks to generous donations we are for the most part out of our old debt. We did that so we would be ready to handle new debt. We also will have an easier time affording medicines and our trips to Chicago. Another reason I wanted to wipe out old debt instead of saving for the new debt is come January our insurance premium will go up. We have got to get a better plan! About $700 a month. Also our out of pocket, which will be lower, will start over. We just paid that! Or so it seems. Anyway I got griped about because I guess some people think you should be really in debt, on the verge of losing your home, etc before you get help. I, for one, had my eyes opened this summer and want to do whatever I can to prepare for the future. If it hadn't been for all the generous donations from the online community, all the auctions from wahm world, the benefit and help from my local nursing/AP group we would have not had a home to come home to! What I am scared of is another long hospital stay and I'm sure the communities might not be as generous this time. Not that they aren't wonderful but oh it's hard to explain. I'm afraid that some will think "hey I helped so much last time and she didn't even thank me personally" or something ya know? Before I forget, anyone that contributes the bank fund I have no way of knowing about it other than deposites were made.
So bottom line, presently we're doing "normal". However, I am doing all I can to ensure our future security and that we'll be able to handle any unforeseen events (within reason ahahah cancer doesn't understand that phrase though!).
We are considering other therapies for Levi. Chemo doesn't feel right to us. We're looking into Protocel. Of course it's not all that simple and pat but just wanted to update ya'll.
Friday, November 12, 2004 2:14 PM CST
Livie is 3!! WOW! Hmm funny thing is she still acts TWO!! In one hour it will be 3 years exactly! 3:12 pm! Well we think it was 3:12. No one remembered to check the time. You know I never wrote up her birth story however her birth convinced me to have homebirths. My water broke at home the night before her due date. It was a Sunday. Dh and I were lounging on the couch watching some crime show. Don't remember now. He was using my thigh/butt as a pillow. All of sudden I felt a gush and an internal popping sensation. I told him "I either peed myself or my water just broke!" Called the hospital, called my mom, called my mother in law. MIL's line was busy (no call waiting for her! GRRR). Dh about bit her head off when she finally answered. When we went in the ER (after hours have to go through ER) the nurses said that I was pretty happy for a woman in labor. I told them I wasn't having any cx yet ask me again in an hour how I'm feeling. Thinking back that's so funny cause we all laughed and smiled through Levi's birth. Anyway, doc talked me into an epidural so "your husband can get some rest". @@ Who cares?? He wasn't in labor!! they wouldn't let me up off the bed because my water had broken. @@ Nobody bothered to tell me if the baby's head was engaged there was no chance of prolapsed cord. So for 18 hours I laid down only allowed ice chips (ate yogurt and drank water while in labor w/ Levi). For 3 hours I pushed and screamed and cried. I hated it! Nobody told me I could stand up and that would make it happen so much faster and easier. (only 20 minutes of pushing w/ Levi) I remember my MIL kept saying everytime the top of her head would appear "THERE SHE IS!" I finally told her to stop saying that! Everytime she said it I thought Livie REALLY WAS HERE! I remember the first night w/ Livie. The nurses tried to take her away so I could get some sleep. AS IF I COULD SLEEP! I just had my first blessing! I told them she was MY child and I wanted her IN MY ARMS! (right now my first blessing is crying in my ear because I won't let her have cake @@)I remember we just cuddled, nursed and looked into each other's eyes all night. It was the most magical moment. I'll never forget that night. (now she's throwing a tantrum for booboos) Happy Birthday Dearest Olivia Christen!
Levi's nose is getting better. He did great getting his blood drawn this week. We slept through physical therapy. No sleep the night before. OOPS!
A HUGE THANK YOU to my most wonderful grandmother in the world! I was able to purchase babylevi.com! That's like the best Christmas gift ever!
It's been a rough week for mommy and daddy this week. Daddy has been working 16 hours a day this week. Leaving at 5 am and not getting back til 11:30 pm. He's been lucky if he gets 4 hours of sleep. So far he's got the weekend off so yippee!!
Saturday, November 6, 2004 6:58 PM CST
I ordered the bracelets!! WOOHOO!! It'll take a few weeks for them to get here. I'm so excited! OOPS I think I forgot to tell them what I want them to say lol. I told them the color of the band, the font and what font but not what I want them to say. Silly me!
Friday, November 5, 2004 9:05 PM CST
Levi's doing the army crawl!! It's sooo cute. He's really starting to get around. :)
His blood levels are back up so now we can put him back on the drugs that brought it down in the first place. Isn't that ironic? He's also got the nastiest, snottiest nose poor little dude. Tough for him to nurse or sleep.
Since our next appt is the day before Thanksgiving and dh HAS to work or not get paid for TDAY my mom and Livie are going up w/ me and then afterwards going on up to Michigan to have Thanksgiving w/ my grandparents and aunt and uncle! YEAH! It'll be such a treat to visit w/ all of them. At least I won't have to decide where to eat this year. It's also a big deal on figuring that out. Christmas is too. Maybe we'll just stay home!
Well have to cut this short. Livie's having a minor meltdown over some ball that's missing. @@
Thursday, November 4, 2004 10:34 AM CST
I have received contradicting emails about Levi being on Ellen. So if anyone manages to get a copy of it or something please share! It was the episode about a tennis racket ?? lol and the guy from King of Queens.
Monday, November 1, 2004 7:10 PM CST
So many things to write about I hope I can get them all typed up before one of the children needs me.
Livie's still coughing but seems better. I haven't given her any meds today and haven't heard her coughing so that's good.
Levi's still a happy growing boy. He does have shadows under his eyes and a bit blotchy. But otherwise his normal, happy self. I'm so scared to leave the house now since his immunse system is so low. I would love to enroll Livie in preschool she really needs interaction w/ other children and to get out of this house once in awhile this winter but am afraid of the germs she'll bring back with her (not even considering the cost but that's a whole other issue).
My emotional state of mind seems to be better. Since getting the clear MRI which was the major reason for my depression and worries that has been a major weight off my shoulders. Also since we sold our stock and camper and have been able to pay off old debt so we're ready for the medical bills as they continue to come in has helped. I've been in a much better mood, been productive online getting things together.
I need another 100 dollars to reach the minimum requirement for the bracelets on top of that GOOD NEWS babypost.com has agreed to sell the domain after much begging and pleading. Thank you to Renee of firstclassfurnishings.com for talking to him. So that's 300 I'm going to have to get. I know to alot of you it seems silly but I think it'll be beneficial in the grand scheme of things. Also it's a small victory for a country bumkin mom against a big company kwim? So as soon as I get the money up I will be purchasing that and Tina of mommychats.com will lend me use of webspace.
I'm trying to get a load of cloth diapers sold, I have a huge list of all sizes so if anyone is interested please drop me an email and I'll send you the list.
Thank you to all the families that have preordered the bracelets. Couldn't do it without you!
Levi's personal website is underconstruction as we speak. Thank you to Leigh for that!
If anyone wants to take on the responsibility of getting magnets ordered and raising funds to order them please contact me. That would be one less thing I have to deal w/ so I can get others things done. I think that's it for this update. TTYL!
Sunday, October 31, 2004 3:58 AM CST
UGH! Who set the puke alarm for 3 am?? Livie developed a cough night before last tonight in bed she was coughing so much she puked. She was asleep up against my back and her face was resting on my head right by my ear. I heard gag so I sat up fast and said "Don't puke on me!" She said "OH! Torry!" Thank goodness she didn't puke on me but all over the bed ewww. Dh cleaned that up while I cleaned her up, Levi slept through it. I'm trying to get her to drink some choc. milk that I snuck some cough syrup stuff in but she's not wanting it.
THe one time this week I get to bed early....grrr... oh well. That's why I'm the mommy. Poor little girl. She feels a little warm too. Sigh.
Friday, October 29, 2004 11:40 AM CDT
I have to change the paypal so ya'll can enter something other than Levi's medical fund.
We have to stop one of his drugs, the VP16 because his ANC is 340 and optimal is 500. Whatever that means! Time to do some homework. Also his eeg came back it says "Mildly abnormal, rare single focal epileptiform." So now we have to go back the 24th.UGH! On the bright side I hate giving him that drug so glad I don't have to!
Ok the ANC is the body's ability to fight infection. On one site it says that a child's level of 1000 would mean near normal sooo....340 seems awfully low to me.
Thursday, October 28, 2004 10:44 PM CDT
Rubber band bracelets fundraiser
I'm going to try to get the ball rolling on this one at least. I'm going to start taking donations/orders for these. As soon as enough money comes in I'll order them and when I receive them I'll ship them out to the paid orders. They will be the schoolbus yellow w/ "Pray For Baby Levi" on them. $2.00 per bracelet shipped. Please click on the donation buttons above and put "rubberband bracelet" in the subject. I hope this goes well!! I also have small pins w/ the childhood cancer ribbon and his name "Levi" across it available. Those are $1.00 shipped. Again put "levi button" in the subject. Please try to keep the donations funded (who am I to make demands huh?) but the reason why I say that is I lose 2.9lus 30 cents for each donation that goes to creditcard paypal addy. However if that's the only way so be it! Crossing my fingers I can do this! Hopefully this will raise enough funds to do the ribbon magnet fundraiser I want to do!
Thursday, October 28, 2004 8:24 AM CDT
MRI WAS CLEAR!! WOOOHOO!! Thank You God! My baby, ahem OUR baby has been cancer free for 4 months now! It was a very awful day despite the otucome. We went to the hospital at 8:30 in the morning for a doctor's visit and 30 minutes MRI. We didn't leave til 4:30! EIGHT hours. What a day. THen come to find out that we ummm misunderstood? Maybe were misled? in the beginning or more likely a combination of the two. Dr. G. told us that whatever insurance didn't pay they would take care of...him? it? I don't remember the exact wording but I remember feeling reassured that if ins. didn't cover it that treatment would be free. Um no. What insurance doesn't pay nor any other methods (Kidcare, ssi, etc) they can kindly put on a payment plan. And we just found out when we got home and received a few bills from Chicago that no, insurance doesn't pay diddly. So the absolute best news is NO CANCER. I couldn't be happier about that but now our financial future is very scary.
I've got 3 fundraising ideas I need to get the ball rolling on, unfortunately 2 of them require money to get started so am not sure where to start that. I'm too tired at the moment however to think about it. Going to take a nap then hopefully get some time this afternoon to work on some things.
Thank you so much everyone for your prayers. Like I told Jason when we realized just how bad the finances were going to get, I would much rather sell everything we own and pay every penny we ever earn and owe for the rest of our lives to keep my baby alive than to pay for a funeral for him. No matter how much in debt we go we are the luckiest parents to have such a beautiful, precious, miracle baby. Thank You God for blessing us with my sweet baby boy Levi.
Tuesday, October 26, 2004 8:02 PM CDT
Well we made it up here. It was a chaotic, long ride w/ a fussy baby. Late start too. But all that doesn't matter, we're here and we have to get through tomorrow. Pray pray pray for no sign of cancer! Will update tomorrow when I can.
Saturday, October 23, 2004 12:18 AM CDT
He rolled!! At 6 months and 6 days HE ROLLED! And of course he waited til mommy was out of the room. This was yesterday. We had been practicing and the PT was working on it with him. And he loves his Johnny Jump up now. He just jumps and jumps and jumps and giggles and grins. Has a ball in it.
Anyway I'm swamped from here til next weekend. Today baby shower and weenie roast, tomorrow I'll have to pack, Monday physical therapy and errands to run and leave on Tuesday.
Pray for a clear MRI!!
Thursday, October 21, 2004 1:54 PM CDT
Hi ya'll! Good news, Jason was able to secure a loan through his work's bank. It's even cheaper than it would have been through the dealership. Now we've just got to get the suburban sold! It's worth what we owe so hopefully we come out even on that. We've also :( got our camper up for sale. It can viewed here on ebay. It's a very nice little camper. Sad to see it go but that's ok.
Remember to pray for next week's MRI!
Wednesday, October 20, 2004 10:36 PM CDT
LOL clarifying the "need room for 3 carseats" lol. I am NOT pregnant nor do I plan on getting pregnant for a couple of years. My best friend lives half an hour away from me and we go to nursing group together and she goes to some of Levi's appts with me which both "events" are a half hour the other direction. She has a 2 y/o, then there's Livie and Levi and she has an 10 y/o plus she's trying to get preg and I want at least one more soooo....... Hopefully by the time I have a 3rd her 10 y/o won't be as interested in going places with us.
Oh yes we're going to sell the camper too.
Wednesday, October 20, 2004 5:21 PM CDT
First of all, I want to thank the "hot shot" company that owns babylevi.com. :) I apologize for my rude comment. They are going to let me use it!! I won't own it but I'll be able to use it and I guess that's good enough. THank you to Melissa for contacting them and thank you to Bob Golden of offering the use of the site!
Does anyone local have any connections at Dodge Landmark in North Pekin? I can't believe I'm sooo bummed about this. Anyway we went looking for a cheaper vehicle. I have to have towing capabilities and room for 3 carseats. Well we found a conversion van that would be cheaper monthly AND long term! After 4 days of waitng they finally got back to us. They can't get any bank to do a loan on a conversion van because you can't prove the value of a conv. van due to the customization. I'm sooo bummed! I almost started crying. The van is only 10,000 and that would normally be a piece of cake to even secure a personal loan (we um USE to have pretty good credit) but since we owe more than that on our suburban...they did try to work with us and give us more than the suburban is worth but still won't work. So for now we're just going to try to sell the suburban on our own and hope to get as much out of it as we can. I'm just so frustrated! We are all but maxed out on our loans! UGH!
Levi did really good today w/ his blood work. He GIGGLED when they poked him. It was sooo funny! Levi's fussing so talk to you later!
Monday, October 18, 2004 9:29 PM CDT
Ok so LovingLevi seems to be the winner in the poll. HOWEVER
Just on the dream note I've been wanting to tell someone about some dreams of mine so why not all of you? I have had for years, pretty upsetting dreams concerning my mother and my brother. They are always dreams of us fighting, physically and verbally. Not my mom and brother fighting each other but them, together and separately against me. They have always disturbed me quite strongly. After I had Livie the dreams kind of switched to my mother trying to take her away from me or making me feel like I wasn't a good enough mother. I had a very rocky relationship with my mother during high school and beyond but it's gotten better over the years. I did try to resolve my inner feelings about our personal stuff but was never able to because mom and I just don't converse well about feelings. We always end up arguing and crying. Ever since Levi was born my mom and I have been drawn closer together and we do appreciate each other more. And I finally had a dream that seems to have resolved my feelings towards her (at least dreamwise). I woke up feeling very happy and loving towards my mother and much better in general. See in this particular dream, she came to my rescue. I needed her, I called her and she was there. In prior dreams, she would either physically or verbally turn her back on me. This time she rescued me. I've been wanting to tell her about this dream but there's never the right time and I'm too embarassed. So here's to telling the world how healing dreams can be (hmm that's another book by Sylvia, the devil woman she is) oh yeah (I read her book AFTER the dream so it wasn't inspired by her devil influenced words sorry a little tongue in cheek humor there). And to telling my mom about my dreams without getting all mushy and/or argumentive.
Here's something all together different I wrote earlier when I had :::gasp::: five minutes to myself.
Mommy Writes
Alot of people think us "parents of sick children" write these updates for our children's "fans" (I like to think of them as famous). We don't. Ok I shouldn't say "we". Some may provide updates strictly because of obligation. I started for that reason. Because it was alot easier to tell a bunch of people all at once instead of verbally repeating myself while either bawling my head off or appearing totally indifferent because I was numb.
I don't do it for anybody now but me and of course Levi. When a child has a terrible disease it really isn't just about them.It's about their mommies and daddies. And alot of days it's all about ME. Why? Because Levi has no clue what's going on (Thank You God). He's happy, healthy and growing. He smiles a thousand times a day. His infectious giggles bounce of the walls. But mommy...mommy hurts all day and all night. Mommy fears the next MRI. Mommy fears the effects of chemo. Mommy fears. So mommy writes. It gets it out of my head so some thoughts can quit bouncing around. I also write to let everyone know "MY KID HAS CANCER AND IT SUCKS". I want people to know so they can PRAY.
Wow. I'm out of words. That last reason must be the deepest reason why mommy writes.
Sunday, October 17, 2004 1:43 PM CDT
BTW I thought about cancerbaby for one it goes along w/ thatfatbaby and two search engines will pick it up for cancer and baby searches. I REALLY wanted babylevi.com but some stinkin hot shot company bought up all babyinsertname.com sites and charges like 6 or 7 bucks A MONTH to use it when I can get domains for about that a YEAR! stinking big companies.
Sunday, October 17, 2004 12:29 AM CDT
Ok I'm trying to come up w/ ways to raise some funds. I have a friend working on some pins that I can sell on my site. Also been wanting to jump on the bandwagon and have a ribbon magnet made. I searched a couple of different sites for making them but they were really expensive. OOH and does anyone know how cafepress works? I was thinking of using the same ribbon design and setting up a cafepress page. Any other ideas?
Saturday, October 16, 2004 10:36 PM CDT
Levi at the Walk to Remember if link doesn't work go to coker.eventpictures.com, click on walk to remember. He's on the 3rd? 4th page, the little baby peeking out of a blue blanket w/ a light blue hat on. Livie is the little girl in pink hoodie sweatshirt w/ a cookie in each hand!
The walk to remember was a great success! I heard over 130 people attended. of course we got there 45 minutes late but I got to drop of my pledges, meet Michelle who FINALLY got to meet Levi! And I met her wonderful family and adorable daughters!
Friday, October 15, 2004 9:23 PM CDT
We're going to do some things different around here to hopefully help us out financially without Jason too much OT. For example he was originally going to work 1, 2 and 3rd shift this Saturday!! I was a little upset to say the least. Yes we need money however we need him too! So I told him why don't we figure out ways to SAVE money instead of just working you to the bone? So we're downgrading my vehicle to older one w/ better gas mileage, cash in some stock to pay off our credit cards and canceling (sobbing) the planned reconstructions of our foundation and new basement. We need a new foundation but we just can't do it this year. So instead of refinancing for that we'll refinance for a few thousand dollars to help pay off bills too. I'm also going to look into daycare or preschool for Livie a couple of times a week. I know that is an extra cost but I really need a day or two a week where I can concentrate on bills and insurance crap. I'm also going to ask my mother if one night a week, for example, every Tuesday have Livie stay the night with her. That way I don't get to the breaking sobbing point and call her up pleading to take livie. I'll have one night a week to look forward to. One night a week to spend w/ just Levi and bond with him and work on his physical therapy. Hey mom!! You reading this? LOL.
PT went well. Normal on his right side, slow on on his left which is a big fat DUH! The blood drawing was much worse this week than last. I could tell it hurt him even though I put EMLA cream on him. :( I dread when he starts recognizing the door to the lab room.
Anyway hope to see some new faces at the Walk tomorrow! Take your time to introduce yourself to Levi and I!
Tuesday, October 12, 2004 9:01 PM CDT
You all are so amazing. Thank you first of all for all the emails of love and support. I don't know what I'd do without you. Our prayer warriors, my personal uplifters. Thank you is not adequate either that I owe to Joanne of zannadu's and to Kathleen. They all but bought out my store. At first I felt guilty and embarrassed but to get my family through this I have to let go of pride sometimes. It also makes me feel good to have orders to fill. Gives me something that's from "my old life" to do. I give all of you my tears and the inadequate words of my simple mind. I wish I could give you the emotions of my heart so you would know just how I feel right now.
Tuesday, October 12, 2004 6:49 PM CDT
My body is finally succumbing to all the stress. I've got the mother of all colds. My nose is stuffed up and runny all at the same time. Sinuses hurt, eyes constantly watering and tough to keep open. Upper back ache. Whine whine whine. I just want to curl up in the fetal position in the middle of my bed w/ my two favorite pillows, my favorite blankets, my fan on high and sleep for hours...no DAYS!! I just want, for a moment to not THINK about cancer, to not THINK about death, to not THINK about the bills mounting. I feel so blessed that Levi is so "normal". I've been reading many other cancer babies' pages and it's so sad. So many of them are in the hospital. Not us! So many of them are showing terrible side effects from the chemo. Not us! If it wasn't for the scar on the side of his head you can't tell he's a cancerbaby. He's happy, he's growing. How can I complain? But I am! I think it's mostly because no one here understands my innermost thoughts, feelings, fears. Nobody knows how often I cry. How often I pray. Not even my husband. He "gets" to go to work everyday and "forget" for awhile. He isn't the one who has to keep Levi's meds straight. To make sure they get refilled in time. To make sure I don't fall asleep without giving them to him. He doesn't read the bills that come in (another couple of grand that came in last week that aren't covered by insurance). And his answer to it all is to work more overtime to make more money to try to keep our heads above water. I've got news for him. All the overtime isn't going to do it. We're bouncing checks every week which I haven't told him that because I'm too embarassed too. Maybe if I was better at managing our money. Maybe if I could just buckle down and get my site up and running to bring in a little money. I did tell some of the cloth diapering community that I did have some dipes listed but nobody's interested. I don't know what to do. It hurts my feelings that he doesn't even see this website. I've asked him occasionally and he always says no he hasn't seen it. Granted he's not home very often but somedays I just need him to read it to know how I'm feeling. It's hard to tell him how I'm feeling when Livie's screaming for "boo boos", Levi needs his meds and I haven't had a shower in 3 days. Please, no one get me wrong. My husband has been the best. He's only one person too and can only do so much in 24 hours. It's hard for him to make the decision to go to work and make more money or to stay home and give me a break. We also got turned down for Levi's zofran (anti nausea) because insurance does "cover" it. Doesn't cover it enough though. Still costs over $600.00. I have so many charity forms to fill out and stuff and I've got most of it done but haven't had a chance to sit down and make sure it's all completed and actually mail it out. I wonder how the other parents do it. They have these beautiful websites, running fundraisers and starting organizations and I can't even get my bills paid! Ok done whining for now. Need to go be "just mommy".
Monday, October 11, 2004 3:56 PM CDT
Check out Levi's Quilt Of Love!
Saturday, October 9, 2004 10:56 PM CDT
Just playing around seeing exactly what html code this site allows. If all goes right there should be a pic of Livie in her new silky skirt (dress lol) and headband from Sarah's Silks.
Friday, October 8, 2004 7:33 PM CDT
GRRRRRRRRRRRRRRROOOOOOOOOOOOOWWWWLLLLLLLLLll!! I had a huge update typed up, previewed it, hit the back to edit button and it lost all my update. I HATE THAT!!
So now you don't get all the juicy details.
Levi starts physical therapy next week, hopefully that will also help him learn to roll over. Pray that he only has to go once a week for several reasons. A. that means it's not AS serious as could be B. it's almost half hour one way driving time.
I'm working on my site. Feels good to work on it. Hopefully be reopening soon.
Livie is really sick. Coughing, hacking, snotting, disgusting. Sorry. She's not disgusting just her nose is that she wipes on everything. She was sleeping under the table but she's up now.
Thank you thank you thank you to Sarah of Sarah's Silks for the beautiful skirt and headband for Livie and the gorgeous blanket for Levi. Am afraid to use it it's so soft and silky.
Thank you so much Molly for covering Livie's butt and er other body parts this winter! Some really cute clothes too! Love hand me downs! Both kids should be good to go for the cold season. I got a few outfits for Levi at the goodwill and I'm sure he'll get tons for Christmas.
I'm sad to say I haven't received a single pledge for the Walk To Remember. I'm sorry Molly. I tried. I'll still see ya there though! I know I have another week to collect pledges so maybe!
Friday, October 1, 2004 3:52 PM CDT
Someone sent me this and it's so true and perfect. http://allfunpages.com/specialprayer.shtml
As I told her please stay with us through our journey. We need you. Your posts, letters and most importantly your prayers.
I know I'm not very good w/ words and forget quite often to thank people for everything. I read other caringbridge sites and feel so guilty for not leaving beautiful thank yous on here naming individuals and what they've done. To be honest up til we got home I have no idea who did what. For the most part. Since I've been I've made an effort to send thank you cards when I can.
Please, everyone, please know everything, large and small, is all HUGE to us. Thank you for holding us in your prayers.
Friday, October 1, 2004 9:14 AM CDT
I thought having to give him these drugs every night was heart wrenching and depressing. Imagine how one feels when they wake up in the morning and realize they fell asleep without giving him any of his drugs. Talk about feeling like a POS.
I am so emotionally and mentally exhausted.Right now I keep thinking I can't take this anymore. But I know I'll keep trudging on for my kids. I have to. I'm the mommy. No one else can do this job but me. I need to find a support group. I have a nursing support group but they really don't understand and whenever I talk about Levi I feel like they might think I'm throwing a pity party when I'm not. This is just our life. I remember with Livie she'd throw up or have a slight temp and I took the wait and see approach most of the time. W/ Levi I have to immediately call the doctor and 9 times out of 10 head out immediately to the doc's that's 20 miles away. Drop whatever I'm in the middle of, get the kids dressed, gather up the diaper bag, get them in the car and as I drive into town call my mom, hoping that she's home so I can drop Livie off with her so I don't have to deal w/ a tantrum prone, curious, lively almost 3 year old while doing blood work and other medievil torture methods on my screaming 5 month old.
Did I mention I'm tired?
Wednesday, September 29, 2004 8:42 PM CDT
All has gone well. The trip up here was nice and easy. I didn't get much sleep last night but that's my own fault. I'm reading the Da Vinci code and have a tough time putting it down.
His EEG left a big goober on his head lol. Looks like someone spit a loogie on him. EWWW. ANyway won't have those results back for awhile cause the neurologist is off. She had to have emergency surgery. Hope all is well with her. She's a great person and doctor.
He had his blood drawn. Counts are within normal range. We are to have them done every Tuesday back home at the local hospital. We come back at the end of October for an MRI. We have to set up physical therapy for his left arm/hand.
Again the doctor was really impressed and pleased w/ Levi's growth and development and overall appearance.
Thanks for all the prayers. Keep them coming mamas!
Tuesday, September 28, 2004 2:45 PM CDT
Well almost ready to leave for Chicago. He has to have an EEG first thing in the morning so pray that whatever they want or don't want to see they do or don't. Suppose to be evaluated to see if he can stop taking the phenobarbitol for seizures. Also we're going to have to see about his left arm. He moves it around but does not reach for anything with it. He uses his right hand for everything. I've been in denial about it but it's been more and more obvious these past couple of weeks that he doesn't use it. Hopefully we don't stay any longer than planned either. Dh is off on unpaid family leave for today and tomorrow. I'll update ya'll when I can.
Sunday, September 26, 2004 9:43 PM CDT
Am I going to be like this everytime we have to go to Chicago? Since I came home from camping I've cried at least once a day. Usually as I'm giving him his drugs. I'm not as nervous about going up to Chicago this time but that's the only reason I can think of to be crying all of a sudden.
I finally got a chance to read through some old emails I received back while we were in Boston. I so wish I had time to respond (back then and now!) to them. So many heartfelt prayers and thoughts. I almost forgot how awful the time in Boston was. I sat and read my old updates and I think "was it really that bad?" Yes it was but thankfully I'm too busy with the "today" to think about the yesterdays we've already lived.
Have I mentioned I absolutely hate giving him these drugs? They make him gasp and choke and cry. And I cry right along with him. Here I am, his mommy, putting these awful, toxic drugs in his system with the hope that they'll make him a strong healthy man someday. How ironic is that? I was reading up on VP16/etoposide and one of the side effects is infertility so then I started crying that he might never have children! Well he's fussing now so ttyl.
Lisa if you're out there drop me an email!!
Friday, September 17, 2004 4:27 PM CDT
2nd message for today so you may want to check future entries. ANyway I would love for all of you to specifically pray that the cancer stays away forever and that he has no side effects from the drugs. Also please pray for my Aunt Cathy has she goes through radiation for the same things. No side effects and no cancer!!
Friday, September 17, 2004 4:14 PM CDT
We are still camping. It's been really good for all of us. Jason's getting free time to go fishing (man never stops to appreciate life). I'm actually getting a chance to bond w/ Levi and watch him grow. Livie loves being outdoors all day playing and meeting new people. She especially loves the huge sandbox directly behind our camper.
Levi is amazing. He's getting close to sitting on his own. He does really well with just a little support. He also is always jabbering. It's sooo cute. He's such a strong little man. We officially started his chemo drugs the other night and other than a bit of fussing he did great. Much better than mommy did! I was almost in tears by the time I got to the last dose. 5 different meds at night (not taking anything for nausea yet either) and 2 in the am. I was reading through the pamphlets for the zillionth time and it's just so ironic that every single one says "do not breastfeed while taking this drug." I'm betting they didn't mean the baby lol.
He's such a happy little dude. He loves everyone. He greets everyone with a smile.
I'm going nuts trying to keep up w/ the bills, insurance crap, charity forms, meds and just life in general. I'm very blessed to have such a wonderful mother who almost always drops whatever she's doing to ride along with me so I don't have to drag the kids out of the car at each and every stop. Today, for example, I had to go to the pharmacy (they ahem gave us the WRONG DRUG! Let's leave it at "oops" oh and no he didn't take it phew) to swap drugs, go to my doc's to get a fax the social worker from chicago faxed me and needed to go to the po. My mom happily met me at each place and sat w/ the kids while I ran in and did what I had to do.
I'm home right now and Levi's in his johnny jump up while Livie's outside "working on the car". I'm having a blast w/ this book crossing. Really curious as to how to add some of the neat things on my page like some others. They have a list of books they've read and what ones they wish to read, etc. Someday I might get a chance to figure it out!
Levi has received a couple of gorgeous blankets. One is a beautifully crocheted blanket and another is a block comforter. I love cuddling him up in these special blankets. I feel the prayers and work in them everytime. I know I owe pics to people that have sent things. Please bear with me I'm trying!!
On a "religious" sidenote. If you have no idea what to believe when it comes to God, if organized religions don't seem to "click" with your mind, check out Sylvia Browne. The way she explains things totally clicks w/ me, after 28 years of trying to figure God and religion out. Sure makes life alot easier.
Monday, September 13, 2004 6:24 PM CDT
Click here to see photos. Or copy and pa