History

Monday, September 17, 2007 10:05 PM CDT

Lily is home!

Realizing that I had failed to post anything about the current goings on, here is the readers digest version:

Lily's bladder is too large. The muscles that tell us when we have to pee, are not being told by Lily's body that her bladder is full.
Per our urologist, the only way to correct this is to cath her 5 times a day.
This is not pleasant for Lily.
This is very not pleasant for Lily.
There is a process called a Mitrofanoff Channel that allows you to cath the un-cathable.
Mitrofanoff - Appendix out, take the tubing that connected the appendix to your body, & create a channel from the bladder to the belly button. Cathing takes place there instead of the regular way.

So Lily was in the hospital today. We weren't really excited about it period, but after the first two opinions disagreed, we decided we would go with the tiebreaker, & that was to do the procedure. We also weren't excited about having her in the hospital for her birthday (09/18), but it was either that or we wait until the end of October. It was the best case scenario to get it done sooner rather than later.

I'm proud to say that Lily was quite the trooper. Even when it was time to get the gas, she got up & walked in there herself. The procedure went very well, & she recovered so quickly they actually let us choose whether or not to come home. And since we are working with Lily on making choices, we let her make the call. So here we are at home. She told us it hurts to walk, which for her to say anything hurts is something, but she'll sleep better in her own bed, & Tanya will too. It'll be a couple days of recovery, but she should be up & running in no time.

Thank you for all of you continued love & prayers.

Jason

Monday, September 11, 2006 11:37 AM CDT

Hello loved ones –

Apologies again for not updating in…. well, since shortly after Luke was born. And as you can see by the photos he’s hardly a new born anymore. Although you could make the case that instead of a baby my wife gave birth to a toddler. And now that we are here on the two year anniversary of Lily being diagnosed, it struck me as the time to pick up the pencil again (metaphorically speaking).

I do find it difficult to think about me me me (or rather us us us) here on the five year anniversary of the 9/11 attack. It is something that will be forever memorable to those who were of an age to understand the relevance of the situation. There are actually only two other events that stick out in my memory where I can remember where I was when it happened (things that would mean something to more than an inner circle of 70 or so family & friends). I remember being in the school library when the Challenger blew up. I remember being in my cubicle at work when the 9/11 attacks happened. And lastly, and certainly least, I remember where I was when O. J.’s white Bronco was on the run. Scratch that last one; I probably shouldn’t have admitted that. But back to the subject, if you are looking at this website, you aren’t looking for a 9/11 commentary of yet another person who has opinions without any facts to base them one. And since I have been lazy in writing Lily updates for almost six months, & I have opportunity now, it is time for an update.

Lily is absolutely beautiful. She has a smile that can light up a room, & eyes that sparkle (especially when treats are mentioned). She loves her baby brother, her pink blankey, & Dora….but not always in that order. She loves our neighbors, Mr. Rocky & Miss Marge, & loves running her make believe ice cream stand. She is always up for a tea party, & has just started recently to enjoy games, especially Candy Land, although she may not quite understand how to actually play it yet. She can actually tell me what every piece on the chess board is, even if she won’t let me take any of her pieces off the board. She turns three on the 18th of September, & therefore missed preschool for one more year. Tanya is taking her to a one hour class once a week through the Early Childhood Family Education course offered through the school district. She is very excited about going to school. She missed the preschool cut off by less than three weeks, but I’m glad it wasn’t an option. I don’t think I could have handled that!

She has been walking for a year now, and though she will still fall from time to time, she gets herself right back up. She’s been passing all of her test with flying colors, & everything looks good. The therapists & doctors all are pleased with her progress, & the original neurosurgeon has told us we don’t have to come back to see him anymore. In December we have the tests again, but after that it moves out to once a year instead of every six months.

In essence, things are great. We are very very thankful for the ways God has blessed us, & we are thankful for the good work he is doing in Lily & the strides we see her make everyday. It was (and continues to be) something that has drawn us closer to Him than I think we ever could have been.

Thank you for you continued prayers & love.

Jason, Tanya, Lily, & Luke

Tuesday, March 21, 2006 10:00 AM CST

Hello all –

Miss Lily became a big sister on March 9th when baby Luke came to join our family. He was born at 8:06 AM, weighing 9 pounds, 11 ounces, with a length of 21 inches. After all the months of talking about baby Luke coming to live with us, I’m pretty sure that Lily is convinced that his name is “Baby Luke” instead of just Luke.

When Lily was born it was 12 hours of labor from beginning to end. Forgetting that the second baby always comes quicker & bigger……. Tanya started having contractions around 3 a.m. She got up & took a shower, & tried to get comfortable. She called her parents to come over to watch Lily, & actually sat down & did a little work! She came back to bed, & managed to get her comfortable enough that she could sleep a little bit off & on until about 6 a.m. We finally got her stuff packed & got down to the hospital at 7:00. I dropped at the front door because she wanted to get a ride in a wheelchair up to Labor & Delivery, but since no one was around she just walked up by herself. The first nurse came in the check Tanya’s dilation, & decided she had to go get another nurse to verify something. When Lily was born, we went in & she was at a 2. 30 minutes later she was a 5, but Lily didn’t come for another 5 hours. The nurse walked back in & the last piece of their conversation was “….I think she is at a 9.” Sure enough, she was dilated to a 9, & we were rushed over to the Delivery rooms. We were over there long enough for the anesthesiologist to ask their questions, & start asking what kind of drugs she wanted, but not too much more. She had an IV put into her hand for fluids, but it wasn’t even taped down securely (which we found out later when it was on found on the floor……). Her water broke with a gush, the resident doctor came in, & as they were converting the bed the resident was standing there ready to catch him if he decided to pop out right then. When they did finally let her push, it was 4 pushes & he was out.

He’s a pretty calm baby, he even let us take a nap that afternoon! Lily has been slowly warming up to him, which is good. She’s even asked to hold him a couple times, & help give him his bottle. Never for too long of course, but a little bit longer each time. She is a good big sister, even with losing out on the attention, & the sleep deprivation (her room is right next to his).

All of her tests have come back well. It was kind of weird having Tanya at the hospital, but have it not because of Lily. It was kind of cool to be there for other circumstances. After a long enough time, you start to associate the hospital with the other stuff, & you forget that there are happy reasons to go.

We love you, & thank you for all of your prayers,
Jason, Tanya, Lily, & Luke

Tuesday, December 27, 2005 1:06 PM CST

Merry Christmas everyone!

I always have a hard time starting one of these updates….that’s probably why we don’t update as much as we once did. But I’ve been taught by many dear friends that boring is good, so Hallelujah I’m happy to give a boring report. Lily had her follow up scans last Friday (December 23rd). It was the last of her “every 3 months” follow up scans (CT & Bone Scan). I am very happy to report that she passed with flying colors. But not only did the tests go well, she did a very good job also. We woke her up at 6 AM so she could be injected for the bone scan at 6:45. And then we got to wait. The CT was first, to be followed by the bone scan, but they only wanted to sedate her once, so we had to wait until the bone scan room was available. There was a baby in there ahead of us & they had to wait until their scan started before starting ours (if that makes any sense). Unfortunately they had a hard time getting the IV in the baby, so bad they called in an ER nurse, who tried for half an hour before they called in an anesthesiologist, who took 45 minutes before they could get it in. After having been in that position a year ago, our heart was breaking for that baby & their parents. But they did get it in, so when it was time to go take pictures of Lily’s tummy, she stood up & said “OK”, & walked into the room. We were quite impressed to see that out of a two year old.

I pray you never have to go, but if you ever had to I would highly recommend Children’s Hospital in Minneapolis. They are so good with us & with Lily, you find yourself getting attached to them, & they to you. We’ve been blessed to work with Dr. Stephen Nelson, & his amazing nurse Sarah. He came to see Lily after the scans, & watching her walk around made his day. He said “Watching Lily Hoven walking around this clinic is the best Christmas present I ever could have asked for.” They have great Doctor’s, but Dr Nelson was just right for us!

After the scans, Lily was ready to get her Christmas on. We spent Friday night with my Mom, Step-dad, & siblings (I’ll add a picture to the site so you can see what her favorite present was), Saturday night with my Dad & sister, & then Christmas Day with Tanya’s family. Since they all live 90 minutes away, we stayed at Tanya’s folks for the weekend, & it was like a big 3-day sleepover. Good times.

We are still feeling extremely blessed by our new home. It was a long time coming (including 5 weeks of living with friends), but it came at God’s time, & it is even better than we hoped for. Other than being so far away from our families, we couldn’t ask for a better location. I have a round trip commute of 4 miles, so I get to enjoy having breakfast with my favorite girls every morning. Although that will soon be changing…….

Tanya is due in mid March, & the ultrasounds all point to a little boy. We haven’t decided on a middle name yet, but we know the first name will be Luke. I get teased quite a bit because people aren’t sure if it is after the man who wrote one of the Gospels, or the infamous Skywalker clan. I’d like to plead the 5th amendment. Tanya is feeling quite well, he is just growing quickly, & she is finding herself getting out of breath more often. She’d like to get some more exercise in, but its December & its Minnesota. It’s not like she can go out & walk around the block. She is a trooper & one of my heroes.

I fell like I’ve written a novel, so I’ll sign off, but I have to thank you all for your prayers, & reading the site. This experience will always be a part of us, & when Lily is old enough to understand, she will thank you as well. Please continue to pray for those who are still fighting the fight, GOD still does miracles.

Love,
Jason, Tanya, Lily, & Luke

Thursday, November 3, 2005 3:40 PM CST

Hello loved ones –

I wanted to drop a quick note & let everyone Lily is doing very well. Every test has come back great, & she is making terrific progress in her walking. She now spends the majority of her time walking as opposed to crawling. Her right leg is doing terrific, & she plants it solidly on every step. Surprisingly her left ankle is still a little weak, so we are working on strengthening that. It’s surprising because the left leg was the first leg she moved, & has consistently been the stronger leg. But at the same time we have no doubts that it is on its way!

It’s been kind of weird for us as a family these last few weeks as we have been ‘homeless’. We sold our townhouse on October 4th, which was a blessing. We sold it right before the market started its winter cool down. The problem was that we didn’t have a house to move into to. Without getting into too many details, the sellers just decided they didn’t want to sell after all. Praise the Lord that He always has a better plan than what we can imagine. Our new place is in a better neighborhood (not that the other one was bad), is on a circle instead of a through street, & the major things are significantly newer (roof, furnace, AC). The neighborhood itself has a very 1950’s feel to it where everyone knows each other; we even already know two families in the neighborhood go to our church, & there is another two families who also go to our church that we have not meet yet, but know the people we know. We’ve been tremendously blessed by friends who have let the three of us live with them, so we did not have to rent a hotel for the whole time. Huge blessings!!!

Tanya is doing very well, pregnancy agreed with her for Lily (at least in my eyes), & it is agreeing with her again. She is due in March, & we get the ultrasound on the 9th of November. We want to find out whether it is a boy or a girl, just so we can decide on a name! In the meantime, a former co-worker of mine has dubbed the baby “H2”. Good times.

We hope all is well with you, please continue to pray for those who are fighting the good fight, & for those who provide the care. It takes a better person than I to work in these clinics, so say a little prayer for them too.

Love,
Jason

Thursday, September 8, 2005 7:39 AM CDT

I can't believe it's been a whole year since Lily was diagnosed with Neuroblastoma and had her first surgery. We had a fairly quiet Labor Day weekend this year and my thoughts kept going back to what happened last year. It's so amazing to me how far God has brought us. Today, last year, Lily got her back brace and she still wasn't moving her legs (she moved on Thursday). I remember how frustrating it was to have the doctors come in at least once a day if not more to see if they could get any kind of movement. I always knew that God could heal Lily, but I was starting to have doubts if it would actually happen. To be honest, the cancer never bothered me, it was always her legs. Early that Thursday morning, I was praying that God would send a sign to me that she would be fine. An hour or so later, the doctor got movement out of one of her legs! From then on, I knew that everything was going to be okay.

I still can't believe my little daughter has gone through four surgeries (two major ones) and four rounds of chemo. It's just not something you ever think is going to happen to your child. The best part is that she looks so good now, you would never even know that she went through any of that. Her scars are so light, her hair is getting so long, and she's starting to walk!!! Yes... you heard me right, she's starting to walk! Every day, it seems like, she is taking more and more steps on her own. She hates to crawl anymore and will walk along the wall, couch, or whatever is there to get from one place to another. Yesterday, with the physical therapist, she took 11 steps on her own!!!! We were so excited! The hardest part is, you can't be too excited around her, because then she stops doing it! It's crazy, but that's what we've figured out.

In other exciting news, we are expecting a sequel in March. We're all so excited to expand our family!! Also, we have sold our townhome and are moving into a single family home at the end of September! We've had a few roadblocks with the house we're buying, but we're believing that everything will all work out. We're excited to move into a bigger house with a real backyard!

I just wanted to thank again all of you who have been praying for us all along the journey. Especially our family who has supported us so well and our friends, some of whom took their Labor Day last year to sit with us while Lily had her surgery. We'll never forget the laughter and joy we experienced in that room!

Love,
Tanya

Wednesday, August 10, 2005 9:20 PM CDT

Hello loved ones –

I’m sorry for the long delay in posting; we’ve been just enjoying life. No news is good news, so I can emphatically share that there has been little news. The scans have all been good; Lily has been about as cheerful as she has ever been. This is quite a contrast from last summer when things were growing inside of her. We’ll cut her some slack for not being really pleasant to be around. The good news of the day was that Lily successfully took two steps today between Mom & Dad, & then repeated it two more times for good measure. So she has officially walked on her own. Praise the Lord! We have to figure out a different way to encourage her though….. Every time we cheer she thinks it is because she fell without getting hurt. So she tries again & just goes straight to the falling. Ahhhhh. Good times.

Mom & Dad have been busy too. Dad took a new job in the middle of June, leaving Wells Fargo after seven awesome years to take a job in the accounting department at our church, Living Word Christian Center. He loves the atmosphere & the job. We have also put our townhouse on the market, so getting ready for showings with limited notice has been kind of hectic as well. We have had some interest, but we are believing for the right buyers at the right time, who will be blessed by this home the way we have. We are also holding off on making any offers until our house is sold, so we are believing God for the right house. Since our house has not sold yet, it just means that our house isn’t on the market yet, or it isn’t the right price.

We are also getting ready for a weeks vacation with Jason’s family. It will be fun, especially since we don’t get to spend as much time with them as we like.

We thank the Lord for all of your love & support.

Love,
Jason, Tanya, & Lily

Wednesday, June 8, 2005 6:06 PM CDT

**Update**

Today (Thursday, June 9) we went to see the neurosurgeon. He was absolutely astounded to see Lily walking with her daddy. He said "She's not supposed to be doing that!" I told him she most definitely was!! The greatest part to me (mom) was that he finally admitted to us that he thought she would never walk. We had always thought that was what he was thinking, but thankfully, he never voiced the words to us! We're really glad he has been proven wrong!! He even said that he thought she would be walking independently "soon"! I agree!!

He told us that he would be very excited if she was potty-trained by 5, but I have a good feeling he will be proven wrong again as you can see by Jason's update below! (I think his ego can handle it!)

The other cool part of our visit with the doctor was when he showed us her MRI. The spinal cord has grown back to be almost exactly the way it should be. He said it would take a really, really good radiologist to be able to look at it and say she ever had surgery, much less anything wrong with it. We are so blessed to serve a loving God who has completely healed Lily. Thank you again for all your prayers and support.

Hello all –

Sorry for the long delay between updates, it’s been a combination of losing internet access for a while, & nothing too much to report. Lily has been acting more & more like a regular kid every day. She is walking very regularly around furniture, & is now able to stand & balance on her own for a few seconds at a time. She is very inquisitive, & has a motor that will wear mom down during the day, & then eat me (dad) up at night.

She has now made it through two days of scans this week; one day was her quarterly CT Scan/Bone Scan, which looked good by all of the early indications. And then today was an MRI for the Neurosurgeon who operated on her back in September. We’ll see him tomorrow. Tanya’s mom has been up the last few days to help so I did not have to take work off, & that has been a huge blessing.

I am also proud to report that we are down to three cathings a day, & she has not had any sign of bladder infection in almost two months. Praise the Lord!!!! We are also trying to teach her how to tell us when she has to go to the bathroom. She has a potty seat with Elmo on it, so when she points at her diaper & says “Elmo”, we know what she is trying to say. She is still a ways from being even remotely potty trained, but it is fun to have something to celebrate. Thank you for your continued prayer & support, we love you all, & thank GOD for you.

Jason

Monday, April 11, 2005 8:43 PM CDT

Today we feel like another chapter in our journey has closed. Lily got her port out today!!!! Yeah! Seven months ago (almost to the day), it didn’t feel like this day would ever arrive. You would think with the number of times that we’ve had to go in like this, she’d have figured it out by now, but thankfully, this morning, she thought it was just another quiet day and Daddy was home! We were continually amazed with how happy she was considering she hadn’t eaten anything since last night and only had juice this morning until 8:45.

The surgeons were ahead of schedule today (wonders of wonders!) and so were able to get Lily in about 45 minutes early. It was nice not to have to entertain her for another 45 minutes!! Everything went smoothly and they finished up on time. We were in the cafeteria eating lunch when they paged us, so she was wide awake and screaming by the time we got up to short stay!! We instantly knew where she was, at least! Since most of the time lately that she’s been sedated, it’s been either major surgery or for a CT Scan, it was weird having her wake up so crabby. Usually, she wakes up really fast and is loopy but fairly happy right away. This time, it took about 15 minutes (and many rides in the Little Tykes car) for her to calm down. It’s always hard when your kid is crying, but it’s especially difficult when you know they’re probably in some pain and there’s nothing you can do about it.

The surgeons gave us the port afterwards (imagine that, Jason wanted it!!). It’s currently on his key chain but at least he has a good reason for it. He says it will serve as a reminder of God’s faithfulness in that she no longer needs it. We serve a very good God!!

Monday, March 14, 2005 7:54 PM CST

Hi everyone –

Lily had her first of four CT Scans today, & we are very happy to report that everything looked great! She was quite the trooper today, she was fighting a cold & had to be without food or drink from 7:30 AM to 11:00 AM. And everyone still thought she was adorable. The Doctors were very happy to see her progress in walking, & her growth. She is now 32 inches long & 26 pounds. She is certainly making up for lost time!!!!!

We love you guys. Thank you for all of your love & support!

Sunday, March 6, 2005 8:12 PM CST

**Update 3/7/05** Please pray for my sister, Rose, who was in a car accident today. Her middle finger was "stripped" and they transported her from Winona to St. Mary's in Rochester for surgery. I will update when I learn more. Thanks!

Hello loved ones!

Things are going very well here. Lily is spending most of her days getting up & down on everything. Her new thing is to crawl to the side of the couch, stand up & look over the edge at you & say “Boo boo” (Peek-a-boo). She actually took two steps last night while only holding one hand instead of two. Her HMA & VMA #’s came back yesterday, & they both looked very good. One was 13 & the other was 19, so they were both down 20r more. Praise the Lord for the miraculous healing.

Her body is still trying to figure out how to pee & poop, she is on a laxative to get things moving, & now she is also on a medicine to help relax the muscles around her bladder. Sadly there is a potential side effect……constipation! So luckily we have just the thing on hand to take care of that! Praise the Lord the day is coming where we won’t need laxatives, or catheters, or ankle braces….

Thank you for all of your love & support, we thank the Lord for all of you!

Sunday, February 20, 2005 5:30 PM CST

Hello all!!!

I know we’ve been pretty lazy with updates lately, so I apologize for that. Lily has been doing well, finally getting over a cold that she seemed to have for three weeks. We know she must be feeling better because her spirits have been greatly improved.

Now for the updates…. Miss Lily is standing quite a bit now, good enough that we caught her climbing into her toy chest 3 times yesterday! We are getting to enjoy (if that is the right word) her becoming more active. From standing in her crib when she wants to get up….to just about making dad faint by trying to stand up while sitting on the stairs. She can do it, but she throws her momentum forward so hard that when she does get to standing, we don’t know that she’ll be able to stop before taking a header. :)

She is scheduled to visit the Urologists on Wednesday so they can “check out the plumbing”, Grandma & Grandpa Davis will be coming up, which is always a treat. These are tests that they had talked about Lily getting way back in September when they thought it was only a bladder infection. It seems like forever ago but it also seems like the blink of an eye…….

Gotta run, someone is ready to get up from their nap. Love you all!!!!

Saturday, January 29, 2005 10:32 AM CST

Hey everyone –

We dropped off Lily’s urine sample on Monday, & got the test results back on Friday. Everything is normal, Praise the Lord!!! The HMA is 24.1 (the upper range is 32.7) & the VMA is 18.5 (the upper range is 20.9), so everything still is very good. I’d love to say 1 month down, 11 to go, but that makes me feel like we’re bound, that we can’t feel truly free until the 12th month. But if we give in to that thinking now, after the 12th month it will be waiting for the 6 month checkups…..then the yearly check ups….then every other year check ups….it just isn’t healthy for us to live that way. We feel free now, & the joy that comes with that freedom is awesome. OK, I’ll stop being philosophical now…..

Two more good updates: First, Lily’s bodily functions have come a long way since the last update. The amount of pee we have been cathing out of her is decreasing as the wetness of her diapers is increasing (brilliant observation, huh?). After her x-ray almost two weeks ago, we have made ourselves be more disciplined with giving her the daily laxative, & we can see the effect it is having on her peeing. Of course, it means that most days we are changing 6 to 8 poopie diapers, but we’ll take the peeing. The day is coming where she will need no more laxatives & no more catheters. The Lord is good.

Second update: She is moving all over the place. She is mostly crawling on all fours now, & if she finds something low to put most of her weight on, she can use her legs to stand the rest of herself up. Not standing on her own yet, but anyone could see that it is only a matter of ‘when’, not if. The progress in her right hip the last two weeks has been nothing short of miraculous, & we can see a positive change in her demeanor as well. She has been super happy the last 4 or 5 days, & I at least think it helps that she can start to do some of these things that she sees the other kids do.

Thank you for all of your love, support, & prayers. Please continue to pray that we have the strength, grace, & faith to walk out this journey with joy, & for all those who have not yet seen the manifestation of God’s promises but believe still.

Sunday, January 16, 2005 4:38 PM CST

Hey Everybody-

I'm sorry the journal entries have not been as frequent lately. We used to think that taking care of a baby receiving chemo was really tiring, and it was. But a normal one year old feels like a whole new level of tired. :)

Lily has had a good week. We took her in on Tuesday just for being fussy in general, but the Doctors couldn't find anything. They did an x-ray & found out she was just really really constipated. I can't imagine I would have been doing much better. We increased her dose of laxative, & she has been doing much better since. She has been very active crawling around (on all fours instead of army crawling), & she can crawl from the floor to her little bench to the couch with only minimal help. She is even working on climbing up steps with the proper "motivation". Mmmmmm.... Chocolate chips......

We love you all, thank you for your continued love & support.

Tuesday, January 4, 2005 7:52 PM CST

Hello loved ones! It’s been quite busy the last few days around here, so it has been hard to make the time to sit down & write. We were blessed by Grandpa Bob & Grandma Eunice offering to take Lily on New Years Eve so we could go hang out with friends for the evening. We love Lily, but it is nice to get out & be Jason & Tanya for a while instead of Lily’s parents.

Saturday was quite the day…. We headed to Savage to spend the day with some friends hanging out & playing games. We had a lot of fun, & Lily played well with the other kids. She was the second youngest there, but she held her own. (Dad is grinning from ear to ear!). It had been raining when we arrived in Savage, but it waited a little while before turning into sleet & then sheer ice. The roads were pretty poor, thankfully every one made it home safe. We made it home, but it was a little more eventful than we would have liked.

Everyone was doing a good job of driving safely, not a whole lot of maniacs out there thankfully. We were driving along a divided four lane highway (Hwy 169) heading home to Brooklyn Center, normally a 45 minute drive from Savage. With the icy roads we didn’t break 30 mph. Everyone else seemed more confident in their cars/driving abilities, so we were in the slow lane, taking our time. To make a long story short, our back end slid out, causing us to cross the lane next to us, & smash the front left end of our car against the guard rail. Icy night, spinning a 360, & nobody hits us, nobody has a scratch on them. The car was looking not so hot, but it is just a car. The cops arrived very quickly & called a tow truck for us….so we got a special ride home, & Lily got to ride home in Mom’s lap! The LORD is good. Jason had a cousin & their family roll their van a few weeks ago, & everyone walked away. Sometimes it doesn’t get any better than that……

Sometimes it does. We got ‘the call’ today about Lily’s HMA/VMA results. This was the test they retook last week because the results were not consistent with everything else. The HMA came back at 25 (a ‘normal’ score is between 0 & 32), & the VMA at 15 (‘normal’ is 0 to 25). What the means is ‘officially’ NO MORE CHEMO!!!!!!!!!!!!!!!!! I’m kind of at a loss for words with this. This is definitely one of those milestone moments we’ve been believing for, but when you know the outcome, it is more confirmation than anything else. GOD is good. GOD is very good.

What next? Well, the normal protocol is to run the HMA/VMA test every month for the next 12 months, & a CT scan or MRI every 3 months for the next year. Better than another 4 sessions of Chemo. Way way better.

Thursday, December 30, 2004 12:05 AM CST

Belated Merry Christmas and a Happy New Year! Sorry I haven't put out an update lately. The last two weeks have been pretty busy.

We went to my (Tanya's) parents the Thursday before Christmas and stayed until Sunday. Jason and I got to go out on a real date!! We haven't done that for awhile. We've gone out without Lily, but it's been to do stuff with friends. It was nice to reconnect again and just hang out with my best friend!!

On Christmas Eve, we went to my father-in-law's and had a great time with him and Jason's sister, Jess, and her family. Lily had such a good time playing with her cousin Mayme!! Mayme is getting a new sister in March, so it was good for her to learn what it's like to have an active one-year-old destroying everything she tried to do!! : )

On Christmas Day, we went to Winona to visit my sister's apartment. She moved there in June, and we had not been to see it yet (shame on us!). It was fun spending that much time with my family.

On Sunday, we went to Red Wing to celebrate Christmas with Jason's grandma and all the family at his cousin Chris'. We only see them once a year or so, so it was so great to spend time with them. They live in a gorgeous old house that's actually big enough to hold all of us!

Lily has started crawling (for real). She has always done the army crawl, but now is up on her hands and knees crawling!! This is a huge step for her as it shows how well her hips are moving. She continues to get into absolutely everything!! For those of you who think that we skipped out on that part because she's not walking yet, never fear! She gets around and can get just about anywhere she wants to! She is so much fun, though and we wouldn't trade her for anything. She talks a lot, if only we could figure out what she's saying!!

As of today, we still do not have the "official" word back from the HVA/VMA test that they took on Tuesday. However, the doctors are so optimistic that she won't have more chemo, that they are already talking about taking out her port. That may be scheduled in the next couple of weeks. We should find out early next week!

God bless your day!

Sunday, December 19, 2004 8:33 PM CST

The Lord is good! It’s 8:00 PM Sunday night & Lily just went down for the night. I’m kind of surprised she didn’t go down earlier with everything that has been going on in the last week. Even after all of the tests, the weekend was crazy too. Yesterday we all traveled down to see Jason’s side of the family & celebrate Christmas. It was the first time we had made the trip south to see any of our family since before any of this happened. They however have made many, many trips, and we feel so blessed. Today we were able to all go to church as a family for the first time since August. It was weird to put Lily in the nursery...it almost felt like we were on a date! It’s good to have everyone home, & know that tomorrow will be ‘just’ Monday.

And then there were the tests... :)

The surgeons were confident that they got the entire tumor out on Monday. The MRI on Friday confirmed that there is no ‘mass’ remaining. The only thing left to do is the HMA/VMA test they perform on her urine. The doctors told us that there would be no more chemotherapy if both tests came back at 10% of their original levels. They ran this test the day after surgery, & they told us they needed to come back at 18 or less. One came back at 24, the other at 16. This struck them as odd because everything else they have done tells them they should both be lower. Thankfully they are of the opinion that if everything points you one way, & only one thing tells you differently, then you need to re-do the one test, not ALL tests. And better yet, they want to wait until the week after Christmas to re-run the test. So in essence, we get a small vacation! No trips to the clinic until the 28th! Hallelujah! We love the people at the clinic, and so does Lily (she was giving out kisses to the Doctors on Friday), but if we never had to go back I think everyone would be happy

The really strange part is that we are very happy, but we aren’t bouncing off the walls giddy. I kind of thought we would be, but we really haven’t been. I think a lot of it is that all of these good reports are what we have been ‘expecting’. We’ve been envisioning the day where they say your baby is completely cancer free. We’ve been picturing her standing & walking on her own. We’ve been focusing on the positive scenarios so much more than the negatives, it’s almost anti-climactic. It’s really hard to put into words how we feel, other than very, very thankful. And numb. :)

GOD Bless you, you have no idea how much you all mean to us!!!!

Thursday, December 16, 2004 3:09 PM CST

I can't believe it, but we are all home right now!! It's only temporary, but Lily's doing so well, the doctors decided we could come home on a "pass." It feels so great!!

Sorry I haven't updated since Monday! A lot has happened, but it's all been good. Lily ended up pulling out her NG tube on Tuesday morning around 6 a.m., so that was an exciting start to our day!! All I could think of was that they were going to have to put it back in!! I didn't think I could help them hold her down for that. The doctors were going to take it out that morning anyways, so they didn't have to put it back in, thank the Lord!! About 4:30 Tuesday afternoon, they let her have one ounce of clear liquids every two hours. One ounce is not very much, and she sucked it down really quickly!! She was able to keep it down, so Wednesday morning, was allowed to start eating "regular" foods as tolerated. She is now eating normally, if not a little bit better than she was before.

Every day, we have seen marked improvements in Lily. Tuesday was pretty much spent with her sitting on my lap and sleeping. Wednesday she started to perk up more and then today she seems pretty much normal!! She hasn't had any pain medication since yesterday evening, which is nothing short of a miracle!!

The doctors feel like they got almost all the tumor. There is a tiny piece that they left in there, because it was too far into the spinal column. We are waiting for the HMA/VMA urine test to come back and the MRI to be done tomorrow and then we will find out what comes next. The doctors are very optimistic right now that we won't have any more chemo. Yeah!!!!! It feels so good that this will be the last time we stay overnight in the hospital!!!

Tonight, Lily and I have to go back to the hospital to stay over night and we will be there until her MRI at 2 pm tomorrow. Then we get to go home!!!

Thank you for all your prayers this week! They are all so appreciated!! We love you all!

Monday, December 13, 2004 6:33 PM CST

**Check out the new pictures!**

Sorry to write this so late, but today has been some what of a crazy day. Lily went in for surgery at 9:50 (almost 1/2 hour before she was scheduled!). It was kind of hard to sit and wait, but I am definitely learning about patience!! At 1:30, the surgeon came out and let us know that the surgery went well. He feels like he removed all of the tumor. Praise God!! It took awhile, because they had to be careful and work around the nerves. The incision is not as long as I expected. It's about 3 inches long. The tumor was (boy, it feels good to say "was") on the right side of her spine, kind of behind her kidneys. The surgeon said it was about 3 inches by 1 inch. Certainly not the largest tumor I've ever heard of, but still big when you consider Lily's body size!

Lily does have a gastric-nasal tube (not sure if I'm spelling that right) that takes away the juices that her stomach produces. Because this was an abdominal surgery, the intestines take a little while to get back up and working. They, obviously, don't want her throwing up, so they do this to take away the nausea. It looks a little scary, as she hasn't had this before, but I'm impressed that she hasn't tried to pull at it yet. The tube will probably come out tomorrow. It will depend on how her stomach recovers.

Right now, Lily is still pretty much out of it. She sat on my lap for about 1/2 hour, and then the morphine kicked in and she started to go to sleep. As you can imagine, any movement pretty much irritated her! It was fun to hold her and I think she really liked it.

Probably the hardest part of today was knowing how healthy she was and then she's being put back a little. Yesterday, when I went to lay her down for a nap, she started crying. It sounded a little funny, so I looked through the little window from the kitchen and here she was kneeling in her crib!!! She has never done that before! It was hard knowing that today she would go in and have this surgery and it will take her a little while to recover. God was faithful, though, and was with us throughout the entire day. As last time, I just felt a peace that is absolutely undescribable. I know that He has her in His hands and that He loves her even more than I do!

God bless you all! We love you!

Thursday, December 9, 2004 8:28 PM CST

**Update** Lily's surgery is scheduled for Monday, December 13, at 10:15 a.m.

Great news! The back brace is off!!!! We walked in, the Neurosurgeon took one look & said “OK, she can take the brace off.” It was almost anti-climactic, but we are still very excited. The Doctor was very pleased with her progress, calling it “Miraculous” at one point.

We also got very good news about the tumor itself. It has shrunk to a third of its’ original size, which means this Monday Lily will be going in for surgery to remove what is left. More surgery wasn’t our first choice, but we are very thankful nonetheless. After the surgery, we won’t know what the next step is until they have had a chance to examine it. (Jason is hoping they will give him a small piece of it, so he can go run it over with the car or something like that...It must be a guy thing)

Lily has been in good spirits throughout this week, often better than we have been. I often think back to the day she was born, and the nurse brought her in around 4 am to eat. She remarked, in a complimentary fashion, “This one has spirit.” We both cringed, unsure if that was a blessing or not. We now know just how much of a blessing it is.

Thank you for all of your continued prayers and support. We love you all.

Wednesday, December 8, 2004 7:57 AM CST

Two days of test down, three to go. Even though it means another day of tests, the schedule got changed to a better one. We now need to go in Friday for a test that was supposed to have been done today.

Basically, we still don't know anything yet. The CT Scan and Bone Scan were done on Monday, and the only results we know from those are that it has not gotten to her bones. The radiologist is still looking at her CT Scan. The neurologist wanted 3-D reconstruction of her spine, so that takes a bit longer. We do know from the CT Scan that the tumor has shrunk, but we don't know how much. Praise the Lord for the good reports we have received!! Thank you for all your prayers!

Monday, November 29, 2004 8:24 PM CST

I hope you all had a great Thanksgiving! Lily was feeling well enough to go down to Pine Island to visit my (Tanya's) family. It was so nice to see the whole family. We really feel like we have a lot to be thankful for this year! God has been super duper good to us!! : )

We are now seven days away from beginning the barrage of tests all over again. These tests tell the doctors what to do next. There are seven tests in all, including a MRI and CT Scan, and they are spread out over four days. This time will be really different as she is not in the hospital and we get to drive down to Children's Monday thru Thursday. Don't get me wrong, I'm so thankful that Lily is healthy enough to do the tests, I just wish they could have compressed the schedule a little. Some of the tests require sedation, so there are limits on when she can eat and drink. I'm not sure how I'm going to convince a one-year-old that she doesn't need to eat for 8 hours or drink anything for 3 hours!! Grace!

We appreciate all of you that have been praying for us. We'd like to call on you again for this upcoming week as we know this skirmish isn't finished yet. We are believing tht the test results will come back so miraculously good that not only will she not need any more chemo but she won't even need surgery (this is what the doctors are telling us). No tumor, no cells, no lesions, no nothing. We believe that our visit with the neurosurgeon will result in Lily no longer wearing the back brace. We believe that our God, who supplies all our needs, will supply us with abundant grace, patience and understanding to finish the race that is set before us.

Tuesday, November 23, 2004 3:24 PM CST

For not having anything "to do" yesterday, we sure had an interesting day!! I ended up bringing Lily into the clinic because I was pretty sure she had an urinary tract infection. We found out that she also had an ear infection and a yeast infection!! As of right now, they haven't gotten the official results from the urine test so she's not on a special antibiotic for that, but she is on a double dose of what she normally gets. We are also having to "cath" her once a day to make sure that all the urine is out of her bladder.

Then, as if our day wasn't interesting enough, last night, Lily cracked her head on the dining room table and got a large goose egg! For a normal kid, it wouldn't be that big of a deal, but because she's undergoing chemo, we had to call the doctor. It ended up to be not a big deal, because her platelet count is up high enough, but it was enough!!

Today, Lily has been quite crabby. In fact, she screamed all the time through Physical Therapy, which she has never done! That's always lovely! She is also cutting teeth, which never adds anything positive to the mix!!

Thank you all for your daily thoughts and prayers they are so much appreciated! We love you all!!

Friday, November 12, 2004 9:54 AM CST

**Check out the new pictures!**

We are almost down with Lily's chemo!! We are so excited! We are at the clinic right now waiting for the nurse to put in the chemo and then in two hours we will be done! On Labor Day, I wouldn't have thought that this day would come, but now it has!

This outpatient thing has been really nice! It's nice to be able to go home and sleep at night in my own bed! Plus, Lily sleeps a lot better!! Yesterday, we got home around 1pm so she was able to get a nap in, which was so nice.

Lily continues to do really well. I kind of can tell a difference in her when we go through treatment, but it's hard to tell if it's because of the treatment itself or because her schedule is all messed up. It's probably both.

The next step will be to do the scans all over again. Those should be started the first couple of days of December. It's nice that they will be done between the holidays!

Monday, November 8, 2004 8:06 PM CST

Today we had the home health nurse come out to get Lily's blood counts. Wow, was that so much better than going to the clinic!! It really saved us a lot of time and frustration. Her blood counts are still pretty low, but thankfully, they are high enough (by two points) to still do chemo Wednesday, Thursday, Friday.

We are doing chemo this week outpatient which is very exciting for us and a little scary! Grandma and Grandpa Davis will be coming up to spend a couple of days and the extra hands are always a blessing. We will have to bring home an IV pump with saline solution running all the time. I'm a little nervous about the pump, but I'm sure everything will go just fine. Besides, after the amount of sleep we got in the hospital last time, this is going to go so much better, no matter what!

We are so excited that this is the fourth and final chemo session! After this session, we wait for Lily's counts to come back and the doctors will do all 8 scans again. Then they will decide what the next course of action is. We are believing that the scans will come back with zero findings.

Lily is doing so well. She is so happy and sociable that most people have no idea she's receiving chemotherapy. It's such a blessing to us that she's not whining and complaining! :)

Wednesday, November 3, 2004 7:51 AM CST

Yesterday, we went to the clinic for Lily's weekly blood counts. They are down to 196, which is really low. Thankfully, all indications show that they are on their way back up. We have to be careful about whether or not she gets a fever. We were basically told that if she develops a fever above 100.5 to expect to come in and pack our bags. It sounds scary, but she hasn't run a fever since the week after she had surgery, so we're believing she won't get one.

We also had a physical therapist and occupational therapist come out from the school district. Because she has a medical diagnosis, we are pretty much guaranteed that we can get some additional (free) therapy from them. That will be nice, as I have been told that if she was an adult in the hospital with this kind of injury, she would be getting aggressive therapy twice a day. Her regular therapy continues to go really well. She is gaining strength to stand. Her left leg/hip is really mobile and she sticks her foot in her mouth! Her right leg, and especially her hip, is a little farther behind but is definitely making improvements.

Thank you again for all your prayers. Please keep praying as the battle is not completely won yet.

Wednesday, October 27, 2004 8:41 PM CDT

Early in the morning, as he was on his way back to the city, he was hungry. Seeing a fig tree by the road, he went up to it but found nothing on it except leaves. Then he said to it, "May you never bear fruit again!" Immediately the tree withered. When the disciples saw this, they were amazed. "How did the fig tree wither so quickly?" they asked. Jesus replied, "I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done. If you believe, you will receive whatever you ask for in prayer." Matthew 21:18-22

We have really been standing on this verse lately. Jason read it a week ago or so and we have been speaking to the tumor in Lily that it is cursed and that it must wither.

Today, we saw manifestation of that curse!! We went to the clinic today to get Lily's blood counts. They also gave us the results of this test they do every time that shows how much of a certain enzyme the tumor is producing. It's been going steadily down each time, which is to be expected. Well...that graph just took a nose-dive and is almost at nothing!! So, that tumor is cursed and is no longer bearing fruit!! God is so good!!!

Lily is continuing to tolerate the chemo treatments well. She burps a lot, which the nurses told us can be a sign of nausea (I know, it's kind of weird). But she never seems to be uncomfortable. Even when she spits up, she's happy before and happy after. Other than her hair falling out (much slower now), I don't think anyone would have a clue that she is undergoing chemo. She is a light to all she meets.

Thursday, October 21, 2004 7:28 PM CDT

Lily had her second chemo treatment today and tolerated it very well. Yesterday, she tolerated it so well that she decided that she didn't need to take a nap nor did she need to fall asleep until the end of the Yankees-Red Sox game. (Seriously, she literally did not fall asleep until the last out!!) So at 11 p.m. she "crawled" into bed with me and we slept for awhile. Since the chemo they gave her yesterday can irritate the bladder and given her history, they wanted to cath her every two hours for 24 hours after her chemo. So at midnight and 2 a.m., our wonderful nurse came in to get vitals and to cath her. Thankfully, at 2 a.m., Lily slept right through everything, including the blood pressure machine and me moving her into her crib.

As uncomfortable as it was for awhile to have her sleep beside me, I realized how grateful I was to have that moment. She used to sleep with me after her morning feeding when she was little and hasn't done it in awhile. I really missed it and it was nice to have her cuddle like that.

Today we spoke with the pediatric surgeons. They are different than the ones who operated on her before and so they wanted to do some preliminary work on her planned surgery. This surgery is to take out the remaining part of the tumor after the chemo is done and is somewhat extensive. What that means exactly, I don't know and neither do they really. They hadn't had a chance to look at her original MRIs and will really wait until her next set of tests and scans are done to decide what exactly they're going to do.

We also spoke with the urologist today and he told us we no longer have to cath Lily!! Hallelujah!! We will still have to bring her in for some tests in a couple of months, but they're not a big deal. The Lord is so good!!

"Cast your burdens on the Lord and he will sustain you. He will not suffer the righteous to be moved." Psalm 55:22

A huge thank you goes out to all of you who God has used to sustain us.

Monday, October 18, 2004 2:32 PM CDT

Today, we had a busy day!! We had a Physical Therapy appointment and then went to Children's to get an x-ray of Lily's spine. That didn't go as quickly as planned, so we got a little behind in our schedule! :) It just took them forever to get us in. Then we went up to the clinic to get her blood counts (which are good enough to get this chemo treatment and that's all that matters at this point!). Then we went to the neurosurgeon's office where they evaluated her x-rays. Since they didn't have her post-op x-rays to compare them to, there wasn't a whole lot of information we were given. Basically, her spine is healing up nicely and they are very pleased with her movements. They were able to get Lily's legs to reflex which is a first! (Hopefully, that makes sense!) Unfortunately, the brace stays on for another 6 weeks! I'm a little disappointed, but I know it will all be good in God's timing.

I think Lily has gotten so used to going places that now she has a hard time just staying home!!

Tomorrow, we have a relatively quiet day and then Wednesday we go back in for chemo. We will be able to leave Friday some time, though and that will be a huge blessing. I also got our doctor to agree to not put in the Foley catheter (the one that stays in) and to only "straight cath" Lily every couple of hours or once a day. One of the chemotherapies can be an irritant of the bladder and since she has had a history of not emptying her bladder completely, we need to make sure that it does get empty. By doing the "straight cath", we hope that the bladder won't get lazy again since we are making such progress right now.

Tuesday, October 12, 2004 1:49 PM CDT

Yesterday, we went to physical therapy and then to the clinic to get Lily's blood counts. For the first time, her blood counts were quite low. Not low enough to be hospitalized, but low nonetheless. It's hard not to become paranoid and isolate your child, yet I have to remember to be smart about where I bring her.

I have a specific prayer request. Next Monday, we are going back to the neurosurgeons and getting an x-ray done of her spine. Please stand in agreement with us that Lily's spine has healed up completely and that we can start weaning her from the back brace now instead of in 6 more weeks.

Lily's reached that point where she wants to be moving and grooving. Unfortunately, her legs haven't quite gotten the message yet, so she's become a little frustrated. I just know that once she does start walking, she will not stop!! I'm trying my best to enjoy where we're at as long as possible.

"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, wait patiently, for it will surely take place. It will not be delayed." Habakkuk 2:3 (NLT)

Tuesday, October 5, 2004 12:02 AM CDT

Yesterday, we went in to the clinic to get Lily's blood counts and found out they were really good which is a huge blessing!! She is quite the little star there and it's so fun to see people react to her. The doctor was so excited to see her move her legs more than she did last week. She is continuing to improve every day.

Lily just started to do "So Big" yesterday and it is so cute! I have tried to get her to do it before, but something just clicked yesterday. She's so much fun and it seems like every day there's something new happening.

Thank you again for all your prayers.

Tuesday, September 28, 2004 2:12 PM CDT

Praise God!!!!! We just found out that we will be able to go home tonight!! Whoo hoo!!! We were originally supposed to stay over night, but everything is going so well that they said we can go home today. Yeah!!

All of the doctors are so pleased with Lily's progress. We are so thankful that they are seeing the physical manifestation of what we have seen in the spiritual. It's amazing how the little miracles all add up to bigger miracles. Eight or nine days ago she began whimpering when we would have to cath her. Then we started to see dramatic drop offs in the volume of urine. We called the Urologists, & they instructed us to reduce the frequency of her cath's. Then we began seeing little to no urine. Which led to the doctor's today saying "Since she is emptying her bladder on her own, there is really no good reason to keep her overnight." We were ready to spend the night in the hospital, but Praise the Lord we all get to go home instead.

Thank you for all of your continued prayers & support. We are so overwhelmed by all of the encouragement we have received. The battle isn't over yet, but the progress we have seen in such a short time is nothing short of miraculous.

Monday, September 27, 2004 6:45 PM CDT

Today we had an appointment at the Oncology clinic to do prep work for chemo tomorrow. Everything looks really well, like her blood counts are right where they should be. The nurse practitioner was really excited to see how well Lily was moving her legs since she hadn't seen her since we were discharged from the hospital.

Lily's movements do continue to get better and better every day. Her right leg is gaining strength and mobility and she is lifting up her left leg when laying on the floor.

We found out today that we will only have to cath Lily once a day!! Hallelujah! I really believe that we won't have to do it much longer, since we've been doing it twice a day and only getting a little bit out. (For those of you who aren't sure, this is a good thing, since it means she is peeing on her own!) The doctor told us that it is up to our discretion as to when we can stop. If it were truly up to me, we would have stopped already!!

Tomorrow we go in at 8 a.m. to the hospital to get the second round of chemo. I'm not real excited about the early time, but I'm sure it will go great.

Please pray for my Grandma as she is having some issues with high blood pressure. She is home now and everything is much better, but she is quite tired.

Friday, September 24, 2004 11:08 AM CDT

I have to admit that yesterday was a tough day. It shouldn't have been, since we stayed home most of the day, but it just was. Probably the worst part was going to get Lily's one year pictures taken last night and watching a six-month old "walk" between his mom's legs. I really felt at the end of my rope and just wanted to give up.

Before you feel too sorry for me, though, let me tell you what I learned. In the Beautitudes, Message translation, it says "You are blessed when you are at the end of your rope, for when there is less of you, there is more of God and his rule." When you are having a pity party for yourself, as I was yesterday, those words don't really sink in very good. However, once I got out of the funk by singing a praise song and praying, these words took on more meaning. I was also reminded of the Scripture, "Don't get weary in well-doing for in due time you shall reap a harvest."

My verse for today is a somewhat familiar one, II Corinthians 4:18, "So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary (or subject to change), but what is unseen is eternal."

So, if you're having a rough today, stop looking at all the things that you wish would change (the temporary things) and start looking at the eternal things (God). I encourage you to read your Bible. I know that was my biggest problem yesterday. Then put in some good praise music and dance!! (If you're not into dancing, at least sing loudly along!) It really helps.

Love you all! Thanks for listening to my ramblings.

Tuesday, September 21, 2004 11:01 AM CDT

Yesterday, Lily went in for her first session of Physical Therapy. That went really great. I learned some new exercises to help her build up strength in her legs.

We also went to see the neurosurgeon yesterday to get her stitches taken out. They were very pleased (as we expected) with her progress in moving her legs. She even moved her legs for the main surgeon who hadn't seen her move yet. He finally smiled!! Yeah!

We continue to be encouraged by Lily's movement and the decrease in urine coming out when we cath her. It's great to see God work his miracle!!

For those of you who are wondering, Lily goes in for her next chemo treatment on next Tuesday. She will stay just one night in the hospital and should be out early on Wednesday morning, praise God!!

Sunday, September 19, 2004 7:49 PM CDT

Sorry I haven't updated this in a couple of days. Lily did end up having a blood transfusion on Friday. It just was the right decision right then. It went very well and she had a great time watching all the Baby Einstein videos!

Lily had a great birthday on Saturday! It's so amazing that she's been with us for a year! We've now learned just how much she likes cake! Guess she takes after her dad!

Praise God, Lily continues to make progress in moving her legs. Today, she was moving her toes on her right leg (which has been a little behind) when I was tickling her. Her left leg is really moving quite a bit now.

We have had to put a catheter in Lily to relieve her bladder. Today, we noticed a significant increase in her wet diapers and a significant decrease in how much we get out when we "cath" her. We are so excited to see this progress!

Thank you again for all your continued prayers and words of support. God is definitely giving us grace to make it through this.

Friday, September 17, 2004 9:27 AM CDT

Yesterday, Lily went in to have her first of two scans done. These are done just to have a baseline to look at when the chemo is done. She did really well with the test and went to sleep quite easily. Her heart rate was pretty high even when she was sleeping, so they took her blood counts. Her hemoglobin is still dropping, but we decided not to give her a blood transfusion then.

Last evening, we had to go to the ER as she had a fever of 100.9 and diarhea. She got some extra antibiotics, but got sent home! It was a late night, but we were so excited that we all were going home!!

This morning, she is having her second scan done. Then we will be going to see the oncologist. Please pray with us that she will not need to have a blood transfusion and her blood counts are up so she can enjoy her birthday at home.

Thank you so much for all of your prayers and well wishes. Jason and I have been so overwhelmed at the love and caring people have shown towards us. It is truly humbling.

Remember, God is good all the time and all the time God is good. Love to you all.

Tuesday, September 14, 2004 3:40 PM CDT

Today has been such a calm, peaceful day! After all that's happened, it was getting hard to remember what a "normal" day is like!

Lily's surgery went really well yesterday. The Port is in and it really hasn't seemed to bother her at all. She has been in great spirits all day.

Tomorrow, Lily will be injected with a dye so they can do a test on Thursday and Friday to, once again, make sure they know where all of the cancerous cells are. This does not change the prognosis at all, but gives them a baseline to go by when the chemo is done so they know what all to look at and make sure it's gone.

I was reminded today of Hannah and how she "dreamed" of having a son for a long time. When the timing was right, God gave her a son and then some when He gave her three more sons and two daughters! What an awesome God we serve, that not only does he fulfill our deepest desires, but He also gives over and abundantly.

God bless you all!

Monday, September 13, 2004 12:23 AM CDT

If this is the first time you have visited this web site, and are unsure of what's going on, please check the first day's journal entry.

This morning, we went to see Lily's oncologist. He said everything is going great. She's been a little bit fussy, but it's hard to tell if it's because of the surgery, her back brace irritating her, being a one-year old or teeth coming in!

Lily is in surgery right now to get in her Port-A-Cath. Her neurosurgeon from last Monday stopped by and was very encouraged to see the progress in her movement in her legs. This morning she moved her legs while I was nursing her, which is very encouraging since she's only moved them prior to this with extreme stimulation (i.e. pinching or when she's mad). While we were waiting for the anesthesiologist, she moved them while sitting in her stroller.

God is good! We have been encouraged so much by all the notes, phone calls and emails we have received. Thank you so much for continuing to keep us in your prayers.

"Why are you down in the dumps, dear soul? Why are you crying the blues? Fix my eyes on God - soon I'll be praising again. He puts a smile on my face. He's my God."
Psalm 42:10-11 (Message Bible)

Sunday, September 12, 2004 10:03 PM CDT

If this is the first time you've been to this website, and you have no idea what is going on, please see the first journal!! It will explain a lot!

Today was the first whole day with Lily home. She has done quite well adjusting back to home life, probably a bit better than her mom and dad! Since she doesn't have complete bladder control yet, we have to catheterize her every four hours. It definitely makes life a little more interesting! It's going fine though, and it's been especially helpful with my (Tanya's) mom around.

Tomorrow, we go to Children's to see the Oncologist and to get a PortCath inserted into Lily's chest. This will allow the nurses to draw blood and give her medicine without putting in another IV. It goes underneath the skin so she won't be able to pick at it! It will be nice that she won't have any more bruises on her wrists and arms. The IV line goes into the vessel right by the heart, so the minute the chemo gets put in, it gets quickly pumped to the rest of her body. The surgery to put this in is quick so we will be home again tomorrow some time.

My verse for today is "Seek ye first the kingdom of God and all these things will be added unto you." I really feel that God has used these circumstances to draw us closer to Him. Now that things have calmed down a bit, we need to keep in the Word and keep praying as much as we have recently.

We truly appreciate everyone's prayers and thoughts. We have definitely felt uplifted by them. Please continue with them until we have reached the perfected end result.

Saturday, September 11, 2004 5:39 PM CDT

We all came home today!! Yeah!!! It was so exciting to be driving down the road and have our little baby in the back seat again. It has almost felt like having a baby all over again!

So, for those of you who haven't heard the story, here it is in a somewhat large nutshell: On Friday, September 3, we brought Lily into the doctor because she had been really crabby all week and sleeping quite a bit. We found out she had a bladder infection and our doctor recommended that she be hospitalized to make sure she didn't have a kidney infection and just to be observed. We checked her into North Memorial and didn't think a whole lot of it.

On Saturday, she had an ultrasound done of her kidneys to make sure there wasn't an infection. What they found was that her bladder was very full. A normal baby's bladder is supposed to hold 90-100 cc of urine and hers had about 150cc. So, we saw a urologist and he wanted to do bladder scans that night to see what her bladder's volume was. That night, the nurses got 300cc out of her bladder!!!

So, the next morning, we saw a Pediatrician to figure out why she was retaining urine. She had us tell her the whole story from the beginning. When she put all the pieces together - bladder retention, constipation, and not bearing weight on her legs any more - she decided we needed an MRI done because most likely something was pressing against her spinal cord. About 7:30 pm Sunday night, after the MRI, the doctor came in and told us there was a tumor in Lily and part of it was in the spinal column pressing against her spinal cord.

At 8:00 am Monday morning, we were admitted to Children's Hospital in Minneapolis. It was a whirlwind of activity. We saw doctors, neurosurgeons, anethesiolgists and plenty of other people that I barely remember now. By 11:00 am Lily was being prepped for surgery! They didn't actually start surgery until 1:00 pm but they were done by 2:30 pm. The surgery went really well. It was faster than they had anticipated, they got out all of the tumor that was pressing against the spinal cord and they didn't have to give her a blood transfusion. God certainly answered all of our prayers!

Lily spent the night in the PICU and then went for another MRI and CT Scan on Tuesday morning. It was decided that she did have neuroblastoma, which is a type of cancer. In children under one year of age, though, it is a very treatable disease and responds well to chemotherapy. She was given a super good prognosis and should only have to go through chemotherapy for 12 weeks. They will then give her another MRI and do another surgery to take the dead tumor out. We will be going back for chemotherapy every three weeks.

On Thursday morning, Lily kicked at the doctor and ever since then has steadily improved. We believe that she will regain full strength in her legs, full bladder and bowel control and be up and walking around soon.

God has been so good to us in giving us a great network of friends and family to support us and giving us strength and wisdom every day. It's amazing how much one grows and gets stretched in a situation like this. We know God never intended for this to happen, but that he will turn this around for his glory. We are so excited to see where he will lead us in the journey of miracles.

Saturday, September 11, 2004 5:34 PM CDT

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