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Monday, March 16, 2009
I suppose I could take it a lot of ways. But I choose to take it as Laney telling me a few things in only a way SHE could tell it:
1. Lighten up
2. You're freaking me out
3. I’m good, just sitting up here with friends playing games
So here’s what happened….
This past Sunday I was helping out in the children’s area like I always do for church. This is a place that Laney never got a chance to be. It was completed and opened within just a few weeks after her death and was dedicated in her name as she was a powerful proponent for this area being made.
As most of you know, Laney was a player. Not the bad kind of player…a game player. She loved games. Board games, card games, whatever…she just loved playing. She got a Dora backpack one Christmas with 5 or 6 Dora card games in it. We carried that most everyday after she got the backpack. We played games wherever we went.
Sunday as we were setting things up for Children’s Church, we moved a flag stand. Underneath the flag stand base was a playing card. It was not just any playing card. It was a Dora Crazy 8’s playing card. That’s one of the card games that came in the Dora backpack that she carried around. One of the games we played a million times.
How did it get there? I have not seen any other child with Dora playing cards. I knew it wasn’t but it didn’t stop me from checking….yeah, I went home and went through her Dora backpack and Dora Crazy 8 cards. Of course hers was there, but it didn’t make me think any less that it was definitely her sign.
Telling me to lighten up and asking me…when’s the last time you played a game?!
Love and prayers,
The ‘Baums
Thursday, March 12, 2009
So here we are.
I don’t know where.
I don’t know what or when or how.
We’re just here. Over the year mark but not feeling any better. In fact, everything seems more real than ever.
The anticipation of the year brought anticipation of dates. Dates of “this is the last day we went to Thursday night group” or “this is the last day we went to church together”.
The anniversary in itself was not horrible but we just unplugged from it all. No work, no news, no friends, no nothing….just together.
So we’re over that date now…..but it doesn’t mean anything. There’s no magic on the other side of that date. On THIS side of that date.
We’re still just here….waiting for the pain to subside but seeming to find it all the more painful as days go by.
Going over details of things.
Things that cannot change.
Never stop praying or hoping,
The ‘Baums.
Thursday, February 26, 2009
So it’s been a year. There are moments when that statement seems like forever ago and moments where it seems like yesterday.
I’ve kind of decided that I might boycott the month of February! I’m not diggin it any more. The middle is ok…but it’s only Valentines….that’s a holiday I don’t really need! Although I do remember the day after Christmas ‘07, Laney telling everyone that the Children’s Cancer Center was having a huge Valentine’s party that she was going to. (and by everyone I mean anyone that she saw wherever she went until the day of the party.) The staff at the CCC was ecstatic to find out that they were throwing a party!
Thank you for all the thoughts and prayers pointed our way….we surely felt them lifting us up.
Love and prayers,
The ‘Baums
Thursday, February 5, 2009 11:03 AM CST
Chili’s is doing their Charity Challenge again this month. From now until March 6 when you eat at Chili’s you can choose to give to a few charities…..among them is the Children’s Cancer Center. Last year they raised $142,000! So, dine and add your dime to the Children’s Cancer Center.
Love and prayer,
The Baums
Wednesday February 4, 2009
Last year, February 4th, we celebrated 6 years of life for Delaney.
One year later….well….we still celebrate her life but miss her desperately.
It’s been a heck of a year. Laney was one of many that were forever healed last year. Lots of anniversaries are coming up in the next few months and many that have been through the first anniversary/second year have said that it seems harder.
So please keep all of our families in your prayers….
Love to all.
Friday, January 9, 2009
We were going through some photos and videos today. The photos weren't bad...I look at her pictures all the time. But the videos...
Wow.
I haven't heard her voice in almost a year. I didn't realize how much I missed her sweet voice till I heard it on the video.
It's so much a double edged sword....I want to hear her but I can't just call her on the phone during the day or come home and hear her tell me about her day.
Now I can only hear her on the video.
I used to complain about how exhausting she was....the girl talked constantly. From the minute she got up until far into her sleep...because she talked in her sleep too!
Now....goodness....what I would give to hear talk to me.
But....I will have to wait for that day.
There is a song by Steven Curtis Chapman that came out last year named "Cinderella". It simply talks about a little girl growing up but part of the words are "all too soon the clock will strike midnight and she'll be gone."
He couldn't have chosen better words....the clock strikes midnight in many different ways.
When you feel you've reached your wits end with your kid....just hug them!
Monday, January 5, 2009
The Christmas season upon us
has now gone its way
the time seems a bit foggy
even some went astray
we got stuck once or twice
for a moment or two
but with great friends and family
we were able to get through
now into the new year
we will go with God's Grace
and pray everyday
for peace in this race.
Wednesday, December 10, 2008
The idea of Christmas seems so surreal. I see the decorations and trees and lights and hear the music, the weather has been wonderfully mild and we’ve been incredibly busy…. but it seems like it’s not something that belongs to me this year.
It’s like looking into a snow globe. I can shake it and touch it and feel it on the outside. I can surmise what it might feel like to be in it but, just can’t seem to be a part of it.
Our plans this year are to have no plans. We’re going with what the days bring to us. Aside from church, we have no idea what we will be doing. Going away? Staying in? Right now we’ll just be kind of walking around and looking in all the snow
globes.
Love and hug all your peeps!
Wednesday, November 12, 2008
Sometimes, life goes day to day in songs….
Some are happy…
I’m walking on sunshine
I’m walking on sunshine
I’m walking on sunshine
And don’t if feel good!
And some are a little sad:
If I could hold you now
Just for a moment if I could really make you mine.
Just for a while turn back the hands of time.
If I could only hold you now.
But what I’ve come to know more everyday is this:
I’ve walked the valley of death’s shadow
So deep and dark that I could barely breathe
I’ve had to let go of more than I could bear
And questioned everything that I believe
But still even here
in this great darkness
A comfort and hope come breaking through
As I can say in life or death
God we belong to you.
If I know nothing else in this world, I know that I have been saved in spite of myself.
Tuesday, October 21, 2008
October already.
Fall is here bringing with it November, Thanksgiving and the whole holiday season. Fall is my favorite time of year….November my favorite month…Thanksgiving my favorite holiday.
I don’t want it this year.
As the days creep forward, I want to go away. Hide in a cave. Hibernate for the winter and come back when spring is near.
It would be easier.
I’m not sure why people think that this will be easier “because I have other kids to focus on”. What exactly is that supposed to mean? Isn’t that like asking which do you like better…your heart or your lungs? If your liver is failing, do you focus on your kidneys because they are ok?
Everyday, I have to wake up knowing that one part of me is missing.
Everyday, I have to choose to get up and go on.
Everyday, it’s a little harder and a little easier.
I will get through this time. But only by the grace of God. Not because I have other fabulous children. Not because I have a wonderful husband. Not because I have great family or friends for support. But by His grace….to which He has granted me all the fabulous, wonderful and great things in my life.
Thursday, September 4, 2008 9:30 AM CDT
September is here. Hurricanes are brewing. But in the midst of that chaos, it seems almost not comparable to finding out your child has cancer. When you are diagnosed you get a card. The card says “my child can die at any moment”. The card is something that you keep in the front of your mind until your child is through the treatment….after that it doesn’t get thrown out, it only gets filed in the back of your mind plus they get a new card….it’s called a relapse card. The next cold, or bruise, or headache or general ill feeling brings those emotions right back to the front of your mind because what you know is that a child with cancer has a great risk of relapsing at any time.
As an adult that child will have to tell doctors about cancer and keep that relapse card in mind because a child who survives cancer is at higher risk for developing any number of other cancers. One of the reasons is because the medicine that “cured” them, is a carcinogenic itself.
We need better ways to cure our kids. We need better odds that our children will live and have a better chance at living a normal one. Your donations are needed.
Chili’s (www.chilis.com OR www.createapepper.com) is doing their donation of proceeds on Monday 9/29. These proceeds go to St. Jude’s. They also have a “create a pepper” for a dollar donation all month long.
The Pediatric Cancer Foundation has all kinds of things going on this month. Please check out their site at www.pediatriccancerfoundation.org OR www.fastercure.com
The Children’s Cancer Center is doing all kinds of things this month too. Their website is www.childrenscancercenter.org.
You can order shirts and other things from www.cafepress.com/teamunite. I’m not sure if any of this money goes to anything but the shirts themselves demonstrate awareness.
These are just a few of the things going on this month. There are many more. Check out other kids' websites, do a search on the web. Whatever you do, give a little….It goes a long way.
Love and prayers,
The ‘Baums
Wednesday, August 20, 2008
And the madness has begun….school madness that is. It was a little hard this year since Laney would have started her 1st day of 1st grade. I had requested this day off in January knowing that it would be the first day of school. Interestingly enough, I got a jury summons about a month ago for the same day (18th). I didn’t end up going to jury duty (my juror number was excused) nor did I take the day off. The older kids are veterans at the first day…no reason to stay home.
The week has been crazy to say the least and it’s only Wednesday. Cakes are being delivered at the beginning and the end of this week, church, school, parental homework (which = open checkbook and sign here), practices. Oh and can you throw work, cooking and laundry in there. Oh and just for good measure, here’s a hurricane!
Can I just say that sleep is overrated? I feel like the caffeine patch lady in Meet the Robinsons. AHHHH, Sorry!
And apparently as much as the schools “understand that money is tight” because “we’ve had to cut back too” it certainly doesn’t mean that parents get to cut back on our spending for school supplies/uniforms/memberships…no offense to any school personnel, BTW! Just venting!
Driving down the road I came across a song whose lyrics caught me a little off guard. The song is not about losing a child but it does express the desperation that you feel sometimes. Just the chorus:
I’ve talked to friends
Talked to myself
I’ve talked to God
I’ve prayed like hell
But I still miss you
I tried sober
I tried drinkin’
I’ve been strong and
I’ve been weak and
I still miss you
I’ve done everything, move on
Like I’m supposed to
But I’d give anything
For one more minute with you
I still miss you
Next month is September which means childhood cancer awareness month. Please prepare to be inundated by all of our sites to support great charities, foundations and such. Chili’s will again be supporting donations to St. Jude’s (as far as I have heard). The Children’s Cancer Center is doing some fund raising as well as places like the Pediatric Cancer Foundation. There are many others and if you only give to one…please do.
Love and prayers,
The ‘Baums
Monday, August 4, 2008
In our living room there is a bookshelf that has all of Laney’s stuff on it. The reading books, the coloring books, crayons, markers, bubbles, some games, puzzles, etc. We went through those this weekend. Going through them was ok. Sitting on the couch and looking at the shelves looking so different now…that is difficult. Though we understand that it’s real that she is gone….things like this just makes it terribly concrete.
VBS was a huge success. It’s such a blessing to be able to be part of that. Everything went well until I tried to sit and watch the slideshow of the week’s pictures. Seeing everyone except Delaney in those pictures is what got to me.
Hard to believe the summer is almost over….only two weeks till school starts. All the big kids are in high school this year. I’m really not sure how we got old enough to have children in high school!
Cake things are looking up…I seem to be getting more of a steady flow than nothing for months and then all of a sudden 4 at one time! I’m still not clear on the future of the “business” or if this is all it might end up being…I’m praying on that! Either way, it will continue to be a passion.
Love and prayers,
The ‘Baums
Thursday, July 24, 2008
So last night after my best friend left from a visit, I shut the door and did something that came so natural it threw me for a loop. I turned around and looked at Laney’s chair and said out loud “you doing ok Laney Lou?” I just kinda stood there…..stunned, saddened, unable to exhale. All the time when I would say goodbye to someone and close the door, I would turn around and she would be sitting in her chair and I would say “you doing ok, Laney Lou?” Today is 5 months…..I haven’t done that in 5 months. That hurts way too much.
Please pray for Jimmy Reichert's family (caringbridge site name JimmyReichert). Jimmy passed into our Lord's hands yesterday.
Monday, July 21, 2008
The girls are back from camp. They had a fantastic time which we were glad to hear. I’m sure we missed them much more than they missed us!
This week I am blessed to be able to be making cakes for the Children’s Cancer Center. Each year they host Kite Camp which is a day camp for patients and siblings. They are having a 60’s theme with tie die T-shirts and lava lamps as far as the eye can see! The cakes will be tie-die T-shirts as well! It’s a lot of work but I’m happy to be doing it.
Next week is VBS. I’m conflicted about it this year. Laney loved VBS….as tired as she would get each night, she just loved being able to go. I will miss terribly driving home each night and talking about how much fun she had that night. I’m helping in the kitchen again this year and it’s been a lot of fun coming up with dishes that go with the Science Lab theme. We’ve come up with some interesting ideas!
Love and prayers,
The ‘Baums
Monday, July 14, 2008
The kids are off to church camp in North Carolina for the week. It’s interesting to have a completely quiet house.
Nothing much is going on….I’m trying to get the cake business going a little more (link is below…hint, hint….nudge, nudge!!!). A friend gave me a great suggestion for a party idea. It’s a cupcake party. Along with a small theme-decorated cake, I make a bunch of cupcakes and take all the icing and decorating stuff that will go with the theme of the party and the kids can decorate their own cupcakes…..Sounds fun and easy! I think I will start looking at making up some business cards! I’ve been blessed lately with a few business opportunities that I am looking forward to.
I can’t believe summer is half over….school starts again in 6 weeks. All the kids are in high school this year….good Lord. How did we become old enough to have kids in high school?!
Love and prayers,
The ‘Baum’s
Thursday, June 26, 2008
Going through Laney’s stuff hasn’t happened yet. Each time I think I might start I just look at her stuff and can’t seem to get any further than looking. Then, mysteriously, I find something else to do. I suppose it will come in time.
Every morning when I open the living room curtains I remember how Delaney and I used to say “let some day light in!” Since she got up at the crack of dawn it was just something we started saying. It certainly isn’t the same without her and I hope I never forget that.
I don’t know what to write anymore since this was all about what was going on with Laney. I think soon I will put a sort of eulogy/epitaph on here and that will be it. I will be updating the cake site (link below) and have an email that anyone can contact us if you want to just check in (or order a cake!). We will be leaving this up though….till they tell us we can’t anymore!
Love and prayers,
The ‘Baums
Wednesday, June 18, 2008
Seems like it might be time to start going through Delaney’s things. We haven’t touched much of it. We gave away some of her movies and larger toys that she didn’t really play with to family that was down for her funeral. Everything else is left the same way that she left it. Her table and chair in the living room sits the same way…..waiting for her to come back and sit and draw her pictures or play games like she used to. Something that won’t happen again. I made her bed the night she died and it hasn’t been touched except for the cat sleeping on it. He never did that when she was alive…..appears he might miss her too.
I’m going to make a bold attempt at putting together a quilt of Laney’s clothes. This should be interesting. I am exceedingly sewing challenged. The first and last time that I used a sewing machine, the machine went into the shop for a few days. I was, however, brave enough to purchase my own sewing machine shortly after we got the house…that was 7 years ago. I haven’t used it…it sits in the closet mocking me, whispering things like “scaredy cat!”. My warnings of strangling it with it’s own thread (because that’s how I sew) doesn’t seem to worry it.
With school being out the big kids are bored. There are a few camps that they will be going to but it’s only a couple of weeks out of the whole summer.
So, not much going on for any of us right now. Sometimes….not nearly enough going on. Too much time can lead to too much thinking!
Love and prayers,
The ‘Baums
Monday, June 9, 2008
Hope you have a wonderful Father's day!
When God Created Fathers
by Erma Bombeck
When the good Lord was creating fathers He started with a tall frame.
And a female angel nearby said, "What kind of father is that? If You're going to make children so close to the ground, why have You put fathers up so high? He won't be able to shoot marbles without kneeling, tuck a child in bed without bending, or even kiss a child without a lot of stooping."
And God smiled and said, "Yes, but if I make him child-size, whom would children have to look up to?"
And when God made a father's hands, they were large and sinewy.
And the angel shook her head sadly and said, "Do You know what You're doing?" Large hands are clumsy. They can't manage diaper pins, small buttons, rubber bands on ponytails or even remove splinters caused
by baseball bats."
And God smiled and said, "I know, but they're large enough to hold everything a small boy empties from his pockets at the end of a day ... yet small enough to cup a child's face in his hands."
And then God molded long slim legs and broad shoulders.
And the angel nearby had a heart attack. "Boy, this is the end of the week, all right," she clucked, " Do You realize You just made a father without a lap? How is he going to pull a child close to him without the kid falling between his legs?"
And God smiled and said, "A mother needs a lap. A father needs strong shoulders to pull a sled, balance a boy on a bicycle, or hold a sleepy head on the way home from the circus."
God was in the middle of creating two of the largest feet anyone had ever seen when the angel could contain herself no longer. "That's not fair. Do You honestly think those large boats are going to dig out of bed early in the morning when the baby cries? Or walk through a small birthday party without crushing at least three of the guests?"
And God smiled and said. "They'll work. You'll see. They'll support a small child who wants to 'ride a horse to Banbury Cross,' or scare off mice at the summer cabin, or display shoes that will be a challenge to fill."
God worked throughout the night, giving the father few words, but a firm, authoritative voice; eyes that saw everything, but remained calm and tolerant.
Finally, almost as an afterthought, He added tears. Then He turned to the Angel and said, "Now are you satisfied that he can love as much as a mother?"
The angel shuteth up.
Love and prayers,
The 'Baums
Tuesday, May 27, 2008
It’s interesting to see the similarities in circumstances of a family that has a child who has just been diagnosed with cancer and a family that has just lost their child. When you are first diagnosed, there are people surrounding you. People offering all kinds of thoughts and prayers. As time goes by, people go back to their normal lives where the normal life for the newly diagnosed cancer family begins its craziness. Every single day is different and hard and scary.
It seems the same for a grieving family. When it first happens, everyone is wonderful with the kind thoughts and prayers. We certainly don’t take those for granted. But three months later it seems like again, people forget that while their lives go on like normal….ours are changed every single day. This child was a part of our everyday life and so every day is different. Every day is hard. EVERY day is scary.
Neither family is looking for pity. Just compassion and remembering that while your normal day hasn’t changed…ours has. Every single day sucks at some point….laughing in one minute and hurting the next.
Aside from the missing pieces….Hurt, Anger, Depression and Guilt are the new normal. Things will eventually change/get better. We will be healed but not in a couple of weeks or months. It’s going to take LOTS of time and patience on everyone’s part.
Love and prayers,
The ‘Baums
Tuesday, May 13, 2008
Things are going well. Hope everyone had a wonderful Mothers day. I was touched by something that Anissa (hope4peyton.org) had said about Mothers day. It certainly wraps up the way I feel….
“Mother’s day is less about them celebrating me as a mother and more about me wrapping my heart around the gift of them making me a mother.”
I certainly have been blessed to have the children that were given to me.
This week is a busy week…..cakes, bake sale, pot luck, school meeting, school dance, work party, bridal shower, scavenger hunt …plus all the normal stuff!
Keep all the kids and families in your prayers.
Love and prayers,
The ‘Baums
Monday, May 5, 2008
Sierra Kesler was forever healed this weekend. No longer fighting, she is free to run and play.
There are many, many things that are difficult to understand in this world. Having to bury a child is among the top. It shakes you to the core. And though I know that God has also felt the pain of losing a child, it still is something that shakes us mere humans to the core.
Especially when it keeps happening……
This is the fourth child in as many months. And the number of relapses that have occurred just since January is scary to say the least. I know God’s plan is FOR us and not against us….but sometimes….just sometimes….it’s so hard to see.
Please keep the Keslers in your prayers.
Love and many prayers,
The 'Baums
Monday, April 28, 2008
It’s been only two months since Laney passed but it seems like forever since we last were able to hold her or hear her sweet voice.
We are holding together. Taking each day at walking speed trying not to wish the day away too quickly.
Please keep in your prayers: the Gliddon family, Sierra (sierrakesler), Jimmy(jimmyreichert), Peyton (hope4peyton.org) and in general those families fighting.
Love and prayers,
The ‘Baums
Wenesday, April 16, 2008
Vacation was very nice. We were able to see family we haven’t seen in a few years. We went to Cades Cove which is an old settlement in the Smokies, went to Dollywood and went to see the Biltmore house too. The cabin was wonderful. We highly suggest staying in the cabin! (www.RusticOaksCabinRentals.com )
It was harder coming back than I thought it would be. I find myself missing Laney more and more. We were going to make this trip with Laney over Christmas this year since she was stable and able to be away from doctors. We are still hoping to go back at Christmas but we will have to see what the year brings.
Please pray for Mathew's family. Mathew passed away today. (site name: mathewjgliddon).
Continued prayers for Sierra (site name: sierrakesler), and Jimmy (site name: jimmyreichert).
Love and prayers,
The ‘Baums
Monday, March 31, 2008
Just a quick note..... extra prayers for Sierra Kesler's family. Sierra has relapsed after just finishing treatment. caringbridge site name: sierrakesler.
Thursday, March 27, 2008
We are doing ok. Easter was……well, Easter was pretty good. The older girls were baptized that Sunday. It was very exciting for them to do it on that day. We didn’t do all the normal things we would normally do but it was still a pretty good day. Any holiday is going to be difficult
We are going on a trip. Something we haven’t done in a long time. Gracious friends of ours have a cabin in Tennessee that they offered to us for a week. We took them up on the offer and will be leaving for spring break. We aren’t going to hurry anywhere……just take time and be together.
Continued prayers for Mathew’s family. They brought him home on hospice this week. (caringbridge.org site name: mathewjgliddon)
Love and prayers,
The ‘Baums
Tuesday, March 18, 2008
A month is coming up on Sunday. Spiritually we are filled with joy on this Sunday as it is Easter. Filled with hope knowing that Laney is celebrating this great day in heaven with our risen Lord. Humanly, we are conflicted...sad that she gone and we miss her.
We are all doing ok overall. The shell that God so graciously surrounds you with to get through the things you "have" to do the first week or so is slowly fading away. It's a little hard sometimes but with your prayers and ours, we get through so thank you for your continued prayers.
Please extend unceasing prayers for Mathew's family. caringbridge site name: mathewjgliddon.
Love and prayers,
The 'Baums
Wednesday, March 12, 2008
We are all doing ok. We have our moments but we're just hanging on to each other.
We would like to ask you all to lift up Mathew Gliddon and his family. Mathew will not be going forward with any treatments....the leukemia has returned and is consuming little Mathews systems. Please pray for strength and patience and all that they will need in the coming days/weeks/months.
caringbridge.org,site name: mathewjgliddon.
Love and prayers,
The 'Baums
Friday, March 7, 2008
Through everyone’s donations we raised around $5000 which, interestingly enough, was split pretty much in half between the Children’s Cancer Center and our children’s church initiative. The two places Laney loved going more than anywhere else have been helped by your donations. We can’t thank you all enough for your generosity.
It’s been a long couple of weeks. Ups and downs, of course, through each day but we are hanging in there and hanging on to each other. Tomorrow we are going to finalize Delaney’s headstone…..Certainly not something that is easy. We had decided on the headstone instead of a bronze marker because the headstone is something that can be seen easily. Delaney was not one to blend into the crowd so it seemed more fitting!
Continued prayers for Mathew and his family….there are many ups and downs for their family in the coming days/weeks/months. Caringbridge.org site name: mathewjgliddon.
Love and prayers,
The ‘Baums
Saturday, March 1, 2008
As things this week come to a close it is time to return to our routine. Except now our routine is missing something. This will be the most difficult. NOT getting Laney’s breakfast in the morning, NOT getting her dressed for the day. NOT making a plate for dinner, or making a bubble bath or reading her a story, or kissing her goodnight. NOT playing a million games with her every day.
It still seems very surreal. We know that we went through all the motions of burying a child but it still seems more like a dream….well, a nightmare…..rather than real life. We’ve stayed busy during the past days but we were always busy during the days. It’s the nights that get us right now. But soon, it will be a thought or a sound or something subtle that no one else may even notice that will get us. Not all the time but now and again, we will remember that someone is missing from here.
Our Lord is with us, and He will bring us through this just as he has everything else. We can only imagine what great works Laney is doing with Him and for Him. Our hearts break but what makes it a little easier is knowing that she is at peace, rejoicing in the joy and happiness that only Jesus can bring. We know that we will see her again some day. Until then, the short life that she led here on this earth will continue to spread the many ripples that she has placed upon the ponds of every life she touched.
May you be blessed as richly as we continue to be,
The ‘Baums
Tuesday, February 26, 2008
The visitation is on Thursday night at the funeral home from 6pm-8pm.
Marsicano...Reed Funeral Home
4040 Henderson Blvd, Tampa 33629
http://maps.google.com/maps?f=q&hl=en&geocode=&q=4040 Henderson Blvd, Tampa, FL 33611&sll=37.0625,-95.677068&sspn=40.953203,58.183594&ie=UTF8&z=16&iwloc=addr
The funeral will be Friday afternoon at our church Manhattan Baptist at 1pm. At this service anyone who would like to speak about Delaney will have a chance.
Manhattan Baptist Church
4300 S. Manhattan Blvd, Tampa 33611
http://maps.google.com/maps?sourceid=navclient&ie=UTF-8&rlz=1T4GGIH_enUS222US223&q=4300 S. Manhattan Blvd, Tampa 33611&um=1&sa=N&tab=wl
A graveside service will follow the church service directly at Sunset Memory Gardens. There will be no procession due to the distance to the cemetery.
Sunset Memory Gardens
11005 US Hwy 301 N., Thonotosassa 33592
http://maps.google.com/maps?q=11005 N US Highway 301, Thonotosassa, FL 33592, USA&ie=UTF8&z=16&iwloc=addr
We want all of you to know that you are welcome to any and all services. Laney knew no strangers and she would never want to exclude anyone from any event. Please feel free to come to any or all of the services planned. We are asking two things....One, please no black. Any other color but black and feel free to dress casually. Two, in lieu of flowers we would like donations to be made to either the Children's Cancer Center or the Manhattan Baptist Church "On Higher Ground" initiative.
Her ripples do not stop here....
love and prayers,
The 'Baums
Monday, February 25, 2008
Our human hearts are sad and will need healing. Our Christian hearts know that Laney is free and talking with Jesus....and talking, and talking and talking!
We were able to visit the grave site today. It will be at the Sunset Memory Gardens on 301. We were not able to visit the funeral home today but will go first thing in the morning (2/26) to finalize times. The funeral home is the Marsicano Funeral Home on Henderson Blvd in South Tampa. When we are able to get the times finalized we will update with all the details.
We are hoping to have the visitation on Thursday night at the funeral home. The funeral we hope to have Friday afternoon at our church (Manhattan Baptist) and a graveside following the service. We want all of you to know that you are welcome to any and all services. Laney knew no strangers and she would never want to exclude anyone from any event. Please feel free to come to any or all of the services planned. We are asking two things....One, please no black. Any other color but black. Two, in lieu of flowers we would like donations to be made to either the Children's Cancer Center or the Manhattan Baptist Church "On Higher Ground" initiative.
The events that brought us to this place seem so unbelievable at times. Yesterday was completely surreal. I've heard people say how their heart hurts but of course you can never know truly how it feels unless you have walked in their shoes. Our hearts physically hurt last night. Someone said today that the hurt never goes away, you just learn to live with it differently. We know that's true but that our Lord will help our human hearts heal.
Her ripples do not stop here....
Love and Prayers,
The 'Baums
Sunday, February 24, 2008
It is with great sadness and a very heavy heart that we must report that our dearest Laney Loo has been called home.
Arrangements have not been made yet but we will post, probably some time tomorrow.
Please just pray for strength and healing for our family.
Thank you,
The 'Baums
Wednesday, February 6, 2008
Laney is doing really well. There are a few attitudinal issues…we think she might be making up for some lost time over the past few years! It’s a battle of wills sometimes and I have to say….it’s hard to win! LOL
Her birthday was great…surrounded by family and friends she had a very nice time. Thanks to all who had a hand in that.
PT is going well. We are going to look at getting her into OT as well….get some of those detail oriented tasks easier. Things that we take for granted like using utensils, brushing hair, tying shoe laces….stuff she would have learned already. Plus, OT will help her to get along better with her visual impairment. She does great in the house but outside in surroundings that are not her own she gets a little nervous.
She’s eating well…we’ve “forced” her to start eating more things. For the most part she likes what she’s eating but sometimes it takes A LOT of coercion!
We’re still trying to get her back into school; it’s just a slow going process.
Not much to report which is the way we like things! We’ve got a CCC night on the 15th which will prove to be much fun. She’s got an oncology check up on the 19th and her tummy tube is coming out on March 4th (well, we hope anyway)!!
We ask for continued prayers for Mathew (caringbridge site name: mathewjgliddon). They are having many ups and downs so please lift him and his family up especially for strength and direction.
Much love and prayers,
The ‘Baums
Monday, February 4, 2008
Today Delaney is 6 years old.
Three years ago today we were still processing the devastation. Delaney was diagnosed with an inoperable brain tumor 2 weeks before her third birthday. Our minds were racing with new medical terminology, thoughts of losing our child, but also numb….not wanting to feel anything. Delaney spent her 3rd birthday in the hospital and celebrated it with her first dose of chemotherapy.
Two years ago, she was still undergoing chemotherapy. After one year of chemo and only three months left to go, we had been in and out of the hospital for fevers, spent hours trying to get food back into her after being sick, and seen a few new found friends not be as lucky as we were. We had also not seen any change in her tumor. It was still active but considered stable.
One year ago we were back onto a different chemo because the tumor started growing. We were getting ready for radiation because the tumor started growing. We were scared because the tumor started growing. We had seen a few more friends not be as lucky as we were.
Six months ago we were told there was nothing more that could be done for her. Radiation side effects were causing a huge expansion in the tumor. It would be a fight between time and how much pressure her brain could take. The pressure was relentless…..Laney was almost comatose at times. We thought we were going to be among the not so lucky.
The only thing we could do at the time was to reflect on a life cut short on this earth. But a life that in that short time….especially the “sick” years…… was able to touch, impress upon and bless more people than some of us are able to in our whole lives. We prayed that she would stay with us but understood if the Lord needed her more than we did.
We were blessed with a miracle. Laney has more work to do on this earth. More people to touch, lives to bless. Ours are just the beginning of that long line.
Today….Delaney is 6 years old!
Love and prayers,
The 'Baums
Sunday, January 27, 2008
Laney is doing pretty well. She's been complaining off and on over the past week of "neck" pain and headaches. If it continues or gets worse we will need to get a CT to be sure the shunts are not blocked.
Her physical was good. She is ready for school whenever we can get the staffing and everything set.
She lost one of her two top teeth with the other not far behind it. Her grin is funny now!
Coming up is a couple of CCC dinners (1/31, 2/14 and 2/15), one of which is the Valentine's party that Laney was telling everyone about. Before that we will be celebrating her 6th birthday. Three years ago, we celebrated her 3rd birthday in the hospital with her first dose of chemo. How far we have come!
We have to ask for special prayers for little Mathew. Unfortunately, he relapsed again last week. There are more decisions for his family to make regarding his treatment. Please lift them up. (caringbridge site name: mathewjgliddon).
Love and prayers,
The Baums
Wednesday, January 16, 2008
Laney, again, is doing very well. We are happy to report that the BT oncologist feels that the tumor is dead. It’s not 100 ut they are considering Laney cured. The tumor is not gone but as long as everything inside is dead, it will not grow or feed the cyst and she should have no further problems concerning the tumor. They are looking at getting her medi-port out in the next few months and her tummy tube is coming out in March. We are singing praises to our Lord!
All that we are left with is dealing with the side effects of chemo/radiation, pituitary issues, shunt issues that may or may not come up and her vision. All of which can certainly be handled.
We are going to try to get Laney back into school at least part time. She is registered at our neighborhood school but we’re going to try to get her back into Grady where she went before. Our homebound teacher, Ms. Alfonso has been wonderful. She said that Laney seems ready to go back. Hopefully, we can get that going in the next few weeks. I know Laney will love it, especially the social part of it.
In light of Laney being able to go back to school she is getting a physical tomorrow (1/17). Other than that, everything should be relatively uneventful….well, medically anyway!! There are a couple of CCC dinners this month, her birthday is coming up on February 4th and of course Valentine’s day. Since the day after Christmas, Laney has been telling everyone that she is going to the cancer center for Valentines because they are having a big party. Well, thank goodness they are!
Again, continue the prayers for Mathew. He did go into remission so they are ramping up to go to CHOP (children’s hospital of Philadelphia) for the bone marrow transplant. (Caringbridge.com name: mathewjgliddon)
Love and Prayers,
The ‘Baums
Monday, January 7, 2008
Christmas and the New Year were wonderful…..full of friends and family. We hope that yours were as blessed as ours.
Laney is doing very well. The ophthalmologist appointment was good. He said her near vision is about 20/50 at best and far vision is probably 20/300 at best. Both are a little worse than she was before this summer, but far better than when she got out of the hospital.
The MRI was “unremarkable”. That’s good news for a BT patient! We got one of the “newer” MRI’s that are able to detect the cellular activity of the tumor….or something like that. Whatever it does, it’s supposed to be able to tell if there is any live activity within the tumor to see if it’s dead or not. We haven’t talked to the doctor about the results yet to see what everything actually means…we will do that tomorrow (1/8/07). It does say that there are areas of necrosis (death) within the tumor…always a good sign.
We’ve noticed that Laney seems to be getting her “parkinson’s-like” symptoms back. She started having these symptoms before everything happened over the summer. The fact that these are starting to come back doesn’t seem alarming this time….perhaps everything is just kind of settling back. But we will bring it up to the doctor tomorrow.
She’s eating like crazy still! We’ve had to start really watching how much she’s eating. I’ve said that so many times but for the entirely opposite reason….we are not sad about it! The only reason we are even concerned is just for physical therapy. We don’t want her hindered in getting back to life because of her weight.
We’ve seen yet another miracle that God has brought …..not us this time but Mathew Gilddon. About three days after big Mat and Karen found out they were pregnant with baby Andrew, they were given the original diagnosis of Mathew’s leukemia. They felt compelled to keep his cord blood. Well, a few days ago they found out that Andrew is a perfect match for Mathew and they can use the cord blood. Now all they need is for Mathew to go into remission and they can do the marrow transplant. They should find out some time this week if he’s in remission. Please continue your prayers for their family. (caringbridge, site name: mathewjgliddon)
Thursday, December 20, 2007 11:08 AM EST
‘Tis the Season is an understatement! We have been extremely busy…..sorry for the delay in updates!
Laney is doing very well. Her homebound teacher, Ms. Alfonso is excited to be working with her. Class work and homework are back and she is very happy to be doing it! We were hoping to get her physically back to school in January but she’s still not quite ready. She’s getting better but maybe a couple more months of physical therapy and getting her stamina back.
We saw the gastroenterologist and he is very happy with Laney’s eating and weight gain. He wants to wait 3 more months (March) to be sure that she keeps eating and taking her meds by mouth and then he will take out the tummy tube….can’t wait for that! Laney can’t either….her growing tummy is being irritated by the button.
Her sodium has been pretty stable since they started her on the new med. She doesn’t have to go back to see the oncologist until January 8th!
She will see the ophthalmologist on January 3rd. Her vision seems to be getting better. She can see things a little further away now but it’s still somewhat worse than it was before radiation. She’s still having the problem with her left eye…..it seems to be much more pronounced when she first wakes up or when she’s pretty tired. We’ll find out what they want to do soon.
Laney’s MRI is tomorrow (12/21). Scan time is nerve racking no matter what your expectations might be! I saw that a few others are getting scans this month….one of them said that “Scan-ta Clause is coming”!!! I thought that was cute.
This next week or so will be filled with family, friends and fun…..hopefully not too much aggravation since Santa is running rather late on gift buying! This year is a little different though…..after this past summer, we are just happy to be together!
Please continue to pray for Mathew and his family (site name: mathewjgliddon). The results of the latest test showed some decline in disease but not nearly as much as the doctors wanted. They will have to begin an even more aggressive protocol after Christmas.
We wish you all a very Merry Christmas and a Happy New Year.
Love and prayers,
The ‘Baums
Saturday, December 1, 2007
Well, we were supposed to have an MRI on Friday. We didn't get it though. Since she has diabetes insipidus, she will have to have her sodium checked before they put her under. If the sodium is too high or too low, they won't put her under unless the reason is emergent. Since this was just a check up MRI, they will just reschedule it. We don't have a date yet but it should be within the next couple of weeks.
Her sodium was too high yesterday. We went to the oncologists office early (we were supposed to go at 130). They had to pull some more blood but her port gave us some trouble again and we had to put some special stuff in it (TPA) and wait for the blood to start "flowing" again. Dr. Stapleton spoke with the endocrinologist and they decided to change Laney's DI med to a nasal spray instead of a pill. (that nasal spray went over well...."here Laney, let me stick this up your nose and spray it.") They said it was better soaked up by the body and would keep her sodium leveled easier. Since they are changing the med, they want to see her every few days to make sure the levels are good so we have to go back Monday afternoon.
The doc also wants to see about getting her "tummy tube" out. It's the Mickey button that we use for feeds and meds. She doesn't need feeds anymore and we are getting her to take the meds by mouth.....and by nose! Hopefully after the first of the year we can get that out.
We also talked to her about Laney's left eye. It lags some and sometimes "sticks" in one position (while the other eye moves) and the lid doesn't always close correctly. She said that this is caused by the tumor's pressure on the nerve. This can be corrected by surgery but they wait at least one year after treatment (which is up in April!) to make sure the tumor is stable (no growth or regression). We will see the ophthalmologist in January and will talk with him about it.
We went to the children's cancer center christmas party on Friday night. That was a great night out for all of us. Laney was pooped....her feet hurt because of all the walking that we did during the day but she was happy doing crafts (of course!) and when Santa came, she was pulling me along to go see him! We were standing in line with a friend, Hannah, and she was nice enough to let us go before her...Thank you, Hannah!
Next week we see the oncologist on Monday (12/3), PT on Tuesday (12/4) and Thursday (12/6), and children's cancer center night Thursday night.
Please continue prayers for Mathew (caringbridge site name mathewjgliddon) and visit his site for info on what's going on for specific prayers. They have just begun their treatment for the relapse and have quite a road ahead of them.
Love and prayers,
The 'Baums
Wednesday, November 28, 2007
Just a short update for now. Things are going well for us this week. We got through the weekend! Laney is doing great in physical therapy. She has PT tomorrow (11/29) and the MRI on Friday (11/30) with an oncology appointment after. Also the children's cancer center's christmas party is on Friday night.
Please say some extra prayers for Sam (site name: samanthalee)....she's having a bit of a hard time.
Also extra prayers for Mathew Gliddon (site name: mathewjgliddon)....he is about halfway through treatment and they just found out that he has relapsed.
Wednesday, November 21, 2007
HAPPY BIRTHDAY BIZ!!! SWEET 16!
Crazy stuff going on in the last week! We went to the endocrinologist on Wednesday (11/14) just for a check up. Laney had a little cold and seemed a little tired. The doctor asked us to take a “quick jaunt” over to the ER to get her checked out because he was a little concerned that her abdomen seemed to be tender and her heart rate was high. So our “quick jaunt” was about 6 hours but she was fine and all her counts were good. We did find out that because of the adrenal insufficiency, we will need to watch her when she gets sick. We will have to increase the hydrocortisone that she is on. They said that the level is good for everyday stuff but during illness she will need more to be able to overcome it. I was hoping this feeling of being hyper-crazy about germs was going to be over once she was off the chemo and all….I guess not so much!
Laney and I weren’t able to go to the church thanksgiving dinner on Wednesday (11/14) but we did get to go to the one at the children’s cancer center on Thursday (11/15). Great food, great company! We all had a nice time there.
Physical therapy started Tuesday (11/20). Miss Julie said that Laney was looking good….even stronger than she was when she saw her before. We are doing stretching, walking, crawling and arm exercises at home and next week they will begin working on more challenging stuff at PT…..crawling through tunnels and things that will help Laney to start feeling more comfortable in unfamiliar surroundings. So she won’t get so “freaked out”!!! Laney’s words! PT will be every Tuesday and Thursday.
This week is going to be extremely busy for us…..but a lot of fun too. We will be having Thanksgiving dinner at Aunt Barbara’s house on Thursday. Thanksgiving dinner at our house on Friday…because we have to have all those leftovers!! Then on Saturday we are having a birthday bash for Elizabeth. She wanted a Spanish theme so we will have lots of Spanish food leftover too!
We’d like to take the time to thank all of you. Your friendship, prayers, thoughts, time, donations and everything that you all have given to our family means more than we could ever say. We are truly blessed to have each of you touch our lives. May God bless you all as He has our family.
Love and prayers,
The ‘Baums
Wednesday, November 14, 2007
Little update....Laney has caught a cold. :o( Poor thing hasn't really been out of the house (socially) in months and she finally gets out and catches a cold! She's feeling pretty yucky today so tomorrow nights CCC dinner is questionable at best for now.
Monday, November 12, 2007
Laney is doing well. She’s walking, talking, eating and even sleeping some! We can’t believe it sometimes when we wake up in the morning and haven’t heard a peep from her all night. We race into her room and of course she opens her eyes and says “Is it morning? Can I have some cereal for breakfast?”!!!
We’re starting to get an idea of what she can see. Seems to be pretty much “figures” and dark colors until you get pretty close to her. But she’s smart and knows voices and remembers how things looked and unless you are really paying attention, you might be fooled into thinking that she can see fine. She does pretty good at looking at you when you are talking to her….even seemingly looking into your eyes. We are blessed each day at the things that she is doing.
We finally got the school stuff straightened out. She is correctly enrolled in the homebound program. Now we sit and wait for the meeting. Hopefully that won’t be too long.
We all went to church this weekend! Laney was able to walk into church for both morning and evening service. Everyone was very happy to see her. Next Sunday we are going to try Sunday school too which is before the morning service.
This week is pretty busy and I think it only gets busier the rest of the year. Wednesday (11/14) Laney has an endocrinology appointment and that evening we are having our church Thanksgiving dinner. Thursday (11/15) Laney has her first real PT appt and then an oncology appointment. Also that night is dinner at the Cancer Center. There’s a few other things happening too but I won’t bore you with the details!
Next week is filled with appointments, Thanksgiving, and a few birthdays (one of which will have a party!)
Love and abounding prayers,
The 'Baums
Tuesday, November 6, 2007 12:11 AM CST
We are all doing better this week. We’ve been able to get a couple of things that Laney is able to play with. Some days it seems like she can see some things…other days it’s like she can’t see anything at all. She has an appointment set up with ophthalmology but not until January. Course, that is only a couple months now isn’t it?!
We were able to go to the Cancer Center dinner on Thursday (11/1). Laney had loads of fun. We went without her wheelchair! She is able to walk with assistance now. She’s learning a lot of sounds and the way things feel. She’s doing very well on finding things while she’s eating, playing, etc.
The oncology appt (11/2) went well. They actually want us to talk to endocrinology about Laney being too hungry! All her counts are looking good though. We will see oncology next Friday (11/9) just for a check up. We will see endocrinology the following Wednesday (11/14).
PT was today (11/6). They did her evaluation and she did pretty well. She will be going 2 days a week. After we get her up and walking independently, we will start looking into getting her some occupational therapy as well.
I think that we are going to try to venture Laney to church this week. She really wants to go but we’ve been leery since she is so dependent. Now that she’s walking pretty well, I think she might be able to make it in the nursery. It will be great to get back to church as a family….we’ve been going at different times so that someone can always stay home with her.
Love and Prayers,
The ‘Baums
Monday, October 29, 2007
Frustration: a feeling of dissatisfaction resulting from unfulfilled needs or unresolved problems.
Laney is frustrated by being bored. We are frustrated because we can’t seem to help. The biggest problem is Laney’s mental abilities are so far beyond her physical abilities that she gets upset because she can’t do something that she used to do. The computer games, crafts, painting, stamping, card games, etc. Even simply getting up and going back and forth to her room is a source of frustration. As much as she wants to, she can’t just get up and go.
Her next oncology appointment is on Friday (11/2). She has the first PT appointment on Tuesday (11/6).
There is a Pediatric Brain Tumor Foundation event this Sunday (11/4). It’s called the Sarasota Ride for Kids. Kids with BT’s and their families are paired with motorcycle riders around the community and get to ride around on the motorcycle. The event is a fundraiser but is free for BT families. We are going to try to go…..not to ride but there are a few other things going on there as well.
Prayers for patience and guidance,
The ‘Baums
Tuesday, October 23, 2007
Clinic visit today was good. We didn't get the sodium or cortisol levels before we left but haven't heard about any problems so far. Her other counts are good though.
We were able to go to the fall festival on Sunday and see most of our peeps. Aside from being obnoxiously hot, it was some good fun. We weren't able to make it to Lil' Tales but hopefully we will be able to go to the CCC dinner this Thursday (10/25).
Our next clinic visit will be next Friday (11/2). We have PT evaluation on Tuesday November 6th. They will assess her and see how often Laney will need PT. Her next MRI will be on Friday November 30th.
Love and Prayers,
The 'Baums
Thursday, October 18, 2007
Laney is doing very well. Ms. Jackie (vision teacher) came by and brought a brailer and paper and a few other things for Laney to start using. Laney has been talking a lot about being able to see with her hands! We did find out that she has some vision. So long as lights are bright and what she’s looking at is right in front of her face.
We had a clinic visit on Monday (10/15). Laney’s port has been giving us a bit of trouble the last few times we’ve needed to use it. It flushes but won’t give any blood back without a lot of time and work at it. Once it started working we found that her sodium was perfect. The day got even better when Dr. Stapleton was talking and listening and checking Laney out and then turned to me and said “Isn’t this GREAT?!” My heart skipped all the way home!
Our next clinic visit is on Tuesday (10/23). We are just getting blood work to check sodium and other levels. Hopefully her port won’t give us too much of a problem. We’re hoping to make it to Lil’ Tales that day too but there’s a couple of appointments we have to make that day.
We’ll be following up with an ophthalmologist visit as well as a visual field test to try to find out exactly how much and where Laney has vision. We’re also still trying to get PT set up as well as homebound.
This Sunday (10/21) is the fall festival for the CCC. We are going to try to make that this year. I think we’ve not been able to go any other years and have heard it’s loads of fun.
Love and Prayers,
The ‘Baums
Friday, October 12, 2007
We are home! Laney is eating and drinking and talking and laughing. It’s been quite a while…so good to see.
We are going to be starting physical therapy soon. We need to get her back up on her feet and walking. We are working a little bit with it at home and she’s already starting to get strength back into her legs.
She still seems confused sometimes. Now though, we’re not sure if the confusion is caused from some memory loss or because of the blindness or a little of both.
Our biggest challenge now will be adapting to the blindness. She’s frustrated and gets a little teary sometimes when she doesn’t understand why she can’t see anymore. Most all of her toys require her to be able to see to play. We’re looking at some resources to get some different things in the house so she can play. She’s already complaining of being bored!
We are working with homebound to start having a teacher come out. We’re hoping to get some visual impairment help through them…that will be tremendous for her. We should find something out about that within a few weeks.
For now we have an appointment with oncology on Monday (10/15) for a check-up. They are talking about doing finger pokes every few days to check her sodium, at least at first. Hopefully that will be a short time!
Thank you all again for all your prayers. God has truly blessed us. There is a reason for the blindness of which we may never know but we will work through this with His guidance as well.
Love and Prayers,
The ‘Baums
Wednesday, October 10, 2007 10:31 AM EDT
Delaney is getting better and stronger every day! Thank you, Jesus!
They seem to pretty much have her pain under control. We were just told that they feel her sodium is relatively stable so they are sending her home tomorrow. She will need to go to the clinic for sodium checks 2-3 times/week…at least at first.
We are hoping to have physical and occupational therapy scheduled once or twice a week to help her get stronger and back (literally) on her feet. We’re also looking into getting some homebound school in.
Her eyesight seems to be pretty bad. As she gets stronger she’s letting us know what she can/can’t see. It doesn’t seem like she can see too much….especially anything distant. She can tell when lights come on. She says she can see your face if you’re directly in front of her, within a few inches. But it seems difficult for her to focus. She’s doing a lot of things by feel right now. We’re very glad that we had her start learning Braille last year. We were hoping she wouldn’t have to use it, but this is why we did it. She will definitely need to continue that this year.
Thank you again for all the prayers….
Love and prayers,
The ‘Baums
Saturday, October 6, 2007 10:14 PM EDT
We were able to get up to the floor today. Room number is below. It's a real private room!
Laney has been doing pretty well today. Another day of sitting up, playing, laughing. Today she started singing and turning over from side to side on her own. She also asked for some gatorade and to eat. She ate part of a graham cracker. Not much...but a start.
They are planning to keep her at least a few more days. They are still trying to get her sodium levels straight with the meds so they are not giving her too much or too little. Hopefully they will get it right soon so we can go home.
Thanks again to everyone for all the prayers.
Love and prayers,
The 'Baums
Thursday, October 4, 2007 11:00 PM EDT
Laney's been doing well. She's talking and smiling and laughing and she sat up on the side of the bed and held herself up pretty well.
She had a problem with her jaw locking again today. She had this problem months ago so this is the first time in a long time. They figured out that what is happening is her jaw is dislocating when she yawns. There's nothing really they can do except to put it back in it's place or let it go back naturally.
It doesn't seem like she's able to see much. You have to be pretty close to her face for her to see and focus on you. We will have to get visual field tests and stuff like that once Laney is back on her feet and able to really discuss what she can and can't see.
Hannah Deal passed away this afternoon. Please pray for strength for the family. www.helphannah.org
I can't tell you how much cancer sucks.
Love and prayers,
The 'Baums
Visiting hours to see Laney are from 9am to 7pm. No one is allowed back between 7-9 am & pm because of shift change. We are usually in the family waiting room or getting a quick bite during those hours.
Wednesday, October 3, 2007 9:19 AM EDT
The rest of Monday (10/1) and yesterday were stable. They are still trying to level out the water/sodium thing going on but they are getting closer. Laney is going to be on a “water restricted diet”. Since her body is unable to level things by itself, we will need to manage it through some meds and a careful eye on fluid intake.
She was off the sleep apnea machine all day yesterday (10/2) and last night. Dr. Stapleton said that we could go home with it but she would rather Laney not need it by the time she goes home. She was also awake pretty much all day yesterday. Her speech was a little more nasally than it was the other day but hopefully that will get better.
Laney seems to be having a bit more pain than she was. The thought is that she is just feeling it more since she is cognitive and coherent now. PT and OT are going to be a long road!
For now the word is that they are going to keep her at least a couple more days in PICU to be sure that they have the water/sodium levels correct. After that we may be released to either go home or at least upstairs to a room.
Overall, Laney is doing great. The tumor is shrinking some and releasing pressure on vital parts of the brain. We’re still not sure what she’s able to see, but for now that can be side tabled. We are just blessed to have her with us. Thank you for all your prayers.
Love and Prayers,
The ‘Baums
Visiting hours to see Laney are from 9am to 7pm. No one is allowed back between 7-9 am & pm because of shift change. We are usually in the family waiting room or getting a quick bite during those hours.
Monday, October 1, 2007 2:56 PM EDT
Happy Birthday Nick!
As good as news was on Friday, today’s is rather topsy turvey. We’ve known for a while that any change (good or bad) in the tumor could bring on endocrine and other problems because of where the tumor is situated. They are diagnosing Laney with central Diabetes Insipidus (central just means the location/reason which is damage to the hypothalamus/pituitary. DI for Laney means her hypo/pituitary are not releasing the hormones that regulate sodium levels.)
Laney has had a couple of seizures today (10/1) brought on by low sodium levels. She was on some medication for the high sodium problem she came in with. They are trying to get the levels stabilized. They had to put in a catheter so they could tell exactly what her output is and test it easier. (They did just have pull-ups on her.)
They are watching her stats closely as they fell after the second seizure. So far they have been stable. She’s back on the sleep apnea machine just as a precaution. She was off of it most of the day yesterday (9/30) and all night last night.
For some better news…..The LP results were all negative for infection and disease. Laney was up yesterday and playing with a little electronic game for about 45 minutes. She was whipped after that but she was sitting up and talking and of course wanted to go home! They are getting her some occupational and physical therapy…. Massages to help with the muscle soreness and get her up and moving.
Mom and dad are working in shifts…24 at the hospital, 24 at home. You are not supposed to sleep bedside in PICU. I believe they mean this since they only offer the hard chairs! Actually, we were blessed to get a better one. Not a recliner but better than the short little hard things! It’s hard to fall asleep sitting there with the hum and melodious beeps of the machines…but we do manage sometimes (snore)! We were also blessed to be next to a wall with a TV on it.
Love and Prayers,
The 'Baums
Visiting hours to see Laney are from 9am to 7pm. No one is allowed back between 7-9 am & pm because of shift change. We are usually in the family waiting room or getting a quick bite during those hours.
Friday, September 28, 2007 5:10 PM EDT
There is good news tonight. The results from the MRI are very good overall. The tumor looks to have shrunk slightly from the MRI just about a month ago!
Laney has been awake and talking and saying things that sound very much like her! Her speaking seems a little easier to understand....not as slurish and nasaly.
At this point they are watching a few things. One is some hormone levels which they believe could be attributing to her lethargy and general being over the last few weeks. Especially since they've been giving her some hormones and she is more interactive.
Another thing they are watching is her breathing. While she is awake, everything seems to be fine. But once she starts going to sleep she tends to 'pause' her breathing. They have put her on a sleep apnea machine which she is so very happy about. And by happy I mean she hates it!! But when she sleeps with it, her stats (oxygen, respiration rate and heart rate) stay up.
The last thing is that on the MRI today the Dura (the lining around the brain) lit up a little on the scan. This could be a false positive but with the fever and breathing they want to make sure there is no disease or infection there. They did a lumbar puncture today but pathology will not be back until Monday (10/1).
We will be here at least through then but hopefully home soon after. Thank you so very much for all your prayers....
Love and prayers,
The 'Baums
Thursday, September 27, 2007 9:45 AM EDT
Laney is doing better overall. They are trying a hydrocortisone treatment for the sodium problems. They want to do it 3 times a day for two full days so it looks like she will be in through Friday (28th). Hopefully we will be out this weekend.
Last night they put her on a sleep apnea machine. Laney ‘pauses’ in her breathing when she is asleep and her stats go down so they wanted to see how she would do with the machine. She slept well all night and her stats stayed up so we may be going home with one of those.
We spoke with Dr. Stapleton yesterday. Her feelings about the CT that we got on Tuesday night (25th) were good. She said that the tumor in the CT looked stable…no growth. She seems to feel the same as we do…that we are still in a window of time where things for Delaney could get better. She also said she cannot say for sure that Laney will get any better even if the tumor shrinks. The damage to the brain could be permanent and where we are now could be it. They are doing the MRI today. Hopefully we will know much more about what is going on by tonight.
We saw Hannah and Lisa yesterday. Hannah was doing well enough to leave so check on her and see how they are doing (www.helphannah.org).
Love and Prayers,
The ‘Baums
Wednesday, September 26, 2007 12:54 AM EDT
Well....we are in the hospital today. Delaney decided to spike a fever of 102.4. When we called the doctor they asked to bring her in. When we got her here, her oxygen was down and she wasn't breathing all the great. They've got her on oxygen now and she's breathing on her own. They are treating her for pneumonia...they believe she's got some in her right lung.
She's in PICU so they can monitor her for a while. Keep tabs on her breathing and her sodium is quite high as well. They are looking into getting her some meds to keep that down.
The ER doctor mentioned that the oncologists believe these problems are caused by disease progression. Before we believe that, we would like to hear it from Dr. Stapleton. And we'd also like it confirmed by an MRI. Her MRI is scheduled to be in just a couple of weeks. If this "progression" is bad enough to cause these symptoms, then is should be bad enoug to see. We are not ready to give up without knowing for sure.
Hannah Deal is right across the room from us. Haven't seen her family yet but we got in the PICU pretty late. I did find out that Hannah may be able to get out of here soon...check out her site! www.helphannah.org
Love and Prayers,
The 'Baums
Monday, September 24, 2007 11:39 PM EDT
The big girls and I (mom) were able to go to a Lightning game on Saturday (9/22) night. We were given tickets from the Pediatric Cancer Foundation. It came at a great time….the big kids are feeling the stresses of our situation so we were looking for a way to just get them out for a while this weekend. Thank you PCF and Brad Richards for the use of the Sweet Suite!! Brad came up and met with all of us in there too. I got the girls to take a picture with him and will put it on the page soon.
Laney has been about the same. Can’t seem to get rid of the ‘fluid’ cough though. The nurses were talking today about maybe putting her on some steroids to help clear it up but we haven’t heard anything more about that yet. Her pain comes and goes although now she complains much more about the joints in her legs (hips, ankles) than the neck pain that was so prevalent before. I’m hoping that is good news.
We are trying to exercise her a little each day….just stretching her legs and arms and helping her to sit up and try to move around. We’re still hoping on the physical therapy soon.
Hannah Deal was admitted into the hospital this weekend…she is in All Children’s PICU. It looks like they will be keeping her through the end. Please pray for her family for strength in making the next very difficult decisions and what comes of those. www.helphannah.org.
Love and Prayers,
The ‘Baums
Tuesday, September 18, 2007
Things are about the same. We have Laney’s bed out in the living room so that she’s out with us all the time. She still is having some memory problems…..asking to go out in the living room or asking to go inside the house (I guess thinking that she is outside). She says hello to people like the plant that is hanging up in the living room. Apparently, his name is George Ivy. Yesterday she wanted Joe (from Blue’s Clues) to give her a bath. So, if anyone has his number, can you give him a call? Maybe ask him if he can take a minute away from Blue’s Room to come see Delaney!! :o)
It’s a little heart breaking to see…she was so cognitive before….so bright and smart. Her speech is hard to understand now and she gets frustrated when we can’t understand what she’s saying. She also gets frustrated cause she can’t move where she wants to move. We’re trying to get her pain under control so they can start some physical therapy. I am very frustrated with that because one of the reasons she is in pain is because she’s not moving so when she moves it hurts. She needs to start moving so it will start hurting less but they want her to stop hurting before the physical therapy……so….chicken??? Egg????? UGH!
So pain control…they put her on a Fentanyl patch and Choline Magnesium Trisalicylate. Sometimes it seems to work, other times…not so much. She’s also on a cough med and a breathing treatment. A hospice nurse comes by every day to bathe her and check her out. She’s still running fevers on and off and throwing up every now and then and her neck still hurts. We got some t-shirts for her that we cut up the back so that we don’t have to put it over her head.
Our next MRI is on October 12. We have an appointment with oncology on that day as well. Endocrinology called and wants some blood work done so Hospice will be doing that in the next couple of days. It’s pretty great that they can come and do it right here at home.
Remember to eat at Chili’s on Monday (24th)!
Love and Prayers,
The ‘Baums
Tuesday, September 11, 2007
I am not looking a gift horse in the mouth…..Really. But I suppose I should be more defined in my prayers. I prayed for Laney to be more wakeful and to want/have the desire to get up and do things. I might have detailed that with “during daylight hours”!!! Laney was VERY awake last night. “I want to sit in my chair”, “I want to watch a movie”, “I want some apple juice”. This started around midnight and went on till at least 3. Then she tells dad and grandma this morning that the reason she couldn’t sleep is “because mommy was snoring all night”. **Note to self: Detail your prayers with bullet points!
Today we went to the ophthalmologist. Surprised she was still awake with me keeping her up all night! Anyway, he said that there didn’t look to be any swelling or pressure being caused from the swelling/growth of the tumor. He can’t really tell if any more damage has been done on the nerves and is not sure if her sight has gotten any worse because it seems difficult for her to focus. Whether that was caused by her state of mind or pain meds or she just really can’t see, we will have to wait and find out. He wants to see her again in about 6 months.
We also popped by the Cancer Center for Lil’ Tales this morning. I told her if we got out of the doc’s office soon enough and if she felt like it, we would go. So she said she wanted to go. We stayed for about an hour before she said she wanted to go. I think it was good for her to get out and be around the people that she used to hang out with. I’m hoping it will give her even more of a will to want to start getting up and doing things…..DURING DAYLIGHT HOURS!!!
The wheelchair worked out perfectly, by the way…Thank you Hospice! We should be seeing a Hospice nurse today (9/11)and the Hospice doctor will be coming out on Thursday (9/13) morning.
Love and Prayers,
The 'Baums
Tuesday, September 4, 2007
Laney is doing pretty well. She is more wakeful than she was in the hospital. She’s asked to sit up and tried to play a card game but couldn’t quite get everything coordinated enough to play. She’s still a little jerky and weak (and maybe can’t see so well?). She asked to eat too. She ate two cheerios and a goldfish AND kept them down. I understand that may not seem too thrilling to most of you, but it is VERY exciting to us! Sometimes it IS the little things!
She is still having some memory issues….sometimes unsure of where she is. Her talking is difficult to understand and she has to repeat most of what she says. It’s very slurred and nasally and she sometimes gets frustrated with us when we can’t understand. But at least she is talking and helping us to understand what is wrong.
She is trying to get up and walk but she is still so weak from lying around. We work with her to try to strengthen her muscles and are looking at getting some physical therapy for her. Hospice is getting us a wheelchair until Laney is up to walking around on her own so perhaps we can take her places if she’s up to going.
We went for a checkup today. The doc's office took mercy on us since dopey mom showed up two days early. Yeah, the appoinment was supposed to be on Thursday! Smart....and when I say smart, I mean DOH! Anyway, her counts are great. Now there won’t be regular (weekly) doctor’s visits. Since we have Hospice they can take care of most of our needs. The doc’s office made it clear that we can call them anytime for anything but that Hospice is there to help and make it so we don’t have to drag her to the clinic all the time. We are setting up an MRI around October 5th to check the tumor regression. The doc’s will see her that day just to check her out. We are hopeful by then she will be up and walking around.
She does have an eye appointment coming up (9/11)….We’re not sure what she’s able to see anymore. At the checkup today the doc said her right pupil was a little slow to respond to the light. She doesn’t seem like she’s tracking things and doesn’t look to us like she is really watching anything. During the attempted card game I asked her what a couple of cards were and it seemed like she couldn’t see it. We are very anxious to see what’s changed in her eyesight.
We have oxygen at home for Laney that we are mainly using at night just for our ease of mind. The guy brought the unit in and started explaining how to use it. Then said, “No open flame within 25 feet of this unit!” I quickly removed the candles that I have ALL OVER the living room! (Good thing we don’t have a gas oven, by the way!) Then I went out and bought a wipes warmer…..those wipes are so cold and Laney’s back into pull-ups now so I wanted to try to do something nice. When I got home I decided to read the stupid little pamphlet in the box. Guess what the stupid little pamphlet says…..“do not use in oxygen enriched environments”…..WUWT???!?!. What do I do with it now? I could put it in the next room I suppose…..hey kids….bring me a couple of wipes please?!! And by the time they get to me, they are cold!!! Fantastic…..and by fantastic, I mean sucks!!
Love and Prayers,
The ‘Baums
Friday, August 31, 2007 (1:00pm est)
We are going home today! Laney is still about the same (fevers on/off, sleeping a lot) but since she is off the IV pain meds we will be able to care for her at home. She will have to go home on oxygen but hopefully she will be off of that soon.
We found out in talking to Dr. Stapleton that not only is there necrosis in the tumor but the cystic part is actually a little smaller too. The doctor is very hopeful that all of this means the proton radiation is beginning its effects. This can continue for the next several months! We will be scanning again within the next couple of months to keep up with what is going on with the tumor.
In the meantime, we will have Hospice in to help out with a bed in the house, oxygen and general care. Laney will have regular appointments for check-ups with Dr. Stapleton…... next weeks is on Friday (9/7) She also has an appointment coming up with the ophthalmologist (9/11) if she is up and able to communicate enough. She was supposed to have a physical (for school) with her pediatrician on Tuesday (9/4) but there is no sense in doing that right now since she is not up on her feet.
We are getting somewhat mixed signals from the doctors, nurses and such. Many are thinking that this is the beginning of the end. Some are hopeful that the tumor is dying and therefore she will get better. While we are exceedingly realistic people, we don’t understand the pessimism. If the radiation is working then it is very possible that she will get better. Of course, we have no idea what is in God’s plan. We can only pray for His will to be done here. Whether God decides to let Laney continue to serve Him here or He needs her with Him, why should we be so pessimistic? Either way……things will only get better for Laney. And that is what we want.
Love and Prayers,
Brian and Kara
Wednesday, August 29, 2007
We are still in the hospital. Laney is doing about the same. She’s still running a fever on and off. We did get to talk to the doctor and there is mixed reviews but an overall happy feeling about the MRI on Monday (8/27). The radiation, it seems, is working some. There are signs of tumor necrosis (dying) which is very good news. Thank you, Jesus.
The mixed news is:
•There is evidence of hemorrhage (bleeding) within the cystic part of the tumor most likely caused by one of the new treatment drugs. We knew at the beginning of this treatment that this was a possible side effect. Since it happened within the tumor there will be no devastation to the brain caused by this bleed. However, she will no longer be able to continue on the treatment because this makes her very high risk for a brain bleed.
•There may be an area of new spreading/growth which the doctor is not sure was in the radius area of radiation. She will have to research Laney’s file further to find out if this new area was included. If it wasn’t then we may need to do something else for it, if it continues to spread. This will most likely be more chemo as we believe she's had all the radiation she can. The doctor is going to find that out too.
Other than that they are looking at getting Laney off of the IV pain meds and the oxygen. They are going to try giving her Valium (parental units might need to take that - ha!) and see if that can help her with pain and relaxing. They have started weaning her off of the oxygen to see if she can hold it on her own. They don't want to have to send her home on oxygen if they can help it.
We’re also looking at physical therapy to start in the hospital and continue out patient to try to get her (literally) back on her feet. She may need some occupational therapy as well but the therapists will need to evaluate her.
She has been able to gain a few pounds in the hospital. Between her being able to keep it down and doing nothing to spend the energy, she's up almost 4 pounds or so.
Hopefully, Laney will be feeling well enough to get out of the hospital in a few days. We are hoping by this weekend but we’ll see what happens.
We are in a “private room” now. For those who don't know about All Children's, most "private rooms" are private because they don't put a second patient in the room! So there are no Jerry Springer shows this week for our entertainment (or appall-ment, depending on how you see it!). And no more switchy games either!
Love and Prayers,
The ‘Baums
P.S. Visitors are welcome any time. We can't promise that Laney will be completely wakeful but everyone is welcome. So long as she is in the hospital the schedule is as follows:
Grandma -- Monday & Tuesday 7am~8pm
Dad -- Tuesday night through Thursday till ~1pm (also Sun & Mon nights)
Mom -- Thursday from ~1pm through Sunday ~9pm
All of us (mom, dad and kids) are there every evening from about 730-10pm.
I updated some photos too...I can only do 3 at a time, unfortunately.
Monday, August 27, 2007
Delaney is still in the hospital as of this morning (8/27). They haven’t found any infection yet but her fevers continue. The fever has been as high as 102.7 but pretty much range now between 101 and 102. They said it’s possible that the fevers are caused from the pressure on the brain (neurologic fever) rather than her actually being sick.
The doctors started Laney on Oxycodone when she was first admitted to the hospital but changed her to morphine when it wasn’t doing anything for the pain. The morphine was continuous with a button for severe pain. She pretty much started sleeping all the time with no wake time. We asked them to decrease the continuous so that she would maybe start waking and wanting to do something. They are going to wean her off and just keep her on the button for pain and see how that goes. A lot of times when she is wakeful she is “forgetting” where she is, often asking where she is. She told one nurse that she was getting ready to go home! On Sunday (they started lowering the morphine) we got her up and sat her in the chair for a little bit. She started pointing to the corner of the room and when we asked what she wanted she said “I want to go out there”. “What’s out there”, we asked. She said, “the living room”. Hmmmm….when we reminded her we were in the hospital she seemed to get a little depressed and just said “oh”.
Laying down so much has caused pneumonia to develop so she’s on breathing treatments now as well. She is breathing much better than she was a couple of days ago. She is on oxygen all the time now too though she’s not too happy with that thing in her nose! We started calling it her fresh air so she would start leaving it alone and get used to it.
She started having diarrhea as well and they weren’t sure if it was caused from all the antibiotics they are pumping in her or from the chemo or a virus or what so of course they are doing all kinds of cultures on everything.
She got a CT last Friday (8/24) that they said looked the same as the one she got a couple of weeks ago. They are doing an MRI today (8/27) of the brain and neck to get a better look and see if anything has changed in the past few weeks.
We spoke with Dr. Stapleton (sp? new brain tumor specialist) again on Friday (8/24). She is concerned about the pressure on the brainstem because of how important the brainstem is. She mentioned that we are pretty much fighting for time right now. Laney’s brain has adapted over time to the pressure that the tumor is causing but, she said, the brain can only take so much and we are possibly nearing that “so much” point. With the pain as much as it’s been and the tiredness, vomiting, parkinson’s symptoms and all it is pretty clear that time is going to be what we need. The doc is supposed to be speaking with the neurosurgeons to talk about risk in surgery but to maybe go in and drain as much of the cystic portion of the tumor as possible. This will relieve some of the pressure and potentially win some time for this new treatment (chemo) to work.
The comic relief part of our week has been the Jerry Springer show that was next to us the first few days we were there. Just so all of you know….. pregnant 16 year old girls KNOW EVERYTHING about life, parents are stupid and not needed! I have to say some of the things that were coming out of their mouths could make a preacher cry and a sailor blush. Good grief. All I can say is thank you God for the children that you have given me.
The room number has changed. I won’t go into the details of the fiasco it was between last night and this morning in the “where in the world are we going to put Laney” game we apparently signed up to play. I don’t remember signing any contract for that game show but just this morning, we were in THREE different rooms. Fortunately, it was just the adults that were playing the game as Laney was in the MRI at the time! We have now stamped our feet and said no more moving but we said that last night too and they obviously chose not to listen! Anyway, room number is below.
Love and many Prayers,
The 'Baums
Wednesday, August 22, 2007
Laney started running a low grade fever yesterday (8/21) and this morning it was higher at 102.2. We had scheduled an appointment yesterday for today (8/22) because we wanted to look at getting something stronger for the pain she was having….codeine was not cutting the pain and the doctors didn’t want her on Tylenol with codeine because of the chance of masking fever. Anyway, it was good that we had set up the appointment…..
There is a new brain tumor specialist that has joined the practice at All Children’s. We met her today and she seems very proactive….. positive yet pragmatic. Laney has to go in the hospital for the fever but while she’s in the hospital the doctor wants to take the time to get everything else under control……the pain, vomiting/nausea, constipation, appetite, etc. She believes in the new therapy that Laney is on but was completely open with us about the side effects and how new the therapy is especially for use in Laney’s type of tumor. We’ll have to have scans (MRI) more frequently because they need to monitor her closely….she will have one while she is in the hospital. The doctor is going to have ophthalmology, nutrition and endocrine consults while she is in also.
Laney’s counts were pretty good this week. ANC is 5400, HGB is 9.2 and platelets are 254. The room number is below. They did not have any beds available on the oncology floor so she will be on the fourth floor. The 4th floor is good though, most of the nurses up there know Laney because of all the surgeries that she had towards the end of last year. She is a much-loved patient!!!
Penny, Nik’s mom (www.caringbridge.org/visit/nikkihawkins) is still getting Hannah Deal’s (www.helphannah.org) garden together with plants/flowers and manpower this weekend. Contact Penny if you can help in any way!
Love and Prayers,
The ‘Baums
Monday, August 20, 2007 9:20 AM
Laney is doing…..ok. About the same. She’s vomiting every day, now sometimes more than once. Still complaining of ‘neck pain’ worse sometimes more than others. When she’s up, she seems to have a little more energy to be able to play, color, paint or add stickers to her sticker book. But fades pretty fast and wants to rest.
We found out that the symptoms she has been exhibiting mimic Parkinson’s Disease. The part of the brain that PD attacks (hypothalamus) is the same part that Laney’s tumor is now infiltrating…..where most of the growth took place. She has most of the ‘onset’ symptoms of PD and several of the ‘secondary’. These are all the symptoms that we noticed coming up over the last couple of months as the tumor was growing…..involuntary movement, swallowing problems, gait/balance and incontinence among others. Some seem to have gotten a little better, others are about the same. Our guess would be that if the chemo is going to help, they will all get better over the next couple of months.
We met with Hospice on Friday afternoon (8/17). We wanted to see if we can get someone to help us out a few hours a day/couple days a week so that we didn’t have to go back to working completely opposite shifts. As giving as our employer is (we work at the same place) we are trying not to push it too much. (We fortunately have a couple of grandma’s that are willing to help out a couple of days a week as well!!! Thank you Grandma’s!!!) The Hospice gals that came out said that they will be having a meeting this week to see what they can do for us. They also will be getting to know us and putting things in order in case ‘the worst’ is to happen.
School starts today (8/20)! The big kids are off and…running?! Well, one is very excited, the others are….shall we say…not quite as excited! We were looking forward to sending Laney on this day but we are now looking at getting her into the homebound program. This is where a teacher will come into the home one or two times a week to keep the child on track.
The only appointments coming up is for blood work on Friday (8/24).
Feel like helping with a garden? Penny (Nikki Hawkin’s mom.... www.caringbridge.org/visit/nikkihawkins) is trying to help get Hannah Deal’s garden growing again. This hot Florida sun is wreaking havoc on it. Please see her website for info on how to help but they are looking for plants/flowers and manpower possibly this Saturday August 25th to get this garden going again.
Love and Prayers,
The ‘Baums
Thursday, August 16, 2007 12:30PM
*****Update****
Laney was able to come home today and seems to be doing very well. She woke up this morning in an extremely talkative mood! Our next appointment is Friday (8/24) for blood work.
Tuesday, August 14, 5:34pm
Our next plan is some very aggressive chemo. There have been a few children with tumors like Laney’s that have been on this treatment….of those we were told half had a very good result with the tumor actually regressing. The other half, the chemo had no affect on the tumor.
The chemo drugs she will be on are called Irinitecan and Avastin. The first drug (Irinitecan) the nurse said they affectionately call it “I-run-to-the-can” because one of its most common side effects is diarrhea! She said they just treat it with Imodium. The second drug, Avastin, can have some pretty serious side effects. For this reason the first treatment will be in the hospital and she has to stay for 24 hours to keep a check on any reaction to the chemo. So long as she has no bad reactions the rest of the treatments can be done at the doctor’s office.
Treatments will be every 2 weeks. After 4 treatments they will repeat the MRI to see what the chemo is doing. We are looking at mid-October to find out what the chemo does. The most current worry is going to be reactions/side effects to the chemo.
We will begin treatment tomorrow. We'll go to the doctor's office at 10am. They will access her port, check her counts then we are off to the hospital for a night's stay.
Our hopes are not abashed. Our prayers are continuous for God’s will to be done. Our only request is your continued prayers!
Love and prayers,
The ‘Baums
Wednesday, August 8, 2007 2:13 PM
The MRI they did this morning showed significant growth and spreading of the tumor. It is no longer a ball, it is spreading to the sides like "butterfly wings". The Onc's and NS's are bringing up the case at tumor board on Tuesday (14th). They will try to come up with the next plan for us. She may be able to come home tonight or tomorrow...Onc is checking with NS to see if they think she should stay. We will update as we know.
Just keep praying!
Love and Prayers,
The 'Baums
*****update****
Laney was able to come home today. She is resting for now. Tuesday seems forever from now.... especially when you have 3 great doctors looking at you and saying they have no idea what can be done next.
Tuesday, August 7, 2007
Laney is in the hospital today (7th). She started throwing up last Wednesday (1st), only once a day but every day she has thrown up. She also started really complaining about her head and neck and sleeping more over the weekend. She went in yesterday afternoon (6th). They did a CT but everything seems to be stable. Her counts are about the same as last week ANC 325, HGB 8.8.
Oncology came in today (7th) and they are not going to give her chemo. They are going to go ahead and do an MRI tomorrow because they are concerned about her pain and vomiting.
Since we had an appt with GI today, they are going to just come by the hospital to see Laney. A nutritionist has already come by and they are going to work with the GI to try and get her all straightened out with how much and what kind of formula to give her. We might be changing it to a ‘plus fiber’ one because since she’s stopped eating she isn’t having BM’s either.
She actually ate last night. She said she wanted bacon and goldfish so when it came she ate a piece of bacon and 3 goldfish. Then she said she was full! Not much but better than nothing. That's the first she has eaten by mouth in over a week.
So for now we pray and wait. Please pray for all our peeps in the cancer fight.
Love and prayers,
The ‘Baums
Sunday, August 5, 2007 12:30 PM EDT
Laney’s counts were not so good this week (31st). Her ANC was 400, HGB was 8.8. She only got a half dose of the [insert naughty word] chemo this time. She’s not eating at all and barely drinking. I think she is only drinking to wet her mouth. We’ve been trying to up her tube feeds but she’s still losing weight. She’s also been throwing up some mornings.
We saw the endocrinologist and he said she looks good overall. He wants to get new levels since she’s been off all the steroids and stimulants. When he gets them back he will decide on any meds that she might need to be on.
The Tuesday coming up (7th) she sees the gastroenterologist and the oncologist. The gastro will be happy she’s off the appetite stimulant. He’s wanted her off of that for some time. There was some difference of opinion between gastro and oncology and we as parents chose to keep her on it because we hated not seeing her eat. Now seeing the endo doctor and explaining some long term effects, we elected to take her off.
Please pray for Hannah Deal and her family (www.helphannah.org). They’ve had some difficult news this past week.
Friday, July 27, 2007
The last couple of weeks have been good. Elizabeth and Vivian went and came back from camp….they had a wonderful time learning and growing closer to God. This week was VBS at our church which is a very busy week. Laney had a lot of fun but was whooped by the end of each night. She went straight to bed and slept pretty well each night! Elizabeth, Vivian and Nick all helped out at VBS too. Last night (Thursday, 26th) was the last night for that.
Laney had good counts last week (17th) but this week’s were a little low….ANC 500, HGB 9.5. She still got a full dose of chemo which seemed to hit her a little harder this week than it usually does….she’s been tired and nauseous. We’ve noticed too that she’s extremely fidgety and much more sensitive to touch in the past couple of months. It seems she finds it difficult to sit still….she’s always walking around or if she is sitting she is wiggling constantly. She doesn’t seem to care for people touching her either and is getting worse each week with getting her port accessed and the tape taken off at the end. We sure can’t wait till we can get her off of that [insert naughty word here] chemo!
She’s not eating well. We discontinued both the steroids and the appetite stimulant so she’s not eating much at all any more. We have started her back on the tube food so that she doesn’t lose too much weight again. We have upcoming appointments with both the endocrinologist and the gastroenterologist to discuss better and/or different options
Coming up we have our regular oncology appointment Tuesday (7/31). Our first appointment with the endocrinologist also on Tuesday (7/31) (which, by the way, was incredibly difficult to get….I may as well should have wanted to request information on area 51). Cancer Center dinner night Thursday (8/2)…..this week it’s at the Florida Aquarium, sure to be lots of fun. The following week we have oncology and gastroenterology on Tuesday (8/7).
Love and Prayers,
The ‘Baums
Thursday, July 12, 2007
Sorry for the delay in updating. It’s been a crazy couple of weeks. Laney has been doing well for the most part. Her counts have been ok. Tuesday’s (10th) counts were ANC 4800 and HGB 9.5.
She has been having problems on and off with her jaw which we suspected was a side effect from the chemo. She was having pain and it was locking up. Last Saturday (June 30th) was the worst, her jaw locked up and didn’t unlock until the next morning. The oncologist decided to not give the chemo (on the 3rd) and see if things improved. She had one slight problem where it locked for a minute Monday night (9th) but nothing else. Tuesday (10th) they went ahead and gave her the full dose of chemo and scheduled her for a CT of neck and jaw next Tuesday (17th). They are thinking that the jaw problem is mechanical and not caused from the chemo. While we are not convinced of this, we will go along with the CT just to make sure.
Aunt Paula and Uncle Alan came in for the 4th of July week. They stayed with us along with their two little ones Allison and Ethan. We had a great visit, lots of food and fun! On Sunday (8th), they left for home and our two big kids, Elizabeth and Vivian, left for camp for the week. It’s eerily quiet in our house now!
Coming up…..Tonight (12th), there is dinner at the CCC which we are hoping to go to. The kids come back on Saturday (14th). Next Tuesday (17th) we spend all day at All Childrens for a breathing treatment, CT and oncology visit. Vacation Bible School starts on Sunday the 22nd which Laney is very much looking forward to.
Love and Prayers,
The ‘Baums
Friday, June 22, 2007
Laney has been well this week. Her counts are good…ANC 1100, HGB 10.3. School is great! Mosquitoes suck! She apparently has an allergy to them and of course, they love her. She gets huge golf ball size welts that are actually painful! We’ve started putting spray on her all the time. Even just going from the house to the truck…..it’s terrible! Since I know that there is a purpose for everything God made, when I get to heaven I am going to ask Him what the purpose is for the Mosquitos!!! I’m just wondering!
Laney had a great time at playgroup on Tuesday (19th) and we went last night (21st) for the family dinner night.
Elizabeth and Vivian are going to camp the week July 8th. They are looking forward to that. It’s called Centrifuge and it’s in North Carolina. This is supported through the youth group at church and hundreds of kids go to this camp from all over the country. It’s a great place for spiritual growing and many kids have come back with a new view on life where Christ has touched them. It’s a great place.
Please continue special prayers for Taylor Brightbill and his family. The diagnosis was an Oligoastrocytoma brain tumor. They were able to resect some of the tumor, enough that he does not need shunts for now. They will be starting chemo and radiation. Through Taylor’s mom Patty we met another family who have a daughter named Hannah (www.caringbridge.org/fl/hannahbannana) diagnosed with neuroblastoma, please add her to your prayer lists. And please continue special prayers for Hannah Deal, her website is above.
Love and Prayers,
The ‘Baums
Wednesday, June 13, 2007
Laney is doing well this week. She started summer school on Monday (11th) and loves it of course.
Our trip to Jacksonville was good. Dr. Keole (radiation oncologist) says Laney is looking well. We will be back to see them August 31st. We also saw several friends….our nurse Karen, and some of the anesthesiologists. All of whom were very excited to see her. She sang a song for them that she learned in school for the end of the year concert she was in…..
She sailed away on a sunny summer day
On the back of a crocodile
"You see," said she, "he's as tame as tame can be,
I'll ride him down the Nile."
The croc winked his eye as she bade them all goodbye
Wearing a happy smile
At the end of the ride, the lady was inside,
And the smile was on the crocodile!
We went to Kennedy Space Center on Saturday (9th). That was a lot of fun. Thinking that we could probably do it all in one day….we were wrong! We’ll have to go back and see it a few times.
The MRI is reportedly stable…good news! We will get to see even more what the radiation is doing in the August MRI. The neck pain is still there. There is some difference of opinion in the cause of the pain so we are doing a couple of things. One of the opinions is that there may have been some neck injury caused by the position during radiation treatment so we are going to see an orthopedist to see if there is anything wrong. Another opinion is that it could be just pressure where the cyst and shunt lie and/or could be irritation from the dying cells and radiation so we are starting her on a low dose of steroids to see if that helps.
Laney’s counts are ok….ANC 900, HGB 9.3. She has an appointment early next Tuesday (19th) because they want to do a fasting blood test and chemo after that. We might pop by the Cancer Center for Lil Tales too! There is a meeting next Thursday night that we will hopefully be going to.
We got a call from a long time friend of ours (Patty Brightbill) about her son Taylor. He was diagnosed with a brain tumor yesterday at All Childrens. The neurosurgeons at All Childrens are awesome so we know they are in good hands.They are doing surgery today so we don’t know much of what is going on yet. Please send prayers her way.
Love and Prayers,
Brian and Kara
Wednesday, June 5, 2007
Happy Birthday Daddy!!! (7th)
Today Laney's ANC is a little low at 400. HGB is 9.6, not too bad.
They did the MRI, they included her neck as well to see if they could determine a cause for the pain. The doc's did not see anything in regards to the neck. We haven't heard about tumor size or anything else. Waiting is so much fun...NOT.
Anyway, off to Jax on Friday.
Sunday, June 3......
Laney's counts on Wednesday were good. Her ANC was 2100 and her HGB was 10.6. She's been eating everything in the house since being on the steroids. It has calmed down a little but we are glad for it since she's gained 3 pounds!
This week, dad will go with Laney to clinic and the MRI on Wednesday. Then the whole family is off to Jacksonville for a follow-up. We are going to spend the night in Daytona and go to the Space Center on Saturday.
Laney is still complaining of neck pain. Our radiation oncologist is concerned that it may be neck injury caused from the positioning they had to have her in during radiation. We are looking at the possibility of seeing a pediatric orthopedist.
Tuesday, May 29, 2007
So it’s been quite a week again. We went to clinic on Wednesday (5/23) and ended up in the hospital again. The headache/neck pain and sleepiness/irritableness concerned the doctors (and us!) so they sent her for a CT in case of shunt malfunction. That came back with good news…hey, nothing is wrong! So what’s up with all the symptoms? Well, they started her on some steroids (woohooo!) to see if that would help any and kept her for observation for the next couple of days. We got home Friday (5/25) afternoon.
The end diagnosis is Somnolence syndrome. It’s excessive tiredness and irritability (among other things, there’s a description below) from cranial radiation. We’ve seen one of the other kids/family go through this too. Laney is sleeping about 15 hours a day…….Some days a little more some days a little less.
About a day and a half into the steroids the headache and neck pain stopped. Well, now that she’s phased off the steroids, she starting to complain again. We may need to keep her on the steroids (woohooo!!) but we will have to ask tomorrow (5/30) at clinic.
They also asked endocrinology to start following her. They took a bunch of blood for testing hormones and we will be seeing them in clinic in a couple of weeks.
We saw a friend while we were in the hospital…..Hannah Deal and her family was there. Hannah started running a fever towards the end of the week. We were happy to see them….well, not really happy. How happy can you be that someone is in the hospital?!?!
Everyone is well again. The mother’s day weekend was wonderful! Mom was treated to an amazing pedicure (which I am now addicted to!) and massage. All the mimosas and food we could eat. Oh and there was coffee and water too….but who needs those when there are mimosas!! Anyway…..Thank you CCC for the incredible day out!
So, we go to clinic tomorrow. Hopefully, there will not be a repeat of the last two weeks. Laney’s counts last week (5/23) were good…ANC 1300, HGB 10.9. We’ll see how they are tomorrow (5/30).
Next week we have an MRI (6/6) and then off to Jacksonville on Friday (6/8) and hopefully a visit to the space center for the weekend!
Love and Prayers,
Brian and Kara
Somnolence syndrome is a type of hypersomnia associated with cranial radiation (radiation treatment to the head) in children. Symptoms of somnolence syndrome include excessive drowsiness, prolonged periods of sleep (up to 20 hours a day), headaches, low-grade fever, nausea, vomiting, and irritability. Symptoms usually occur three to 12 weeks after the end of radiation treatment and can last from a few days to several weeks.
Wednesday, May 16, 2007
Oh vey it's been a long day! We went to clinic yesterday (5/15) and ended up in the hospital. Her ANC was 300 and HGB was 6.3! They wanted her in the hospital to get the blood then to watch her overnight and also to take a chest x-ray to make sure she wasn't developing anything in her lungs.
The x-ray showed bronchitis so they have put her on antibiotics for the next 5 days. She feels a little better from the blood, her HGB was 10 this morning.
Dad is still feeling pretty crappy too but getting better. Mom still has a cough but is much better. The older girls, thank the Lord, did not get sick.
Hopefully all of Laney's complaints have been related to the brochitis so it will be an uneventful week or so. We go back to clinic next Tuesday (5/22) for blood check and chemo.
Mom is still looking forward to the spa day this Sunday (5/20)!
Love and Prayers,
Brian and Kara
Monday, May 14, 2007
Well, it turned out that Laney didn’t get transfused. When we went back Wednesday, her HGB was up to 8 and they decided they would just let that ride since it was most likely because she’s been fighting a cold. It’s a little worrisome though because she’s been fighting a cold/cough since the beginning of March. She’s also started complaining on and off about her neck, being tired and irritable which are all signs of the stupid cyst thing. We’re trying to put off the complaints only because we already have an MRI set up for June 6……we really wanted to be able to wait for that scan but we will see in the coming days.
The rest of the week went pretty well though this smoke situation is pretty bad (can’t imagine being in North Florida). Both mom and dad ended up sick this weekend because of it. The big kids have been a HUGE help with both of us sick. We are very blessed to have the wonderful kids we have!
School ends on May 24. Hard to believe another school year is over. Laney is supposed to be going to summer school in June. Don’t remember the exact dates right now but it’s 6 weeks in June/July. It’s a shorter day only 8-12 instead of 8-2 that she does now. They are taking her out of the EELP program that she was in to be able to go to pre-k and summer school. She will be in a “regular” kindergarten class in August with VI (visual impairment) help.
This next weekend the Children’s Cancer Center is doing a mom’s day out on Sunday. It sounds like some kind of spa day which will be wonderful…..very much looking forward to that!
Love and Prayers,
Brian and Kara
Tuesday, May 8, 2007
It seems we will be getting transfused tomorrow (5/9) her HGB today was 7.6, ANC was 600 and platelets were 233. We went to playgroup today. She had a hard morning going back to school. The kids were a bit taken back by her appearance. At that age (4-5) they don't know but to point and ask questions. Laney was crying in her teacher's arms so we decided that the Children's Cancer Center would be good for her. She had a great time. She'll be back in school tomorrow then to the doctor in the afternoon.
We are asking for special prayers again for another precious little one. Her name is Hannah Deal (www.helphannah.org) diagnoses with a brainstem glioma. The tumor seems to have turned aggressive which is very difficult news. Prayers are needed for her and her family for very blessed days ahead.
Monday, May 7, 2007
The buzz is on! We did this over the weekend. She was a little nervous at first but as you can see...she's fine now! And adorable....though our view might be slightly biased! :o)
Laney's been doing pretty well. On Tuesday (5/1) her HGB was a little low at 8.2 but her ANC was 1800 and platelets at 320. They wanted her to come back on Thursday (5/3) to make sure her HGB went up and it did. On Thursday HGB was 10.0, ANC was 1200 and platelets were 160. She went to school after the appointment Thursday and had a little performance at school that night. They sang two songs...they were very cute!
She started getting a runny nose on Saturday and had a fever on Sunday. She slept almost all day. Her fever was gone by that night but we kept her home for one more day today just to make sure she was ok. She will be going to school tomorrow (5/8)then to the clinic in the afternoon.
There are new pics in the gallery. Hopefully they are not as big as billboards anymore. They are pics of the things they used during Laney's radiation. They told us that they make the disks a little larger than the actual target (tumor) but it seems to us that tumor is quite large. It's hard to believe that something that large could be inside her cute little noggin. The mask was a little weird to see. The hole in the front only goes over her nose and mouth so that they could put a breathing mask on her for the sleepy medicine. They said for an adult, the hole is not that big since they don't need to put them asleep....could you imagine?!
Love and prayers,
Brian and Kara
Thursday, April 26, 2007
Being back home is great! We did lie though….. we didn’t get home until Friday. When we got up Thursday morning, there was no sight or smell of smoke so we decided to stay and went to the Jax zoo. Then we had some giftcards for Carrabbas so that was dinner! Yummers! On the way home Friday, we went through St. Augustine. We went through Castillo de San Marcos. We were going to go to the oldest school house but Laney was pretty tired by then so we just went home. When we go back June 8th, we’re hoping to go to the Kennedy Space Center!
Laney went back to school Monday (23rd). She was a little apprehensive but was fine once she got there. And she’s completely whooped by the end of the day! They were all very glad to see her! Tuesday she went to playgroup and was very happy to finally get to go!
We also went to clinic on Tuesday. Counts are good (ANC 1100, HGB 8.7) and her weight is up too. She’s still eating! They are going to continue the chemo with no end date given. We’re just going to see how it goes. Our guess is at least for the next 3 to 6 months till they see what the radiation did for the tumor.
Her next MRI is June 6 though this is just for marking time….making sure there’s no swelling or any other problems. The radiation answers are not until Aug/Sept and/or Nov/Dec.
Vivian’s birthday is Friday!!! We are going out to birthday dinner with the family for Viv and Aunt Barb’s birthdays. They decided on PF Changs. Mom is making a cheesecake for Viv….she wanted that instead of a traditional cake.
This weekend mom and dad’s company is having their summer event. They are treating us to Busch Gardens for the day with lunch included.
The garage sale was amazing….all of you raised over $2000 for Laney. We can’t thank you enough for that. Please stay tuned for the next garage sale and family!
Please continue to pray for Taylor’s remarkable family for strength. www.caringbridge.org/fl/taylor
Love and abounding prayers,
Brian and Kara
Monday, April 23, 2007
Friends,
Another friend has become an angel yesterday. Beautiful Taylor joined the great kingdom of God. Please pray for strength during this time for her family. www.caringbridge.org/fl/taylor
Extraordinary love and prayers,
Brian and Kara
Wednesday, April 18, 2007
We're done!!!! Today (4/18) was Laney's last treatment. It's hard to believe 6 weeks is over. Laney did was so wonderful through all of it. It was a very mixed feeling today for all of us, staff included! But knowing that she will be doing well for it helped. Plus, we will get to see them again in a couple of months!
We had a little bump early Tuesday morning. Laney woke up with a 102.2 fever at a little after 1am. At All Children's we would have been admitted to the hospital immediately but here it’s a little different. They only admit if the child’s counts are low. They figure the child’s chances of getting sicker are better in the hospital than at home! Her counts were ok (ANC 950, HGB 8.4) so the ER gave her a dose of antibiotic and sent us on our way with an appointment in the oncologist’s office the next afternoon for another dose of antibiotic. That way, you don’t have to go back to the hospital. We went over to the institute (it was a little after 5 when we got done at the hospital), slept a little in the truck then went in for the radiation. Since her lungs were clear there was no problem to be able to go ahead with it.
We went to the oncologist office in the afternoon and got the second dose of antibiotic and the fever finally subsided later Tuesday evening. By today (4/18), she was feeling fine! The cultures that the hospital took all came back negative for bacteria too….. good news.
We were going to go ahead and stay through Friday and go to the beach and zoo and stuff however, there are wildfires burning in south Georgia whose smoke is smothering Jacksonville. Between mom’s asthma and Laney’s immune system, we decided it would be better to go home on Thursday so we will be leaving tomorrow morning (4/19). We figured since we will be back semi frequently, we’ll have other chances to go to all those places.
The big picture right now from the radiation oncology standpoint is to do an MRI end of May/beginning of June. We will be back here June 8 for a follow-up. This MRI is only to check to make sure everything is still ok. It will not show what the radiation did for the tumor. The MRI’s after that will be the ones that tell us what we really want to know. Those will be in 3 and 6 months from now (approximately, August and November). We will follow-up with Dr. Keole here every three months for at least a year, possibly two, then every 6 months and then it will go to once a year. Seems like forever from now!
Next Tuesday (4/24) we have our regular appointment at All Children’s. We’re not sure yet if they will continue the chemo treatments but should find out then.
So, it took 2 years but Laney is going bald! Right now she kinda looks like a monk! Most of the hair on top of her head came out in one big chunk (where one of the beams was shooting), the sides (where the other 2 beams were) are very thin and the rest is falling out in handfuls. We’re going to shave it eventually so it will all grow back the same but some of us are having a bit of trouble with that!
Thank you to everyone who was able to come out for the garage sale. We much appreciate your time and money spent for a good cause. We will let you know when and where the next one is and which family it will be for. Please remember the PACC attack before you throw stuff out or give it to the thrift stores!
Love and Prayers,
Brian and Kara
P.S. Laney informed us that she wants a blanket warmer for Christmas!!!! :o)
Thursday, April 5, 2007
This past weekend was the same short weekend. Unpacking, playing, washing clothes, packing, church. The big kids were in the cantada at church on both Saturday night and Sunday and both did very well. They are also doing the cantada again on Good Friday (4/6) along with another church.
Laney is doing well this week. Counts are good…. ANC 1500, HGB 10. What we are hoping is a great sign but the doc’s are telling us that it’s much too soon to tell is that Laney is eating…..REAL FOOD!!! Not just M&M’s and Doritos, but chicken and brownies and hash browns and bread and…..thank you God!!!! Maybe it is too soon to tell….maybe it’s just a side affect from all the stuff but she’s eating and actually gaining a little weight! We are still giving her some formula through the tube just to make sure she maintains.
Speaking of the tube….her Mickey button broke this weekend. The little stopper broke off inside and it had to be replaced. They did this on Monday (4/2) at the clinic (in Jax). It’s nothing that takes too much time. They spent more time waiting for the insurance to forward the approval than they did replacing it. It just has a little balloon on the inside that they deflate then take it out, put the new one in and inflate the balloon again. Whoever thought that would be so easy?! Anyway, it’s all better.
Laney and Daddy went to the Jacksonville Zoo this week. She was a little nervous about going but afterward, she was very excited talking about all the animals that she saw. We told her that we would all like to go back and then she could show us. We are discussing taking the week of the 16th (her last week) completely off…neither of us working and taking the big kids with us too. Making it a little vacation for all of us. Going to the Zoo, the beach and all. Hopefully we can do that….we will see!
We will be coloring eggs on Saturday (4/7) and having our Easter dinner that night. Then church on Sunday (4/8) and mommy will be leaving with Laney after that.
Much Love and Prayers,
Brian and Kara
Thursday, March 29, 2007
Sorry for the delay in updating….things have been going well this 3rd week…..hard to believe it’s half way over. The technicians seem to be having some problems with the machines sometimes. Nothing that puts Laney at risk, just that the machine apparently wants to sleep in!
Laney’s counts were ok this week. Her ANC was 670, HGB 10.0 so she got a full dose of chemo. They have something up here called Beads of Courage. The children are provided a string and they get different color beads that mean different things for all the things they go through. The one for radiation is a glow in the dark one! The doctors/nurses at the clinic or hospital give out the beads.
Oh, they are putting Laney in a movie at the Proton Therapy Institute. She is doing such a great job they want to use her in the “movie” to show other kids that are going to go through the same thing. I’ve heard that the anesthesiologists “duke it out” about who’s coming over to the institute. There are a couple that seem to “win” more than others! I’m sure it has as much to do with the fact that this is new here in Jacksonville as it does with Laney. We are extremely fortunate to be getting this chance at this time. We've found out that they are having to turn kids away because they don't have the abilty (legal or otherwise) to be able to take on any more children. They are trying to change that as quickly as possible so that they can start helping more children. We praise God for this opportunity and accept that it seems to be a sign that this was the right step to take.
So we are on our way home tomorrow (3/30). This weekend there are a couple of Easter performances at the church that the big kids are in so we will be going to see that as well as church on Sunday. And again, dad and Laney will be leaving after church on Sunday.
Above there is a snipit about the PACC Attacks some of the parents are starting. We are blessed to be a recipient of proceeds from this. As I've said before, God has truly been blessing us for this trip. Just another reason why we believe it was the right step.
Love and Prayers,
Brian and Kara
Tuesday, March 20, 2007
The weekend was spent lying low, unpacking, washing clothes and repacking. Laney came down with a fever on Friday evening through Saturday but it was gone by Saturday evening. Left was a runny/stuffy nose and a cough and just a general feeling of yuckiness. She went to church on Sunday (3/18) and was off again to Jacksonville with dad later that afternoon. Delaney’s tears of not wanting to be away from home are very hard on mom and dad!
Things are going well in Jax. Monday was long….. radiation took a little longer than on Friday plus there was a pentamadine treatment and chemo. Her counts were ok this week….ANC 1056 and HGB 11.1. Hopefully they won’t be down too much next week.
Today (3/20) went much smoother and shorter….no other appointments since everything was done yesterday and her counts were ok. Should just be able to spend the rest of the day relaxing at the hotel.
Laney’s having more separation anxiety this time more than last. She calls with tears and missing us which doesn’t claw at mom’s heart at all!! So we count…. Only 3 more days this week and 4 weeks to go. She loves counting all of a sudden. She counts how many turns we do in the car until we get to where we are going. She does ‘counting experiments’ as she calls them…. She’s using her fingers to do math problems (4 2, 3-2, etc)!!!
The big girls are enjoying their time off of school this week. Staying up late and sleeping in. So I make sure I tell them….only 3 more days!!! LOL
Love and Prayers,
Brian and Kara
Thursday, March 15, 2007
One day left in the first week. It’s been good overall. Tuesday was very long. Laney was a little sick from the anesthesia and had pain in the back of her head. Dr. Keole said it was most likely caused from the position they have to put her in to do the radiation. They tried a slightly different position on Wednesday as well as giving her nausea meds before she woke up and it was better both for the doctor’s and Delaney. The only real pain she complains of now is that her throat hurts.
Laney had a transfusion on Tuesday afternoon and looked much better afterward. She continues to be very tired though. She’s eating some but we are hooking her up during her ‘naps’ since she can’t have anything after midnight.
Next week Laney will have a long Monday…. she’ll get radiation in the morning, chemo and a pentamadine treatment in the afternoon. They’ll check her counts again, of course, but they should be good since she got the transfusion on Tuesday. The rest of the days should be relatively short.
We will be leaving tomorrow (Friday) after the radiation treatment getting back to Tampa around 330 (hopefully!). This weekend we will probably be lying low for the most part. We’ll have church on Sunday and then Dad and Laney will leave after that. The big girls have spring break next week….hmmmm.
Love and prayers,
Brian and Kara
Monday, March 12, 2007
So we’re in Jacksonville! Laney had her first radiation treatment today. You might be able to tell by the dots and lines all over her in the picture above. They asked if we could keep those for the next few days. It went well, so all the doctors tell us. I think they said they had 10 people in there watching it go on! They are doing 3 fields every day which just means that they are doing the beam in three different places. They will do this every weekday for the next 6 weeks. She has to be put to sleep every day too. :o(
She’s also sporting her new ‘do’! We were going to wait to cut her hair until after she was done with the radiation but her hair started falling out worse and worse. So, we just cut it short again so if it leaves all together (between the chemo, anesthesia and radiation) then it will be easier. Her hair was just so uneven and has little shaved spots all over it, we were trying to make it look better. She’s very cute with it short (not that we’re biased or anything!).
We saw the oncologists here today too. They are a great group. Today they just wanted to meet us and check her out and do the chemo tomorrow. They did blood work today and found that her ANC is 570 which is lower than last week and her hemoglobin is 7.8, also lower than last week and low enough to need another transfusion. After her radiation, we will be going to the oncologist again to get chemo and the transfusion. It will be a longer day but she will feel so much better after she gets the blood.
We are EXTREMELY blessed to have gotten an EXTREMELY reduced rate at an EXTREMELY nice (posh!) hotel. A picture from the “room” is on the picture page. Room is in quotes because they gave us a villa. It’s basically an apartment with maid and room service! It’s so awesome. We’ve got a kitchen to cook in, a living room, a bedroom with bathroom. Both the living room and bedroom have sliding doors that open up onto the lake. You can hear the birds singing with the doors open. God is so good.
The weather has been beautiful. A little cool in the morning for Laney but only because we have to get up and be at the institute so early (6:30). And I can’t believe the traffic that’s out that early in the morning…..these people should be sleeping!! It’s about a 30 minute ride to the institute from the hotel and then the oncologist office is about 6 minutes from there.
Love and prayers,
Brian and Kara
Tuesday, March 6, 2007
We saw the oncologist today. Laney's counts are pretty low...600 ANC. But she had a full dose of the chemo. We found out today that they want to continue the chemo while doing the radiation. We will need to see an oncologist up there to be able to do that so I guess we'll meet them next week.
Laney is still not eating well. Some days she's not eating at all. We're having to supplement more and more with the feeds at night. Hopefully with the radiation it will help her appetite come back.
We're not going to be staying at the RMH. Some issues with what is needed to be able to work have come up. Plus Laney seems to have a cold now and we wouldn't be allowed to stay there while she is sick. The good news is that the insurance company is going to be able to reimburse us for part of the travel and lodging. We're not sure how much but any amount will help.
Mom will be going up there the first week which will start on Sunday (11th). No one has called to tell us otherwise yet. Then dad will go up and we'll be switching every week. We'll be coming home on Friday afternoons then driving back on Sunday afternoons.
God has truly been blessing us financially for this trip. Thank you again to everyone who has given to our family. We hope only that we can help to bring blessings to others in need like so many have brought to us.
Love and Prayers,
Brian and Kara
Wednesday, February 28, 2007
We are back from Jacksonville. Everything went well up there. Everyone was very excited to see Delaney given that she is one of the first children to be going through the Proton Institute there. Nurses, administrators, doctors, social workers….even some of the other patients since Laney is so friendly!
The whole staff is pretty incredible. The Institute is incredible too. They took us on a tour of the facility. We got to actually see all the radiation machines that they have including the proton one that they will be using on Laney. It’s gynormous…..37 feet tall in its entirety. There are parts they use that they make for each patient. They have a machine shop in the facility where they make these parts.
We were able to tour the Ronald McDonald house there. It’s only a few minutes from the Institute. It’s beautiful. We are discussing how to do things over the 6 weeks that we are there. It looks like we are going to have to be up there on Sunday nights because they are going to be doing the treatments very early in the morning…..we have to be there at 6:30 every morning. We’re thinking of leaving Laney up there the whole six weeks and having whichever one of us is home come up on Friday nights with the older kids and spend the weekends all together up there. We just aren’t sure yet….praying on guidance!
The tentative start date is March 12. Unless we get a call to change it, that is when we are planning. Dad will go up the first week and then we will switch each week. The doctor there wants to get some blood tests done here for some base lines before radiation starts. Laney will have 2 more doses of chemo before we go…. Today and next Tuesday.
Delaney has been well. A little tired and achy but nothing out of the ordinary. Not eating so well so her weight is fluctuating. We’re having some difficulty with the insurance company over the formula we put through her tube at night. They are saying now that we should be picking it up and reimbursed for it instead of it being delivered and them paying for it. Not sure I really understand the difference….it will cost them the same whether it’s delivered or we pick it up. The only difference it would make is to us as we have to put out the money. The doctor’s office is trying to help us out with it.
Her head is better….we’re actually able to wash and brush her hair though very carefully. They put some marks on her head in Jax that they want us to keep there until she gets back. These are to help line up the lasers for the first couple of times they do the radiation. They said if the marks started to fade from washing her hair, we could just remark them with a marker. Poor kid’s got marks, stitches and bald spots all over her head from the last few weeks!
This weekend there a million things going on so, not sure what we’ll be doing aside from our oldest going to the military ball on Friday evening. That is a must since it’s been planned for a few months!
Continued love and prayers,
Brian and Kara
Saturday, February 24, 2007
The surgery to place the screws went well. It was just a day surgery so we were home that afternoon. It took about an hour for the whole procedure. She's been doind ok since. Her head is quite sensitive and hurting. She's on Tylenol with codeine every four hours. It was around the clock for the first couple of days. Today she's gotten it a little more spread out but she's still hurting. We feel so awful! She's having a hard time laying her head down. She's currently sleeping with one of those neck pillows so that she's not putting so much pressure on her head. No shirts over the head and no brushing the hair!!!! She looks quite dishevelled..... again, we feel so awful!
Laney’s ANC was only 400 this week. Before they found that out, they were going to only give her a 75 ose of the chemo because of the jaw problem she had on Monday. They gave her a 50 ose instead. Normally, they wouldn’t give it to her at all with the counts being that low but they are afraid that if they don’t keep giving the chemo the cyst is going to grow again and cause problems before they can start the radiation.
We will be leaving tomorrow afternoon for Jacksonville. Monday we have to be at the Proton Institute at noon. We’ll be filling out paperwork, doing blood work (just a finger poke) and touring the facility until around 2 which is when our appointment is with anesthesia. Whenever that is done we will be done for the day.
Tuesday they want us at the Institute at 630am. They will be accessing her port and hydrating her. This day they will be making her mask and bed and going through an actual simulation of radiation without actually shooting the beams. Doing a CT, putting her under…. This way they can see how things are going to go, get all the calculations and everything that they need in order to do the radiation. Not sure what time all of that will be over but we should be leaving after that.
We should know by then when they will be starting the radiation. We’ve heard from the nurse case manager at the institute that it should be within a couple of weeks. Hopefully, that is true. We’re concerned that if we wait too long she’s going to need another surgery for the cyst.
Love and prayers,
Brian and Kara
We would like to extend a special thanks to our fellow church members. We are humbled by your giving hearts both financially and prayerfully. We are now able to make the trips to Jacksonville without worrying about the monetary means. We can't express what this means to our family.
Monday, February 19, 2007
****UPDATE**** Thursday 22nd. Laney is having surgery today to place the screws. This is outpatient so she will be home this afternoon.
____________________________________
Laney has been pretty good over the past week or so. We had a nice weekend. Her and one of her sisters spent Saturday night at Aunt Barb's house with Aunt Leslie and Samantha who are in from out of town. Went to church on Sunday morning and then to a friend's birthday party Sunday afternoon. We got to see most of our playgroup pals there and celebrated both Mathew and Andrew's birthdays.
Laney gave us a bit of a scare this morning. After we dropped her off at school we got a call that she was screaming/crying about her teeth and mouth hurting. We got to the school and she's sitting with her mouth open and still crying. When we finally got her home and calmed down she still couldn't close her mouth and said it was very painful. She took a short nap but it didn't help so we called the oncologist. They asked us to bring her into the ER. On the way, she was able to close her mouth and said that the pain was gone. We called the doctor again and they said we didn't need to go if she was able to close her mouth, the pain was gone and she wasn't running a fever. So, back home we went! It has been relatively uneventful since then. We will see them tomorrow and they will check her out.
We got a call from Jacksonville late today. Our appointments are for Monday and Tuesday (26th & 27th). She will need to have the screws put in before we go up so we put a call into the NS office and they should be calling us back tomorrow. We'll update when that surgery is. It will only be a day surgery but we'll keep her out of school the rest of the week just for our sake! Jacksonville said that we would be able to start radiation within a couple of weeks of going up there.
Tomorrow (Tuesday, 20th) Laney has playgroup then a pentamadine treatment and then we'll see the oncologist.
Love and a bundle of prayers,
Brian and Kara
We would like to extend a special thanks to our fellow church members. We are humbled by your giving hearts both financially and prayerfully. We are now able to make the trips to Jacksonville without worrying about the monetary means. We can't express what this means to our family.
Friday, February 16, 2007
Mark became an Angel today....Our precious Lord has called him home. Our thoughts and prayers are with his family.
www.caringbridge.org/fl/mark/
Wednesday, February 14, 2007
Laney’s counts were up again this week. She got her chemo yesterday and is scheduled again next week. She had a bout of nausea last night but a little Zofran made it better and she is in school this morning.
We saw the NS yesterday as well. Another CT seemed to show the cyst as stable. Our wonderful NS, (Dr. Carey) called to Jacksonville to find out what is going on and is trying to get us some answers. We found out that they wanted us to come up on Thursday (22nd) and then again on Monday (26th). Dr. Carey asked to try to move it to Friday and Monday and that way we can just spend the weekend up there. If that happens then we’ll just take all the kids up and have a little 4 day weekend vacation together!
We went camping this past weekend. Everyone had a lot of fun. Laney did so well and we were so proud of her. It got pretty cold overnight both nights but she didn’t complain at all about that. We’re hoping to go again the first weekend in March but we’ll have to see how things go.
Love and prayers,
Brian and Kara
Thursday, February 8, 2007
Finally home! They rechecked her counts again yesterday (2/7) and her ANC was 1500 (it was 530) and her hemoglobin was 11.5 (was 7.6). Since they went up so much they gave her chemo yesterday too. We have appointments with both oncology and neurosurgery next Tuesday (2/13 – no playgroup :o( they couldn’t work the appointments around that time though they tried ). She will have another CT just to check and make sure everything is still the same and then a check up with the NS. Then we go to the oncologist to check her counts and get chemo.
We got an email from Dr. Keole in Jacksonville. There seems to be some delays with anesthesiology but they are working it out. Delaney will be one of the first (there is one other little boy) that they are putting under during radiation so they are trying to get everything in line. We should be going up to meet with them (Anests) on the 22nd or 23rd.
She’s in school today. There is no school tomorrow so all the kids will be home. We’re hoping again to go camping this weekend since she didn’t have surgery. We’ll see how that goes!
Next week the Children’s Cancer Center is having a dinner on Thursday (15th) and then a parent’s night out on Friday (16th).
Love and prayers,
Briand and Kara
Tuesday, February 6, 2007 1:10 AM EST
Well things change quickly. We are not having surgery because it doesn't seem that the shunt is the real problem. They rechecked her counts this morning and her hemoglobin is still low (7.6). They are transfusing now and they pulled more blood for cultures to see if there is something else going on that we can't see.
Everything is going well so far.....hopefully we can still go home soon.
Forgot to mention that her birthday was good. She was very excited about it and was just about standing on her ear waiting for people to show up. We made all her favorite foods (mac and cheese, spaghetti, chicken, goldfish, ham/turkey swirls, cheese, olives) and of course, cake. She was happy to be able to share with family and friends.
love and prayers,
Brian and Kara
Monday, February 5, 2007 10:04 PM EST
Well, we find ourselves in the hospital again for the same reason....shunt failure. In the CT they did today the cyst looks the same size as last Tuesday (30th) but the NS is worried that if they let it go she will be in soon anyway.
After admitting they drew some blood and found her hemoglobin to be 7.6. When we saw the counts we started asking questions because no one brought it up to us.... we just kind of happened upon it. Oncology is coming by in the A.M. to check it again and see about transfusing her. This will be the first time she's ever needed blood. She came close a couple of times when she was on the last chemo but her counts always went back up. We're not really understanding why because this chemo is supposed to be so mild and not have that kind of affect on the body..... more questions to ask!
The NS said that even if she gets transfused it will not delay the surgery. She is scheduled around 11:30. They are also going to try to speak with the radiation oncologist to find out about placing the screws and they might be able to do that tomorrow as well. That way, they won't have to put her under again later this month.
love and prayers,
Brian and Kara
Thursday, February 1, 2007
The past week has been good, albeit a little anxious! Laney was able to get her chemo on Tuesday (30th). Her counts were only slightly higher than last week but still ok. She was looking forward to school today. Tomorrow she gets to take in cupcakes for her birthday which is Sunday (4th).
We moved Laney’s CT up from the 6th to Tuesday (30th) so she got that done. The news isn’t horrible but it’s not quite what we were hoping for either. The cyst is smaller than the CT she got on December 19th (this was the CT before the last surgery) but larger than the CT on December 20th (the CT after the surgery). This means that the chemo is slowing the progression but it is not stopping it. Leaving radiation as the next step.
We met with Dr. Keole and Dr. Chang at Shands in Gainesville, yesterday (31st). Both extremely nice, knowledgeable and confident. Our initial thoughts were that they would gloss over everything and just say when the appointments would start but they actually sat down and spoke with us…. Giving us much information about what they saw in the scans, why surgery is still not an option, what proton beam radiation is, how it works and how it differs from others, side effects, complications as well as statistics and what if’s. They want to get a little more history on Delaney before any specific dates are set but radiation therapy will be 6 weeks, Monday through Friday (30 treatments). The soonest we would begin would be the beginning of March.
There are some preliminary appointments that we would need to attend in Jacksonville before the treatments would begin. Delaney would also need to have a surgery here before they could begin radiation. The surgery is to put screws (yes, screws….titanium screws!) into her skull. Five of them….I guess that is one of her presents for her 5th birthday?! (Just don’t add one to grow on!) The screws show up on the CT’s that they will do every day to check positioning of the tumor so they can “see” exactly where to shoot the radiation. It’s all calculated into a computer and checked and re-checked and checked again and…you get the idea. They are very precise with this radiation. She even gets a mask and ‘bed’ made just for her!
We feel better about it over all….even though we’d rather not do it. The doctor’s are making us feel much better about the decision.
So coming up we have a CCC dinner and game night tonight (2/01), Laney’s birthday on Sunday (she said she wants to go to Chuck E. Cheese….uh, how ‘bout NO! we’re trying to talk her into something different…..somewhere not so germy!), NS, oncology and playgroup are all on Tuesday (6th) and then hopefully a family camping trip next weekend (9th – 11th).
Thank you all for the prayers for guidance on the decisions. Now we could use some prayers for financial ability…..
Love, hugs and prayers,
Brian and Kara
Tuesday, January 23, 2007
All has been well the past few weeks. Laney has a little cold but is still a bundle of energy. We were able to go to playgroup today.
She had her first treatment of the new antibiotic, pentamadine. They wanted to try the breathing treatment this time so that was an interesting experience. Laney did fantastic. We were a little nervous that she wouldn't do very well but she handled it like the trooper she is!
We saw oncology this afternoon as well. Laney was able to get her chemo. Her counts were a little lower than last week but not too low for the treatment.
Oncology sent both MRI's (October and January) to Shands and the radiation oncologist there said that Delaney was a good candidate for radiation. The doctors discussed her case at tumor board this morning and now feel that since the chemo is not eradicating the tumor, the best thing to do is radiation. This will be the proton beam radiation which is supposed to be the best with the least amount of fallout. This is so very much the last thing we wanted to do but if it is what will get rid of this thing, then that's what we will do.
We have a consultation with the radiation oncologist next Wednesday (31st). It is at Shands in Gainesville (radiation will be done at Shands in Jacksonville). Dad, mom and Laney will be driving up that morning and coming home that evening. We will have more information then and will update.
Prayers for enlightenment and strength,
Brian and Kara
Tuesday, January 9, 2007
Laney has been doing well the past couple of weeks. Last Wednesday (1/3) her counts went way up. She was able to get her chemo and go back to school. Today (1/9) her counts were up even more. She got her chemo again and she'll be able to go back to school again.
We also saw the NS last Wednesday (1/3). They took the stitches out and Laney has had no complaints of pain or problems, even through today. Good news.
Laney saw the ophtalmologist this morning. He said her vision might be slightly worse but overall it's stable. Because she's starting to be able to say better what she sees he wants to get her some glasses thinking it might help some of the far-sighted vision deficit she has but she will not get 20/20. It will probably be 20/30 to 20/40 at best.
We did receive a little bad news. The MRI Friday (1/5) showed growth of about a half to 1cm in the solid mass of the tumor as well as some enhancement in the cystic portion.
The cystic part is, of course, the part we had such trouble with over the last few months. The good news is that neither "seemed" to have changed since the CT in mid December (we say good because she had only been on the chemo for a couple of weeks at that point). The change they are speaking of is from the last MRI in October. It makes sense because of all the problems with the cyst that there would be growth in the tumor since the tumor "feeds" the cyst.
We believe that the chemo HAS to be doing something good, afterall we would be cleaning out the shunt again by now.
Tumor board met this morning before our appointment and doctors discussed options again. They agreed that since she is not showing any symptoms and she's only been on the chemo for a month, they would like to keep going for another 3 to 4 weeks and do another MRI. If there is continued growth (or if symptoms appear before then) they will suggest radiation. If there is no growth or some shrinkage, they will continue the chemo indefintely. The hope is to put off radiation as long as possible.
The next couple of weeks will include a church dinner (1/10), Children's Cancer Center dinner nights (1/11, 1/18), hopefully playgroup (1/16), Psych evaluation (1/16) and clinic (1/16).
Love and bunches of prayers,
Brian and Kara
Tuesday, January 2, 2007
Christmas and the New Year were wonderful even though they were quite wet! Laney was feeling much better by Christmas, just a little tired. We went to the oncologist on Wednesday (12/27) for chemo but her counts were even lower and couldn’t get the chemo last week. They aren’t sure why they are so low. We go back tomorrow (1/3/07) and hopefully her counts will be up and she will be able to go back to school this week. She really misses going.
We’re torn about the counts being so low. On one hand we’re hoping it’s a good sign and means that the chemo, besides beating the heck out of her immune system, is also taking care of the tumor. On the other, of course, it means she can’t go out and do a lot.
We see the NS tomorrow to take out the stitches. Laney has not complained of any pain so far which is good although she is beginning to sleep more in the last couple of days which is usually not good.
We have an MRI on Friday (1/5/07) which will bring much anticipation. We usually start holding our breath from the time she goes in until the next 24 hours or so is over. If there’s “something amiss” we would get a call within that time. Otherwise, we will find out any news on the following Tuesday.
Laney is not eating well. Since the chemo started her appetite has dwindled to nearly nothing even on the appetite stimulant. With the exception of this week since she didn’t get the chemo, she’s hardly eaten at all. We have started her night feeds again. The only things she is interested in eating at all seems to be Doritos, M&M’s, black olives and an occasional chicken nugget.
When Laney was first diagnosed, we signed up as part of a research group. Our hope was that it would help treatment of this sort of brain tumor get better. This meant that she would be followed throughout for the next 10 years or so by various doctors. Aside from oncologists and neurosurgeons, she is also followed by psychologists, endocrinologists, ophthalmologists, hearing, etc. They got baselines when she first started and do ‘check-ups’ every so often according to the protocol. One of the check-ups is coming up on the 16th for psychology.
Love and Prayers,
Brian and Kara
Thursday, December 21, 2006
We got home late yesterday (12/20). Much later than we wanted but the nurse’s floor seemed to be pretty busy.
Laney seems to be in much more pain this time than the times before. We’re still needing to give her pain meds where before, she was fine by now. We’re praying that the pain will subside quickly and the weekend will be easy.
She did get the chemo on Tuesday as well. They did that before the surgery. Her counts were up a little but still pretty low. They will look at starting her on a new antibiotic after Christmas, possibly after the new year as her counts get better.
We are looking forward to a friend’s birthday party on Saturday, church and Uncle Scott’s on Sunday and of course, opening presents and lots of food on Monday. Other than that, we are praying for a VERY uneventful couple of weeks.
Love and prayers for a Merry Christmas and Happy New Year!
Tuesday, December 19, 2006 2:52 PM
Well that was short lived.....We are back to clearing out the shunt again. This morning Laney complained of pain and dizzyness so since we were at All Childrens for chemo they did a CT and saw that the shunt was blocked.
The NS said she would try to get her out tonight. She knows that once the shunt is unblocked Laney is ok so she doesn't have a problem sending us home. It just depends on how late everything gets done. At the latest, we will be home tomorrow.
The oncologist said that this chemo could take weeks to work so since it's only been 2 weeks, they are not giving up on it working. They still plan on continuing the treatment.
Love and prayers....
Monday, December 18, 2006
We saw the NS today (12/18) and they took out her stitches. Then we were able to go home!! Laney hasn’t complained of any pain at all. For now it seems that between the last revision and the chemo it seems to be keeping the cyst at bay. So long as everything seems to be working, they will keep doing the chemo.
We saw the oncologist last Tuesday (12/12) for chemo. Even though this chemo is not supposed to knock her counts down, they were pretty low. They weren’t sure why so they took her off the oral antibiotic that they had started her on because she had a problem with that the last time. They will check her counts tomorrow (12/19) to make sure they are going back up and then probably recommend her to be put on the IV antibiotics again.
Laney lost two pounds last week which also concerned the oncologist. She’s not eating very well at all since starting the chemo. We are doing the feeds at night again so we can hopefully get her weight up again.
Next month (January) will be busy. Along with the weekly oncology appointment we also have an appointment with the ophthalmologist on the 9th, an appointment with the gastroenterologist TBA and an MRI on the 5th.
This week we are looking forward to church on Christmas Eve as well as a visit to Uncle Scott’s house with the family. There is a Christmas parade through the neighborhood every year with Santa. Before he leaves to deliver presents he comes around and gives hugs and candy to all the kids! Christmas day will mostly be spent at home with kitchen full of food!
With love and prayers, Merry Christmas and Happy Hanukah!
Brian, Kara, Elizabeth, Vivian and Delaney
Tuesday, December 5, 2006
:o) We are home again. Same old, same old. Although, this time they did an ultrasound to look at the bottom of the tube in her abdomen to make sure there wasn't anything causing problems there.
We spoke with oncology today. They feel that radiation is still too soon to do if they can keep from doing it. They consulted with several hospitals/doctors around the country to find out what their thoughts were and came up with another chemotherapy to try. It is just one med pushed through her port once a week. It is related to one of the ones that she was on before. Unfortunately, it is the one that caused her neuropathy and pain in her legs. It doesn't mean this one will but it is possible. This one, however, is not supposed to make her sick to her stomach. We'll have to watch her counts closely again too.
There is no guarantee that this will stop the tumor from producing the thick junk that is clogging up the shunt and causing so many problems. Just like all the other chemo for this type of tumor, some kids it works on and others it doesn't. We will have to see in the coming weeks/months. Please pray that it does work!!
Oncology is sending the scans and file to Shands to see what their prognosis in radiation would be so if this doesn't work, we will at least know a way to go.
Laney is feeling good again except for a little tired. She'll be staying home for the next few days then hopefully going to school next week. The week after that, Christmas break starts so she will be out for two weeks.
We should be going to the mall with the Children's Cancer Center on Thursday.....they had a blast at that last year.
Love and Prayers,
Brian and Kara
Monday, December 4, 2006 2:04 PM
:o( Well..... it was a great two weeks until this weekend when Laney started complaining about the pain again. So we are in surgery again. Replacing the catheter and cleaning everything up/out.
There wasn't much word this morning because there was not a radiation oncologist at the tumor board on Tuesday so Laney's docs had messages into the other docs but they had not received any word back from them. With Laney having the surger again, they are trying to get with the other docs quickly and the NS requested that we try to get into some kind of radiation soon so that she wouldn't have to keep coming in. Our oncologist is supposed to come and speak with us tomorrow.
Laney should be out tomorrow afternoon. She always feels great once everything is done and she's home so the next couple of weeks should be pretty good.
Love and prayers,
Brian and Kara
Wednesday, November 29, 2006
Thanksgiving was great. Went to Aunt Barb’s on Thursday and then had Thanksgiving dinner at home on Friday. We’re still enjoying some leftovers!
Delaney is feeling well. She started back in school on Monday but took yesterday off to have a flu shot and went to the playgroup.
We put our tree and decorations up over the weekend also and everyone had fun. Laney has decided her favorite songs are Jingle Bells and Feliz Navidad!!! Both of which she sings loud and off key and is hysterically funny……we love it!
Thursday (30th) there is a Christmas party for the Cancer Center at the Sheraton which is always fun so we will be going to that. Saturday (12/2) is something called Badge Bowl. We hadn’t heard of it but it’s the Tampa Police against Tampa Fire and Rescue. They square off in a flag football game at Wharton High School this year. Before the game though they have all the Police and Fire and Rescue equipment and dogs plus all kinds of games and fun. Everyone is welcome to come.
We haven’t heard anything yet from tumor board. Laney has a post op appointment with the NS on Monday (4th) and her regular check-up with ONC on the 12th. Plus many more fun things coming up! It’s shaping up to be a busy month.
Love and Prayers,
Brian and Kara
Tuesday, November 21, 2006 7:47 PM
Happy 15th birthday Bizzy!!!!
Home sweet home again. :o)
Laney is doing well. Surgery was the same....replaced the catheter because it was blocked. They put her on steroids for the next few days hoping that will help the cyst to stay empty.
They are going to discuss Laney's case at 'tumor board' on Tuesday of next week. That is where all the doc's (neurosurgery & oncology) get together and discuss the going's on. They will talk about the options available for her tumor/cyst but in talking with the oncologist today, it looks like radiation is going to be our best option. It sure isn't what we would like to do, but it beats her having surgery every other week.
We're looking at proton beam radiation. It seems to be the best in radiation therapy these days. There are only 3 hospitals in the US that provide this for children. The closest is at Shands in Jacksonville and they are just beginning their pediatric proton radiation this December. Our oncologists must present Laney's case to them and they will decide if she can be accepted. Apparently there are 'restrictions'.... tumor size, age, location of tumor, etc. We should find out in the next couple of weeks.
For now, Laney is home and doing well. Thanksgiving will be spent at Aunt Barbara's house and then mom will be cooking thanksgiving dinner again on Friday for our house!!! Yummers!
Love and prayers,
Brian and Kara
Monday, November 20, 2006 1:08 PM
:o( We are back in surgery today. The shunt is blocked again. They are going to clear it again. Short term answer seems to be some steroids. Long term in a small conversation this morning was radiation. That will need to be talked through in depth with the doctors.
This past Saturday we went to see the Wiggles. It was such a good show and Laney loved it.
Laney let the docs know this morning that she wanted to be home by Thanksgiving cause she wanted to eat turkey! They said they would try.
Will update more later.
Love and Prayers,
Brian and Kara
Thursday, November 9, 2006 6:26 PM
Home again! :o)
They took the valve completely out, feeling that it was the culprit causing the problem so now she just has straight tubing. Although if the tubing gets clogged, they will have to put something else in that they can tap every so often when it fills. That sounds like loads of fun so we won't be discussing it!
But we're home. Laney seems to have brought a cold home with her but otherwise is feeling great.
Love and Prayers,
Brian and Kara
Wednesday, November 8, 2006 3:19 PM
Well.... Here we are again. :o(
Laney started complaining of the neck pain and throwing up again. They did a CT today and the cyst was filling back up. They tried 'tapping' the shunt (putting a needle in and trying to pull liquid) and it seems that the valve/catheter is clogged. They are replacing the valve today and she can hopefully go home tomorrow.
Love and Prayers,
Brian and Kara
Friday, November 3, 2006 8:18 AM
:o) Home again!
Laney is doing very well. She was up for most of the day yesterday and eating and, with the exception of throwing up very first thing after she got up, there were no problems. Today she is doing even better.
She can go back to school on Monday as long as she feels like going and seems to be balanced. She seems to feel like going because she asked if she could go today!
Follow-up with the NS is Monday (13) and she has her monthly appointment with oncology on Tuesday (14).
Thanks again for all the hugs, love and prayers,
Brain and Kara
Tuesday, October 31, 2006 6:16 PM
Surgery went well. She didn't get in until 11am and out at 1pm. Then was back in her room about 230pm. There were no complications. They put the shunt into the cyst and its own line down the right side. (Her other shunts have a line down the left).
They will do a CT tomorrow to confirm that everything is still where it is supposed to be and then it will be up to Delaney when she goes home. If she's up and seems well by Thrusday she'll be able to go home.
In recovery she had some blood seeping out of her right ear. The thought is that they may have "irritated" the ear with a q-tip trying to clean out some betadine that had gone in..... always thought the docs said to never put q-tips in your ears!!
Fun today: The toothfairy came while she was in surgery today. "She" put the tooth in a jar with a couple of dollars! And when she came back to the room there was goody bag from the Halloween parade since she missed it today.
For now she's just sleeping and resting....getting a little Tylenol for pain.
Love and prayers,
Brian and Kara
Monday, October 30, 2006 4:52 PM
Delaney's surgery is set for 830am tomorrow morning. The NS are saying that this one will not be as invasive as the last since they won't be having to open up the skull like before. It should be an easy shunt placement as she's had before. Recovery could still have some dizziness and vomiting because the brain will be moving again as it did last time.
On a happier note, the nurses here have found her a costume for halloween! She's decided to be Fiona from Shrek since we couldn't find a mermaid costume. That should make for an interesting picture! They are having a halloween parade here. They said the docs and nurses dress up and the kids dress up and everyone parades and the kids get candy too. We hope Laney will feel like participating.
We will update as tomorrow sometime after surgery.
Love and prayers,
Brian and Kara
Saturday, October 28, 2006 10:12 PM (last update, Friday)
:o( Back in the hospital....
Delaney is feeling much better with the steroids. She's not throwing up or having the pain. They are keeping her in the hospital to keep the steroids going by IV and just to keep an eye on her.
We spoke with the NS this morning. They are going to operate again but put in a shunt this time. One of two types but they will not be able to determine which one until they get in to see the cyst again. One choice is to have an internal drain (shunt) that they will try to tie to the other shunts or place its own line. The other choice is to put in an outside drain which will eventually be taken out. The choice will be made by the kind of fluid in the cyst. If it's thick, they can't put an inside shunt because it will clog up. If it's clear and watery, they can.
We're not sure what the outside shunt would bring....kinda forgot to ask as we were just trying to take in the thought of another brain surgery. We will have to find that out.
The surgery they said would most likely be on Tuesday....Monday if they can but probably Tuesday. We don't know of any times yet but we will update when we do.
For now she's eating ok and playing....getting rather board in the hospital! And the room number below is not a typo....we are in the same room as last time!! Kinda eerie!!
With abounding love and prayers,
Brian and Kara
Friday, October 27, 2006 8:31 PM CDT
Well....back in the hospital. :o(
Laney had a CT today because she has been waking up with severe neck pain just like the pain before the surgery. They called an hour later asking us to come back to the hospital. The cyst has enlarged again to almost the size at pre-op and it seems there might be some blockage in the ventricle.
Right now they are just giving her steroids to help with swelling. She also started throwing up today so we're not sure what tomorrow might bring but we'll update when we can.
Thoughts and prayers abounding,
Brian and Kara
Wednesday, October 18, 2006
Back to school already and loving it! The NS (Monday) said that she could go back so she went yesterday. She was quite exhausted by the end of the day but loved it none the less.
The NS said that she looked very good. Her walking/balance hasn’t improved much but they said that it may never really improve or it could just take more time. Either way, she’s doing well. They will be following her MRI scans closely but that will be all from them for now .
She had an oncology appointment yesterday as well. They also said that she’s looking great. She lost about a pound from the last time she was in their office a month ago. Not too bad considering all the time in the hospital that she wasn’t eating. She is eating very well now. Oncology will see her in another month and her next MRI will be scheduled in January.
She doesn’t have any other appointments scheduled until January so with the exception of seeing oncology once a month things should be relatively uneventful…..least that is what we are praying for!! So, we will focus on dressing up for Halloween, eating all of our Thanksgiving goodies, Christmas tidings and New Year happiness!
Love and Prayers,
Brian and Kara
Wednesday, October 11, 2006
We're out! Delaney is doing great. God is so good....all your prayers helped, we know because once she started feeling better, she just kinda took off. Much to everyone's surprise.....and delight, I might add!
The NS is weining her off the phenobarb so she'll be off in about 6 more days. They gave her the pill and we crushed it up and gave it to her and she did much better with that....no throwing it up.
Her follow-up is on Monday (16th).
Thanks again for all your thoughts and prayers.
Brian and Kara
Tuesday, October 10, 2006 9:44 AM
Delaney had a great day yesterday!! Up and playing and back to mostly her old self. She had only a couple of times where she was dizzy and/or nauseous. Eating and drinking too. Not a whole lot but enough that everyone was happy.
She had a problem after meds last night though. They had been giving the anti-seizure (phenobarbital) meds by IV but tried last night by her G-tube. She threw that all up. This morning they tried the same thing and she did the same thing. They are going to try the pill form of the pheno crushed up and put through the tube instead of the liquid form and see if she does better with that.
It sounds like they are planning to see how she does the rest of the day today and talk to us this afternoon. If she does well, they might let her go today. She's already up playing and being her colorful self!
Love and Prayers,
Brian and Kara
Sunday, October 8, 2006 7:56 PM
Delaney didn't keep the feed down yesterday. She got up out of bed and then threw it up.
This morning was quite different.....Praise God!! She was talking and laughing a little!!! It's been off and on all day.... somewhat more off than on but the change is welcome. Much better than the blank stares that have been usual (and heartbreaking!) for her the past week.
They tried the feeds today again. This time...no getting up at all except to use the bathroom. She kept a couple of ounces down this afternoon. We started some more this evening then she said she was hungry so we stopped them and ordered her dinner. By the time it got to the room she was feeling sick again and didn't want to eat. A little time passed and we started the feeds again at a slower rate. We're really trying to get some energy in her so that maybe it will help her want to do something.
Tomorrow we will try getting her up again. The NS has PT coming in 6 days a week for her....today being the day off.
Love and Prayers,
Brian and Kara
Saturday, October 7, 2006 4:18 PM
Looks like we might be in for the long haul. The NS wants her to "leave the hospital the same way she came in". That's a far cry from where she is today but hopefully she will pick up the pace and get out soon.
She's not thrown up today which is good news but she's also not eaten or drank much or done much activity.
They did start her on some feeds later this afternoon...just a little to make sure she tolerates them first, then they will increase them and hopefully it will give her some energy to want to do something.
Thanks again and keep up the prayers...we know they are helping her.
Love and Prayers,
Brian and Kara
P.S. We're trying to move to bed B in 460 since we'll have to stay!!
Friday, October 6, 2006 9:27 AM
Delaney is still in the hospital and while her head is getting much better her tummy is not so well. She was unable to keep anything down all day Tuesday, Wednesday and Thursday morning. They did a CT to make sure that nothing was blocked to be causing all the nausea and vomiting, and there wasnt..... the CT was clear except for a small pocket of air that they said could be causing the symptoms and that the air pocket would have to work its way out.
They gave her some anti-nausea meds Thursday afternoon and she ate a little ice cream. They gave her more AN meds the same evening and she ate about a half piece of a small cheese pizza. This morning they gave some more AN meds and she ordered some breakfast but started gagging when it came. So, they are waiting to see what the day brings. Looks like tomorrow might be the soonest we may get to go.
A special thanks to Dr. Bailey, the Bottigers, our church and everyone who's praying for us....God Bless you!
Love and Prayers,
Brian and Kara
Tuesday, October 3, 2006 10:18 PM (Last update Monday, October 2)
Delaney was moved to a regular room (460A) late this afternoon. She is doing well but sleeping quite a bit between the meds, sedation and surgery itself. The MRI was done late this morning but we haven't heard anything about it. We figured if something was wrong we would have heard soon after it was done. We will talk to the NS tomorrow morning about it. She should be staying 2 or 3 more days just depending on how fast she gets going. She tried to eat a little today but ended up throwing it back up. She'll have to be able to eat and keep it down, walk, talk and go to the bathroom before they let her go. Also, they want to make sure there is no infection. She was excited about the fact that she will be able to go to the playroom so we told her she would have to walk to it....that was not taken so well this evening but hopefully it will entice her tomorrow!
Again, thank you all for the thoughts and prayers. We will keep you updated as we can.
Love and Prayers,
Brian and Kara
Monday, October 2, 2006 8:30 PM
Delaney's surgery went well. They started 2 hours late but the procedure only took an hour. There were no complications. The NS said that there was a lot of pressure in the cyst and that when they cut it open the fluid sort of shot out. As they said before, they are hoping that this will stay open but there is a chance that it will close up again and start collecting fluid again. She is in PICU now, they will be doing an MRI later this evening to make sure everything is ok then after 24 hours she should be out of PICU and on a regular floor for the next few days. They have put her on steroids to prevent swelling for the next 7 days or so and an anti-seizure med for the next couple of weeks. She's awake and irritable which is a pretty good sign for her but we can't wait to hear her laugh again!
Thank you for all of your prayers, we felt them working today.
Love and Prayers,
Brian and Kara
Friday, September 29, 2006 (Last update September 21)
Delaney is scheduled for surgery on Monday, October 2nd at 12:30pm. They are doing the fenestration of the cyst that is putting pressure on the brainstem. This just means they are going to put a hole in wall of the cyst to drain it and hope that the hole does not close up again. If it doesn’t close up then it shouldn’t cause it any more problems. If it does close up then they will have to try something else later on.
She kept complaining that her neck was hurting really bad so we called the neurosurgeon and they asked to bring her in again Wednesday (27th). She also started having some marked problems with her balance over the weekend. Thursday (28th) she fell down before school and then at school started gagging and trying to throw up. The NS said to keep her home and watch her. So no school on Friday and no camp this weekend. Just a nice relaxing weekend at home…..or so we hope!
They have the surgery scheduled for 3 hours. She will be in PICU for the first day and then should be on a regular floor for the next 3 or 4 days.
We’ll update some time next week after everything is done.
Love and prayers,
Brian and Kara
Thursday, September 21, 2006 Last update (September 6)
Delaney is still in school and loving it. She’s so excited she comes home and proudly shows everyone her work she did that day. She also asks if she can go to school on the weekend! She’s not riding the bus anymore. The second day she came off the bus in tears and when asked what was wrong she said it made her seasick. On the third day she was not crying but was upset and she said, again, that it made her seasick. We asked her if she wanted to keep riding the bus and she said no. So we just pick her up from school now which is fine with us!
The ophthalmologist said that everything looked the same….which is good…..stable is always good! The oncologist said the same. Laney also saw the dentist and she has 4 cavities. All in the back which they said they were not surprised for someone on chemo. Even though they are baby teeth they will need to be filled because she will not lose the teeth for a couple years. He also gave her some special fluoride toothpaste to help out. Her next appointment with the dentist is on Tuesday (9/26) to get two of the cavities filled. She’ll have another appointment to do the other two.
We also went to the gastroenterologist to talk about removing the G-tube. There is some misunderstanding between us, the gastro doctor and the oncologist that we are trying to figure out. Laney is on an appetite stimulant which is a steroid. We have just been told that this medicine is not a long term solution to her not eating problem. We’ve tried taking her off of this before but she soon stops eating. So, do we take the tube out and pray that she eats when she’s eventually taken off the stimulant or take her off the stimulant and when she eventually stops eating, feed her at night again. The oncologist wants it out. The gastro doc wants to keep it in. We’re not sure what to do so we are praying for an answer!
Next week (29th-1st) the Children’s Cancer Center is supporting a camp weekend for families. We are going to spend the weekend at Rotary’s Camp Florida in Brandon. They have donated their campground that weekend. It will be a nice getaway for kids and grownups alike! We are all looking forward to it.
Vivian and her friend Macenzie made a Christmas card for the Cancer Center’s fundraiser that they do every year. Their card was one of the winners so we had a lunch at Carrabas, they met the mayor, got $100 (!!!) and 100 copies of their card. These cards, as well as the other winners, are sold through the Cancer Center (website below) and will be available at all bay area Publix stores on November 15. They also sell Christmas letterhead and wrapping paper. All proceeds go to support the activities of the Children’s Cancer Center.
Love and Prayers,
Brian and Kara
Wednesday, September 6, 2006 (Last update August 30, 2006)
Delaney is still loving school! She comes home everyday very tired and telling us all about her day during dinner. Yesterday (9/5) she rode the bus home and loved that also. She may have been more excited about the bus than the first day of school! She hasn’t seen the VI teacher yet but she should start seeing her within the next couple of weeks.
She had her MRI and CT scans today. Then we went and saw the neurosurgeons afterward. They said she looks great and that the shunts look good and are functioning properly. Although the final radiology report was not in, the NS took a look at the scans and said the tumor looked like it was stable. There was some concern about the cyst around the bottom of the tumor. The NS said it looked like it had gotten a little bigger. This is the part that is pressing against the brain stem. He said that since she doesn’t seem to be showing any symptoms related to brain stem suppression that we should just wait and see what happens with the next scan. Unless of course she does start showing symptoms, then we would go in immediately.
Delaney has an appointment with the ophthalmologist for just a regular check-up, the oncologist for the full results of the scans and a check-up and an appointment with the dentist for just a cleaning and check-up. These are all on Tuesday (12th).
Love and prayers,
Brian and Kara
Wednesday, August 30, 2006 (Last update August 23, 2006)
Taaah-Daaah!!!! Laney is in school! Her first day was today and she is soooo ready to go back tomorrow. There’s a picture on the photo page. (Sorry about the size but the editor isn’t editing very well!) The teachers said she did well and she has homework already! They colored and glued and read stories and got to take a nap too. They said she was a hoot to have in their class. The teacher for the visually impaired is going to work with her twice a week at the school. She’ll be learning to read and type Braille along with some other things. She’s excited about helping to get her lunch and clothes ready at night. The school she is going to is a uniform school so we had to get some quickly because we weren’t aware of that until the day before. But, the road is finally paved and she’s crazy about being a student!
She’s now eating and taking her medicine by mouth. We are not using the G tube at all. The oncologist, as well as us, want the tube to come out so we’re going to gang up on the gastroenterologist!! Hopefully, it will come out soon.
We still haven’t heard anything about the adrenal test. Last we heard they were waiting for the endocrinologist to look at the report. Not sure what’s taking so long but we assume if there’s anything wrong we would have gotten a call by now. The scans are set for Wednesday of next week (6th).
Love and Prayers,
Brian and Kara
Wednesday, August 23, 2006 (Last update August 7, 2006)
The end of August?! Laney had her checkup at the oncologist on the 16th as well as the adrenal test. A message was left for the nurses today to check the results but generally they only call if they see something abnormal. The oncology appointment went well also. They checked her out and said she is doing fantabulous! Nothing more that we can hope for upon hearing that!
We got a call from the visually impaired teacher and her IEP meeting is scheduled for Monday 28th. After that, she can start school. Now we just have to make sure everything else is in order….birth certificate, blue forms, etc! For now it looks like we will drop her off at school in the morning and probably ride the bus home in the afternoon. The bus will be able to drop her off right in front of the house. Hopefully she will like to ride home on the bus.
A dear friend of ours had a birthday party for her now 1 year old son this past weekend (19th). It was a pool party and Laney, mom and Vivian went. We all had a great time. After the first feel of the cold pool Laney pretty much jumped right in with her float. Mom was a little worried but Laney was not!
Laney’s next appointment is for scans. She has to get a CT for the neurosurgeons and an MRI for the oncologists. We have an appointment with the neurosurgeons directly following the scans so we will get instant feedback on them instead of waiting. Supposing that will be better than holding our breath for a couple of days!
Love and prayers,
Brian and Kara
Monday, August 7, 2006 (last update July 24)
Well…August already! School has begun and the big kids are doing ok their first few days in.
We met with the visually impaired teachers on Thursday (3rd). They were very impressed with all that Laney knows already. They were there doing the evaluation for about an hour. They are going to “streamline” her into school just meaning that there is no need for any further evaluations (like speech or hearing). They will write up their evaluation then we will have a meeting within a couple of weeks and Laney can start school the next day. The VI teachers already spoke with the county people and we won’t need to meet with them on the 22nd.
We had taken Laney off the appetite stimulant because she was eating from the minute she got up till the minute she went to sleep. Good to see her eating but that was way too much! As the weeks went on her eating got less and less. To the point where she was eating a waffle or a bowl of cereal in the morning and that was it for the day. We started her on a low dose of the med (about ¼ of the dose prescribed) and she is doing well now. She’s hungry for breakfast, lunch and dinner and has a couple of snacks throughout the day as well. Apparently we will need to keep her on that in the foreseeable future.
We will be going to playgroup for the next few weeks but once she gets into school we won’t be going anymore. We haven’t told her that yet but we believe she will be much more excited about school and not miss playgroup so much….hopefully!
She has a checkup with the oncologist and the adrenal test next week (16th). The next MRI is set up for September 6th and the ophthalmologist appointment is the week after (12th).
Love and prayers,
Brian and Kara
Monday, July 24, 2006
Our busy month is almost over already. Elizabeth and Vivian had an awesome time at camp the second week of July. We all had a great time at vacation bible school last week and Elizabeth enjoyed her band camp the same week. This week Dad and Elizabeth are in Ohio at Camp Perry for a shooting competition. Next week (unbelievable) school begins on the 3rd.
Laney is doing extremely well. Amazing what 3 months off of chemo will do! She is completely all over the place and it’s wonderful to see.
We haven’t heard anything from the county yet about getting her in school but we will hopefully hear from the visually impaired teacher within the next few weeks and be able to get her in soon thereafter.
The adrenal test that we were supposed to get done in June is set up again for August 16th. Her next MRI is set for September 6. She has an ophthalmologist appointment on September 12.
Love and Prayers,
Brian and Kara
****Update - July 26, 2006****
We got a call from Child Find - the county enrollment for Pre-K for Laney. She has an appointment set up for August 22. When they sent us a letter in April and said it would be "late summer", we assumed they meant the end of the school year summer....they apparently meant the actual season!!! But, none-the-less, she has an appointment with the county. We are still waiting to hear from the visually impaired teacher. Hopefully one or the other will get her into school soon. She will be so happy!
****Update - July, 27 ****
Well, praise God! The visually impaired teacher called today. We have an evaluation appointment set up for August 3.
Tuesday, July 11, 2006
An Angel goes home…….
It is with a heavy heart that we must share with you that a friends’ daughter has gone home to rest. The aggressive brain tumor took its toll on their dear Karyna last night. Delaney played with her at playgroup and it was always a joy to see Karyna’s darling face and spirit.
We ask that you lift up her parents, sisters and family in prayer to help them through the difficult time it will be in the months to come. Pray for the strength they will need to heal their hearts and minds. Pray for the people they will need to come into their lives with healing hands.
We will miss her dearly and are truly blessed to have been a part of her life and that she has been a part of ours.
Fly away on angels’ wings dear child.
Love and prayers,
Brian and Kara
Monday, June 26, 2006 (Last update June 5)*****see bottom for update*****
Not much going on the past few weeks. We’re all having a pretty nice summer…...... except for the working part!
Laney had an appointment with the oncologist on the 13th. They had to pull some blood for labs which we were not expecting. There was some blood work that came back with levels that were out of range when she was in the hospital. They wanted to pull labs and check those levels again because it looked like she may have some endocrine problems. The next regular check-up appointment is July 11th.
Right now they are worried about the thyroid and adrenal glands. Those glands aren’t the real problem, it is actually the pituitary gland which has been compromised by the tumor. But because the pituitary gland secretes hormones that control the other glands, if the pituitary is not working properly, it will show up in other glands. This is not a surprise for us. We were told when the tumor was found that endocrine problems would probably be an issue at some point.
The thyroid levels have come back normal again. The adrenal test has to be preformed at the hospital. They take some blood, give her a shot of some medication and then wait an hour and take blood again. This test is set up for Wednesday (28th).
The next month is going to prove very busy. Elizabeth and Vivian are going to camp the week of the 9th. This is a camp the church youth group goes to every year. Elizabeth has been twice already but this will be Vivian’s first year. Then we are all helping/going to Vacation Bible School the week of the 16th. Elizabeth also has band camp that week. It’s only a daily camp but it is for when she begins at Robinson in August. The last week of July Dad and Elizabeth are going up to Ohio to Camp Perry. Elizabeth will be in competition that week with her junior shooting group. The following week school will begin on the 3rd.
Love and Prayers,
Brian and Kara
****Update June 29****
The blood test did not happen yesterday. The nurses in the hospital were having problems with Laney's port. They thought it might be flipped but an x-ray showed it was ok. She got poked 3 times and they were going to do an IV but the oncologist team decided that we would wait until our regular check-up on 7/11, access and make sure the port is working properly, then schedule the blood test again. We're going to schedule the test later in the day so we can get the port accessed at the clinic, then go over to the hospital.
Best wishes for a wonderful holiday weekend!
Monday, June 5, 2006 (last update May 22, 2006)
Laney got the stitches out on Thursday (June 1st). We were a little worried that they may be hard to get out but everything went smoothly. The doctor said she acted better than most of the older patients that they had, she was very proud!
The kids are out of school now so they are home everyday playing with Laney. She is very happy about that….until it’s time to clean up! The playhouse will be used much more now! We’ll have to get another table for the playhouse though, we brought the one that was out there inside so Laney could color and craft on that instead of on the floor. It has become a great asset in the living room! So we are currently looking for a toddler plastic table and chair set.
Dad’s birthday is June 7. We will be having his favorite dinner (spaghetti) and cake (German chocolate). Laney has been making presents for both his birthday and for Father’s day! She told him the other day that he couldn’t take her to bed because one of the presents is in her room.
Before Laney was diagnosed and the rollercoaster ride started she used to give hugs that were out of this world…. Tight hugs that made you feel like nothing else mattered! Over the past year and half or so, those had disappeared. She’d hug but barely. The past couple of weeks we have noticed those hugs coming back again. It seems she’s really beginning to come back from it all.
Thanks to everyone for all the love and prayers over the past year and a half…..may God continue to bless each and every one of you as he has blessed us.
Brian and Kara
Monday, May 22, 2006 (Last update May 16)
Tuesday (16th) Laney started running a temperature. It went from a 99 to 101.9 in about two hours. Needless to say we were on the phone with the doctors wondering what they wanted us to do with the surgery pending the next day. We went into the hospital Tuesday night and they started all the blood tests and antibiotics to make sure there was no infection. The neurosurgeon said that he wanted to do the surgery regardless because he felt it was very necessary.
The surgery was done at 1230 instead of 930. All went well.....the surgeon said that as soon as he removed/replaced the valve on the left side, the fluid started flowing again. He said he also used a shorter valve this time in hopes that it will stop this from happening again. She has a follow-up with neurosurgery at the end of the week as well as oncology.
Because Laney went in the hospital with a fever, she had to stay 3 days so they could make sure everything with the cultures was ok. Whatever she had must have been viral but we were able to come home Friday afternoon.
We missed both the neurology appointment and the evaluation with the visually impaired teacher for Friday (19th). Neurology will be rescheduled and the evaluation will have to be set for August since these teachers do not work over the summer. It was a little disappointing because Laney won't be able to start school on the first day but they said they would put her at the top of the list and she would be one of the first so she could start soon after.
Delaney is doing very well. She says her stitches hurt a bit but overall she feels much better.
Thanks for all the thoughts and prayers,
Brian and Kara
Tuesday, May 16, 2006 (last update May 9, 2006)
Delaney had the appointments on Friday with the ophthalmologist, gastroenterologist and the oncologist as well as the CT/appointment with neurosurgery yesterday. The oncologist said that she was looking pretty good. Her counts are continuing to go up. They wrote a prescription for antibiotics by mouth instead of having to get them infused every month. We do have to be seen every month for the next 6 months or so just to check on her counts and any other problems that may/may not come up.
The gastroenterologist was extremely happy with her weight. She's up to the 75th percentile of her age and height. We can stop the feeds over night as long as she continues to eat well. He said if she has a day or two that she doesn't eat, we can put her on. Her tummy tube is still in for now but if her weight continues to be stable, we could possibly get the tube out before the end of the year.
The ophthalmologist said that there is no swelling on the nerve, but that didn't mean anything. With the chronic damage that was done to the nerve already, he said it would take tremendous pressure for there to be swelling again. So, the fact that he didn't see anything "wrong" doesn't mean that there isn't anything wrong. Her vision seems the same 20/60 at best in the left eye but he was thinking more along the lines of 20/80. And no way to tell in the right eye because Delaney won't even try to read anything through it alone. He said the worsening nystagmus could indicate higher pressure also but again, not necessarily. It could just be a condition coming from the tumor.
The CT scan went well. Laney didn't need to be sedated at all for that. So we starved her all day for nothing! ha! The neurosurgeon said that he does feel the shunt is in failure, but that it is only a small piece of the tube on the left since the right ventricles are fine.
She has an appointment (provided she is out of the hospital and doing well) with the neurologist on Friday (19th) just for a regular check up.
We also have an appointment Friday for evaluation with the visually impaired teacher for school again, if she is well enough to do the appointment. They actually come to the house so Laney would not have to worry about going anywhere. The teacher mentioned that by the diagnosis alone (optic glioma), Laney already qualifies for the program and that they really just need to evaluate her for placement within the program.
With all of this, Laney is doing well. There are really no symptoms of the shunt failure other than a little bit of crankiness which could be attributed to being a normal 4 year old!
Love and Prayers,
Brian and Kara
Tuesday, May 9, 2006 (last update, April 25)
The past few weeks have been great without chemo. Laney’s appetite has been going up and up. Her weight is not fluctuating like it was either. She had an MRI on Friday (5th).
Laney’s sister’s (Vivian's) birthday was the 27th. We celebrated with dinner and cake at Carrabas and all had a great time. Vivian also had an orchestra concert the following week ( May 4th, she plays the viola), which she did very well in.
The weekend of the 5th we went to Orlando for a shooting competition for sister Elizabeth. She is on the Junior Shooting Team at the Wyoming Antelope Club. We decided we could all use a getaway for the weekend. While dad and Elizabeth were at the range in competition (Saturday and Sunday), mom and Laney and Vivian did a little shopping/sightseeing and then hung out at the pool for a little sun and relaxation. Laney had the best time in the pool…she was swimming with the help of a ring. Splashing and jumping a little and spinning around all by herself. It was a welcome change in routine. And Elizabeth did a great job in her shooting.
Delaney has an appointment to see the ophthalmologist and the gastroenterologist on Friday (12). These are just her normal check-ups.
We also have an appointment on Friday to see the oncologist for the MRI results however we got a call from the neurosurgeon today (9th) concerning the MRI. They found that her left ventricle was enlarged again. This is the one that was the worst when she was diagnosed. It’s not quite as large as it was at diagnosis, but still a problem. They will be waiting results from the ophthalmologist as well as a CT scan now scheduled for Monday (15th). We will see the neurosurgeon directly after the CT scan is done. From there they will asses what the problem seems to be and decide what to do about it. Apparently, the headaches that she has been having may not have been only from allergies but the pressure that is building in her head again.
The good news about the scan was that the tumor itself was stable from the last MRI in January. No growth is a great thing. We will update again after the CT scan and decision on what to do about the shunt/hydrocephalus.
Continued love and prayers,
Brian and Kara
Wednesday, April 12, 2006 (Last update Tuesday March 21, 2006)
***Update - 4/25/06 - Laney had her last treatment on Friday, April 21st and is doing well! Praise God!***
***Update - 4/20/06 - MRI is scheduled for May 5. Results most likely to come the following week.***
Laney started her last cycle on Friday (3/31)! She was able to get the treatments on the 31st and April 7th. As long as she is able to get the next two on time, she will be done on the 21st. She will be due for an MRI within a couple of weeks of completion. Assuming that the results will be the same (stable or maybe a little shrinkage), we then go into a wait and watch period. She will have MRI’s every three months for two years then go to every six months. Long term looks will be watching for symptoms, vision and any endocrine issues that may come up especially around the time for puberty.
She had been sneezing and having a runny nose over the past few weeks. With a family full of allergies, we asked the doctor about taking her to an allergist but found out that she can’t have any allergy tests done until she’s been off chemo for a year. They prescribed Claritin for her which seems to have stopped the allergy….whatever it is.
We are trying to get Laney into a school program for low vision students. For now we have been told that they are getting us an appointment for evaluation but have not been given the actual date yet. She really would love to get back into a class again. Hopefully this will be done sometime before the next school year starts.
Aside from the MRI she is due at the end of the month, Laney also has appointments with the ophthalmologist, the gastroenterologist and the neurologist at the beginning of May.
She’s having a great time at the Children’s Cancer Center. This past week they did an Easter egg hunt at the playgroup. She brought home 12 plastic eggs with candy in each one and had to show all of us (separately, mind you) each egg and what was in it!
Her counts have been great lately so she was able to go see the movie she wanted to see….Curious George. She really enjoyed it.
Love and Prayers,
Brian and Kara
Tuesday, March 21, 2006 (Last update Tuesday February 28, 2006)
The audiologist appointment on Friday (10th) found that all of her hearing is normal. Not sure what that means of the other tests but it seems there is nothing wrong with her hearing. There will be no further testing unless her protocol/oncologist recommends it.
Laney was able to get chemo on March 3rd and 10th. The 17th was a break week but she had to get her antibiotic. She has to go back on the 24th just to get her counts checked and she should be able to start her chemo again on the 31st. This will be the beginning of the last cycle! She should be getting an MRI towards the end of the month as well.
A few weeks ago we started noticing that Laney’s eyes were “wobbling”. It’s called nystagmus. Her doctors have seen it but only slightly over the past year. This was not something that was ever noticed prior to diagnosis however, it is a symptom of this type of tumor. The fact that it is “normal” made us feel a little better but it seems to be getting a little worse since we noticed it. She hasn’t complained of any other symptoms that can usually accompany nystagmus like balance or vision problems. She has an appointment with the ophthalmologist the first week of May.
Love and Prayers,
Brian and Kara
Tuesday, February 28, 2006 (Last update Tuesday, February 14, 2006)
Laney saw the gastroenterologist on Friday (17th). He was (again) happy with her weight and said her button was looking ok. He said to keep doing what we are doing to clean it and it should clear up completely soon (which it has). He wants us to continue the feeds at night and get her weight up some more. He also wants to wait until she is off chemo for a while before taking out her button. He will see her again May 12.
She was not able to get her chemo on Friday (24th) because of low counts. One was very low and another was low but not low enough for any transfusions. This is the first time since she’s been on the new antibiotics (December) that she has had low counts. She was ok for chemo on the 17th and we will be checking again on Friday (3/3) to make sure the counts are back up and she’s able to get the chemo. Unfortunately, this also delays the end of the protocol. It should still be in April, just a week later.
Laney saw the audiologist again (24th). This time we went in the morning before the chemo. She was a little better but apparently was rather board with the “game” they decided to play. Again the results of the manual (beep, beep) tests were inconclusive. And again the automated one showed that there was some loss from last year. Apparently there is more loss in the right ear more than the left. Since the other test was inconclusive, they want to try one more time so she is set up for an appointment on March 10. If this goes well, they will determine if the chemo is causing any serious problems in her hearing and will have to “adjust” the treatment, whatever that means. Here we are at the end so our question is, what does it matter now? She seems to have functional hearing. If the next appointment is again inconclusive, they want to do a different automated test in which she will be sedated (more or less) and they use a computer to figure out what she hears/doesn’t hear. We’re not sure yet if we will go this far.
Tuesday’s (2/28) playgroup had a special adornment. Westshore Pizza invited the group for pizza. Westshore Pizza is one of the sponsors for the (4th annual) Celebrity Outdoor Weekend happening April 7th and 8th whose proceeds benefit the Children’s Cancer Center. Mike Alstott is on the board at the CCC and also hosts the weekend. He was there at Westshore Pizza playing and talking to all the kids in the group. Delaney was none too happy to be somewhere different when we first got there but warmed up pretty quickly. Soon, Mr. Alstott was sitting next to her playing with Play-Doh! There were about a million pictures taken and the photographer is going to send a disc to the center who in turn will be forwarding some of the pictures to us. Westshore Pizza is also going to be sporting some of the pictures in all of their bay area restaurants.
Love and Prayers,
Brian and Kara
Tuesday, February 14, 2006 (Last update January 28, 2006)
Delaney did not see the gastroenterologist on February 3rd. It had been raining pretty hard nearly 24 hours by the time we were going to leave so we called to reschedule. We did not want to take Laney out in that kind of weather since she was not sick and also didn’t want to risk the flooded areas. Apparently we were not the only ones as the person who answered eluded to us being in a long line of reschedules for the day! She will see him on Friday (17th).
She was feeling fabulous for her birthday (4th) this year. She wanted to go to Olive Garden so we went for an early dinner. We took along her (homemade!) Blues Clues cake. She had chicken fingers, French fries, a couple of black olives and a piece of cake. She was feeling so well that we took her to the toy store afterward so she could pick out a couple of things for herself.
Delaney started another chemo cycle on Friday (10th). She did so well getting her port accessed after being off for two weeks. She didn’t cry at all. They did the normal pre-meds and fluids but as soon as the Vincristine (one of the chemo meds) was through she started complaining of bad pains in her legs and that her tongue hurt. These actually are normal side effects from the Vin but they usually don’t appear until a few days after it’s been infused. The doctors decided that they would lower the dose of the Vin from this point forward because of the reactions that she has had (this one and the one in December). Though the reaction is not new or unseen, it seems she is a little more sensitive to the med and they will adjust the dose.
The doctors also took a look at her Mic-Key button. There is a place around it that looked to us like it was not doing too well. It’s still seeping some and looked like there was some scar tissue (or something?) coming out of the wall around the button. They said this was actually caused from her gaining weight and didn’t look infected. (It’s been 9 months since she had it placed and she’s gained almost 10 pounds since then). Since we are seeing the gastro doctor on Friday they said to just keep doing what we’re doing and unless it becomes painful it should be fine to wait.
Because of the look of her button and since she was on her two week break we haven’t been giving her the night feeds. We’ve also started giving her meds by mouth over the last week or so. Laney is now up to and maintaining about 34 pounds without any extra feeds. It’s possible that she could get the button taken out soon but we will have to wait and see what the gastro doctor thinks. We’re a little apprehensive to have the button taken out just in case but at the same time excited to think that she’s past the failure to thrive diagnosis!
She had an appointment with the audiologist on Friday (10th) also. They have an automated “hearing” test and a manual. We were surprised to find that the automated one indicated that she has actually lost some hearing. The manual hearing test (with headphones and beeps) was inconclusive. Laney was not consistent on some of the ‘beeps’ she was hearing and they were not sure if it was because she was tired or distracted or really couldn’t hear. We scheduled another appointment for the 24th and she will be going in the morning and having chemo after instead of the chemo first like this time. It’s more likely she will feel like doing more and be consistent then.
Love and Prayers,
Brian and Kara
Saturday, January 28, 2006 (Last update January 9th)
God continues to bless us…..
A year ago the doctors told us the best we could hope for was to stop the tumor from growing and keep it stable. This week (27th) the MRI results showed the tumor mass actually shrunk a little. (The cystic part stayed the same.) They were very excited by the news. We were too as you can imagine. Delaney has 2 more six-week cycles left (4 on/2 off) then she will be done with this protocol. If things go on the timeline they are currently on, that should be April 28th. This will be the same time that her next MRI is due as well. We will continue to pray for the tumor to stay on the track of shrinking in size. This may give us more options in the future. Delaney is on the 2 week break of this cycle so she will not have to see the oncologist until February 10th.
She will be seeing the gastroenterologist on February 3rd. This is just the follow-up to the last appointment to make sure that her Mic-Key button is looking fine.
Delaney will also be getting a hearing test again. She had it tested at the beginning of the protocol and while she is not showing any difficulty, we asked that she be tested again. She actually seems to have “super” hearing sometimes! We will be setting up the appointment in the next couple of weeks.
Her counts looked pretty good on Friday (27th). One was slightly low but overall she’s doing well. She went with her grandmother, aunt and sister to Lowry Park Zoo on Saturday (28th). She was a little apprehensive at first but then had a lot of fun petting the animals, seeing the new baby elephant, eating pizza and even riding a ride! She said she can't wait to be able to go back again. We will post some pictures as soon as we get them downloaded.
Delaney’s birthday is coming up on February 4th. She asked for a Blues Clues cake this year. This will be the second week of her 2 weeks off so she should be feeling great this year.
Love and prayers,
Brian and Kara
Monday, January 9, 2006 (Last update, December 30, 2005)
Delaney’s had a rough couple of weeks. She seemed to get sicker over the New Year. She started running a low fever on Sunday (1st). The fever ran through Monday and cleared by Monday night when she woke up with a rash on Tuesday morning. The rash stayed for a couple of days then went away as well. She also had quite a cough through Friday (6th) to the point of making her throw up a few times. She stopped eating around the first and still isn’t eating or drinking much. She’s had about 5 fish sticks, a couple of fruit snacks and maybe a cup of apple juice in the last 2 weeks. She’s lost about 4 pounds over the last couple of weeks so we started giving her more at night. There was some seeping around the tummy tube that was causing some redness and pain as well. It got worse as the coughing did so we figured it was because of the cough that she had.
Delaney did not get chemo on Friday (6th). Although her counts were somewhat low, at this point in the protocol they would normally give the treatment anyway. The only reason that they didn’t is because she was feeling so bad. They asked to put it off a few days only and not an entire week so they could stick as closely to protocol as possible so she will be having the chemo on Tuesday (10th). They also found that along with the phosphorus being low, her magnesium levels are low. They have put her on a supplement for that too. They also took a culture of the seepage around her tummy tube just to make sure that there was nothing in it.
Delaney has been having a lot of anxiety over getting her port done for treatment. Since she had the reaction, she’s started crying even before we leave home. We had her to a point where she didn’t even cry when they were inserting the needle. The doctor’s prescribed a small dose of Razepam to be used before she gets to the office. It’s supposed to help her relax a little so that she’s not so anxious. This Tuesday (10th) will be the first time we are trying that but hopefully it will help.
Delaney saw the gastroenterologist on Friday (6th). According to his charts she only lost 1 ½ pounds and her height/weight proportion is very good. We had already added a can of Pediasure to her night feedings but he asked to go up to 4 since she is not eating at all and then to decrease it as she gets her appetite back. He said that the seeping was probably because of the coughing but it did not look infected. What actually is seeping and causing the pain and redness is stomach acid so he said to put some Maalox around the tube sight and it should clear up, which it has. He wants to see her in a month to make sure everything is resolved so she will see him again on February 3rd.
The doctor's office called today about the culture that they took on Friday. It was positive for strep. This means that the rash she had was actually scarlet fever and not an allergic reaction like originally thought. She will be starting an antibiotic to clear up the infection.
The MRI is scheduled for January 20th. Please pray for shrinkage or at least no enhancement (growth). We will most likely not hear anything until the 27th so check back for an update!
Love and prayers,
Brian and Kara
Friday, December 30, 2005 (last update December 20)
Delaney started her chemo again on Thursday (22nd). It brought with it a pretty scary scenario. They gave the Zofran (used for nausea), both of the chemo meds and were about ¾ of the way through the antibiotic (Pentamadine) when she started feeling really sick. They stopped the med and started pushing some Benedryl when she began squirming in her chair complaining about her feet, her arms, her neck, her teeth and finally she just said “everything hurts”. She then became verbally combative and wouldn’t let anyone touch her to do anything and wouldn’t answer any questions with anything but “NO”. She also started heaving, trying to throw up. The squirming lasted about 2-3 minutes then it seemed to settle with the exception of the pain in her neck. They were going to give some Tylenol but figured she wouldn’t be able to keep it down yet since she was still heaving some. About 25 minutes from the beginning of the episode she began to settle down and succumb to the Benedryl. She was still somewhat combative though. They then decided that she should go to the ER for observation for a couple of hours to make sure that no other symptoms showed. She slept most of the time in the ER but every time she woke up she complained of wanting to go home which we finally were able to leave after about 3 ½ hours. She seemed to be fine after that.
They are not sure what happened, why or what caused it. Right now it is just a wait and see situation.
This last Thursday (29th) for chemo they decided to change a couple of things given the reaction last week. They are now hanging the Vincristine over 6 minutes instead of pushing it through like they were. They decided to not give the Pentamadine at the same time as the chemo so we will need to go in on a different day to get it. They also are going to give her Benedryl before they give the Pentamadine to stop any allergic reaction and/or nausea. She’s done well this weekend though she lost 2 pounds in the last week. She hasn’t been eating so well since she was taken off the Zantac. We decided to put her back on since her eating went so downhill. She’s been back on for about 5 days now and started eating pretty well today even after her treatment. She actually asked for hotdogs and pudding when we went to the store.
She will see the gastroenterologist next week along with her regular chemo treatment. He was pretty excited about the last time she came in at how great she was doing. We’re expecting to hear the same this time.
Christmas was wonderful. Delaney got the doodle bear that she wanted. It was the 2nd or third thing that she opened and was very excited when she saw it. She also got a wagon so we can go for walks and she can ride in it. The big kids (all of us!) got all sorts of great things that we all wanted as well.
New Year’s Eve mom and dad stay home to welcome the New Year with the kids. We have a picnic in the living room with all kinds of junk food and watch whatever we can find on TV. Then watch the ball drop about 10 minutes to midnight. And then listen to all the fireworks going off till the wee hours around the house!
Love and prayers to all and a Happy New Year!
Brian and Kara
Monday, December 12, 2005 (Last update November 21)
A lot has happened in the last 3 weeks. Delaney has gotten two more treatments (11/25 and 12/2) and done pretty well after both. She’s not getting nearly as sick as she used to when she first started. The 11/25 treatment was not so good of an experience. Since the office was closed we went to the hospital to get it. The floor nurses couldn’t seem to find the port to access it so after poking her twice we told them to stop and get the IV nurses up to do it. They poked her only once and they were done. Then after 10 hours we were finally ready to go home. (In the hospital, you have to get all kinds of blood work and urine dips before they will do anything.) I suppose the lesson here is 1) don’t go to the hospital for treatment unless you have no other choice and 2) get the IV team to do the port. But all that is over and Thanksgiving was spent with the family the day before so all is well now.
On the following Friday (12/2) her treatment was back at the office. They found out with all the blood work at the hospital that her count of phosphorus was low. Apparently the chemo can have great affects on vitamins and minerals in the body. She is now on a phosphorus additive.
They also mentioned that the rosy cheeks (from the new antibiotic) could be a sign of a potential allergic reaction. They are going to give her a dose of Benedryl first (before they infuse the antibiotic) and see if that will stop any further reaction.
Delaney is on her two week break now and is due to start the next cycle of treatment on 12/22 (they are closed Friday 23rd). She will also get the next dose of antibiotic the same day. Her counts last Friday (9th) were a little low but will go up (hopefully) quickly.
December 1st our family was invited to the tree lighting party at the Sheraton (on Cypress). Every year the Sheraton throws the party for the Children’s Cancer Center. They had Bucs, Lightning and Storm players there signing autographs, food, crafts, free beanie babies, and Santa with some elves handing out stuffed animals. Delaney happily went to sit on Santa’s lap and tell him what she wanted for Christmas. She told him she wanted a Doodle Bear. He said he would be glad to get her one and that he would also bring her a game and something red (because that’s her favorite color). After we went back to the table she was asking where her Doodle Bear was. I said you have to wait for Christmas. She said “but he said he would get me a Doodle Bear”. So she’s not down with the whole “time” and “waiting” thing!!! By the way…. If someone (who shall remain nameless) would not have forgotten their camera, you would see a picture of Delaney sitting on Santa’s lap.
Friday (9th) we went to the ophthalmologist for a check up. Since it’s been almost a year since the pressure has been taken off the optic nerves he feels that he can now see the extent of the damage. The right optic nerve has considerably more damage than the left. She was a little more helpful this time in talking with him about the eye chart but still rather shy about it. He said that she picked something out on the 20/60 line with the left eye (right eye covered) but that doesn’t mean that she can’t see better than that. She really wouldn’t do anything when he covered her left eye. He doesn’t think that there will be any further damage showing up unless pressure is placed on the nerves again. He also doesn’t think that her vision (whatever it is) will get any better. The more that she can communicate with him, the better he will be able to tell what her vision is. Our question now is (since someone, who again will remain nameless, forgot to ask) can vision degraded by nerve damage be fixed with glasses? (As opposed to normal loss of vision which is caused by changes in the lens in the eye itself). Her next appointment is in April of next year unless there are any problems.
Delaney doesn’t need to see the doctor this week since her counts were ok. On Sunday (18th) the doctor’s office and the American Cancer Society is throwing a Christmas party for all the hematology and oncology children. They are going to have Santa giving out presents to the kids. I hope that she is not too disappointed when it’s not a Doodle Bear!!!
Love and Prayers to all and have a Merry Christmas,
Brian and Kara
Monday, November 21, 2005 (Last update - Friday, November 11)
Today (11/21) is Elizabeth’s birthday. She is 14 today! Happy Birthday Elizabeth…. We love you!!!
Delaney’s counts went way up this week so she was able to get her chemo Friday (11/18). They were also able to give the new antibiotic in the same appointment as the chemo so we were there a couple hours longer than normal. We will have to do that once a month.
She seemed to do pretty well this time……Didn’t get sick like last time. She did get some rosy red cheeks from what we assume was the new medicine. She looked like a little porcelain doll with the milky white skin and the rosy cheeks. It was cute though we need to find out from the doctor if that is a sign of a problem. She didn’t have any other problems at all.
Because the doctor’s office is closed on Friday (11/25), Delaney will be going to the doctor on Wednesday (11/23) to get her counts checked. If they are good, she will be getting the chemo in the hospital on Friday (11/25). She will be admitted but only to get the chemo and then we can go home. We had an option to do the chemo on Monday (11/28) but then the next few treatments would have to be on Monday’s as well and unfortunately, we couldn’t work out our schedules to do that.
The neurologist was happy with Delaney’s check up. She still doesn’t have the reflex in her left leg but has adapted well. The doctor said that the reflexes could come back after her chemo is done or it could be permanent. They will not know until the chemo ends and then about a year after. She’s happy to see Delaney walking and running around without any real problems though. Her next appointment is in April of next year unless she starts having any issues.
Friday, November 11, 2005 (Last update Sunday, November 6)
Delaney’s counts were way down today (11th). Two of the counts went up slightly but the other went down considerably. She is on Septra which is a preventative antibiotic. They have found that in some cases, long term use of Septra can cause the immune system to not be able to recover as quickly as needed from the chemotherapy. The doctors decided that she will be taken off the Septra (today is her last day) and put on a different antibiotic that will get infused through her port once a month. They have to wait at least a week in order to be able to give her the new antibiotic so they don’t overload her system which could cause other problems. We have yet to find out if she can have the new med at the same time as the chemo. Some chemo’s are contraindicated in close infusion with antibiotics. If we can do them together then we will just be there for about an hour or so longer than normal on Fridays because the antibiotics are infused over an hour. If not, we will have to go another day and do it.
We have put Delaney back on the appetite stimulant. She was off of it for about 10 days and seemed ok but as the days went by her appetite decreased a lot. Since she's been back on it she has started eating a little better.
She will see the neurologist on Friday (18th) before the oncologist. We’ll see how the doctor thinks she is doing but we think that she is doing really well.
She’s moving and grooving around the house quite a bit, running and playing. She loves playing games and putting puzzles together. When she is out she’s very careful. She is so protective over herself that she tends not to play at all. She is doing better at playing at the playgroup on Tuesdays but still a little reserved.
Love and Prayers to all,
Brian and Kara
Sunday, November 6, 2005 (Last update below)
Just a little snippet... not enough for a full update:
Laney could not get her chemo on Friday (4th) because of low counts again. There are three counts that they watch for her. One was too low, one was getting low/borderline and the other was ok. Hopefully they will all be up by next Friday (11th).
Wednesday, November 2, (Last update October 24)
Delaney was able to get her chemo on Friday (28th) as her counts were back up. She ended up pretty sick Friday evening and Saturday but was better after that and even was eating some on Sunday. She’s been taken off the appetite stimulant and still seems to be eating about the same. Not as much as she needs to be taken off the nightly feeds completely but she’s at least attempting to eat.
We will see this Friday how her counts look since they weren’t as high as we thought they would be being off chemo for 3 weeks. Hopefully they will still be ok. She tends to complain about her neck hurting a lot in the days following the treatment but we try to just massage it out and/or redirect her attention to playing games or something.
Halloween met us with a 3 year old that could not be talked out of getting her costume on as soon as she woke up. “But it’s Halloween,” she said. So the princess was dressed at 5am and wore the costume for a little more than half the day before she was tired of wearing it. She also knew she was supposed to be going somewhere (even though her sisters had no desire to go anywhere, i.e. trick or treating) so the question was “Where are we going to go?” We decided she would go to the store with mommy to get all the stuff for that evening. We had a picnic on the living room floor with nothing but junk food and watched Halloween movies until bedtime. All had fun!
Delaney will be seeing the neurologist on the 18th. We will mention to the doctor the pain in her neck and see if we can do anything else to help with it. Of course the pain in her neck might be us :o)
Hugs and Prayers to all…
Brian and Kara
Monday, October 24, 2005 (Last update Wed, October 12)
Delaney was unable to get her chemo on Friday (21st) because one of her counts was too low. They will check her again next Friday (28th) to make sure all the counts are high enough and start her chemo again.
She got her flu shot without too much incident. She didn’t have any local or systemic reaction to the shot which was a real relief. Unfortunately she will need to go back in a month for a booster since she’s never had the flu shot before. Since she seems to have a really good memory, it may be harder to calm her the next time!
The MRI results were the same as the last overall. The doctor said that there is a small part of the cystic portion that was “enhanced” but that they were not concerned about it. The enhancement could be from some swelling or some still live cells. He reminded us that since the type of tumor she has is so slow growing, it is also very slow to respond to treatment. The tumor itself has not changed which means no growth (enhancement), only the cystic part around it has changed slightly. Her protocol will remain the same for the next few months (4weeks on, 2 weeks off). The next MRI will be scheduled in January.
Since Delaney’s been off of chemo for three weeks now she is really kicking it up. She’s up playing and goofing off. It’s been awesome seeing her returning to being a little 3 year old. :o)
Wednesday, October 12, 2005 (last update September 28)
Delaney's MRI is scheduled for Friday (14th). We don't expect to hear anything until the following Friday (21st) unless something is wrong... which, of course, is not an option!
She was able to get her last chemo (9/30) so she’s been on her two week break and enjoying it. She is starting to eat again and even trying some new things sometimes. Blueberry seems to be her new favorite flavor of things… poptarts, yogurt, muffins, etc. She even likes fresh blueberries to eat! She will begin her next treatment on the 21st.
Delaney had her first night away from home, ever. Since she was on her break and she wouldn’t be sick, she spent the night at her aunt’s house and had a good time. It took some convincing at first but once she got into the car and on her way she was ok. Elizabeth (her oldest sister) went with her just to help her comfort level. Course, she took all of her favorite things too which amounted to two bags, a pillow and a blanket! But she did well and said she would like to do it again some time. Mom and Dad (being childless (Vivian went to her grandmother’s house) for the entire evening for the first time in 3 years!) went to dinner and watched a movie and then to breakfast the next morning. So the night was enjoyable for all!
She will be getting a flu shot this year (17th). The oncologists said they prefer that the kids do get them. We’re not looking too forward to it since she gets stuck so often now, it’s yet another stick. This will be the first time she’s seen her pediatrician since she was diagnosed so he will be glad to see her. He is kept in the loop with what is going on but just doesn’t see her.
Wednesday, September 28, 2005 (Last update September 18)
Delaney did not get both chemo meds on Friday (23rd). She started complaining that her right leg was hurting. This is the leg that the neuropathy is the worst in but she hadn't complained about pain in her leg(s) in a long time. The doctor decided that we could hold off the med that was causing the neuropathy.
She did so awesome with getting her port accessed. She now tells us "I won't cry" whenever she's sad/upset but wants to be a big girl. So when she said that before the nurse came in we were a little surprised. But she didn't cry at all. She took big breaths and that was it.
She is still having the nausea for the first couple of days after chemo. Monday (26th) morning about 3am we woke up to her throwing up and she choked a bit because she was lying down. She was calmed after a bath and a clean bed, just tired, so she went back to sleep.
Delaney saw the gastroenterologist Wednesday (28th). He was very pleased with her success and maintenance of weight gain. She averages about 31 pounds between the 4 weeks on and 2 weeks off chemo. This puts her in to the 50th percentile of weight for kids her age. We're all pretty excited about that considering that back in January she didn't even make the chart.
She will see the gastroenterologist again in December (21st) as well as the ophthalmologist (9th). The neurologist she will see in November (18th). These are all just regular follow-up appointments.
Providing her counts are ok on Friday (30th) this will be her 4th treatment in this round and she will have 2 weeks off again. We are hoping that they will be setting up another MRI in October. They have been doing them about every 3 months and that will be three.
Sadly enough, Delaney has come to realize that kisses no longer make owies feel better... not even for her stuffed animals. We seem to remember the other kids being 6/7/8 before they "knew" that kisses didn't help but they were nice to get anyway. It's hard to comfort her sometimes when she's in pain but we try to just sit and cuddle to get through it.
Sunday, September 18, 2005 (last update August 21)
Delaney started her chemo again two Fridays ago (9th). These past two times it seems to have hit her pretty hard. She’s getting sick to her stomach again and sleeping much more on Saturdays and Sundays. She also seems to be in much more pain this time than times prior. She’s complaining about her neck hurting so we will need to talk to the doctor about that. The rest of the week is just recouping from the weekend. By Friday she is back to eating a little more but of course then she gets her treatment and that goes away again.
She has an appointment with the gastroenterologist this Wednesday (21st). Just a checkup to make sure her weight is good and is still growing. She was up to 36 pounds before she started chemo two weeks ago. Since she’s not eating again, she may have lost one or two. Still, at least now when she loses a pound or two it is not so devastating.
Sunday, August 21, 2005 (Last update August 17)
Delaney was able to have her chemo on Friday (19) but they found that one of her counts in particular was getting pretty low. Because of that, they want to see her on Monday to make sure that it goes back up but if it doesn’t they are going to do a blood transfusion. They “typed and crossed” her on Friday before she left which just means they took blood and will make sure that they have the right blood for her on Monday if she does need the transfusion. Aside from that, since she was able to have the chemo on Friday, she will have the next two weeks off except for the blood counts which is just a finger poke.
She also saw the ophthalmologist on Friday. He said that everything looks about the same as last time except that the right optic nerve looks slightly more pale than last time. The paler a nerve gets the more damage that was done to the nerve. He said that it will take about 6 months to a year in order to see all the damage that was done from the pressure that was on the nerve but he didn’t expect to see any significant changes in the nerves from where it is now. The nerve, or nerves could pale a little more but that should be about it. She will see him again in December.
Delaney is eating pretty well sometimes. A few days ago she ate almost 2 whole pieces of pizza! She usually sticks to the same things which are generally a slice of cheese, a piece of bacon, some black olives and some chips. We’ve been trying to get her to try new things but she’s been very reluctant in doing so. Today she was talking about apple pie because it was on one of the cartoons she was watching. We asked her if she wanted some and she said yes… so off to the kitchen to bake the apple pie we went! We figure we will worry about food choices later on, right now we just want her to eat.
***Update Monday (8/22)***
Delaney's counts were up so she did not need to be transfused today... Praise God! She will go back to the doctor on Friday (8/26) to check her levels again but no chemo.
Wednesday, August 17, 2005
Delaney has been doing very well for the last few weeks. Her counts have been up until this last Friday (8/12) but she is still feeling good aside from the normal pain in her toes and sometimes her neck. She’s had very little nausea and was literally running around for the last couple of weeks. It’s wonderful to see her getting back to being 3.
She still has some problems with the neuropathy but it is not slowing her down like it was before. The neurologist said that she is doing much better than when she had seen Delaney before. She is due to see the neurologist again in mid-November for a regular checkup.
Delaney is having a great time at the playgroup on Tuesdays. She really looks forward to going and gets very disappointed if she can’t go. She has pretty much learned our schedule and knows when and who goes to work, when grandma comes over and when she is supposed to go to the playgroup. She’s a little too smart for her age!
This Friday (8/19) we are going to see the ophthalmologist for a regular check up. She doesn’t seem like she’s having quite as much trouble seeing as she did before. Every now and then we notice that she isn’t seeing something but it’s usually peripheral vision which is what we have maintained was a problem all along. The last time he saw her he said that the pressure on the optic nerve was gone so we hope that is still the case.
If Delaney is able to get the chemo treatment this Friday (8/19), it will be the end of the 3rd round in this cycle. She will have 5 rounds to go which should take about 8 more months with MRI’s about every three months. Our prayers are that she keeps handling things as well as she is throughout the rest of the cycle.
Thanks again to all of you for your continued prayers and support. You all are in our prayers as well.
Saturday, July 23, 2005 4:53 PM CDT
Delaney’s MRI results came from the doctor on Friday (7/22) along with her blood counts. The counts are very good so that she will be able to go out and have fun this week and she will also be able to start the next round of chemo next Friday (7/29). The MRI shows no change in the tumor and that the shunts are looking like they are supposed to. Their hopes for now are to keep the tumor stable and stave off any need for radiation for as long as possible. So long as she is handling the chemotherapy relatively well and the tumor is stable they will continue the complete course of the 18 month treatment. She will have the MRI’s done approximately every three months so another one should be done around October.
She is due for a neurological exam next week to try to keep a handle on the neuropathy though she seems to be doing ok with that too. We’re having her walk and ride her tricycle as much as possible to try to help with the muscles and nerves. She is also due for an eye exam next month.
Delaney is beginning to lose her hair again and has lost some of her eyelashes. It isn’t too bad, just losing more hair lately when we brush it than she had been. It’s starting to look thinner especially on the top but she loves wearing the hats she has so it’s not noticeable to most when she is out.
She went to vacation bible school this past week and had fun singing, dancing, making crafts and watching videos. She only went a couple of nights but really had a blast. She’s got so much more energy now and wanting to go places whenever we go. She’s great at shopping because she doesn’t want anyone to stop, just keep walking around so we can’t look at anything to buy!
Friday, July 8, 2005
Delaney was able to get her chemo again the last three Fridays (6/24/05, 7/1/05 and 7/8/05) though her counts were low this last time, they weren’t too low to not allow the treatment. So now, 2 weeks off of chemo! We will only need to go back for blood counts. She is still doing pretty well on the treatments though this last week she is complaining of more pain in her toes. The doctors say that the pain she is experiencing in her extremities actually feels like severe pins and needles. We rub her toes and legs when she complains about the pain and she says that it helps it but we are not so sure! :o)
She loves the playgroup that she is in and looks forward to going every week. They do crafts and games and play out on the playground. So far she has made two necklaces and a picture frame! The Children’s Cancer Center really has it together in taking care of the whole family for people dealing with pediatric cancer. They not only have groups for the child with the cancer but groups for the siblings, parents and extended family as well. They are also a wealth of information on everything from treatment to school.
Delaney saw the gastroenterologist on Tuesday (7/5/05). She lost 2 pounds since her visit 2 ½ weeks ago. We explained that when he saw her last, she was on her 2nd week off the chemo treatment so she was eating very well and that since starting her treatments again, has hardly been eating at all. She actually lost 2 pounds the first week that we took her off the feeds and we started back on over night feeds though at a lower rate. He said that was fine and wants us to keep giving her the feeds especially while she is getting the treatments and he upped the dosage of one of her meds. He doesn’t want her to lose any more weight so we are really going to have to watch to make sure she maintains where she is. He will see her again in 3 months (September).
She is scheduled for another MRI the week of July 18. From the MRI they will be able to track the progress and will change her protocol if needed to adjust for weight/height differences and any changes in the tumor.
Overall, Delaney looks great and is doing pretty well. The weight gain has been the greatest relief for us so far. Not only does she want to do more things now but she has the energy to be able to do all those things without getting so wiped out. It’s interesting how children learn to adapt so quickly to things. Her port and button and “bumps” on her head have become just another part of her.
Sunday, June 19, 2005
Delaney has been doing very well the last couple of weeks. The time off of the chemo has been great for her. She's felt really good most days and has been hungry and eating pretty well.
She went to the gastroenterologist on Thursday (6/16) and has gained 6 pounds since the last time he saw her. She is up to 33 pounds. He wants to stop the overnight feeds for now and see how she maintains the weight with what she is eating by mouth. We have to give him a call this week to let him know what her weight is and how she has been eating. Then we will see him again (7/5) for a follow-up.
We started her in a playgroup at the Children's Cancer Center. It's actually a new group for pre-schoolers that they just started and Delaney is one of the first in it. They decided that it would be a weekly event for the children to be able to get together and play and have the social interaction with other children without being worried about them getting sick from other children. As parents of kids in chemo, everyone knows that you don't bring a sick kid to the group. The set up that they have for all the kids is incredible. From bean bag chairs because the kids are sometimes in pain to a rubber and matted playground so there's less of a chance of cuts and scrapes.
Delaney had chemo on Friday (6/17). She had a little trouble with getting back into the motion of using the medi-port again and got very anxious a couple of times but overall did pretty well. She is in her second cycle of 8 that will be four weeks on chemo, 2 weeks off. Saturday (6/18) was trying for most of the day. She never got sick but complained of general "ickyness" and terrible pain in her neck and right arm. We gave her a half dose of pain med and she went to sleep for a little while and when she woke up, seemed to be much better. She hardly ate anything but that is pretty normal for the day after treatment. Hopefully as the next few days go on, her appetite will come back and she will start eating better again.
Friday, June 3, 2005
Delaney’s Mic-Key button surgery (5/24) went very well. It only took about 10 minutes and we were out of the hospital within an hour of the procedure. The button has turned out to be so much better than the tube hanging down. She’s a little protective of her tummy again but that will pass in time as it did before.
She went to the Neurologist (5/25) and we found out that she has neuropathy in her legs caused by the vincristine (chemo drug). It is most likely non-permanent/reversible but only if she is taken off the vincristine. The neurologist is supposed to talk to the oncologist about any plans to do that. We haven’t heard anything about the plans yet. For now, we are just keeping her in the physical therapy to help in lieu of yet another med which the neurologist prescribed. She will need to see the doctor again in a few weeks.
Delaney has 2 weeks off of all the meds which is on the protocol. For the visible future she will be 4 weeks on chemo and 2 weeks off. This Friday (6/3) she only needed her finger poked for blood and since her counts are high enough, she won’t have to go back to the doctor for 2 weeks. She's up to about 31 pounds now and starting to eat a little bit more and better than just the snack foods that she was eating before.
She loves the playset but hasn’t been able to play on it too much because of her legs (and the rain!). Hopefully with the physical therapy and the break from the vincristine, she will be able to overcome the issues.
Sunday, May 22, 2005
Delaney started running a low-grade fever Friday morning. We were concerned that she might have to go into the hospital again but when we took her into the doctor's and they did her counts, they were way up. Since her counts were so high and the fever was not higher than 101 they decided that she did not need to go into the hospital unless her fever went higher.
She was able to get her chemo also. They reduced the amounts to 75 percent of the amount that she started out at the beginning of this cycle. They will continue at that level through the end of this cycle, baring any worsening of the side effects, and then start the next cycle at the amounts she started this one at.
So far it looks like the Mic-Key button placement is still on for Tuesday (5/24) but we will have to see what her counts look like that day. Depending on whether she has the surgery or not she will have the evaluation with the neurologist (5/25).
The dream party was great! Delaney loves her new playhouse. We had an ice cream cake from Coldstone Creamery and they brought us some samples of their yummy ice cream too. The dream fund crew carpeted the play house and put some flowers in the flower boxes and some toys in the house including a stove that makes noises and a table and chair set that says "Once upon a dream starts now". It will be so nice for her to be able to play outside again and have a shady place to play too! We've included pics on the site.
The St. Petersburg Times came out and took photos and interviews and the article is supposed to be in Friday's (5/27) paper.
Wednesday, May 18, 2005
Delaney had her Ophthalmology appointment yesterday which went very well. After an initial shyness she was able to help the doctor be able to evaluate, for the most part, her eyesight. He was able to see that the swelling of the nerves has gone down which is a tremendous relief given that the swelling is what causes the damage. He’s going to see her about every 3 months to keep an eye (no pun intended) on her vision.
We were supposed to see the neurologist yesterday but an unfortunate misunderstanding between the primary care office and the neurologist’s office caused a problem with the authorization. We are scheduled now for next Wednesday (5/25) but depending on whether Delaney is able to have her Mic-Key button placed on Tuesday (5/24) she may not be able to go.
The builder is putting up the play set as we speak! We can’t wait to see the finished product but it looks like it will be a lot of fun. Tomorrow is the dream party and it will be at 10am. We will try to post some pictures when all is said and done.
Friday, May 13, 2005
Delaney's counts are still pretty low so they decided to forego the chemo treatment again this week. The pain in her legs seems to be better but they decided to wait at least another week before continuing. If by next week the counts are still not high enough to have treatment then they will go back and reevaluate her protocol and probably change it.
The nuerology evaulation appointment is on Tuesday (5/17) and she also has a check up with the ophthalmologist the same day. Her Mic-Key button surgery is still scheduled for Tuesday (5/24) but it may need to be rescheduled if her counts are still low.
Also next week, they are going to build the play set in the back yard on Wednesday (5/18). Then on Thursday morning, there is going to be a "dream party" to show Delaney the set. They bring her a cake and take pictures and celebrate the "kick-off" of her dream. Anyone is welcome to come and join in the celebration, we just ask that you let us know by Tuesday (via e-mail or phone) and that you are not and haven't been sick in the past few days. We will let you know the specifics as soon as we know!
Love and prayers,
Brian and Kara
Friday, May 6, 2005
Delaney was not able to get her chemotherapy this week. Her blood counts are very low and she is also having problems with the nerves and pain in her legs. The two meds that she is on cause different side effects. One of them causes the low counts the other causes the nerve problems. They can give the meds seperately but since both are causing her problems, they did not give her either.
The doctor requested that we keep her in the physical therapy that she is already going to and that we see a neurologist.
If by next Friday her counts are up and/or she is not having such problems with her legs, she will be able to have one or both of the treatment meds. But for at least one more week, we don't have to worry about her being sick!
The Children's Dream Fund called today and is going to be at a grand opening tomorrow for The Cold Stone Creamery in South Tampa (Dale Mabry and Neptune). Half of the proceeds that they bring in on their opening day, they are giving to CDF to sponsor Delaney for her dream - the play set in our back yard. Delaney will have a place to go outside and play, swing, slide and have fun. If you get a chance, go have some ice cream and know that you helped build her play yard too!
Love and prayers,
Brian and Kara
Thursday, May 5, 2005
Delaney has been doing awesome this week. She never got sick in the days following her chemo treatment which in itself is glorious news. However, couple that with her mood and general disposition this week and it's incredible. She's been in the greatest mood that we've seen her in since well before she was diagnosed. Playing with toys, horsing around, laughing out loud... it's been a tremendous spirit lifter for us. To see her act like a little kid again is....wonderful. We are praying that this trend continues!
She is up to 30 pounds now. She's actually outgrown some of her clothes and is catching up quickly to where she should be at her age. She no longer has a status of failure to thrive. She still needs to gain a little weight to be considered "average" but she looks really good (and apparently feels good too!).
Delaney's Mic-Key button placement sugery has changed. She will have the surgery on Tuesday 5/24 and it will be at St. Joseph's Hospital. (Apparently our oncologist won the argument!).
We saw one of the representatives from Children's Dream Fund at the oncologists office last week. They are one of many foundations that grant dreams (Like the Make A Wish foundation). They are going to have a play yard built for Delaney so that she can go outside and play. Knowing how much she loves slides and swings, this will be something that she can enjoy for years to come. I think we may be as excited for this as Delaney was when they were asking if she would like to have it!
Love and prayers,
Brian and Kara
4/27/05
The wound revision surgery (4/14) went well. After the surgery she told everyone that would listen that her doctor "took out the bump" on her head! The neurosurgeon was extremely glad that she did the surgery because the scab itself ended up to be very thin and could have broken open at any time. She got the stitches out Friday (4/22) and the doctor said the incision looks great.
Physical therapy is going well. Delaney really looks forward to these visits even though she is exhausted afterward. They are seeing improvements every week she is able to go. The two weeks that she was off the chemo you could really tell. Her balance was better, she wasn’t so clumsy and her eyes looked much better. The right one is still a little droopy but still much better than they were.
We had the evaluation with the gastroenterologist on Friday (4/22). He has scheduled the Mic-Key button placement for Friday 5/20. This is supposed to be at Tampa General although when we mentioned this to our oncologist he was not very pleased with the idea of her not being at All Children’s. I believe his exact words were “We’ll have to see about that”! So, this may change.
Delaney started her second cycle on Friday (4/22) with the same meds that she was given before but a slightly higher amount. The nurse said that as a child gains/grows, the amounts will change. She handled it pretty well, better than most of the prior times. Usually, when I put on the numbing crème for the port, she starts freaking out. This time she cried a little but that was it. The same in the doctor’s office; when they start coming at her with the soap to clean the area before they put the needle in, she would start screaming. This time, she only cried a little and then it was over.
Unfortunately, Delaney was hospitalized on Saturday (4/23) at about 3am. When we were checking on her she felt hot and when we took her temp it was 102.4. Just like before they admitted her immediately and started running blood cultures and antibiotics. They’re protocol for this is to keep the patient for 72 hours after admittance which kind of stinks because she was fine by Sunday morning aside from the normal vomiting from the chemo treatment. They kept her until Tuesday (4/26).
While in the hospital, Delaney got a couple of special visitors. The Tampa Bay Lightning Bug accompanied by the Stanley Cup! They gave her a bracelet, a t-shirt and took a couple of pictures with the bug and the cup.
Love and prayers,
Brian and Kara
4/12/05
Delaney saw the oncologist yesterday (4/11) for another blood test to make sure her levels are going up, which they are. They look much better than they had. Not normal but definitely better. She will have another week off of the chemo (2 weeks total) and start again next Friday (4/22).
We saw the neurosurgeon today (4/12). She went over the MRI from Friday (4/8) and took a look at Delaney’s surgical sites. As far as the MRI is concerned, she can only say that it “seems” that there is not as much cystic mass around the tumor. Cystic mass means that surrounding the tumor there is/was some cysts and fluid. She can only say seems because the original MRI’s were done at St. Joseph’s hospital and were never scanned into the All Children’s reports so she doesn’t have anything to compare it to. She can only look at the new scans and try to remember what was going on in January. We are going to get in touch with St. Joseph’s and get them to send over the MRI’s so that the neurosurgeon can get them scanned in. She said that she would be glad to sit down with us after she gets the originals and talk about the differences but that it can take three to four cycles of chemo before there is a real marked difference. Still, all in all, it sounds promising.
The neurosurgeon did have some concern about one of the surgical sites which we were also concerned with. We know that with chemo the ability to heal is compromised but there is a place on one of the sites that still has a scab on it (the surgery was in January). She (the neurosurgeon) said that she’s concerned because she believes there is probably an open wound underneath. If this were to open, the entire shunt system would be compromised and have to be replaced. This would not only put Delaney in danger for infection but she would have to go through that whole process again. Instead, she would like to be proactive and do a small 15 minute surgery to cut out the part that is not healing and re-stitch it with some different stitches in case it was a reaction to the stitches. She will be having this surgery on Thursday (4/14) morning and coming home that afternoon. Doing it now, Delaney will be able to be healed by the time her chemo starts again and there will be no delay in her protocol.
Delaney will also be getting a “button” to replace the tube that is protruding from her stomach. We have a consultation with the gastroenterologist on 4/22. They will just be checking to make sure the current tube and site is in good condition with no complications and will then schedule the surgery in conjunction with the oncologist.
More updates as information becomes available.
Love and prayers,
Brian and Kara
4/04/05
Delaney was hospitalized on Thursday (3/31) for a high fever. Anytime someone on chemotherapy gets a fever above 101 they hospitalize them and do cultures on everything (i.e. blood, urine, throat, nose) and start them on antibiotics in case they do have a bacterial infection. If it turns out to be viral they will release them with no further meds as long as their counts look ok. If it’s bacterial it depends on what the infection is on if they keep them or not and either way they are on 10-14 days worth of antibiotics.
Her cultures tuned out to show that she has the flu. Given that her immune system is not as healthy as normal, she hasn’t gotten that sick. A bad cough, congestion and 24 hour fever was about it. They released her this afternoon after her chemo treatment so she is home now. Since she was running a fever on Friday, they wouldn’t give her the chemo. This was her last treatment in this (the first) cycle. Her next cycle will start in a couple of weeks pending the results of the MRI.
We were able to see the ophthalmologist while we were in the hospital. He says that she is not in need of glasses at this point but isn’t able to see beyond the back of the eye to know what, if anything, is going on further along the nerves. That will be seen in the MRI on Friday (4/8). He does want to track the vision and would like to do monthly follow-ups so her next appointment with them is on May 10.
It is possible that any change in the tumor (whether getting smaller or larger) could affect her vision. Thus, good news of the tumor shrinking could bring with it some vision problems. However, vision problems can be worked with so long as we have her with us!
Thank you for your continued prayers and support,
Brian and Kara
3/31/05
Delaney has been doing relatively well over the past couple of weeks. She's been up to 6 hours off of the pump during the day and today she starts to be off 8 hours. Within the next couple of weeks we are going to try to work her up to 10 hours off and then 12. Soon, she will be getting everything she needs at night and hopefully, then, getting hungry during the day.
She has gained another pound over the last 2 weeks. She's still eating just a little at a time though she tends not to eat at all on the weekend after her treatment. She usually starts wanting to eat late Monday sometimes, but usually into Tuesday.
Delaney is experiencing one of the more rare side effects of one of her chemo drugs. They call it droopy eyelids. At first she just looked like she was tired but it's very noticeable now. Her oncologist has said that if it gets worse they will have to stop that drug for a while but for now she is ok. Apparently people on this particular drug also commonly experience deep tendon reflex loss. This is tested by checking the reflexes in the elbows and legs, which when they checked, she has lost hers. It just means that she could start becoming clumsy in her walking.
Her physical therapy is going well. They have noticed considerable improvement in her balance and endurance. We are working on jumping, walking on the tip toes and balancing on one leg. We try to get her to do all of those a couple of times a day at home as well as them working on it at the PT appointment.
We are beginning to get concerned about her vision. Delaney seems to have difficulty seeing things unless it is straight in her vision field. We're not sure if she is losing peripheral or all over but it does seem to be affecting her left eye a little more than her right. She seems to hold something that she is trying to see straight in front of her eyes, closely to her face and more in front of the right eye. Though she seems to be able to see the TV without any problems, it may be because the TV is not at any kind of angle, it is straight on. Also, the less light there is, the worse her vision seems to be. Not that we expect her to see in the dark but there is a noticeable difference in how she looks at things when there is lower light as opposed to bright light. We have already made an appointment with the ophthalmologist.
Delaney had her first outing Sunday. We all went to church for Easter and then went to Picnic Island (it's a park on the beach) for about 45 mins for a family get-together. She enjoyed walking around the park and went down a slide once. She loves slides. It was a bit windy on the beach but she seemed to really like being able to walk around. She took a pretty good nap after that!
She has her MRI next Friday (4/8) and the appointment with the neurosurgeon the following Wednesday(4/13). We will update again soon.
Love and prayers,
Brian and Kara
3/16/05
All
Delaney has been doing pretty well since getting out of the hospital (3/2) after her G-tube (PEG) was placed (2/28). She was extremely hyper-sensitive to anyone touching or even coming near her stomach. She's getting better about letting us look at it and has even started to help us push the meds and things that are given through the tube.
For now, the tube actually is extended out from the abdomen. In about 6 weeks, if she is tolerating feeding well and she has no problems with infection, they will change it from a tube to what they call a button. This will be more flush against the skin of her abdomen so that she doesn't have the tube coming down and we don't have to worry about it getting caught on anything.
Having the PEG placed has been such a relief for both her and us so far. She is tolerating the feeding very well and we are on a plan to getting her off the pump during the day. As we up the amount of food that she gets per hour, she can be off longer during the day. So far, she is off for about 4 hours now and should be up to 6 hours by the end of this week.
She takes full advantage of not being connected to the pump. Walking around the house going from couch to floor to couch and just being a kid again. Her strength and balance are coming back the more she is up and around. Her first physical therapy session was today (3/16 - due to problems with authorization) and they noticed how she has changed since the evaluation (2/22). She'll be going once a week but hopefully not for too long.
Delaney has also been handling her treatments pretty well. They increased her nausea med slightly and with this last treatment, she only got sick once. She had been getting sick 3-4 times a day for the first 3 days after her treatments. She still sleeps a lot initially but we are happy that she's not getting as sick.
She's up to almost 27 pounds now which means she's gained about 7 pounds since mid-January. They started her on an appetite stimulant after they placed the PEG which, apparently, is working. She's starting to eat by mouth now a little at a time. Mostly just goldfish, her favorite cracker. She took a couple of sips from an ICEE and this morning she said yes when asked if she wanted some of a McDonald's hash brown. She used to eat them all the time before all this happened and it's great to see her wanting to eat something like that again. As she gets more comfortable with eating again, she will hopefully be wanting to eat more and more.
Hematology has scheduled her first MRI to check any changes in the tumor for April 8th. Neurology will also be checking the MRI to make sure the shunts are still working properly. We are praying for the tumor to start shrinking but at the very least to have stopped growing. We have found out that there is one other patient at Delaney's doctor's office that was diagnosed a couple of years ago with an Optic Glioma. She was diagnosed at about 4 years old. She is now almost 7 and only coming in for checkups and occasional MRI's to check for any changes. She only had to go through the chemotherapy and never had to have any radiation. Although her tumor was in a slightly different place than Delaney's, it's awesome to hear we could have the same prognosis.
Thanks again for all the prayers and support. We do appreciate everything that everyone is doing.
Love and prayers,
Brian and Kara
2/27/05
The past week has proven somewhat trying. In the past 10 days the NG tube that Delaney has to have has been replaced 4 times. This last time was in the ER on Friday (2/25) evening where they decided to admit her because the last tube was not placing correctly either. We had a GI consultation Saturday morning and have decided to put a G-tube (they also call it a PEG) directly into the stomach accessed from the stomach wall.
They will be inserting the tube Monday afternoon; she is scheduled for 12:30. She will need to stay in the hospital for an additional 24 hours after the surgery in order to make sure there are no complications of the tube placement. They also want to be sure that she will be able to handle the feeding through this tube.
Other than the tube she’s been doing well. She started physical therapy this week. They evaluated her to be at about 70% of children her age so she will have weekly visits to help her regain her strength and balance.
She was up today walking around and playing. She has to walk down to a different floor to get to the play room and she did that twice today. Slow and steady but she walked it on her own, and had some fun in the play room.
We are hoping that she will be out Tuesday afternoon but it may be Wednesday. We will let you know what’s going on as we can.
Love and prayers,
Brian and Kara
2/17/05
Delaney’s chemo treatment went well last Friday (2/11). She didn’t start feeling too sick until Sunday and Monday but all in all, faired pretty well. She is due for another treatment tomorrow.
She got her hair cut last Sunday (2/13). We had trimmed it a couple of times but this is the first time we actually had it cut. She didn’t want to sit still too long but we were able to get her to sit long enough to get it done. She looks very cute.
Delaney had to have her NG tube replaced again on Wednesday. The tube, it seems, easily gets clogged. The first time it happened we were in the hospital so it’s not anything that we are doing wrong. We’re going to try to flush it a little more often and hope that it helps the tube last a little longer. They only have to change them once a month but this one has only been 2 weeks (the first one was only a week).
She is getting up and playing more and more though she still gets up a lot in the middle of the night. Last night she slept all the way through. Hopefully she will continue that trend.
Tuesday (2/22) she has her first physical therapy appt for full evaluation. Hopefully she won’t be needing too much or maybe they can give us things to do at home. She’s become more steady on her feet but still a little wobbly at times. When we disconnect her from the pump she gets up and walks around the house. She tries to sometimes when she’s still connected but gets rather irritated when she can’t go too far.
Next Friday she goes for a full psychological evaluation. She seems to be doing pretty well in that sense. Her spirits are much better than they had been before she got home. I believe she’s happy to be around her own things and having her whole family around to play with.
They’ve scheduled a CT in April for the neurologist to look at. This one will be to make sure the shunts are still doing what they are supposed to do (drain the fluid from the brain) and to see that the pressure is going down.
She’s very friendly now…..much more than she used to be. Wednesday in the doctor’s office she went up to someone who was sitting next to us and said hello and gave her a hug! I think she happened to be a nurse and looked somewhat like one of the ones that took care of her. I don’t know if she thought that was who it was or if she just felt the need to give her a hug. She also says hi to every person who passes her in the hallways of the office building. And she makes sure that she tells us that she said hi to that person whether we were there or not!
Thanks again for the love, prayers and support.
Brian and Kara
2/9/05
Delaney got home Monday (2/7) afternoon. She said she was ready to come home. They took all the stitches out and the needle from the port. She is still on 24 hour feeds until she starts eating but her energy level is growing by the day. She’s still a little unsteady on her feet but she’s starting to get around and it’s nice to hear her wanting to play and do the stuff she was doing before. Now we just need to get her eating well during the day so she’s not tethered to the pump while she wants to run around.
The rest of Monday went relatively well. She didn’t sleep much Monday night but she was so used to being awakened during the night that she has to get used to sleeping through again. Tuesday went pretty well also. She got sick once and her tube came out a bit but we got it back down and gave her some nausea med. That seemed to do the trick. She had been sitting up for about an hour when she got sick so we let her rest a bit while the med kicked in and then she was ready to get back up and play. She took a couple of spills while walking around and finally decided it was just better to sit so she wanted to take a bath. Tuesday night she slept better but was still up a lot.
Today she’s been up most of the day watching TV or playing. She even got to go for a car ride. She hasn’t complained of any nausea at all and has wanted to walk a little more. She makes us nervous though because we can see her little legs wavering a bit but she’s done ok, no falls anyway.
She’ll go for her next chemo treatment on Friday morning. We found out that it’s actually going to take around 4 hours for the treatments because they have to give her fluids first, then the meds, and another bag of fluids after.
We found out that they are not going to do anything about the port not drawing blood since it is working fine for giving meds. It seems that it’s not uncommon for this to happen on small children so for now she will have to get poked whenever they need blood. It’ll be nice when they find an instrument that can test blood right through the skin so they no longer have to take it…. Star Trek anyone?!
Thanks again for all your love, prayers and support,
Brian and Kara
2/06/05
Friday (2/4) was Delaney’s birthday. We were hoping to have her home then but had a slight set back early Friday morning. They were trying to increase her feeds and got up to 50 when she started having way too much nausea. They cut her back down to 40 and left it there throughout the day. She also had another chemo treatment Friday afternoon but seemed to handle that well.
When a child has a birthday in the hospital they make a banner and the nurses on duty come in and sing and bring a cake for the child and family. We were able to have her sisters and us there when they came in. Apparently we didn’t sing too badly because she didn’t cry this time! She said at first she would have some cake but then didn’t want any.
The rest of Friday and Saturday went pretty well. They got her feeds up to 45 and decided that was the most she can tolerate for now. She was up playing (physical therapy) for about an hour and a half both days which wore her out so she slept after that and pretty much throughout each night.
Sunday (2/6), unfortunately, started off badly. At about 4 o’clock (am) they found that her NG tube was blocked. The feeding was not going through. They tried several things to try to unblock the tube until around 8am when they decided they needed to replace the tube. Delaney was none too happy about that but the replacement went relatively smooth, considering she’s only 3 and doesn’t understand all this mess.
In the midst of that, they could not get any return on her port. The port is supposed to be the thing where they administer IV meds and draw blood so there are no more needles poking. For some reason the port is unable to draw blood so they had to poke her again to do the labs. We will have to find out tomorrow what they want to do about the port since it can push the meds fine, it just won’t draw.
The good news for now is that she is coming home tomorrow (2/7). They stopped her mountain dew IV, the last one she got was early this morning. She’s gained another 2 ½ pounds in the last 3 days. And she’s starting to get feisty again! You never think you’ll be glad to hear a kid becoming a smarty pants until they aren’t able to be one. She should get all her stitches out before we leave the hospital. We have been trained on how to do all the crazy things we have to do for her feedings and meds that she gets through her tube. And they’ve delivered what looks to be everything we need for at home.
We can’t wait to have her home and I’m sure many of you would like to see her who didn’t get a chance in the hospital. Again we will have to ask that if you’ve been sick in the last week or so of the time that you visit, wait another few days. Her immune system is already getting to a point where she will be able to pick up illness easily. They said it only takes about 7-10 days from the first chemo treatment for the immune system to decline and side affects to really kick in.
She will not be returning to daycare. We will be taking care of her at home for at least the next year or so. This will be a very trying year for our family but we know we will get through with God’s help and your prayers. You are all very important to us and we will never be able to thank you enough for the support you have and continue to give.
Love and prayers,
Brian and Kara
2/2/05
Yesterday (2/1) was pretty good. She got up a couple of times to read a book and play with a toy a little bit. She’s still not really eating or drinking. She takes a sip of soda or a Froot Loop or two every now and then but that is all. They keep telling us that it will come with time.
Her weight yesterday was 23.7 pds. They weighed her today and it was 24.5. We couldn’t believe that in one day she gained almost a pound. In the 4 days she has been on the feedings and mountain dew IV, she’s gained about 2 ½ pounds. It doesn’t sound like much but for someone as small as her, it is a lot.
The weaning of the IV is going well. She’s up to 40 ml/hour of the NG feeding as of noon today. They want to get her up to 55 ml/hour before they take her off the IV and are able to let her go home. They up the rate 5 ml about every 12 hours as long as she is tolerating the amount. If she keeps doing well, she should be at 55 by Friday and depending on what they want to do that day (observing, another chemo treatment, etc) she should be able to come home very soon.
We saw a physical therapist and an occupational therapist today. They got some history and since she was awake got to evaluate her abilities. She was up on a play mat and playing with some toys and with us (and the therapists) for about 30-40 mins. The therapists thought she would not be doing as well as she was. Before the evaluation they figured she would need 6 to 8 weeks of therapy to really get her back on her feet but afterward they were thinking it could be as short as 3-4 weeks.
Her spirits seem to be getting better by the day. She’s smiling and doing her little pretend/imagination stuff again. She’s still sleeping/resting quite a bit but until she gains the muscle strength and stamina back that she has lost she won’t be able to do as much.
Good news came this evening to the girl that is sharing a room with us. Her name is Josephine but she goes by Josie. She’s the cutest little girl (well, aside from Delaney that is!!). She had been diagnosed with bladder cancer right after her 3rd birthday last year. They went through chemo and radiation and were all done with that for a few weeks when she snagged one of the tubes that she has in her back (the tubes go into her kidneys to bypass the bladder). She came to the hospital to get that fixed (spent her 4th birthday in the hospital) and had to go on a regiment of antibiotics to make sure that she didn’t get an infection. They did some kind of scope thing to look at her bladder and get another biopsy on Monday and news came back that her cancer is gone! She gets to go home tomorrow!
Love and prayers,
Brian and Kara
1/31/05
She started her NG feedings Friday night (1/28). Tomorrow (2/1), home health care is going to meet with us to teach us how to use the pump and all the things we will need to know at home. We’re hoping she will start eating more during the day so we only have to use the NG tube at night but depending on her appetite and such, it may have to be around the clock.
She got her first chemo treatment on Saturday night (1/29). She seemed to handle it pretty well so far though she slept a lot Sunday and Monday (normal). She got sick twice Sunday but it seemed to come from a “back-up” of her NG feedings more than anything else. We found out that she will have to lay slightly elevated when she is getting them if she is sleeping.
The chemo treatments will be once a week (Friday’s) for 12 weeks. Then they do a slightly different six week cycle 8 times (about 60 weeks worth in all). Each treatment will be about 1 ½ hours long and they will use two different medications. The most likely side affects for her are going to be nausea and vomiting and complete hair loss. They will assess her at the beginning of each six week cycle as they did before they started this cycle. That’s with the hearing, vision, kidney function, MRI or CT scan, etc. Depending on how the tumor is affected during the chemotherapy, they will go from there for any further treatment. The last option is radiation which they don’t like to do on children this young (in the brain) for fear of brain damage.
There is still much research going on for tumors like the one she has. They are trying to figure out the best options for Optic Gliomas. She will be part of the research study as well (she’s one in about 300 around the country). They will track her progress through the National Cancer Institute for the next 9 years or so in hopes of finding the best treatment with the least side affects and the most affect on the tumor. Hopefully, they will find better ways to help children like her in years to come.
Her spirits were pretty down by Friday. She was very angry and depressed. Course every time she went to sleep, she woke up with some new tube in or around her. Someone always poking at her or shining lights in her eyes or asking her questions. By Friday when a nurse or doctor came in she would close her eyes real tight and if they asked if they could listen to her or look at something she would very assertingly say “NO”! By Saturday evening she was much better. We got up a couple of times and played with puzzles and tried to eat a little. This past weekend no one was around to bug her so she got into a much better mood. Then Monday came… back to poking and prodding though she seems to be ok tonight. The prodding was not nearly as much as it has been since they seem to have all the testing that they need done. She even sat up by herself. Course then she got all the tubes wrapped around her but she sat up none the less!
They are hoping to send her home this week. They want to wean her off the “jacked up” IV that she is on (it’s not just saline it’s got all kinds of extra nutrients, protein, fat and stuff that she needs and it looks like mountain dew). They want to get her off that and on food by mouth and NG tube only before she can go home. Plus they want to make sure there are no allergic type reactions to this first chemo treatment. If she’s not already home by Friday they will do another treatment. If she is home before Friday we will have to take her to the doctor’s office for the treatment. They do these on an outpatient basis, then she goes back home.
Love and prayers,
Brian and Kara
Past
All
I wanted to tell all of you thanks for your calls and emails. They have been much appreciated and honor us greatly to have people that will take their time to look in on us. Both Kara and I thank you dearly.
I want to let all of you know that I have created a list of persons to send out updates to. If you know of someone that wants to be on the list please reply with the person and I will get them added ASAP. Also in turn if you wish to be removed from this list please let me know immediately. These emails are to let our friends know what is going on with our family without leaving any interested party out in the dark. I know that I have missed a lot of people but I trust that any one of you fine people will let others know.
Also all of you are welcome to visit at the hospital. We and the Hospital ask that if you have been around anyone that has had a cold, flu, fever, or any infectious condition to refrain from coming to the floor. This is due to all of the children that are immune deficient due to treatments. We are (for now) are in room 262a. Please call ahead due to all of the tests that Delaney is having. We do not want you to drive all the way just for us to be in a test and waste your time.
Update for today 1/28.
Delaney has finished most of the surgeries that are needed for now. Yesterday she had her Medi-Port put in and was transferred to this for all fluids and medicine. The doctors are mostly sure of which Optic Gliomas she has and her treatment. As of last that I heard the final, final pathology was not in yet. It looks like we are going to have to have ChemoTherapy for the first year and then radiation therapy after. Today she is getting to see several more doctors. The doctors will be testing her for baselines that will allow for the tracking of her progress. In addition she now has a NG tube for feeding since the Optic Gliomas is affecting here appetite. We hope with treatment her appetite will return.
Since I have added several persons to this email list today here are previous updates.
Update 1/27
Delaney will have surgery tomorrow (27th , hopefully her last) to insert the mediport that will dispense all of the chemo meds. This is something they use so that the person getting chemo doesn’t have to be stuck with an IV every time they get a treatment. She should also get the NG tube for feeding. The oncologist is hoping to get in at least one chemo treatment before she leaves the hospital. No resting for this kid huh?!
The oncologist still hasn’t given all the specifics of the meds but we should know by Friday. They’ve mentioned that she may be out by the weekend. Course, things around her seem to change on a daily basis.
She is moving a bit more today. Still a little apprehensive about it cause of all the tubes but she was sitting up and eating a little and even joking with us. She now calls herself “mommy and daddy’s little princess”!
We were moved to the oncology floor this afternoon. It’s kinda sad that they have a whole floor full of kids with every kind of cancer you could imagine. The parents are incredible though. There is much support and comradery.
Update 1/25
Delaney went through her second surgery yesterday. It took about 3 hours to put in two permanent shunts (tubes that drain the water from her brain into her abdomen) and snip a piece of the tumor for biopsy. She’s doing ok today but, obviously, very sore. Nuero-surgeon said she was doing well. Her CT scan came back looking like they wanted it to. Now we wait for any signs of infection or problem with the shunts.
The tumor, they have found, is called an Optic Glioma. It is malignant, but not the type that spreads. The only thing it will do is grow bigger if not treated. She will have to get chemotherapy to try to at least stop and hopefully shrink the tumor as it is inoperable. Trying to remove the tumor would leave her blind, brain damaged and various other possibilities. She will have to undergo at least one other surgery in order to put in the catheter for the chemo treatments. The oncologist met with us briefly today to give us this vague overview but will know better (i.e. which meds to give, how often, how long, etc.) once the final pathology report comes back which is in about 5 days. She is too young for radiation therapy but that could be a possibility in the future depending on the outcome of all of this.
Additionally the oncologist is going to put a tube down her nose into her stomach so that we can feed her supplemental “food” at night. She will eat whatever she eats during the day and we will be able to give her additional nutrition. This is because she is so underweight now and chemo normally reduces appetite, so she will have to have something.
We are in a regular room again at All Children’s Hospital in St. Pete. We may end up changing rooms again once Oncology takes over since it is on a different floor. For now (under neurosurgery) we are just on the regular floor.
She has three shaved areas on her head…. Sort of looks like a punk rocker! We’ll just have to color different parts of it for her! (sorry, thought I might lighten the mood a little! Besides, if we don’t laugh we’ll cry!)
Thank you for all your prayers and please keep sending them. After all, we believe it was God who whispered in our pediatrician’s ear to do the original CT scan because there was absolutely no medical reason for him to do it (she wasn’t presenting with the “normal” symptoms).
Update 1/23
All
We do not have much information for today. Kara and I hope to get some more information later this evening. As it stands we know that Delaney will be going to surgery tomorrow morning to get her shunt (forgive my spelling or incorrect terminology) to relieve the pressure in her brain. We do not know if it will be removed in the future. The MRI from Friday has not been read by the doctors preferred radiologist yet. As soon as we get that information I will get out an email.
As for now Delaney’s spirits are up and she is enjoying her movies on the computer.
Friday, April 23, 2005 12:20 PM EDT
Today Delaney started her second cycle of chemo. The doses of both (carbo and vincristine) went up since she has gained weight. She's still not eating much aside from snack foods but we are still hoping her full appetite will return.
The neurosurgeon was kind enough to come down to the oncologists office to remove the stitches. She said the incision looked really good. We were also able to get the original MRI's to the neurosurgeon.
We saw the gastroenterologist today as well. He has scheduled the placement of the Mic-key button on May 20th. It will be at Tampa General instead of All Childrens.
When we returned home today we found that our 2nd child was sick with a headache, soar throat, nausea and fever. She's now quarentined to her room! Hopefully she will feel better soon.
Love and Prayers,
Brian and Kara
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