Thursday, December 12, 2013

It has almost been 2 months since I have updated.  I can't say that life has been perfect by any means, but we seem to have a lot less going on that seems news worthy.  Halloween, Thanksgiving, and Christmas are not what they used to be.  No matter how much I try to move on, I find myself reliving memories of the worst years of my life.  Halloween was when it all started.  Her first 2 Thanksgivings we spent inpatient.  Her first Christmas we were getting a central line put in and her first New Year's Eve I laid awake in a fold out couch thinking about the decision I had just made to put poison in her body that I didn't even think would work.  Last Christmas I was frantically booking flights and getting us packed to travel to Maryland for a clinical trial I had 3 days to prepare for that didn't work.

This Christmas seems to be a little less frantic.  Just to keep life interesting, I have procrastinated Christmas shopping like I do every year.  Kendall seems to want every toy she sees on tv, whether it is for a boy or a girl or if it is an infomercial.  She wants it "RIGHT NOW".  It is her world and we are just here to serve her needs.  It's exhausting but I challenge anyone else to discipline a child that is in constant pain and at a moments notice can go off into an hour long tantrum because she has a nail that is rough or her 10 month old brother is looking at her funny.

Ive increased her methadone 2 times in the past month.  It probably needs to be done again.  The girl is on enough pain and nerve medication to knock out an elephant, yet she functions.  It just goes to show how much her body needs just to cope with life.  I thank God everyday that we have such an awesome group of NP's and doc's on her palliative care team.

I gave up on the clinical trial that she has to swallow a pill for.  Then I noticed on a FB group that I'm on that there is a waiting list a mile long for kids to be on it.  Well, human nature...you want what everyone else does...so we are back on for trying.  Unfortunately for Kendall it will be hell for her because I'm just going to have to do the caveman approach and force her to swallow it.  Screw the fluff of making her happy.  It's do or die now.  She doesn't have a choice.  Hopefully it's worth it.  I'm fully expecting it to set us back on any progression we have made in oral feeding but considering that is none, we don't have too far back to go.

Kendall is still loving school so much.  It breaks my heart after I pick her up at lunch time.  I think she holds it together so long at school and just crashes as soon as we get in the car.  It's meltdown mode until she goes down for a nap.  From what her teachers tell me, she rarely complains of pain while she is there.  Once we get home and I turn on her shows, it is nonstop back scratching, leg rubbing, and changing positions.  Some days she doesn't even want to sit up in her hippo chair that has always kept her comfortable.  I'm just glad she can function at school and is making friends with her classmates.  Lately, she has been coming out holding hands with one of the little boys everyday.  Cutest thing EVER.

As for the rest of us, we are doing well.  Braden is busy playing mind craft and going to basketball practice.  Tanner is a handful.  Braden was such a good baby, never got into anything.  Tanner just looks for trouble and loves to laugh when I tell him no.  By the 3rd, they are a little less stressful.  Maybe Kendall has taught me to be more laid back but I'm constantly thinking, "will it kill him?"  If the answer is no, then he's good.  He's already taking steps and crawls fast.  Here is what I had to buy Kendall to keep her safe.
Tanner doesn't realize that he is the one that is free.  He just holds on to the side and cries the entire time she is in it.  

Here are a few pictures from Halloween.  Kendall's costume ended up working out at the very last minute, thanks to some help from her speech and feeding teacher.



Hoping everyone has a safe and merry Christmas.  Thanks for all of the prayers.


Tuesday, October 22, 2013

Kendall has been doing wonderful in school.  It takes some convincing to get her out of her funk in the morning but once we are out the door, she is so happy to be going to school.  Yesterday we went on our first field trip together.  It was to the pumpkin patch.  I'm so grateful I was able to go with her and her class.

Medically, Kendall has been doing alright.  We have been free of kidney infections for awhile now.  I started a new medicine a few months ago that seems to be helping.  I have to flush her ureterostomies with a liquid antibiotic every day.  It is not an enjoyable experience for her but it seems to be doing the trick.  We have recently had to go up on her methadone even more than we did over the summer.  I think her pain has been increasing.  I can usually tell just by how grouchy she is.  Little kids can't always tell you what hurts and how bad so it tends to come out in angry outbursts.  Braden and I have had a few talks lately where I have tried to explain to him why his sister is screaming at him for no reason.  It's hard for him to understand but I think he's doing a good job at trying.

It has worn on my soul to have to watch her suffer.  No parent likes to watch their child in pain.  Even things like holding your baby down while she gets a shot, can wear on a parent.  I know I still have a hard time doing that with Tanner.  Daily I have to hear Kendall scream "ow ow ow mommy.  HELP!!!" and I just have to sit here helpless.  At times she doesn't even want me to touch her because of the pain.  It's just hard for all of us.  Luckily, we have a great team of doctors who try very hard to control her pain.  Right now we are struggling with sleepiness during the day because of her increase in pain meds.  There is never a perfect solution so we just have to make the best with what we can do for her.

Oral feeding progress is going slowwwww to say the least.  She is drinking much more fluids lately but still has little interest in taking bites.  Pill swallowing is also pretty stagnant.  I'm starting to lessen the importance of this clinical trial that she has the opportunity to participate in.  I don't want to be disappointed when it doesn't work out, so I'm just sort of ignoring that it is approaching.  I really don't want to have to shove a pill down her throat twice a day.

Here are a few pics or videos of our last few months.

Kendall's version of ABC's


What we learn at school





Painting our nails.  You can tell who was responsible for mine


Kendall's first field trip to the pumpkin patch

Our first trip in the wheelchair to the Children's Museum.  She actually stayed in it for the hour and a half we were there.  I was exhausted but not from this one....
 or this one...

but from this one!!

Who then redeemed himself the next day after looking like this...

Thank you everyone for the prayers and well wishes.  Sorry I have been bad about updating her website.



Saturday, February 23, 2013

We are Still Here!

Well it has been quite awhile since I have updated.  I have no excuses to give.  I mean we have moved and had a baby all within a month, but I'm not going to use that as an excuse.

Update 1
Welcome to our world Tanner Michael!!
Tanner was born on January 23rd at 12:08 am.  He weighed in at 7 lbs 6 oz.  
Tanner needed a few moments to outshine his sister so he decided to wrap his cord around his shoulders.  His heartbeat fell off the monitor for quite sometime.  I was rushed to the OR for an emergency c-section.  I knew it was bad when my doctor was yelling to everyone to run faster and no one would tell me if my baby was still alive.  Luckily, Tanner saved both of our lives because I ended up having a hole in my uterus and if he would have tolerated a normal delivery, who knows what would have happened to both of us.  Although it wasn't the ideal situation, Tanner is here and we are both healthy.  God sure knew the plans.
Tanner was named by Matt.  This is the first child I have given naming rights to Matt.  He had two names to pick from:)  Michael was chosen by Braden after our buddy Iron Man Michael Wanser.  If Tanner can have half of the courage and strength as Michael showed in his short life, he will be a lucky boy.  I already know that he has a little bit of Michael's sense of humor because he was laughing at only a few days old.

Update 2
Kendall
Isn't this all about her anyways??

Kendall's life has changed by leaps and bounds over the past month.  In one week she welcomed a new brother, had to be away from me for the first time, moved, and had other people caring for her while I sat and watched.  
Overall, it was good for her, although quite a struggle.  She has since become very accepting of other people now.  She trusts much more than before.  Unfortunately, it took her quite a while to stop being mad at me.  She still tends to want Matt over me at this point.  I know it was hard for her to understand why I wasn't allowed to pick her up but I was carrying around a baby all day.  I'm sure she still sees herself as a baby and it was confusing why she was replaced.  
Right now we are struggling with daily meltdowns.  She gets upset about something or really nothing at all and it leads to about 30-40 minutes of extreme screaming, yelling, and sweating.  I'm trying to ignore the behavior for now because it really needs to disappear.  It has been good for teaching Tanner to sleep through chaos.  



This week we had a major boost in progress.  Kendall and I went to our feeding group class on Wednesday (we haven't been in 5 weeks).  She decided to take a few bites of food and actually chew and swallow them.  This is huge for us because she usually screams through the entire class.  Along with this, we returned her feeding pump this week.  She hasn't been hooked up to it for over a month so I figured it was time to said adios.  It was surreal to see it go.  I honestly thought we would never know a life without it.  Kendall is still on 100% tube feedings but instead of being delivered through a pump, I make them all in a blender and push them via syringe through her tube.  There is hope that one day I will be able to wean her off of these if she starts eating more by mouth.  SOMEDAY....

We have also had great progress with the wheelchair.  She asks to get in it each day.  Every time she is in it, she seems to enjoy it more and more.  For the first time she is getting to do things like come and watch me cook in the kitchen.  She is also able to go into her play room by herself and look at toys.  This is really a big deal for her.  Developmentally, she has never really learned what it is like to be able to go exactly where she wants.  Matt and I are her legs and we don't always want to do the same as her.

Coming up....we have another long day of MRI's at some point in March.  According to study protocol, they need to be the last week.  Depending on scheduling issues they may or may not be that week.  Then we will fly back to DC in April to re evaluate the medication.  I'm really not too optimistic that the medicine is even doing anything other than making her dread Monday nights (shot night).  Sometime I need a different kind of shot in order to give her her shot:)

And to end on even more cuteness....
  

Wednesday, July 25, 2012

I'm almost two, hear me roar!!

So it is official.  The terrible twos have hit our house and hard!  I can't say that I'm enjoying every second of it but I am grateful for the normalcy of it.  She screams at me, tries to bite me, hits me if I can't figure out what she wants, and then turns on the charm and woos me with her sweet smile.  I'd say she is experiencing everything we went through with Braden as far as attitude goes and I wouldn't want  it any other way.  

Here is a video to show you how good Kendall is at roaring.  It is her favorite pastime.  There are some roars that get so involved that her vein in her head pops out because of the effort she puts into it:)  Pretend she has pants on in this video.


video

I just realized this week how long it has been since I've update on this.  So much has gone on and yet none of it really seemed "blog" worthy.  It is kind of nice to not have too much to talk about.  Kendall did her sleep study about a month ago.  It went really well in the fact that it was an exact replication of what occurs at our house on a nightly basis.  7 days later we had the results back and they told us exactly what we already knew.  Kendall only slept for 65% of the study and she was on in REM sleep for 10% of the time.  So in short, she sleeps horribly.  Because she breathes perfectly through all of it, they aren't willing to do anything to help us without more sleep studies that show her REM sleep is disrupted.  Well forget that!  We aren't doing that test again any time soon.

Sometime over the past two months we also sent off another urine test to screen for increased markers that would show her Neuroblastoma is back.  This is the test I always refer to as the HVA/VMA.  The test came back about 3 weeks ago and her levels have doubled since last time.  This tells her doctors that her cancer is back, or at least it would with any other child.  We've been through this rodeo before and I know that those tests can be false postitives, although the docs never admit that.  We scan and scan at the beginning of this year looking for cancer and there was none.  This time around we were pretty nonchalant about the results.  It takes quite a bit of bad news to rock our boats anymore.  Of course the oncologist wanted to scan right away but we are just taking the wait and see approach.  We are going to send off another test this week and see what those levels are.  If they come back the same, we will look at redoing another MIBG in the next month or two.  We are about 6 months out from her last MIBG, so it's about time anyways.  It is just so nice to have a few months break in between scans and she is starting to remember just how much she hates anesthesia.

Kendall is making huge strides in physical therapy.  She is doing things that I never dreamed she could do.  I step out of the room during therapy because she becomes a helpless baby whenever she sees me.  She definitely makes her PT work for her money.  There isn't a second that goes by that Kendall isn't voicing how much she hates the work, but yet she does it.  She is given a task by the PT and through whining, she manages to complete it.  Yesterday she was sitting on a bench in front of the couch and grabbing onto the couch to pull herself up to standing.  She can bear weight on her right leg now, just not her left.  Now if you take the PT out of the picture and put me back in, she acts like she can't even roll over with me.  She refuses to do any of it for me.  So in return, I've added another session of PT each week.  Next week we start PT twice a week and we are hoping to start hippo therapy within the next month or so (horseback riding).  This girl is going to have a busy schedule this fall!!

On top of all of this, we have been blessed with the gift of a wheelchair.  We are inheriting one through a family we met through our physical therapist.  Here is a video of her practicing on it while we had it for a few hours.  We should get it for good in the next week or two.  The reason she is crying is because she sees me and that is her game.  SHe had only been in it for a few seconds and already figure out how to use it somewhat.

video

Well I do believe I have ran out of time on here.  Both kids are screaming at me and I need to figure out dinner plans:)  Please pray that these next urine tests come back lower so that her oncologist can stop worrying.  Thanks!

Love,
Steph

ps...sorry about the sideways videos.  I have no idea how to change them.  They are perfect if you just turn your head a bit.



Sunday, June 24, 2012

MRI results

Kendall's MRI was on Thursday.  It was a long day to say the least!  The radiology department was running a few hours behind.  Luckily, Kendall slept for most of the delay.  She did great for her MRI and was bright eyed and ready to go when I got back to recovery to see her.  What can I say, my girl loves her propofol!  Who can blame her?

Thursday night after I was already in bed, her oncologist emailed me with the results.  He still had to get a hold of the urologist and neurosurgeon to get speak with them about it, so I was hesitant to get too excited quite yet.  This afternoon I was able to speak with her oncologist about everything.

I'm going to break down the results based on the area scanned so that I can use words I've never been able to use before with Kendall.

Abdominal tumors- STABLE

Pelvic tumors-  STABLE

Spinal tumors- Cervical tumor which was removed in November has started to grow back.  Her cord is not compressed yet.  We knew when we got this taken out that it would grow back, we were just hoping it would take many many years.  We are still waiting to hear from the neurosurgeon to see what he wants to do.  Basically, it would just be whether he wants to scan again in 60 days or wait longer than that.  We will just have to watch it.

Her left kidney seems to have gotten worse.  It is significantly more dilated then last time.  Since we had her bladder removed, both of her kidneys have continued to get smaller and better.  This is the first time it has changed for the worse.  She does have bilateral kidney infections again but this would not cause the kidney to be more dilated.  There may be some scar tissue built up in her ureter or her stoma that is causing the kidney to no be able to drain adequately.  This could be fixed by just redoing her stoma.  Something we hate to have to do but is SOOO fixable.  We like fixable problems!!  Kidneys are fixable!  Tumors are not.

Overall we are very pleased with the results.  I think we are getting close to spreading her scans out over longer periods.  We will just wait and see what the urologist says about her kidneys.  We may need to go back down for an ultrasound sooner than later.

On another note....today Matt set up Kendall's big girl bed.  She's been sleeping on the mattress on the floor while we've waited for her new bed to come in.  I use the term sleeping when really I mean screaming, playing, causing no one to sleep:)  Here is the picture of her new big girl bed.


Wednesday we go to Riley for a sleep study to try to see if there is any medical reason why Kendall is not sleeping at night.  We need to make sure we cover all of the basis.

Last but not least, if you are interested in seeing the most amazing webpage in the world, click here.  Next click the donate or register button:)  Kendall's Army is looking rather pathetic compared to last year.

Love,
Steph

Monday, June 18, 2012

Updates

Not too much has been going on with Kendall.  I just got her an appointment today with the sleep clinic at Riley.  I'm hoping this will help us help her sleep through the night.  The first opening was the end of September, unless we could make it on Wednesday for a time that just opened up.  Well, I have to work Tuesday night so Matt will be the one taking her on Wednesday morning.  I hate that I will miss it.  As you may be able to tell from all of my posts, I'm the ultimate control freak with her health care.  I do realize that I would be worthless anyways without sleeping after work.

Kendall's MRI is coming up on Thursday.  It will be an all day event since she is having her complete spine, abdomen, and pelvis scanned.  It is usually a 4-5 hour scan along with the pre-procedure work and the recovery room.  All together I would guess we will be there for at least 7-8 hours.  She is also going to have another HVA/VMA test done.  This looks for the neuroblastoma.  The last two were elevated, which caused the doctors to think her cancer was back.  I'm really hoping this one is down so that they lay off of the cancer word for awhile.

Kendall is really working hard in physical therapy.  We have discovered it is best for her if I leave the room while she is working.  She seems to whine even more with me around.  I feel like it is time to start pushing her so that she can gain the confidence to start moving around on her own.  Hopefully she will get used to it after a few months and won't whine through the entire hour.  

Thanks everyone for the prayers for Thursday.  We don't worry too much anymore about scan days.  We are so used to hearing that the tumors are growing, we don't even expect to hear the word "stable" either.  It would just be nice to have little growth and no + urine so that we can go longer than 60 days between scans.  

Also, please pray for her kidneys.  I sense another kidney infection is on the horizon.  I'm putting off collecting her urine because I'm hoping it goes away.  Like that will really happen though.  I'm actually just hoping to make it until Thursday so that the urology nurses can cath her ureterostomies.  I hate doing it myself.

Love,
Steph

Thursday, May 31, 2012

May updates

Sorry for the long absence in updating on Kendall.  She has been doing pretty well.  We finished up her antibiotic for the nasty kidney infection and then waiting around for the cdiff to return.  I was pretty confident it had returned because she continues to vomit up some of her feeds.  I just got results back yesterday and it was negative.  So...no cdiff.  Now I have to figure out why she is still throwing up.  It makes it hard to have an active life when I have to have her lay flat on the floor for an hour and a half during her feeds.  If I pick her up too soon after getting them in, I have sticky formula all over my floor.  

Her sleep isn't much better.  We ended up getting her a twin bed for her room to try out.  It worked for one night and then we went back to being up 4-5 times a night with her.  Matt has started sleeping in there most nights and she seems to do better with him in bed with her.  

Here are a few pictures that I wanted to post.  They are a bit random but here ya go.

For those of you who don't quite understand the severity of Kendall's scoliosis...here is a picture to illustrate it.  It is also a good look at what is left of her scar.  You can also see the tumors in all of their glory, causing her back to look a little lumpy.


Kendall's hair is getting much longer.  I still have a difficult time figuring out what to do with it.  It seems to be growing on top but she is still bald on the sides.  Here is my first attempt at putting pigtails in her hair.  We've since gotten a little better at doing them.  I just love this pic of her.



Here is Kendall's new favorite thing to do in the backyard.  She loves to sit at the water table and splash around.  She is really rocking her new suit in this pic too.



Here is the icing on the cake.  Kendall is not allowed to go in the pool.  Last summer we went no where near it because she was so sick all summer.  This year I decided that just because she can't be completely in the water, doesn't mean she can't enjoy a little bit of it.  This is Kendall's first time in the pool.  I can dip her down as far as her diaper and that is it.  She loved to splash with her feet.



A few weeks ago, we went down to the NF Walk in Cincinnati.  I was asked to talk a little bit about Kendall.  We had a good time meeting other NF families and at the end we were surprised by an award that Kendall received.  She was given a trophy with her name on it for being the NF Hero of the year.  Here are a few pics of her enjoying her new trophy and medal.






Kendall has scans coming up on June 21st.  These are pretty big scans.  They will determine whether we can just sit and wait or whether we need to go to plan B.  I'm really hoping it is the first because there really is no plan B at this point.  

Please continue to pray for sleep for Kendall.  Also pray for success with physical therapy.  I have given to ok to start challenging her a little more.  This will probably be hard for me to watch so at times I'm going to have to leave the room to help her.  I really do feel like we are at a critical time in her development and she is starting to show me signs of being stronger in her arms.  I need to capitalize on this while we have the chance.  It won't be easy for either of us.  

Braden is done with school as of yesterday.  I'm hoping for time to enjoy the lazy days of summer with plenty of pool time and fun with friends.  Last summer was the opposite with frequent hospital trips and too much stress to even fathom right now.

Also, please remember to sign up to walk or run or consider donating to Kendall's Army for the NF Walk in Indy.  Here is the link.  

Love,
Steph