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.

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.

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.

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

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

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

Stuff

Hi all.  Let me start by going back to Monday.  Kendall had her stitches out down in Cincinnati.  It was a long way to drive just to have stitches out, but well worth it.  Unfortunately, the skin had started to grow over some of the stitches and it was a painful procedure to get them out.  She hugged me around my neck and kept very still.  If something was painful, she would let me know by screaming and tightening her grip on me.  SHe is such a strong girl.

I noticed on Monday or Tuesday that her urine was smelling very funny again and it was getting dark.  She wasn't sleeping well at night so we had just increased some of her nerve medications.  I attributed the change in urine to a side effect of the medications.  By Thursday, the urine was stronger and I finally knew I had to cath her ureterostomies to get a sterile urine sample.  As much as I hate having to restrain my daughter so that I can shove a tube in her stomas, it is better than taking her in and having a stranger do it.  I do have to say that I trust my own sterile technique over a stranger's.  So anyways, we sent urine Thursday morning.

Meanwhile, she has continued to have a fever between 100 and 100.9.  She's also been very lethargic and zombie like.  Yesterday, I was ready to take her to the ER if she didn't perk up.  She must have gotten the memo because she did perk up for a few hours before bedtime.  She has been vomiting up most of her feeds but last night we were able to keep about 10 ounces down all through the night.

Ahhh...fast forward 3 hours from when I started this.  She's throwing up again.  The U/A came back and there is an infection, now just waiting to see which med will work against it.

The past week or so I've been questioning why I'm still writing this blog.  There comes a point where this becomes our life.  We have to end the crisis mode and just get used to reality.  I never in a million years would have guessed I'd have the guts to broadcast such personal information about my life to thousands of strangers across the world.  I guess for the most part, I've tried to make this blog about Kendall.  I've left out quite a bit that is "not caring bridge appropriate".  There is a life behind closed doors that does exist when you have a child with a chronic illness.  Sometimes I feel as if I'm being fake or misleading by remaining so positive on this blog, when at times I'm the least positive person in the world.  I've come to the conclusion though that this is Kendall's blog.  This is about her life, her treatment, her path.  I hope there is a day when Kendall will start writing on this same blog.  She will tell it from her own perspective.  Until then, my one and only purpose of writing this blog is to bring awareness through Kendall's journey about the horrible condition that is neurofibromatosis.  By doing so, I will keep a record of how much money Kendall's story has raised to fight NF.  I can't wait to tell her that last year Kendall's Army raised close to $16,000 for NF research.  

May is NF awareness month.  So here is me spreading awareness.  1 in every 3000 children are born with NF.  It could be any of yours that has it and you don't even know about it yet.  It can show up early or later in childhood.  Kendall's was a spontaneous mutation, meaning we don't have NF in our family.  50% of the time it is spontaneous.  When Kendall was suspected to have it, the oncologist told me that I better hope and pray that it is JUST cancer and not NF.  When it was confirmed to be NF, I had a doctor look me in the eyes and tell me there was nothing they could do to fix her.  I work in a hospital where people are having their hearts fixed after years of self inflicted abuse and this man was telling me that my perfect daughter would never be cured.  I did what any mom would do.  I found the Children's TUmor Foundation, became the Chapter Leader for Indiana, and planned my first NF Walk.  

Please help me raise money for research.  I am 100% confident in the Children's Tumor Foundation and the way they allocate funds as a charity.  Even if you just give a few dollars, it adds up fast.  Trust me, last year most of our fundraising came from all of you.  It was amazing!

Here is the link to Kendall's fundraising page.  If you are in the Indianapolis area, please consider signing up for the walk or 5K run.

www.ctf.kintera.org/nfwalkindy2012/kendall

Also, please pray that Kendall stays well enough to stay out of the hospital this weekend.  We have a busy weekend planned.  The first NF symposium at IU is tomorrow and I'm in charge of the food:)  Also I have to work tomorrow night.  

Love, 

Steph

And she's back!

Last night Kendall was back to her normal sleep, just up about 4 times.  Her little personality is 100% back.  Her voice is so cute because she is still a little hoarse.  It is probably left over from so much screaming plus the breathing tube during surgery.

She pushed up again this morning while watching cartoons.  I can't keep this girl down!  I'm not about to tell her no after months and months of trying to get her strong enough.

Here is a picture from last night that pretty much sums up our mealtime most nights.  Kendall's foot must always be on the table,   Braden has to always be in a picture, and someone put a Cheeto in my drink.

Have a great weekend.  Kendall and I go back down to Cincinnati on Monday to have stitches removed.  Please pray she tolerates it well.

Love,

Steph

On the mend

Last night was much better for Kendall and for us.  She was only up about 4 times.  She has also been more comfortable today.  At times I can even see her personality coming back out.  I'm still working on increasing her feeds during the day.  I'm stumped as to why she is still throwing them up.

We go back down to Cincinnati on Monday to have her stitches removed.  I haven't quite figured out how much I'm going to tell her neurosurgeon.  He will see her without her brace on during the appointment.  I haven't decided if I'm going to tell him that the brace has become something we put on the couch to keep the dog off or if I'm going to make it sound like she wears it all the time.  I have a few days to decide.

Today Kendall and I needed a shopping trip so we went shoe shopping.  She has been blessed with ridiculously small feet and it is impossible to find sandals that fit her.  Other than that, we have been trying to stay home as much as possible.  If she won't wear her brace, then I'm going to keep her laying flat as long as I can.  I'm sure it doesn't help that she is rolling and twisting all over the floor.  Forcing a toddler to keep her spine straight is just about impossible.

Thank you everyone for your prayers.  I think we may have figured out the dose of medication that is needed.  I think Kendall's surgery took some pressure off of nerves that went to her left leg.  This could be causing all kinds of new sensations, good and bad, in her left leg.  I have noticed that she is a little less sensitive to touch when I play with her foot.  

Shut the front door!!! As I'm typing this, my little squirt just rolled onto her stomach and pushed herself up with her arms.  Here I am talking about keeping her spine straight and she had to go and show me!  We have been working for over a year in therapy at pushing up an she's never been strong enough.  She just pushed up and held it for about 5 seconds and smiled at me then went back down.  Never a dull moment.

Love,

Steph

PS.  I've been working on getting her hair in pig tails for awhile.  Today was the day.  She is in the middle of flipping a wipe around, hence the funny face and white streak in the pic.

Day 3 Post Op

Sorry I was not able to update yesterday.  We were in ICU most of the day and then finally got moved to the floor around 4:30.  The good news is that the less time I have to update this, the better Kendall is doing.  She's ready to be entertained!!
Her pain medication is completely off.  We are just doing an as needed schedule right now.  She hasn't had any fentanyl since yesterday around 4.  She also has her brace.  To say she hates it would be an understatement.  She will raise her arms for me to hold her and when I get her brace to put on, she quickly changes her mind and decides she doesn't want to get up anymore.  It makes it so hard because I want to hold her so bad but I hate putting her through the pain of putting the stupid brace on.  It still needs some adjustments done but the Brace Shop is closed over the weekend.  They may be coming in sometime but most likely it will be Monday.
Here is a video I shot of her post IV valium that we gave her for muscle spasms.  My girl loves her valium.

Last night Kendall slept much better.  Our interruptions were mostly kept to a minimum.  Last night my friend Jill, who lives down here, was able to come and help entertain Kendall while I got the room set up and ate dinner (finally at 9:30)!!  It was a very busy night.  Of course she was up bright and early at 6 this morning.

Braden and Matt are coming down today.  Braden is staying the night at his friend Jesse's house tonight and he is VERY excited about that.  I'm hoping that they will kick up out on Monday.  I can't see why we would need to stay any longer.

If you all could please pray that Kendall becomes more comfortable with the brace, that would be very much appreciated.  Also pray that I become better at getting it on in a timely manner.  It is big, bulky, and uncomfortable.  I think it will definitely cramp our style for the next 6 weeks.  If anyone can learn to manage it, Kendall can.

We also are working hard with Kendall's palliative care doctor to figure out a solution for her frequent screaming at night.  We have taken away a med and added another.  Last night she seemed to be more restful than before.  We won't see the full effects until we get out of this environment, but I'm cautiously optimistic.

Thanks for checking up on us!!

Love,
Steph and Kendall

Post surgery day 1

Overall today Kendall has been a superstar.  We have been pushing her pain button less and less as the day goes on.  Last night was a little rough just because the nurse had to come in quite a bit to give medications and make noise.  Matt had a little heart to heart with her at some point in the night about the frequently loud interruptions and we have since learned we will have a different nurse tonight.  

Today Kendall has been awake for most of the time.  She still is required to lay flat but we can flip her from side to side.  She has been spending quite a bit of time watching her cartoons on net flicks on the iPad.  Thank goodness for technology.  Toys just don't seem to cut it for her like a good episode of Yo Gabba Gabba or Dora.  

Here is a little video I shot of her today while she was being a little more vocal.  She started out the day very quiet and has since started voicing her opinions a little more

Today we also had the brace shop come and fit her for a custom brace.  This involved making a cast of her trunk.  We started with her on her back and then had to flip her to her stomach and mold the back portions.  Needless to say, she didn't' like it very much at all.  She tolerated it with just a quiet whine through it all to remind us that she was not happy about it.  I'm sure tomorrow she will be just as excited for them to put it on and make some last minute adjustments with the saw used for casts.  

Currently we are almost at her regular continuous rate on her tube feedings.  In the past, she has struggled with tolerating her feeds after surgeries.  She usually vomits quite a bit.  I'm not going to jinx myself and declare a victory yet, but so far....so good.  I may just keep her continuous and worry about boluses when we get home.  She always does better at home.  

The plan for now is to keep her on her precedex to give her a little bit of sedation.  Surprisingly with this today, she still had a relatively "normal" schedule.  She took her long afternoon nap and was awake much of the rest of the day.  We will also keep her on the fentanyl.  There was talk of turning off the continuous drip and just letting us push the button when needed.  I always hate to make that change at nighttime though because my fingers don't push buttons during my sleep.  So far, the drip is still on.

Tomorrow at some point, we will go up to the regular floor.  As soon as we are off of the precedex and the fentanyl drip, she can come off of all the monitors.  At least that is my rule, hopefully they agree:)  Her arterial line was also removed today.  She has enjoyed having an arm available to reach for things and play with toys.  For most of the day she was stuck with an IV in her left arm and the A line in her right arm.  When we removed the pressure bandage after it was done bleeding, she then gave us her right arm to have us remove the IV.  We had to gently break the news to her that she wasn't getting that arm free anytime soon.  

So to sum up our day, overall...awesome.  

Thanks for all of the well wishes and prayers!  

Love, Steph

Kendall made it out of surgery around 4.  The surgeon was able to remove all of what was in her spinal column and chase it out a little ways as well.  He commented that the tumor was bigger than what it appeared to be on the scans.  

Everything went picture perfect.  Right now we are in PICU.  She will be here for at least 2 days.  He wants her to lay completely flat for those two days to prevent her spinal fluid from putting pressure on the part where he had to go in.  After PICU, we will move to the neurosurgery floor.  

Right now we are just trying to control her pain.  She has a PCA with a button that we can push every 10 minutes as well as a continuous drip of pain medication.  They are also giving her precedex to keep her slightly sedated so she doesn't want to get up.  

I ended up picking the lucky straw and getting a key to one of the sleep rooms.  Matt will stay in the room with Kendall tonight.  

Thanks everyone for all of the prayers and well wishes.  We truly appreciate them!

Love, 

Steph

Surgery Day

I handed Kendall off to the nurse at 9:30 this morning.  Usually we sit in an induction room and I get to hold her until she falls asleep with the mask.  This time they didn't have an induction room for us and I had to hand her off right outside the OR doors.  Before this happened, the anesthesia team did order some versed for her.  I have to say that she was pretty entertaining after we gave her this.  We got to enjoy Kendall's humor for about 30 minutes before going back.  The surgeon thinks the surgery will last 6-8 hours.  Afterwards, we will go to the ICU for at least 24 hours.  He wants her to lay flat for that time which will require some medications that make her sedated.  She should be extubated though when she comes out of the OR.  

Here is a video of her while she is enjoying her versed.  It just got even better after this.

I'll update more when we get more news from the doctor.  Please pray that everything goes as well as last time.  Pray he is able to close the spinal column without any leaking or difficulty.  

Love,

Steph

How to Pack for the Hospital

After many emergent and planned trips staying inpatient with Kendall, I have learned some invaluable tips that come in handy when packing a suitcase for a lengthy or short hospital stay.  The contents of my suitcase today have changed greatly from the contents of that very first hospital stay when Kendall had the first biopsy.

Let me go back by telling you what I used to pack.  In my warped mind, I thought I had to look put together if I wanted to doctors and nurses to take me seriously.  I have since learned that there is a different way to look put together.  I would pack nice jeans, nice shirts, nice shoes, and separate pajamas.  I would pack a different outfit for every day.  Basically, I would pack like we were going on a vacation.  In my defense, I had never stayed overnight in the hospital, other than to have my children.  After about the 3rd hospital stay, I met a very important person that would highly influence my packing habits.  In a way, she was my hospital style mentor.

So here goes...THIS is the best way to pack for the hospital

1.  Sweat pants are a must.  I'm not talking about the sweatpants that are tapered and elastic at the ankle.  I'm talking about stylish yoga pants.  Just because you are wearing cotton pants, doesn't mean you have to lose your sense of fashion:)  There are a few reasons these pants are a necessity.  First one being that you can pack about 5 of them and when they are dirty, throw them in the washing machines on the floor.(This reminds me, also back scented laundry detergent.  This helps you feel clean, even if you aren't.)  Second, they double as pajamas.  No more packing separate clothes to sleep in.  Emergencies can happen day or night, so you always want be prepared to leave your room and still look slightly put together.  In fact, the entire oufit you wear should be suitable for sleep as well.  The third and most important reason for them, when you sit in the hospital for many days, you tend to start noticing your abdominal region sticking out a little more than usual.  The elastic waistband on sweat pants comes in handy for this.  It leads to less focus on how much weight you are gaining as you sit.

2.  Tshirts with fleece pullovers.  It gets cold in the hospital.  These are a must for winter or summer.  Most likely, you will not go outside for many days so there is no reason to pack based on the weather (remember we are not going on vacation here).  These are also good at hiding the gut that is building from sitting all day.  The benefit of the tshirt is when you go to bed, you just pull off the fleece.  These are also great because you can just throw them in the laundry with everything else.  It is important to buy ones that are a little big because the dryers will shrink them.

3.  Comfy shoes.  I don't recommend wearing tennis shoes.  I find it is easiest to find a slip on shoe the can be taken off easily.  It has to still be a little stylish because you want it to look nice with your sweatpants.  It is also handy because you can keep them next to the bed at night.  If your child needs you quickly, you can just slip them on and run to the bed.  For GOD's SAKE, don't go bare foot.  As a nurse I know where nurses shoes go and what they walk through.  You can scrub the floor all you want with the PDI wipes in the room, but you can't keep those nasty nurse shoes from touching your floor.  You don't want your feet touching any of that. 

4.  Makeup.  Although you don't want to appear to be ready to go out clubbing, it is still nice to look a little put together.  Chances are, things will get stressful.  There will likely be a time where you go a little crazy on one of the nurses or a resident.  If you are wearing a little bit of makeup with your nice sweatpants and fleece pullover, the person who is at the receiving end of your tyrant will most likely just leave the room feeling sorry for you and not calling social services that a mom has lost it.  Makeup can also give the appearance that you have it all together when you spend your entire shower time bawling our eyes out.

5.  Laptop.  This is your only access to the outside world.  It is a must.  It also can come in handy when you need to quickly look something up so that when the doctors come in, you can pretend to know what they are talking about.  Don't make the mistake of sounding too know it all ish..they will see right through that and you will immediately lose respect. 

6. Snacks.  Not the healthy ones either.  You brought the sweatpants so you might as well take advantage of the elastic.  There are many times that things get so busy with doctors and nurses coming in and out that times gets away and you forget to eat a meal.  In cases like these, junk food comes in handy.  Also bring things to eat for breakfast.  You don't want to waste money on buying it everyday.  

7.  Your own pillow and soft blanket.  Even though I am psycho crazy about bedbugs, I have to have these two things.  Sleeping on the hospital pullout is bad enough.  You might as well have a little comfort.  

8.  Your sense of humor.  Things can get mega depressing as you are sitting there staring at your sick kid.  Especially when you read Facebook and hear how perfect everyone else's lives are.  If you fail to pack your sense of humor, you are at risk for looking like a fool.  If you get too caught up in what your situation is, you will fail to notice that you have children on both sides of you that are most likely sicker than yours.  The nurses don't want to come in the room if you are mopey and have the "woe is me" attitude.  They very likely could have just came out of the room of the kid that may not make it through the night.  Keep it light, find  humor in sick things, crack jokes with the doctors, and smile a lot in front of your child.   After all, it's all about them, not you!

3 more days until surgery.

Love,

Steph

Counting Down

We have 9 days until the big day.  Today we went to Kendall's pediatrician to have her ears rechecked and get her pre surgical physical.  Everything checked out fine.  She still isn't sleeping well.  Some nights she is up 10 times, other nights only 4 times.  I'm starting to doubt we will ever figure out how to consistently get her to sleep through the night.  

Kendall and Braden both had an ok Easter.  For the first time since I can remember, we didn't go to church on Easter.  Kendall was up 2,000 times the night before and quite frankly, it was hard to get the motivation to even take a shower the next day.  Braden had a pretty candy free Easter.  The stupid dog decided to jump up on the table and eat every last piece of candy out of both of the baskets.  Now instead of obese, I'm sure she has bumped up to morbidly obese.

  

So, for those that don't know, Kendall's surgery is April 25th.  We will have to be at Cincinnati Children's at 5:30 am.  She is having the same type of surgery she had back in November.  They will go into her lumbar spine and remove the part of her large plexiform that has invaded her spinal column.  Picture removing a leaf off of a tree, this is the best way I can think to describe it.  The tumor is huge and we are only able to remove a very small portion of it.  After her surgery, she will be in the PICU for at least 24 hours.  Last time we were moved out faster than we expected.  As sick as it sounds, I have comfort with her being in the PICU because she has constant care and she is usually sedated enough that I know she is comfortable.  I get my best night's sleep in the hospital when we are in the PICU.  After the PICU we will go to the same floor as we were on last November.  She will probably be there 5-7 days in a perfect world. After the surgery, she will have to wear a brace that keeps her back stabilized.  It will have a hard front and hard back and will be the biggest PAIN!  She has to keep it on at least 6 weeks.  There really should be no difference in her strength once she heals from surgery.  The tumor is pressing on her nerves in her spinal column but it doesn't appear that it is what is causing her left leg to have pain and not work right.

This surgery will be so different from the others.  She is so much more aware of things.  I've actually wondered how to tell her what is going to be happening to her.  If we go to the store, I tell her.  When we go to the doctor, I tell her.   I'm sure I'll figure it out.  I also don't usually take advantage of child life while we are in the hospital.  This time, I'm going to have them come in more with activities.  It's going to be hard to keep her entertained all day long by myself.  

Kendall LOVES to color.  She colors her paper, desk, chair, and body.  Here are a few pictures of what I came back to after leaving her alone for a few minutes.

She also is starting to take interest in the Wii whenever Braden is playing his game.  The rule is, when Braden is playing, Kendall can play too.  The only catch is that we take out the batteries in the remote so that she doesn't turn off the game while Braden is playing.  We learned our lesson the hard way on that.  Her favorite game is Lego Indiana Jones.  Probably too violent for her age, but she's got to get her frustration out somewhere.  

If anyone is interested in getting Kendall something before surgery or after surgery, please consider making a donation to CTF in her name instead.  I promise she will thank you one day.  To get to her page, just click here.  We have a long way to go with our fundraising this year.  I haven't been very motivated to do it lately.  If you live around the Indy area and you are interested in signing up for the walk or the run, please click here.  We are lacking in team members for Kendall's Army.

One more link...if you are interested in seeing the pictures we had taken a few weeks ago, click here.

That is it for now!!  Thanks for the prayers. 

Steph

We are focusing on staying healthy right now as we count down to surgery day on April 25th.  Just one year ago today, we were on our way to the Outer Banks, NC for our family trip before her big surgery on May 12.  We weren't even sure what life today would be like with her.  Today she is not only here, but she is doing great.  This week at her appointment with her developmental therapist, she said 38 words.  Whatever she is lacking in motor skills, she is making up for with cognitive skills.  She's my smarty pants.  I have to say that she has developed quite the little attitude as well.  It is spunky enough to drive me to the edge one second and then have me laughing the next.  It's Kendall's world, we just live here.

I am on heightened alert right now because I'm afraid she is developing something again.  She's been up a lot the past few nights and I'm noticing a few things.  I'm worried she is getting another kidney infection.  I'm hoping it is not and am going to hold of doing anything about it until after the weekend.  I hate to cath her until I'm certain it is needed.

Braden has been on spring break this week.  We have been enjoying having him home with us, although my ear are always tired by noon.  I think he must like to see how many words he can fill each minute with. I took the kids to the Children's Museum yesterday, which is always a nightmare for me.  It's like a breeding ground for weird illnesses.  We went on probably the busiest day in history.  I managed to bribe Braden with a toy from the gift shop and got out of there in under 2 hours.  

A few more good ones of the kids.

She may look like she is eating quite a bit here but pictures can be deceiving.  A few bites in all we get.

Sorry for the hiatus, I just haven't felt like writing much.
Kendall had her MIBG scan today.  We went down to Cincinnati yesterday for the injection.  She had the worst cold she's had in her 19 months here.  I was worried the anesthesiologist would refuse to sedate her with the cold she has, but we were told she should be fine getting the general anesthesia.
Today went ok.  She woke up very grumpy because they had to put the tube down her throat and give her other meds along with the propofol.  She started coughing during the scan so she had to be sedated even further.
We got home this afternoon around 4.  She started vomiting when we were within 5 minutes of home.  Then she spiked a fever of 102.6.  It has come down now with tylenol to 99 but I'm afraid it will creep back up in her sleep.
Surgery is scheduled for April 25th.  She will be in the hospital however long it takes her to recover.  She will then have to wear a hard shelled brace for 6-9 weeks afterwards.  Hopefully it will keep her scoliosis from getting worse with the surgery.  As it stands, she will have to get fusions and rods put in when she gets older due to the severe scoliosis.  We just need to prolong it as much as possible so her body is stronger.
The goal of the surgery is to take another tumor out of her lumbar spine.  It won't all be able to be removed because it extends out into her abdominal cavity.  It will grow back eventually.  All of the other tumors in her spine are small enough now that the risks would be too great to remove them.  She pretty much has them all through her lumbar spine.  It looks like the neurosurgeon will be in our lives as long as Kendall is here.
That's about it for now.
We are currently raising money again like we did last year for our walk.  We will be walking for Kendall since she can't walk for herself.  Please click here to make any donation to our cause.
Thanks,
Steph

Sleep, where or where are you?!

As you can probably tell from the title, Kendall is still not sleeping well at night.  I think she is waking up so much that it is actually effecting her during the day.  In the past, she would stay up until 12:30 or 1 before going down for her afternoon nap.  The past week, she has been asking to go down for a nap by 10:30.

I'm still waiting to hear back from neurosurgery on the date of her surgery.  I'm actually not losing sleep over this.  I'm not too anxious to get this one on the books.  We did get her MIBG scheduled.  It will be on March 20th/21st.  I hope I made the right decision in doing this extra scan.

Here is a video I shot last week while it was warm out.  Kendall loves going outside and riding down the driveway into the street.

Here is another one of her last Friday when we went out for pizza.  If you notice halfway through, she turns towards me and spits everything out.  It was pretty funny watching her pick up that pizza like she eats it everyday.  It is very rare that she takes this kind of an interest in food.  Excuse the over excitement we exhibit here but this is our life with Kendall.  The normal things become the miracles that we live for.

Tonight I took Braden to go see the movie "The Lorax".  I highly recommend it to everyone.  It was heartwarming to say the least.  I have to say that the quote that inspires the movie is one that I needed to hear tonight.  "Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not." 

Love,

Steph

Good News at last!

I got the call about the urine when  I was on my way to work last night.  Her HVA/VMA levels are down.  They are still not normal but they are down!  Down is the way we want them to go.  Up would mean more chemo.

Despite the fact that they are down and it is pretty certain that her cancer is either gone or controlled, the oncologist is still recommending one more MIBG in the next 2 weeks.  AFter that shows now reactive tumors, we will move to urine testing less frequently and MIBG's less frequently.  Matt and I still have to talk about what we want to do.  It is such a hard decision to make.  I'm not 100% convinced she needs the test but I do trust her oncologist.  

I still haven't heard about her cdiff test yet.  I forgot to ask about it last night.  I'm hoping with fingers and toes crossed that it is negative.  I'm a little confident it may be because they would have addressed it last night if it had been positive.  

So overall we have good news to celebrate.  No chemo is always a wonderful thing to hear.  We are also going to start a new medicine to try to help with sleep, and nerve pain.  It may be able to replace a few of her meds and has less harmful side effects.  I have to wait until we go back down to Cincinnati to get it from their pharmacy.

Love,

Steph

Sleep

Kendall has been sleeping horribly.  We have increased her medications again as of last Monday and she hasn't changed at night at all.  If anything, she's even gotten worse.  I finally decided to try melatonin last night.  The palliative care team wanted me to hold off because we all still believe it is more of her being uncomfortable with nerve pain or itching.  I went ahead and did it anyways because we are desperate.  Unfortunately, it seemed to have the opposite effect on Kendall.  It is leaving me stumped because I've never seen anyone react to melatonin like this.  I gave it at 7 pm right before her bedtime.  She went to sleep like normal.  (Going to sleep has never been the problem).  By 9, she was playing in her crib as happy as could be.  I brought her into our bed because I knew she would start screaming and wake up her brother if I didn't.  She didn't go back to sleep until after 10.  She was so excited, happy, playful, funny, and cuddly while she was awake.  I gave her another dose while she was awake, hoping this one would do the trick.  She slept for about 3.5 hours and then was up every hour for the rest of the night.  LOVELY!

I have been picking up a few half shifts at work this week to bank a little extra PTO for her upcoming surgery.  I'm hoping I can survive my full shift tonight and half shift tomorrow night with little sleep from last night.

On another note, her cdiff is back.  I'm not 100% yet but I dropped the stool off at the lab this morning.  I'm still hopeful that it will be negative, although reality is staring me in the face.

I'm waiting on a date for her surgery.  I've requested sometime at the end of April.  My first option would be never but since we have to, April would be nice.  I just want to get her recovered before summer.  Last summer was spent in and out of the hospital.  It would be nice to be able to enjoy a few months with her and Braden together.

Keep your fingers crossed I can survive my work week.  Also pray that Matt survives more sleepless nights.  He is just as exhausted.

Love,
Steph

My Rose in the Rain

Well we made it through her 28th anesthesia with flying colors.  She woke up happy and hilarious.  At one point she had 3 people standing around her bed staring at her and oohing and ahhing over her.  She was as high as a kite.  Luckily she drank some juice right away and so we were able to get to our oncology appointment rather fast.  We made up to the clinic and were only 15 minutes late.
The oncologist came in and told us that there was minimal growth from her tumors.  We haven't gotten final results yet but the preliminary results show anywhere from 1 mm to 3 mm growth.  Doesn't sound like much but when you are comparing it to only 2 months ago and the fact the tumors around vital organs in a very small child, that growth was not what we wanted.  It wasn't all horrible though.  It could have been worse.
We were then told that the neurosurgeon wanted to meet with us to discuss her next surgery.  He went over the results even more in depth with us once we got to his office.  He wants to do surgery in the next couple of months to remove the tumors at the base of her spinal column.  He is worried if we wait too long, there wouldn't be much time between her showing symptoms and it being too late to do anything about it.  The only hold up with this surgery is if her urine levels are elevated again.  In that case then we would have to look at restarting chemo before the surgery.  At that point, surgery would become a minor issue and the chemo would take precedence.  He also talked about doing maintenance chemo after her surgery to try and stop any growth.  There really is nothing they can do though.  Once we do this last surgery, we will have gotten to the last of the tumors we can surgically remove.  Not to mention the fact that these tumors are not removed completely.  She still has tumor outside of her spinal column in the cervical spine and will have tumor left over in lower spine after this next surgery.  This tumor is still growing and will eventually grow back into her spine.
I don't really like the idea of restarting chemo.  I have said from the beginning that my stance on LIFE is quality over quantity.  I'd rather have 5 enjoyable years with her than 10 years where she is constantly sick from chemo, frail, and in pain.  Turns out that I don't have to make that decision right now though.  Today my biggest decision is whether or not I start a load of laundry.  My reality is that my child will die before me.  I can never imagine thinking that about Braden but I have faced reality with Kendall.  In a sense it is freeing because it takes away all of the worry about if she will make it.  I don't imagine her in kindergarten, grade school, or high school.  I just think about today.  You may think this is a negative way to live but I have to tell you it is not.  It is simply freeing.  It shows my true beliefs in what lies after death.  I 100% believe that she will be in a better place.
On another note, her diarrhea has increased 100%.  I'm hoping and praying it is just from her antibiotic.  They have done that to her in the past.  She is still keeping her food down, so that is good news.  For now I am just waiting for the antibiotic to be finished.  If she's still have diarrhea after that then I will retest her stool.  The test is way too expensive to do right now when I know this could possibly be from the antibiotic.
She is also still sleeping horribly.  We are once again working with the palliative care team to tweak her medications.  I'm not too hopeful that the new doses will work but we will see.  Matt and I are beyond tired.  My energy level for Braden is running at about 0.  It makes it so hard to be a fun mom when I'm exhausted mentally, physically, and emotionally.  THe poor kid doesn't get to do anything anymore.

To explain my title.  Kendall is truly my rose during the rainstorm.  She has everything stacked against her. Her insides are just plain ugly with all of her nasty tumors.  Yet, through it all, she continues to be beautiful.  Her smiles inspires me to fight through the storm and keep my eyes on the sun.  No matter what is going on in the rainstorm, the sun is always there just waiting for the chance to peak out.  The clouds will fade away and the sun will shine bright once again on the rose.  The rose will then again grow from the rain and the sun.  Kendall will be healed one day.  God will use the rain to mold her and be the sun that saves her.  Until that day, I will keep looking for the glimpse of the sun to help me through the times of the rain.

Love,
Steph

MRI # ??. Even I Can't Remember this Number Anymore.

Tomorrow is Kendall's big day.  Her formula feeds get shut off at midnight and her clear liquids get shut of at 0600, which is about when we leave.  Tonight we start preparing by taking Braden to a friend's house to stay the night.  Anymore, it isn't even something we talk much about anymore. The day comes, and Matt and I both know our roles in the morning.  We have a routine for packing for all day trips down to Cincinnati. Luckily, this time he is coming with me.  I'm glad because I have a feeling we are going to be making some changes with her care.

I can't really even explain the worry.  I can't even say it is worry.  We know she is full of tumors.  We know her tumors are growing.  We know she needs more surgery.  We just do these scans to appease the doctors and help them determine when she needs her next surgery.  Her oncology doctor is still searching for the cancer.  He will redo the urine test to check for an elevated HVA/VMA, which would again lead him to believe even stronger there is still cancer in her, growing, somewhere.

Kendall's sleep has been worse than in the past.  If I think about her demise from sleeping, it all started about the time she had her surgery to remove her bladder.  In fact, I can say that she has not slept through the night more than I can count on one hand.  On average, she is up about 5 times a night now.  It is not just moaning and fussing, it is screaming so loud like something is immediately wrong.  As soon as we go in and turn her, she is fine.  We are racking our brains trying to figure out a solution.  We have bought her a memory foam pad for her mattress.  We have tweaked her meds.  We have changed the way we do her feeds.  None of it has made a difference.  Part of me wonders if she is having nightmares or is scared when she wakes up.  The last time she slept through the night was when we were in Daytona and her and Matt shared a bed.  Funny thing was that I worried she wouldn't sleep at all while we were there.  Turns out she slept the best while we were there.  So it was either sleeping with Matt or it was the healing nature of the ocean air.  I wish I could test the second theory out right about now, but I don't really think that is possible seeing as we are stuck in cold Indiana.  As far as the first theory goes, we can't really test that out either because our bed is just not big enough for the 3 of us.  I have a feeling that where there is 3 of us, there will eventually be 4.  Braden wouldn't want to miss out on the fun.  Hopefully we can find a new solution to try or an answer as to why she will not sleep.

I thought you might all enjoy this video of Kendall.  Matt made it this morning as I was recovering from my night at work.  You can get a really good view of her left leg and what I am talking about with it.  I have just noticed over the past few days that the left leg is about 1.5 inches longer than her right.  I'm guessing the reason behind this is that all of her blood supply to her left leg is being fed through her plexiform tumors.  This means her legs is getting different hormones and really an entirely different blood than the rest of her body.  Her geneticist warned me that it would be possible for this leg to grow differently.  So I'm picturing her as a teenager with a long leg that she drags behind her.  YIKES!  Another reason why I don't think she needs this leg.  Anyways...this video also shows how she is starting to get around in the kitchen.  She isn't able to scoot the car on the carpet yet.  At this point I'm ready to rip up all of the carpet and just put hard flooring down for her.  My second thought is to just sell the house and start over:)

Please pray that she handles everything well tomorrow.  I'm hoping for a happy awakening from anesthesia.  Also pray that we come back with some good solutions for her sleep.  The urine will take a few weeks to come back so we will not hear right away on that.  We will probably get results from her MRI at our oncology appointment at 2:30.  They are usually pretty fast.  Once they told me we would have to wait a day and I just laughed.  Next minute we had the results.  I love Cincinnati Children's.  Worst case would be the following day for results.

Thanks for all of the prayers!

Love,
Steph