Clinic Update March

Thought I would post an update on Ally and our (lengthy) clinic visit yesterday.  After doing two blood draws (the first one clotted and was unusable) I got the results of her blood counts when I arrived back home.  Everything looked good (no blasts) but some of her numbers were a little lower than usual.  Hemoglobin was down a bit 11.7, and platelets were down a lot (136).  This of course sends me into a panic.  Her platelets hadn't dropped below 215 or so for about the last 15 months.  Even while doing maintenance chemo.  Her WBC was ok and her ANC still hovering about 3500 so the nurse tells me not to worry.  Easier said than done, but I am trying to turn it all over to God and just keep marching on.  I just can't figure out a reason as to why theses numbers would go down. I wish I had gotten the results while still in clinic so I could talk to Dr B who always has the immense responsibility for calming me down.  He got quite a dose of me already yesterday (crying, which I normally try not to do!)

I guess I am just a bit down about everything.  Of course, I am upset about my friends diagnosis mentioned on here last time.  I know that everyone is different but it has proven to stir up the fear in us that we try to push away.  For instance, my thought pattern is that whatever caused this to happen to Caulin...is it going to make it come back in Ally?!!  I also know that noone can give me the answer to this.  But of course I had to talk to Dr B about it all.  His reponse (in his sweet Southern tone) "Janel, the chances of this coming back in Ally are very low"  Me:  "Really, OK.  Wait, how low?"  Dr B:  "there is a less than 20% chance it will come back....we have to get thru two more years and it goes even lower"  Me: feeling black wave come over my eyes..."20% is HIGH"...more tears....medical student in room handing me box of Kleenex"  Just another day at the office.  These doctors have to be so strong as they guide us through the unknown. 

Prior to this discussion, we talked about the fact that Ally has been off treatment for 5-6 months.  I was kind of hoping by this point that all of the medicine would be out of her system and our lives would be much like normal again.  However we are still dealing with the fact that Ally can't sleep 3-4 nights a week.  Of course, waking us everytime.  After talking to a hospital psychologist, we deemed we were doing everything right with bedtime routines, no caffeine, white noise, etc....so again we just have to accept it and hope she relearns her sleeping patterns like a baby would.  I am not sure how to do this with a 10 year old.  It is not like I have a baby in there and I can just let her cry it out. 

And then there is the larger issue of her weight gain.  So frustrating.  She continues to gain a pound or 2 a month.  Up about 20 lbs since summer.  I am telling you we limit her on everything.  We try so hard.  We know what to do.  She does TaeKwondo twice a week.  She gets on the treadmill several times a week and does some weights, situps, pushups etc.  We were told that this is not enough.  Now we have to go to no snacks between meals, no 2nd helpings, etc, no treats....and also sign her up for something more exercise related.  REALLY?  It woudn't be so bad except we already do so much for this issue and never see any results.  Then Dr B added in the fact that unfortunately she has a short mother. Hah! And she doesn't have much growing time left.  I feel bad because I feel like she has my crappy genes on this one. 

All of this being said....I KNOW that I am the lucky one.  I still have my child here with me today.  I have dealt with much worse issues and I know lots of kids that are experiencing much worse side effects than us.  It just gets so frustrating for me because I know she has been through so much and I just want her to be able to eat and sleep like a normal kid and not have to talk to her everyday about this stuff. 

Sorry this is so long and probably not too exciting to read.  I just continue on with the story....

Here is Ally!  This is about a month before she was diagnosed at Easter....she was seven.

And Here is Ally!  The other day....her friend Alex straightened her hair and I thought this is pretty much what she used to look like before diagnosis.  Her hair used to be straight as a board.  (but she still prefers it curly)

 

And thank you so much to all of Ally's Army for embracing the Booher family.  I see tons of comments on their blog from my peeps all over the United States!  Thank you for continuing to encourage them and envelop both these kids in prayers.  No words can express my gratitude!

 

One more prayer request this week.  One of our extended family members, Aunt Fay, has found out that her cancer has come back.  She is now having trouble getting the medicine that she needs to fight her particular kind of cancer.  She has been a huge part of Ally's Army...they fought the battle at the same time...we are thinking of you Aunt Fay (and Aunt Joyce!) and love you all.  Please say a prayer for her too!

Asking Ally's Army for Prayers.....

Well this is certainly one post that I never thought I would have to write.  It has taken me quite some time to even gather the words in my mind and my heart to put this one on paper.  We received the devastating news that our best friend's son, Caulin Booher, has ALL leukemia.  Just. Like. Ally.  I am sure many, if not all, of you recognize the name from multiple blog entries.  Remember my Family of 13?  The two families who picked up all the slack for me when Ally was going through her intense chemotherapy.  That's the Boohers.  They helped me every step of the way.  Arranged meals, watched kids, PRAYED with us, they even sold the Ally's Army bracelets for us that many of you wore.  My Mom had just died and then with Ally's diagnosis...well my friends basically picked up all the pieces for me.  They live just a few doors away.

This is Caulin shaving his head for Ally. He did it without hesitation. The before...He is in green shirt.

 And after, in the back....

I have know Caulin since the day he was born.  Celebrated numerous holidays...vacations.. birthdays...first and last days of school....summer breaks...trips to the lake...you name it.  Jerad and I were saying he is about as close to us as our own child without being our child.  Heck my kids even call HIS grandparents...Grandma and Grandpa Booher.

I have no words for this one.  We are all shaken up.  I keep reminding myself that the statistic is that 3 out of every 100,000 kids get ALL.  How can this happen?  I think in my mind I still think it has to be a mistake.  You could fill OSU's stadium with kids...and only 3 would have it.  It cannot be a coincidence.

Caulin's Mom Suzanne asked me to forward on his blog information.  All that she keeps asking for is prayers for their boy.  She wants as many as she can get.  I know a lot of my cancer family and extended family still read this blog.  So please, please, please, I am begging my Army once again to pray for this boy that we love we much.  Prayers did wonderful things for Ally.  I am asking all of Ally's Army to now become Caulin's Army, or Caulin's Crew...or whatever they decide for his group to be.  And keep the faith.

We are all in this together.  Fighting childhood cancer.  We have to just continue to fight for those we love.  Fight for Caulin to go into remission.  Fight for Ally that she remain in remission.    And for all the other fighters out there...keep on!

Here is his caring bridge site (think you do need to set up a password)....
http://www.caringbridge.org/visit/caulinbooher

Our commercials

I am sorry to our out of town family (and non-facebook Army members)...took me a whole week to get this up here.  But these are the commercials that we did for Dayton Children's.

This is the one that is Jerad and I and Dr B.  So glad they didn't use my words because I found that I completely froze up when having to talk to an inanimate object (camera)  Luckily Jerad pulled through and did his part in 1 or 2 takes.  vs. my 18.  Think I will stick to the blog.

I was completely amazed how many people saw these.  They played during the Superbowl and I guess maybe that is the only time of year people don't fast forward through commercials.  I have random people I have never met saying stuff to me.  We were at the hospital the next day and they were all the buzz.

I do have to say I was quite proud of these.  Not really for any profound thing that we said just because our friends at CMC thought we were worthy enough to share our experience.  I feel a huge debt to them that I can never repay in anyway.  They saved my child's life.  So I am always trying to find a way to pay it back to them even if it is something small like this.

So here ya go:
First one is shorter version.  I also learned Dayton Children's is in the top 11 of pediatric cancer hospitals in the country.  Our small town should be so proud.

This is the longer one and our story is towards the end.

Finally, the reason Ally was at the hospital on Monday was to start her testing for the long term side effects.  Several chemos are hard on the heart.  They got a base echo and ekg the day she was diagnosed.  So now we were gonna get our first look almost three years later.  Dr Ross (our favorite) checked her out.  He is married to one of Ally's favorite nurses in the clinic.  I thought all was fine until he thought he saw a plastic piece of her port tubing still in her artery.  UH...yea lets get that out.  So we had to do some additional chest x-rays and wait for a very painful hour with her asking me...how will they get it out...do I have to have surgery again??!!....and me just praying for about an hour straight.  Turned out to be OK.  It was some scar tissue that basically grew around the port tubing since her port was in so long  (2 years 7 months!)  He said they would watch it and it will dissipate in time.  Her other heart tests just showed some very mild changes and he said we have nothing to worry about for the time being.  They will keep checking her every year.

Thanks for those of you still praying for our girl!

Clinic Visit and Dayton Children's Commercial

Ally had her monthly visit with Dr Broxson today.  This was her first visit EVER without a port.  No antibiotic infusions, no port flushing....just a blood test and a thorough check-up.  Now that she doesn't have the port, we have to go to the lab first and she gets a blood draw.  Not a big deal for her though...I am happy to report all her numbers remain in a good range!  Her ANC is now above 4000 and we are seeing numbers we have never seen before on her hemoglobin.  She did suffer much of the month with a headache, but Dr B attributed a lot of it just to the cruddy weather/sinuses/and other typical stuff. 

What I didn't know was that today we would meet with the nurse director of what they call the "Long Term Care clinic".  Ally will go to this clinic 5 years from now, when she is 15 years old to be monitored for all the of the long term side effects of her chemotherapy and radiation.  For the next five years we just continue to see Dr. B.  You would think as a mother that I would know a lot about these side effects, and I do know some of the basic things.  BUT I have honestly been putting it out of my mind for a long while now.  It sounds ludacris, and the "old Janel" would never have not looked ahead...but for so long we just had to get to the next thing...the next step.  I had to just make the climb one rung at a time, if you will.  I kind of knew that this "talk" would be coming soon though and today was the day.

So they showed me yet another big binder that they have prepared for us.  This one being the "off therapy" binder.  Inside, is a road map of all the cumulative chemotherapy and radiation that Ally has been given.  They take each drug....add up all that she got over the 28 months of each one and give us a cumulative total.  And from that, you can kind of see where her risks are. 

1)  Risks to her heart.  They are going to do an ekg soon and then every two years probably til she is 25
2)  Infertility, ovarian damage....this one hurts me.  They do think her risks are low on this, but the risk is there.
3)  Cataracts
4)  Bladder/Liver Damage (from all the chemo running through it)
5)  Secondary Cancers
6)  Post traumatic emotional issues ( I think I have this one)
7)  Comprehension/focus issues.  Trouble with school, etc  (this one is from the radiation doses)  This one scares me and can crop up at any time.  I will say that the girl works very hard and has straight A's the last two quarters for which I am super proud considering all she has been through.
8)  Brain tumor (20% chance of this.  sigh)
9)  Osteoporosis (bone thinning) ....she already has signs of this one and thus the broken arm.  She will have Dexa Scans to evaluate this. 

hmmmm.  So it is a lot for me to take in and think about.  We just started feeling a tiny bit of relief after having a few good blood tests, but then we are quickly sprung back into the world of childhood cancer and all the things that it has robbed from us.  And how we will keep going to Dayton Children's for about 15 more years.  Even as an "adult" she will go to their long term care clinic.  It's good....it's amazing and wonderful that we have gotten to this point, but I still feel anger over the fact that it has happened in the first place.  And will pretty much affect her entire life!!  (and mine!)

Spending time at Dayton Childrens is what we do best!  Jerad and I were just interviewed for a new commercial for the hospital.  They made three new commercials.  I think it was one for the NICU....one for trauma...and we were, you guessed it, the long term care family.  The commercial will be Jerad and I and Dr B!  Wow it was super hard.  I found it way harder to talk to a "camera" than to talk to a live audience.  You would think it would be opposite.  I felt like a robot and I am scared it will come off that way on TV.  I will try to post it here but look for it to air either during the Superbowl (eeeeeeeek) or else during American Idol.  Well anyway, I did the best I could and continue to try to make a difference and an impact using Ally's story. 

Here we are filming in front of the green screen!



I even got some make-up touch ups (thank you for that!)



Thanks to all who still check in our girl and continue to pray for her to have a long life of health! 

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Update

2012.  A whole new year and a brand new clean slate.  While most people are grumbling about the cold and snow (which I love) and healthy eating and everything else that typically goes along with the month of January....I am sitting in my comfy chair and warm house enjoying the month.  I actually love January! December gets so hectic and busy and but in January there is not much else to do so I get to REST.

For our family, I am pretty much thinking that is is our new normal.  I know that chemo ended three months ago...but then we had all that celebrating concerning that.  And then the holidays.  And then the port came out and it just didn't quite seem like our former lives.  But now it does.  A new normal indeed.  Still plagued with chemo side effects (not sleeping...belly pain....still present) and still punctuated everyday with prayers sent up that our girl's leukemia will never come back.  And still learning how to live without my Mom.  You would think I would have it by now, but I don't.  But this is normal now.

Four years ago, in January, we found out about Mom's cancer. My sister reminded me the other day how I had that sinking feeling when I put my Christmas decorations away that year.  I knew.  I just did.  We spent much of the month in surgeries and driving back and forth to the Cleveland Clinic.  I realize how long it has been that we have been battling cancer when I remember that Carly was a little baby then.  Only six months old.  And now I am starting to look into where to send my baby girl to Kindergarten.  Although much is lost, there is noone more grateful than me and my little family.  So grateful to start a new year now.  So grateful to have finally taken off my LIVESTRONG bracelet because I finally said..."we are no longer battling cancer"  (Ally's Army bracelet...not sure I can ever take that off)

So here is to hoping that 2012 is a good year.  I love having a little extra time to watch a TV show or look at things online or even clean out a drawer if I want to.  I really and truly have not had time to do these things for a very long time.

Ally is doing good with her arm.  She is getting used to it and it is completely covered with signatures from all her friends and Army.  We go back on the 24th to see if it is healed and if she can get the itchy cast off.  One more thing to add to her list of "I have done that"

She brought home some artwork she did at school.  They had to design something around their name...like a biography of their life.  It was quite interesting to see hers...especially next to other kids who have things like soccer, basketball, or friends defining their life.  No...here is Ally's:  Livestrong, Hope, Faith, Ally's Army, truth, and relentless covering much of her design.

But our old neighbors and friends, who moved on to be the Bball coach at Clemson...well they will be happy to know that they earned a big spot on her design.  Go Tigers.

Ally's artwork.



Happy, HAPPY, 2012 and may everyone be blessed with health this year!

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Oh No!

YES.  'Tis True.  Just 5 days after her surgery, she was just starting to feel like she could move again.  She has been pretty faithfully "working out"....which she does to try to get her strength back . She still suffers from horrible ankle pain.  Anyway, she was bouncing on top of one of those large exercise balls.  Her brother was right next to her bouncing way too high on his exercise ball.  Next thing we knew, he had kicked her ball out from under her and she was flying backwards only to catch herself with her arms.  She immediately started screaming and crying.  Jerad and I were both right there and saw it happen.  And I immediately felt a pit in my stomach.  We always worry about her breaking a bone doing something.  28 months of steroids has made her bones very weak and brittle.  We knew that.  We iced her arm immediately and wrapped it in an ace bandage all night.  We didn't take her in....figuring orthopedic would be closed (it was evening) and we would have to wait anyway.  She could move it also, which made us feel better. 

 

Fast forward to the next morning.  She had been up several times during the night in pain and it wasn't get any better.  I called her old pediatrician figuring this was a "non cancer" related issue.  And they couldn't get her in with him that day.  UGH.  Seriously. (Who does this when you say your child broke her arm?)  So I called down to Dr B and he just ordered up an x-ray taking my word for it.  Less than an hour later we knew she had fractured her arm.  About 3-4 inches above her hand, and luckily the break was also above the growth plate which can be tricky.  She knew right away that she was choosing an orange cast for Ally's Army!  The cast will be on 3-4 weeks.  The radiologist did let us know that her bones are especially weak and thin and he wanted her to keep drinking her milk and also continue exercising.  The only thing that can help her bones build back up. We did have to pull her out of the basketball league that was due to start Saturday.  She was disappointed, but we kinda took this as a sign that she wasn't ready anyway.  And it's pretty hard to play piano with a hand in the cast too.  But she is gonna keep doing modified Taekwondo. 

 

To us a broken arm is no big deal . We can handle it.  After everything we have been through, this is small potatoes.  There is one annoying part...We don't mention this part....but Ally pretty much never sleeps all night.  Maybe once a week she sleeps through the night.  It is like having a baby.  She has insomnia a lot (also from the steroids...HATE those) and she repeatedly gets up and then wakes her Dad up to "help her get back to sleep."  We had almost reached the end of our rope with this...because we can't really help her sleep anyway.  It is so frustrating that there are so many things we just can't fix.  Just one more aspect of childhood cancer that I hate. So now to add salt to our wounds....last night I think she was up six times.  Itchy cast!!!  And of course she woke her Dad  to try to stick stuff down the cast and scratch her arm.  Holy cow.  

 

So here's hoping to more sleep!  And a healed arm. 

Surgery Day

Happy New Year 2012!  I would now like to get up on my rooftop and scream this for all the world to hear.  We got the results from her bone marrow test:

No evidence of leukemia.  No evidence of relapse. 

I repeat:  No evidence of leukemia.  No evidence of relapse. 

Here she is right before she went into surgery.  You will see Bobo.  She also has her little bird porty.  This the bird she picked out at the gift shop about an hour before her port went in.  I remember feeling so so so so bad for her.  I pretty much told her she could buy the whole store.  She picked out this little bird and named him Porty.  Right after they put the port in, Porty would sit right under her shirt and protect her from any bumps or whatever.  She was so sensitive about that port.  She even slept with Porty in her shirt. 

And then sweet Miss Vicki brought her the lucky ladybug to wish her luck with the bone marrow test.  And it worked!

Here she is after.  A little puffy and groggy, but I am telling you the girl was a trooper.  The same girl who threw a giant tantrum over her flu shot never cried a single tear all the day at the hospital. 


Here is the incision.  About three inches.  They also did the bone marrow in her hip bone.  Those steri strips hold her together until it heals and then they fall right off.



And here she is resting (with Bobo).  My sweet little girl I could not resist taking this picture. 

And this is her actual port!  She asked if she could bring it home and her surgeon let us!  He even cleaned it all up for us.  It laid underneath her skin so we could never see it.  But the nurses would access her right in the blue spot in the middle.  The chemo would then travel down that white tube which went right down an artery into her heart.  Then the blood would pump out of her heart and distribute the chemo or meds throughout her body.  What an amazing invention and one that saved my daughter's life.  I am not sure what I should do with this now, but I am glad that we have it. 

 

The news was awesome to hear.  I waited on hold for about 10 minutes the next day to hear the results.  I could almost not breathe because I was so nervous and anxious to hear the news.  I know this does not mean she is "cured" by their definition.  We can't get to that point until five years out.  But it is a giant victory to us to go three whole months without chemo and still be cancer free.  They will continue to check her blood counts every single month.  For the first time in almost three years her hemoglobin was high (normal is 11-14 and she was 14.9.....she was 4 when diagnosed)

 

Another dear friend said to me.....do you know that this is the first time in four years that you are not actively fighting cancer???  Wow...I had not even thought of that!!!  Four years is a long time.  Especially when it is your mother and your daughter.  I will take this new life.  Bring on 2012 and a normal life for my family of five. 

 

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